I’ve been trapped in a haze of malnutrition for many years either eating too little or eating too much blunting the feelings of overwhelming anxiety that drown me. I cannot comprehend what is driving this behaviour, I’ve been told before this admission that I COULDN’T quite possibly have an Eating Disorder because I didn’t have a fear of fatness. Truth of the matter is I was just lying and in serious denial. I am driven by a desire to be thin which has further frustrated and alienated me, so I did stop believing in trying to get help. The diagnosis of Anorexia with Binge-Purge Subtype has saw me struggle so much, as it has served its function as not a way to intentionally lose weight to begin with but rather to feel in control of my anxiety and the world in general. In fact, if it was possible to under-eat or over-eat without losing weight, I would do it.
I’ve never known how to properly control my emotions, when I was younger I hid them deep down inside without letting them go or talking about them (still to this day bottling them up, then erupting like a vulcano). I let my emotions eat me up inside, which I know is a big reason why my Eating Disorder developed. Maybe if I had known how to deal with my emotions mentally, and had of been able to express them, I probably wouldn’t be going down the path I am now.
“Showing your emotions is a sign of strength”
Although I don’t always show it I have many difficulties understanding and interpreting social cues, and tend to fixate on tiny details that make it difficult to see the bigger picture. What’s more fixating is the craving for rules, routines and rituals. I think I started turning towards food around the age of 14. It was a way for me to cope with my depression. I was active as a teenager but I’d always end up binge eating or drinking alcohol when I didn’t feel good about myself or not eating at all to experience that feeling of emptiness and pure loneliness. Looking back now, I know that bingeing, drinking and not eating properly damaged me in many ways — but at the time I was only ever trying to make myself feel better.
There was always pressure. It doesn’t matter if you’re a boy or a girl, simply going to school or being involved in group sports came with its own added pressures. Everybody wants to fit in somewhere. We’re all trying to change to fit in better, and to figure out who we are. While I was going through school, I was never overweight or anything but I felt had some extra weight on me due to playing Football. I often made a lot of jokes about it (thunder thighs, roles of fat) to the take pressure off what I thought others might be thinking. When I think about it now, I was never bullied about my weight (just my hair colour & always with the boys playing football) I was just my own biggest bully. It was my own expectations for myself that ended up being completely destructive.
“Your weight is not your worth”
I believe a lot of my Eating Disorder developed because of the sporting environment and school pressures. It made you think you need to look a certain way, and that if you don’t you’re going to be judged. It has created this horrible state of mind that I am now stuck in.If I had been able to express my feelings or seek help without feeling like my peers were judging me for something that wasn’t my fault, this might not have developed. I’ll be first to admit now I got very scared and held it in. You never know if it was just something that was on the cards – something that I had to overcome in my life to grow into the person I am today but the most important discovery is that it isn’t my fault. A lot of the traumatic stuff that has happened to me in my life and the feelings I have developed i’ve let it take control over me which lead me to believe that it was in-fact my fault. Being in recovery now, I am learning how to let things go, realising that someone else’s choices are not a reflection of me and that I don’t have to let their choices control me.
Even the positive traits with Autism that I may have, such as a strong will and determination, can be hijacked to fuel my Eating Disorder. I am someone who’s very determined, who sets my mind on something and doesn’t budge from my cause, which can play into something more sinister. My behaviours on the Autism spectrum fall into this category which include food cravings, food refusalsand, particularly, a limited diet.
“Life has become a state of sensory overload”
It’s all about routine and ritual. Either I eat all the time and release the emotion via vomiting, or I don’t eat and starve myself to feel that sense of emptiness. I have highly selective eating requirements and am very sensitive to textures, look, smell, of foods. The five main tastes are; sweetness, sourness, saltiness, bitterness and savouriness, Reasonably simple? In principle, yes, but in reality food literally has a life of its own. An apple ‘should’ be sweet, but it can be watery. Tomatoes can be sweet or sour or savoury depending on their ripeness and type. This has always been difficult to explain because I will have lashings of tomato sauce but then I’m not be able to eat a tomato based dish because of the causes of experience during and after. There is anticipation in my tongue, even when I am about to eat something that I love, I don’t know quite what it will taste like until I have tried it. As well as tastes there are textures; I find soft foods really hard to sense in my mouth. There are no edges, no spatial boundaries that enable me to work out where it is and what I need to do with it. It’s really easy for me to turn a blind eye if I have these sorts of foods, which means its very tiring to try and coordinate every single mouthful from intake to swallowing.
“I wish people knew that my mental health is physical to”
To hide this has been extremely difficult and comes with a huge sense of embarrassment as no-one knows no-one has ever picked up on it when it occurs. Generally, I prefer meals that I have a much better sense of where the food is, and also feel more connected to; If I am connected to the food, this makes it safer to me and easier for me to eat, which is why I prefer to cook so I know exactly what goes in. There’s too much diversity in taste and texture and it becomes an overwhelming chore. Flavours, textures and methods of eating mean that simple combinations of foods are much more accessible. I’ve tried to train my teeth to make even bites and mouthfuls but they won’t. There’s always a risk I’ll end up with a huge mouthful I can’t manage, or bits of food will fall out. I probably sound like an atrocious eater. I’m not the most coordinated at home, but that doesn’t matter because I’m in my own environment and can eat the foods I am comfortable with in the way that I need, with the people I love without it being noticed or questioned. Where as now I hate where I am eating and who I’m surrounded by which makes it harder for me to complete this process so I’m like the speediest eater you ever did meet just to remove myself from the situation. The aspect of sitting with others while eating can also be difficult at times. This can include oral struggles, such as chewing and swallowing, as well as gastrointestinal problems which can make eating a non-pleasurable experience.
I have built a repertoire of foods I am more comfortable with, that are less challenging to my brain and tongue. I think this is reasonably broad, although others find it surprising I can have the same over and over again. But it’s not the same meal to me as it will always taste and feel a bit different while I am eating it. And even if it didn’t, what’s wrong with sticking to things I feel comfortable with? When I’m having a really anxious day, the last thing I need is to heap more stress on my head by challenging myself. Don’t judge my level of diversity against yours, but understand how much of an adventure each mealtime is even with exactly the same ingredients.
“Your life is your story, write well edit often”
This is not the end of the challenges I have being Autistic because when it comes to eating, there are also many other autistic quirk related factors which play a role in this unhealthy relationship and with the obsessive personality playing havoc. The thought process is always difficult when it comes to food whether it be; The food eaten, who is there?, when will it take place?, what time?, what will be seen?, what will be smelt? what is going to happen after?, basically anything and everything I’ll be thinking of and you become stuck in this vicious cycle of a thought pattern.
“Autism is not a processing error, it’s a different operating system”
Autism is characterized by restricted, repetitive or stereotyped behaviour. For me I like to do the same thing in patterns each day, and get very distressed when this schedule is disrupted. Even my OCD of doing or applying everything in 3’s is a strong characteristic. For example; I do my hair 3 times a day even if its not out of place or I’m going to bed or the compulsive spraying of perfume and body spray using 3 squirts at a time. My characteristics of Autism/OCD are similar to the traits that I have when referring to my Eating Disorder.
I take longer to process information and answer questions; so allowing me time to respond is most beneficial because i’ve always been a sucker for the finer details; those seemingly insignificant pieces that build the bigger picture. Focusing on these pieces can be tiring and time-consuming, but diverts my attention to the insecurities I have with my body and drives my need for control over my body. An inability to just consider the bigger picture makes me impulsive and reckless. Being Autistic hyper-focuses and hones in on specifics as a way to avoid confusion and prevent me from becoming overwhelmed and that is how I have learned to cope with this. The reality is had I have spoken up sooner and seeked help this may never have materialised in to the disorder it is today.
“The secret of your success is hidden in your daily routine”
It’s the rules and routines that I depend on for a sense of stability adding for this to develop and happen gradually, over time, and it developed long before I had even recognised it and now it’s got to the point of not knowing how to let go. I feel like the rules, the routine, the ritual, are always in the back of my mind, even if they’re diminished sometimes, it’s very hard to break that mindset. It impacts my daily life, and I’m physically & mentally unwell. I just need to keep believing that I can still lead a fulfilling happy life and achieve lots of the things I want to, it just might mean that you have to know your limits and plan carefully and that it is possible to get better and be happy.
I have a lot of support on the outside but what I don’t want people to expect is for me to get better overnight, because it’s a work in progress everyday. There are many things that trigger my Eating Disorder, and there’s a lot of pressure that goes with trying to recover from one. We all need to eat to survive so the pressure is 24/7 for me because all I do at the moment is Eat, Sleep & Repeat. So if I do become disassociated just take a step back. Don’t push. Encourage everyday to be honest and open, be there to support every step of the way and most importantly just please don’t give up on me. Being able to express myself and not hide my true feelings is an accomplishment and a huge step I want to take moving towards having a successful life so thank you to my nearest and dearest for your patience. I do still have a very long way to go, the recovery process is quite intense but just know I am in the safest of hands unravelling everything to help get to the root cause and if that means being here a year then so be it. I want to walk out these doors fully recovered and not looking back but looking forward to the future!
My first post has had an amazing response the messages and comments of support have been rather overwhelming and it has allowed me to see that I need to stop feeling ashamed for what has been going on for a very long time and too stop destroying myself by defining what i cant do, and what normal people can do, and instead accepting myself for who I am and that it is OKAY to just be me. Eventually all these struggles will turn out to be the strength that’s needed to take the next stages in my life. It was such a big step for me and a bit of a risk to actually pluck up the courage to post this as of a way of sharing with those closest to me and to those who may or not know me. I’ve been deliberating for a while if I should, or shouldn’t as I have been so busy documenting and writing everything down whilst in hospital. Since being home and having more setbacks it felt like the appropriate time to share and help people along the way and most of all me to write down what I’m feeling. Which leads me to part of the recovery phase and all things to do with my physical & mental health from Gastro Symptoms which I have been experiencing since 2016/17. This also includes some quite entertaining stories along with the people who I met along the way and were vital in keeping me going at what was a very low time in my life.
“Hospitals; where they provide a bed for you, but don’t let you sleep”
So if your ready… begin (PS it’s another long one). On Saturday 29th June I was taken into hospital via Ambulance due to what has evolved over the last few years having taking a bit of a turn for the worst which saw me admitted for the duration of 19 whole days till the 17th July. The second visit shortly followed after only a week of being home and was admitted again from the 26th July-30th July. Just recently the same thing happened again which saw 3 weeks at home and then another drop in my levels leading to another admission on Tuesday 20th August – Wednesday 28th August.
The drastic change in my weight from 11st6lb to 6st5lbs upon admission along with the persistent vomiting which happens daily saw a very severe drop in my levels of Potassium, Electrolytes and Vitamins of which I soon found out play a vital part in keeping your body ticking and I developed a severe case of Hypokalemia on all three occasions. During the first admission I was also suffering heavily with Tonsillitis and an inner ear infection which I was unable to shake off with antibiotics due to my immune system being completely non existent. The days leading up to admission often consisted of being unable to move out of bed, eat or drink and having severe muscle spasms and seizure type feelings within my hands and feet. Mum and Dad made the joint decision both times to phone for an ambulance and the other was from a recent blood test result from my doctor which lead to me making my own way to A&E and it was from here on in where the many different opinions of doctors awaited!!!
“Sometimes the right thing for one person, is the wrong thing for someone else”
The vomiting has become so severe and has been constant and present for at least a year or more now. I believe through not being diagnosed for a whole year and half after all these symptoms first began it just seemed to get worse over time and has sadly become embedded as the norm. The normal routine of eating, feeling sick and being sick. With being one to thrive off routine in everyday life, vomiting has now become part of that daily routine for me and if that doesn’t happen, I become very anxious and scared of the food that I have put inside me and what it’s actually doing to me. In my head all food now resembles is being sick and that all food is bad for me? Because when you’ve been told you cant eat this or that and to trial and error this and see how you get on is quite the unknown experience when your sitting and waiting for the outcome to see if your okay or not.
I do now naturally think the worst at every giving opportunity, I have become so negative in every day situations that I’m just not much fun to be around so I isolate myself so my nearest and dearest don’t become offended of my current mood. It does sound bloody stupid I know, but reality is when you go through something for a very long time without being given the correct help and nutrition along with having medication constantly changed you honestly don’t know whether you coming or going and the last thing you want to do is eat when you already have this vision of the outcome as you have seen it countless times from seeing your sick staring back at you from the toilet.
“Sometimes it’s not what you eat, but what you are not eating”
I have periods of not eating and restricting my intake which occur quite frequently as it’s like what is the point in being sick after eating? many would agree I am sure.. I’ve just got so sick and tired of being sick and tired! It is exhausting mentally and physically and the constant battle with my brain on coaching myself in to seeing that it’s okay to eat is even more draining than eating itself. The mind is so powerful and has just taken over this whole thing by the scruff of neck and each day there feels like there is something different to contend with.
I have come to realise that you do in fact need to try and eat to stay well, but what to eat is the next question? Knowing how much my stomach has shrunk in size and pretty much gone back to the size of a baby again due to being starved I know the process is an extremely slow one to getting it built back up to what it once was, but some days you will talk yourself in to wanting to eat normally because you feel you should be able to and that is something I have found very difficult to accept and will still often try to eat normally just to try and teach myself into telling my brain that it is okay to eat. All that seems to of done though is create a lot of thinking time on planning around meals where in fact it should just be a normal task and process to eat meals and not have to worry about the outcome.
For me the negative thoughts surrounding food are now so strong and always there that I’m sick without any force it just comes flying out all undigested right there in front of me, to the point there is absolutely nothing left but pure acidic bile burning right the way up which gives off extreme heart burn and chest pain. I have never once made myself sick it just seems to be free flowing after any consumption of food or large amounts of fluid due to the bloat, cramps and early satiety which leaves me feeling so uncomfortable to the point I feel like I’m going to pop!
I don’t know of anyone that likes being sick? I for one have always been that person who see’s sick and will be sick because I’m literally petrified of the sight of it, so it’s never just a one time thing throwing up because the more you see sick the more you be sick. I literally end up getting so worked up and angry because I don’t want anything in me to the point the pain is strong that is associated with it makes me feel sick to the point I am physically sick. I do now try and eliminate all food from my body by drinking 3 glasses of water throughout the time I’m vomiting to make sure that nothing else is left inside me because I simply don’t like it being in there.
I cannot describe why or how this happens, it simply just does and over the space of the last two years it has become increasingly difficult to control. My brain is completely frazzled at how disgustingly weird all of this is and I’m at that point of beginning to realise I need to reach out for help but for what help I need I really have no idea. As for me and my family it is something we fail to understand why and how it has happened.
I don’t even haven normal bowel habits and often can go up to 9-10 days with out going because what’s going in isn’t coming out, therefore it will come up as the saying goes. People ask me all the time what is it like not to shit? and tbh there is no other way of saying it than you just get the feeling and discomfort like its going to come out like a mud slide but every time you think it’s there its always a false alarm! But you have to push so hard because it feels like Mr Turtle head is about to drop but the strain leads you to passing out as the starvation of oxygen you put yourself through due to being in complete agony when ever you try to go. Even the concoction of laxatives isn’t enough to even be able to go either!!
All of this seems so logical to me because I’m the one that is experiencing all of these symptoms but to others it wont be logical at all and most likely very hard to understand. For me however it is now a thought process and pattern I physically cannot control and with not being one to feel confident enough to open up about all these thoughts and feelings and what’s really going on in the head of Jod, I have just learned to cope and deal with it all on my own and in my own unique way to still be able appear to everybody else that everything is in fact fine.
But infact we all know most people that suffer with mental health, confidence issues or anxiety in general have a hard job in trusting people as you often worry about peoples perceptions and judgement of you which often than not makes you feel worse with a massive sense of shame and guilt. For me it is so so hard to be that bigger person and speak up but as time has moved on I have started to realise that there is only so much hiding behind a smile and secrecy and lies that surround your situation can be hidden. Cracks almost immediately come to light and it’s increasingly difficult to gain control over everything. The lies are all just a cover up because of feelings of shame and embarrassment of how this has all ended up when everything was at it’s peak.
I for one didn’t chose this, nor do I still want to be feeling like this, but for whatever reason the mind is overruling every decision at the moment and it is increasingly difficult to complete those every day tasks that people take for granted. I thought by just telling my Mum and Dad and those who I see often that I’m only sick a couple of times through out the week would be enough to hide the amount of times I actually was but with the frailness of my skin and bones and having to order kids sized clothes and everybody being able to see on the outside that everything is far from okay.
Being underweight has become a focus point for everyone now and its very frustrating because I feel helpless in the current situation I find myself in and don’t actually see a way out of it. I now have a fear of putting on weight because again more people will make judgement and start a new topic of conversation and I quite frankly don’t want to be talked about. The past few months i have tried to change my mindset to put on as much weight as possible so that being underweight isn’t the topic of conversation only trouble being to begin eating was the only way around this.. with now having such a big fear and awful perception of food it has been a challenge to try and train my brain to start fresh. The best way I thought of going about this new perception would be to persevere and push through the pain and go back to eating normally and appearing to gradually eat larger amounts than before because I felt that this was what was needed for everyone around me to feel happy, because if they could start to see I was beginning to eat well again and appear like everything was getting better then my weight would soon begin to fluctuate upwards rather than down.
Sadly that idea didn’t work out as best as I hoped because I began eating so much, so quickly infact just so the food in front of me would disappear just as quickly as it enters because of the fear I now have around food. With the phobia towards sick being so strong after every consumption of food I literally begin to sweat and become increasingly clammy but a feeling of being absolutely freezing cold, along with having heart palpitations because of being so anxious that what is inside me, was going to do to me to the point I work myself up so much leading me to of course be sick.
I am currently now at the most unhappiest stage of all because it has progressed so rapidly that consuming all that food after going so long without, and feeling most comfortable when I’m completely empty but continuing to eat just to get it over and done with just because of feeling the need to please as well as the fear!! I have at times found myself at the “pleasing people stage” by eating more regularly for them and to try and gain as much weight as possible for them. The strain I have now put on my small fragile stomach and my mind that is constantly playing tricks on me with the symptoms which are also more prominent are now at an all time high, more than ever before because almost anything that enters my system now what ever the amount, size or form, healthy or unhealthy is naturally vomited back out through the anxiety and fear of food.
To me It feels like I am the only one who knows what is going on, but to my body and what others can see it’s definitely not the case. I have taken the impact head on not only physcologically, but physically and emotionally as well as depriving my body from what it needs to function properly and find myself very malnourished and struggling to get through each day due to the extreme tiredness. Watching TV is now something I struggle to enjoy for the pure fact I cannot concentrate and just end up falling asleep.
The worst part of it all though is that it fills me with such guilt and shame that I wasn’t strong enough to be able to tell anybody sooner? Because of a sense of embarrassment and disappointment that I once again bring to my family. I’ve always seemed to be the one that has caused a lot of hurt and upset through actions I have had no control over and I just wanted to protect my Mum and Dad from all of that so they don’t end up blaming themselves. Being very stubborn also doesn’t help as I feel like this is my problem and of that problem I must fix on my own, without relying on other people! But sometimes pushing people away and being on your own is a recipe for disaster as the negativity towards yourself doesn’t stop and certainly doesn’t just disappear and you end up completely self-defeated to the point you no longer want to be here. I have had this thought on several occasions but each time, something has stopped that from happening because deep down you realise there are infact people out there who do care and are there for you when you need them and simply calling on them for help isn’t a bad thing because that’s what friends and family are there for.
“The smell of Hospitals, If you know you know”
Hypokalemia; has seen me not once, not twice but three occasions be admitted to hospital. My Potassium and the all important electrolytes for nerve and muscle cell functioning were at a reading of 1.0, 1.9, 2.2 when a normal reading is of 3.5 and above. It is vitally important that these levels are kept in the normal range to allow the muscle cells in the heart to pump properly rather than being so overworked to the point your body goes into shut down.
Each time visiting A&E I was soon moved on to the Emergency Assessment Department which treated you for the diagnosis and made arrangements for you to go to the correct ward for further monitoring. My time in here was a bit of a shock, the amount of people who were of old age, carrying breathing problems, dementia, water infections and forms of sepsis from cellulitis in those who were Bariatric patients was literally off the scale people were constantly coming and going it never stopped. I felt like I didn’t belong here at all, I was running on zero sleep for a lot of the days, just because there was people like Barbara who was a classic liar and would often chuck water over herself through numerous parts of the day and say she didn’t mean to.
Brenda couldn’t breath unless she had a Darth vadar mask on but when it came off she was demanding her chocolate eclair cakes from the fridge and insisted on telling everyone that all 3 were for her and no body else.
Jean was so confused to the point she hated everyone, even her husband and ex husband were on the hit list of being killed it was honestly filled with pure craziness the whole time and I just laid there people watching as you do in Hospitals!
I think if the nurses could step back and watch they would because they were completely rushed of their feet the whole time trying to get medication out on time, health care assistants were making sure everyone had some kind of care even though certain patients took up a lot of there time!!! It was interesting to watch but at the same time completely exhausting as you just wondered how on earth these people can do that job for 12hrs a-day with hardly any breaks!! Some did it with absolute ease and patience along with a sense of humour and care that went above and beyond which repelled with their excellent bedside manner. Some on the other hand may as well not bothered turning up as they were that bloody miserable and trust me when I say there is a lot of people who are in the wrong job and when your feeling unwell you really don’t need someone moping around like its a chore that there having to look after you.
The Doctors on the other hand who came round before I departed were very helpful and listened to my current situation and started to throw round the diagnosis of a type of Eating Disorder and that its good that I was now starting to see this after the understanding it had now progressed to this too even though the “Criteria” wasn’t matching up to those of Anorexia or Bulimia. Which of course is true I don’t make myself sick so it’s not Bulimia, by being underweight it doesn’t make it Anorexia because I know I’m not fat. For me it wasn’t about meeting any criteria or having a label for a specific diagnosis, we all know that no two people are the same or can be treated the same as each case is individual but you know yourself better than anyone that you require HELP to be able to move forward. I knew full well that I needed help physcologically to help with this perception and anxiety that has now built up around food as well as breaking the cycle of going to be sick straight away after any consumption of food along with the negative thought patterns that come with it.
I knew that the label wouldn’t change anything but for me it was the only way to get the help I so desperately needed. Help off the right professionals so that I could conquer this head on and get back to living my life normally and enjoying waking up everyday ready for the day ahead. The more you read up on it you do to start to believe you have an Eating Disorder because the problem is with food. I thought it and so did my Mum and Dad after seeing my current state and with previous tests and tablets given for my the diagnosis of Slow Transit, Functional Dyspepsia and Acid Re-flux with those tablets that didn’t seem to shift any of the symptoms so after them saying they have found and done all they could I now felt that it all must be in my head? So it is an Eating Disorder.
Each time I was admitted I was transferred to WARD 3!!! I may add Lorraine the nurse told me how lovely it was hahhahah! Bloody bitch lied didn’t she! I put that aside though as she was honestly so lovely and looked after me during my time in EADU and gave me nothing but support from the moment I arrived in her care. The porter came for me and took me to Ward 3 – Bay 5 and the first person who greeted me was the one and only mad Maureen she certainly didn’t know the meaning of sleep or personal space but had a love for fruit cake and biscuits as her bedside table was like an all you can eat buffet!! Only then did I realise the empty bed that was for me was right next to hers!!!! It was around 10:30pm and she was wondering round like she owned the place whilst everyone else tried to sleep, but the lovely lady next to me piped up and said I hope you have got some ear plugs as it is a very noisy stay!!!! Maureen had been there for 12 whole weeks and she left on the same day as me on my second visit on the 30th July shouting “BYE BYE YOU SCUM BAGS” as she left for her care home haha! I think the staff and people like myself who actually spent a lot of time with her were actually sad to see her go.
I was always the youngest patient on the ward and the setting I found myself in was just generally horrendous! There was a different consultant each week, which of course lead to differences in opinion and the treatment that they believed to be beneficial. It was always repeated to me everyday when the Consultant and Junior Doctors (Flock of sheep) came round was that I would be seeing someone from an Eating Disorder Team, A Dietitian and be moved Gastro consultancy from Cromer to here at the James Paget. All sounds very promising right? but then they throw out the word OUTPATIENT which we all know means one long arse wait on your return home out of here!! A wait I knew I would be unable to manage seeing as it was already coming up for a week. Tears of frustration and sadness of being in this environment and away from home filled your head each day. Without those closest who visited and made my bay feel like home by giving me some much needed motivation to look at the positive of being in hospital with it being the right place to be in order to get better.
“Good people don’t have to say there good people, it just shows”
For me I thought the Hospital trip would be a patch up and go home jobby, but really its turned into a long gruelling three months that lasted longer than I ever imagined. I was very inpatient and exhausted and the sleepless nights didn’t end here. The smell of shit often wafted through the bay and I soon became in charge of the air freshener which I kept down the side of my bed ready for evacuation each time the smell hit you. Around 5x a day to be precise! You can imagine how much air freshener was used throughout my stay although towards the end the smell of ocean breeze wasn’t enough to cover up the stench that filled the room!
I made great friends with my next door neighbour Linda who was to my left. The day she was discharged left me feeling rather emotional, as we kept each other going and often spoke during the middle of the night and put the world to rights along with offering words of support to get us through our time in here. It was like I had lost my left arm she radiated strength and courage through her own ordeal and always made sure I was okay and to not have her there was very strange as you soon become very close when your with somebody for 24hours a day!! We exchanged numbers and have been in contact ever since, she even came back to visit me once she returned home with her partner to see how I was doing and to give me a card and some liquorice to try and help me shit haha!!
I was quite nervous at who would come next as I was just hoping for someone that I would still be able to talk too. The next arrival came and it was the cutest little old dear called Kathleen who was 93!!!!! yes 93 and still going strong! I don’t know what it was that made me deserve good people to my left but it was a real blessing!! Kathleen was partially death and needed some assistance every now then even though she didn’t want it as she was such an independent little lady but I soon found myself in full conversation with Kath throughout the day and had regular chats with her visiting Niece who often bought in home baked brownies and essential oils to spray on our pillows for when the dreaded smell of shit came hahha!! Kath was in for an infection caused by kidney stones and was offered an operation to remove them but due to her age there was always risks involved but on the other hand they said she would keep ending up in hospital as antibiotics don’t last forever If she didn’t have it. You could see how scared she was and was totally against having it done, but with a slight persuasion and mention of her beloved greyhound Meg and her lovely garden that still need her attention she said those words I”LL BE BRAVE and she took the risk and had the operation done the following week. I got updates that she is now safely back home doing all the things she loves after many of whats app from her Niece including photos of her out and about.
Bay 5 did however come with someone you’d rather not socialise your self with, and Emma was that person she loved to air her problems out loud so that everybody could hear, she basically was the queen of diva fever along with being a nosey parker who wanted the ins and outs of your story to see if they compared to hers!! Quite early on I took a great disliking to her, maybe it was my mistake for cheering as she got wheeled up because someone younger had entered the ward, karma was certainly a bitch here!!! I’m not normally one to start an argument across the room in a public place at somebody of who I don’t even know but she just kept on and on at me!! It made me so angry because for someone who is supposedly so poorly and blaming the hospital for her gastric bypass that failed her and comparing my problems to hers and that I should ask for the tablets she takes because they work for her was enough for me to explode!! Simply because no one on this earth is the same person. That’s when I came back from the toilet after cooling off to find I’d been moved to Bay 4 and not gonna lie it couldn’t have come at a better time!!!
I set up camp again for the 3rd time and felt a bit more at home when I arrived on the ward with what you could only describe as normal sane grannies, Sheila and Jean were my favourites we instantly got chatting and would be having conversations with one another throughout the day, the friendship they had already formed was so sweet, so sweet to the point they even said good night to each other every night it made me smile so much and it wasn’t even towards me but just a general check in and out goes a long way when your in there I’m telling ya!! I often met Sheila and her family at one of the shelters outside the hospital where we all sat round and had a crafty fag and listened to each others stories, it soon became a tradition and we often raced down in our wheel chairs every night, and returned to the ward late laughing and joking like we were school kids who were late for class! Sheilas family were honestly so lovely and on our last night together we sat out in the shelters for one last time in our chairs with a portion of chips from Gorleston seafront which her son collected and bought back for us all to share and we went back to the ward for one last time and said are goodbyes!
“If you don’t step forward, you step back”
The second stay saw me back with mad Maureen and although she had Dementia she greeted me with “Hello Pet, back again in this wonderful hotel” I laughed and said I am indeed but a week went by back in each others company, vacating out of the building on the same day hoping to never return again.
After two weeks at home with no real plan in place and being passed from pillar to post from different clinics regarding an Eating Disorder but still not meeting that certain criteria after an assessment you again felt like what does it actually take to get some help? You’ve practically shouted from the roof tops to get it, poured your heart at to a lot of strangers who are the professionals, ended up in hospital basically on deaths door to be knocked back time and time again because you don’t meet the criteria because of not having a distorted body image, I don’t make myself sick, and I do eat, but with my BMI being at 14 it was to low for the service of who I was referred to. The charity Eating Matters decided they were unable to work with me and referred me back to the NHS Community Eating Disorder team at Northgate Hospital for which rejected my doctors first referral because I wasn’t presenting typical Eating Disorder characteristics. Now that my BMI is on the downward spiral they had no choice but to offer an assessment and it was from here on in that I was finally being given the opportunity to get the help I need in order to move forward at long long last!!!!!!
“Time to let go of guilt and shame”
My assessment came round on Thursday 15th August and I was met by one of the Clinical Nurses and a Psychiatrist who are part of the Eating Disorder team. It lasted 2 hours it was exhausting, once again I found myself pouring my heart out to yet another set of strangers in another unfamiliar setting and I’m not going to lie I think I cried the whole way through like you do when you cut up an onion and accidentally rub your eye, like it was bad real bad, but I came away knowing that I had been completely honest and taken that huge step in allowing people in who are going to be there and stick around to help. I felt that I had been listened to and was reassured before I left that I would now be under their care for the foreseeable and a plan of action would be made going forward working with a whole variety of people to get the correct help and care.
I kid you not they stuck to there word!!!! The following day I had a phone call with an appointment for a blood test on the Monday along with an ECG to check my levels of potassium and rhythm of my heart. The next day at 6:30AM I had a call to say that I need to present myself to the hospital due to my Potassium levels being dangerously low featuring at 1.9!!! It was the moment I feared that once again that I was having to go back, to a place which practically did nothing that they said they would once again a load of false promises. Still I had not seen a dietitian, or got a date with Dr Badreldin the Gastro Consultant although they said I would receive a follow up appointment as soon as I had the Nasogastric tube fitted down my nose and into my throat to measure the PH/Acidity levels on Monday 5th August. I still hadn’t heard a dicky bird!! So I did end up calling and managed to get an appointment for the 12th September but of course that was a long way off when at the time you need something pretty sharpish, as being here again for the third time you knew what to expect. I for one knew the daily routine from the minute you wake up to the moment you head of to sleep and sounds weird but it kinda of felt like a second home. Some where safe and protective that if anything was to happen you were in the best place with people who see it on a daily basis and our trained to deal with that kind of stuff, where as at home no parent should have to sit and watch their child practically waste away right in front of them. For me being in hospital it felt like I had taken that pressure off them and as weird as that may seem having round the clock care, plenty of rest, a strict fluid, diet and stool chart and tablets given at set times and having the famous 3’s of 3 meals a day all at set times through out the day. It was a routine that some what worked well for me, and that I felt comfortable with. At home everyone around you still has to get on with there daily life so I did become fairly isolated as there was no structure to my own day as I was just to tired to function and I was always surrounded by negative thoughts and feelings towards myself and food. As well as forgetting to take my tablets at regular intervals and then end up taking them all in one go because you think that will make up for not taking them. In reality trying to function on tablets that cause a serious amount of drowsiness and dizziness really isn’t a wise move as doing the simplest of tasks proves to be very difficult. Just getting out of bed for a wee is like a manoeuvre of someone who has been blindfolded and putting their hands out to touch things to get your bearings to keep yourself up right. There is also the constant reminder and nagging of when to eat and what to eat and everyday it is a constant battle so you end up just eating for the sake of it and forcing yourself to eat really quickly just to make up for what you haven’t had. But with the fear I have towards food I become increasingly panicky, angry and frustrated to the point I feel sick and work myself up so much that I am sick. I even now get to the point where it often gets stuck as my Esophagus is very sore so I now have to 3 glasses of water to help move it along to ensure it is all out and that all the fear has left me feeling empty. It’s just become a habit, a weird one to even understand everyday to me I think I am the most weirdest human on the planet but to the CEDS team (Community Eating Disorder Service) its something they deal a lot with and understand it from start to finish. My stay from the 20th August-28th August was made to feel very worthwhile as a team of two came every single day Monday-Friday!! This was to help support the doctors on how best to handle my care, a slot time with a dietitian and support and guidance from themselves to ensure that I could see a clear pathway to getting better.
Each day however I was presented with one person from the team I had met along with a different person of which to begin with I found quite difficult as all I feel I’ve done recently is repeat myself and honestly it’s quite a touchy subject one of which I don’t feel comfortable in sharing especially round a hospital bed with a curtain closed… but yet people around you can still bloody here!!!! So some days I held back a lot of stuff just because I didn’t feel ready or comfortable to share. But by the end of the week I believe I had met everyone from the team and I felt assured by there knowledge and understanding that I was in the right hands to kicking this up the arse!!!
On Friday 23rd August I was told I could go home providing a blood test came back normal. I had my bloods done but after lunch It suddenly hit me that I was going to have to go back home, and start all over again on my own, lose that round the clock care, the medication trolley that came round at set times, along with days of complete rest and it was with that all consuming my head of how negative home now feels that I suffered my first panic attack. I became sweaty, but felt cold, my heart was beating so fast and my head began to spin and what I had for lunch was flying out of me and it was at this point I had an unwitnessed fall in the bathroom where I was found completely sparko with sick still in my mouth. I don’t remember to much other than I was panicking and freaking out and being sick all at the same time and as soon as the head got a wave of dizziness that was it I just remember waking up the next morning thinking what on earth had happened!!!! I have never had anything of the sort and It was very scary the fact I had been completely out of it whilst they tried to take blood but couldn’t find a vain as I was so cold, I had a CT Scan for the drowsiness of where I fell and hit my head, I even had my bed changed twice because I was vomiting without even realising all over my bed and in my hair!!! YES MY HAIR! The morning when I woke up I thought Id be in ten rounds with MIKE TYSON and broken my wrist!! I couldn’t move my hand it felt broken, but it was severely bruised from the several failed attempts to get blood. I had crusty hair and the smell of vomit was very prominent looking down at my old skoool FILA top I could see and smell the stained blob that covered the left hand side of what was my new favourite WHITE t-shirt. Along with a drip being back in it’s place to give me the fluid I needed once again for the drop in potassium levels. So yes that’s what the word going home did to me!!! Just thinking about it and writing this makes me sound like a crazy lunatic but my mind is now completely overpowered with these thoughts that I honestly have no control what so ever.
This did mean I now had to stay in hospital a tad longer to be monitored and assessed to ensure I was fitter enough to go home. I believe that the CEDS team along with the doctors, nurses and HCA’s noticed that for that to happen something needed to be put in place to ensure I felt safe and well enough to cope at home. This is when everybody came together and from here on in where I have started to become more positive each day. For the pure fact I now have a team of people all singing from the same hymn sheet, who all talk, who all know me as a person. Something that I haven’t had the whole two years of going through this. When in Hospital I was visited by an Autism Specialist and Mental Health Worker which has continued on the outside with home visits. The CEDS team have designed this whole process to tailor my needs and are literally so on top of everything and provide weekly home visits and appointments at Northgate Hospital with there Clinical team and access to Doctors and Psychiatrists to ensure the best treatment and support is put in place so I can see a clear pathway of moving forward.
It has only been a week but already just by talking to the relevant people who work in this field and specialise in Eating and other Mental Health Issues I now fully believe that there is a way out of this hole I’m in. That moment came when I was given the correct diagnosis of AFRID which is an Avoidant Food Restrictive Intake Disorder and Emetophobia along with the OCD which has become very extreme obsession for quite some time. It has now become apparent that the OCD is now playing quite a dominant role in all of this because for example everything I pretty much do has to be done in 3’s its like become a repeated pattern that I must not do or not it can feel like the end of the world and the anxiety and frustration of not completing it is not a very nice feeling. So for example I wash my hair with x2 lots of shampoo, 1 Conditioner all staying on for 3 minutes at a time. I will then dry my hair and section off 3 parts drying each side for 3 minutes before changing over, the same then comes with the straighteners with the sectioning of 3 parts straightening each side for 3 minutes at a time before applying the hair spray to set it into place. Next up is the 3 sprays of deodorant followed by 3 sprays of body spray and then finishing with 3 squirts of perfume!! Then there is the 3 minutess of brushing the teeth instead of two as well the careful preparation that goes into selecting an outfit making sure everything is matching and that the shoes follow the colour of the items above. It really does take up a lot time and I will often lose the concept of time if I am due to be somewhere as this does take priority over anything and although it is exhausting if I don’t do it, it does feel like the end of the world and that something bad will happen to me for not carrying out this routine that I have done for a very long time.
I have listed links below the following diagnosis’s because for some people just having me explain it isn’t enough to understand especially when I am still learning about it myself and processing the challenge ahead to beat this and come out the other side; healthier, happier and most of all smiling without it being fake!
I’m telling you now though there is some good people in this world, even if in the strangest of places and one of which you don’t want to be in but it is what it is and if it wasn’t for these people the experience your going through wouldn’t be the same.
So as of now I will be taking the time to… Love, Respect, Admire, Forgive, Nurture and Accept myself and take everyone who has stuck by me and supported me on this journey with me because reality is no one can do it alone and it’s okay to lean on people and ask for help when you truly need it and those people don’t mind that when they care so much for your safety and well being!!
“Believe in yourself and all that you are. Know that there is something inside you that is greater than any obstacle.”
I’m Jody Wells aged 24, who’s joined the world of blogging to explain my personal journey around my physical and mental health… how it started, what help I have received and the recovery journey that is continuing now. There is part of this blog that for those closest will find a tough read but for me opening up and speaking face to face is something I find very difficult doing so this felt the best way to start to allow people to enter and take a step into what it’s really been like for me and how it’s still effecting me in the here and now. It starts from the beginning with the different triggers and traumas and how over time it has developed to what’s happening now! So if your ready to begin… here it goes!
For along time I have suffered with Clinical depression, a form of Autism, Anxiety & OCD along with finding it extremely difficult dealing with Grief all from a very young age. Since the age off Eleven I have ignored these feelings and shied myself away behind a very bubbly, hard faced character who was and still is afraid of letting anyone see the struggle behind the smile.
Growing up through school was never easy it was full of enormous ups and downs. I was bullied for my hair colour and often made fun of for playing football with the boys and being more of a lad than a girl, which often made me feel quite isolated as I struggled to cope with confrontation. Within the classroom, I would often be removed for being rude, not completing the work set out because I didn’t understand, and some days I would just avoid turning up altogether as I built up so much anxiety before even entering the room along with struggling to cope with the large capacity of people. I felt like I didn’t belong anywhere, and knew that the first sign of trouble would always be blamed on me and I became very frustrated and angry towards school because no one seemed to understand. I felt unsafe and felt trapped in any situation I was put in and throughout my time at Elm Tree Middle and the transitioning to high school it only ever got worse.
Both Kirkley High & Sir John Leman were only interested in the high achievers and the school’s reputation as a whole and that was very obvious to see when constantly being tarnished as a “little shit” and that my upbringing from my parents was the cause of my behaviour? That was something I was never able to brush off as anyone who knows me and my family properly would know that is far from the truth. They are nothing but supportive, and always have my best interests at heart and literally do whatever they can to get you the help you need.
But would you believe, it took a year of being at High School with multiple exclusions, reports, meetings, managed moves and in the end Permanent Exclusions for us to be listened too and finally given the support and alternative provision I actually needed to succeed. That’s where Old Warren House Pupil Referral Unit can take all the praise for the way they quickly dealt with my needs, got hands on with the route of the problem and basically simplified everything in an small calming setting with a proper routine in place to allow my learning to finally take place. They used my strengths adapted to my needs, work was able to completed on the computer, which for me was the best thing as I found it very difficult to write as i was scared to make a mistake, but here I barely remember picking up a pen or pencil but when I did; if I did make a mistake it didn’t even matter, even asking for HELP was okay, they wanted you to tell them the problem, talk about how it makes you feel and why? and honestly that was the most weirdest overwhelming feeling in the world; going from being at school everyday feeling anxious about the day ahead, having such low self esteem and always having outbursts of violence and meltdowns when unable to complete tasks and unable to communicate and express emotion in a way people can understand the problem, to then being surrounded by loads of teachers & people who respected you and appreciated your differences and only wanted to help you achieve what you are capable of and worked with you on a more one to one level.. For me it was the best outcome especially after being given the boot from a mainstream school. Hand on heart I can honestly say without the superb support from the staff here and all the outside agencies working together I probably wouldn’t be here! I literally had zero respect for myself let alone anyone else, I abused alcohol and drunk most days just to numb the pain, which often bought out my violent side and caused my relationship with friends to break down because of it. To those people who were caught in that crossfire and had to be apart of that I am sorry. If I could change the way I was feeling and how I dealt with situations I would in a heart beat as nobody deserved to take the brunt of my actions.
I was continuously told that there wasn’t a lot going for me; I started to believe it too, I had the picture of FAILURE right in front of me every minute of every passing day,.. Except behind all that negativity that people built and of which I built up myself there actually was something…
“For the love of Sport”
From the Age of 5 I have been heavily involved with football, whether it be within a Boys team or Girls team. Without even realizing I was happy to be involved with all of it, nothing phased me, no anxiety, no stress, just enjoying the game you love with the ball at your feet, if you know you know how satisfying that actually is! I played at some of the best clubs and met some truly wonderful people of who I’m still in contact with, as there the only friends I managed to keep hold of; Waveney Youth, Mutford, Swanton Herons, Bohemians, Lowestoft, Kirkley & Pakefield, Acle and now my favorite of all Bungay. The proudest achievement however has to be being involved with the Norwich City Girls Centre of Excellence Program from the age of 8-16 where i gained a better understanding of the game, confidence and friendships that were like no other. It even bought success when looking for my first job and it was here at Norwich City CSF where I was accepted on an Apprenticeship as Youth Training Sports Coach; where I accomplished my FA Level 1 & 2 Coaching Badges and various other coaching qualifications which saw me expand my knowledge and gain an NVQ Level 2 award in Sport & Active Leadership.. Would I thought this would of been possible? Would I have met these goals by myself? No way. I did at times make the mistake of relying on my own understanding, but when I turned to other resources, including my parents, family, friends & coaches and work colleagues, I gained the wisdom I needed to accomplish the goals I was striving for.
Growing up with football though has always been very special to me and been an integral part in keeping me on the straight and narrow and making me who I am today! It has seen me meet some incredible humans who have become friends for life, some on the other hand I’m very glad to see the back of. I loved and still love every minute of football because when your out on that pitch or coaching your troubles just disappear and your focus shifts to what’s in front of you. The people who surround you are more than just teammates though, it’s like having a separate family, the bond you have is something that lasts forever and for me that’s very important as normally friendships are very short lived or more difficult to handle because I’m just not good at dealing with large circles of friends.
Of course football is not always hunky dory and it has come at a price with some real highs and awful lows the one being the hardest to come back from was the Brain Contusion I suffered which saw me unable to play again unless I wore a skull cap. It was hard to accept at first after practically being forced to be centre of attention, the name calling of Petr Cech & Helmet Head were often the first thing you heard and believe me that’s hard to block out when the heat fills the hat and exhaustion kicks in an awful lot quicker and you feel like you’re going to pass out from being too hot. It really was unbearable and with it also being very hard to hear, I often became frustrated and often resulted in a mini tantrum or coming off because I couldn’t perform how I knew I could!! After a year or so it just became a normal part of the routine, and with people now being more accepting of that too I finally learnt it was okay and accepted it too. I now referred to myself as an official HELMET HEAD!
Whether it is playing or coaching the people I have met along the way have been vital in keeping me on the right path and although I may be no longer able to play at this moment in time, I have been given the opportunity to manage and coach my first ever ladies team which is a massive honor considering I’ve only ever done a youth setup. Which for me was a massive highlight and success after taking on the Kirkley & Pakefield Sapphires @ U12s I made some incredible friendships with players and parents and people at the club and was apart of something very special which reminded me of what it was like for me growing up with football. It was the kind of team where everyone had an impact on each other and all of the girls I was lucky enough to coach impacted me and made it a very memorable 5 years.
I was always shown nothing but support and appreciation towards me and that’s continued to be the same since joining Bungay Town Ladies in 2018 and it is here where I have slowly regained my confidence and enjoy the game I love with the people I love and to continue the most important beloved routine of Sunday’s being made for football!! It may sound stupid and a very bold statement but it’s the best feeling waking up and knowing your going to football, seeing all your friends and most all of all being proudly associated with a club who thrives off togetherness and team spirit and everyone playing for enjoyment. I have made the bestest of friends who have been nothing but patient, understanding, respectful and showed me the upmost of support and allowed me to never be without a smile and laughter. It’s so hard to come by in day to day life for me right now but football days and football people have a special way of making that happen.
Bungay Town Ladies – A place to play for all
“Coming together is a beginning, Keeping together is progress, Working together is success”
“To have a great career, be a risk taker”
I joined the world of work from the age of 16 and have always worked hard so that I can have the luxuries of trainers and cars to have something to show for what I have put my hard earned money towards. Football created a lot of pathways for me, and I always had the dream of being in a role with big responsibility to really get my teeth into and be able to inspire people with my story. That’s when I took the risk and quit my job at Norwich City before even having an interview and being offered the job at my old Primary School Dell – it was from here on in that I realised you can achieve anything if you really want it and hard work and preparation will pay off and for me it did! I got the job, I started the new term in September 2013 just after my 18th Birthday and I literally found myself at home! The staff were truly amazing, fun, friendly, positive and all had one thing in common and that was “All for the Children” whether it be teaching, encouraging, instructing, mentoring, influencing, guiding or inspiring everyone was for the good of the kids! The support I received was incredible, the relationships I developed with staff, pupils and parents was on another level, everyday for 4 years I felt like I was doing what I set out to achieve and that’s inspire through my love of sport. I had the best time and some would say “Living My Best Life” sadly all good things come to an end and when the school became an academy and began to provide alternative provision for PE I was somehow left sinking, thinking how is it possible to come into work and no longer have your position? When the person who is now in charge has never even spoken to you or seen you teach for that matter? But yet all the staff and pupils appreciated you? The parents praised you? And then suddenly just like that all that hard work and long working days of building up the rapport, the extra-curricular clubs, the planning and preparation all for someone to come in and take it away just like that! All because they only care about themselves, and money! Not what they’re about to rip away from someone, something that is the driving force in their life, because it certainly was mine! I was so angry and had a lot of hatred towards one person. Although the uproar was still happening I still had to go into work, I may live at home but there is still bills to pay, and money that is required to enjoy doing the things you love and pay for the car you drive. So leaving wasn’t really an option as I still needed the job and an income until something else came up. I noticed that I started to become increasingly stressed, and felt a loss of control and it got to the point where it completely broke me. I thought I was done with being misunderstood and fighting for acceptance and a sense of belonging but I was wrong! Yet again it had happened to me and it was this point in my life I believe to be another trigger point for the struggles I’m now facing!
I did manage to get out and move onto working at a Pupil Referral Unit for 5-7yr olds to try and avoid the disappointment that my previous job had left me in but after a couple of months I felt like this wasn’t the best thing for me to be going into! It was challenging, although it was like looking at mini me with how some of them behaved it also filled me with a lot of sadness that there only the age of 5-7 and have already been failed by the education system. I worked closely with a number of pupils but for them there routine was implemented very well each day they knew what they were doing. For me on the other hand working between an upstairs class and downstairs I didn’t actually feel like I was in a routine it was so jumbled, stuff changed from one day to the next and the work was just as hard for them as it was me. I honestly felt like I didn’t belong in the role and was failing being the appropriate role model. My colleagues were always reassuring and told me how well I was doing but for me it wasn’t natural, I was forcing myself to do something I felt incapable of delivering, and I have always been on the wave length if you can’t do it yourself how can you teach it to others? The anxiety and stress built up along with the grief I was still having from the passing of Grandad Geoff and it soon became apparent along with a lot of sickness and tiredness/fatigue that sooner or later this would have to come to an end. I put up a fight though as I wanted to make it work, I didn’t want to let these kids down or the people I worked with and myself for just throwing the towel in because my head was saying naaaa! I stuck at it, pushed through the barriers and some days did overcome and achieve small gains and satisfaction in my role but it was over the summer holidays of 2017 where it took an unexpected turn for the worst!
“All great changes are preceded by CHAOS”
A family Holiday to Gran Canaria in August 2017 brought to my attention the fact that something wasn’t quite right, the holiday meant for relaxing and spending time with Family after a long term soon became a total nightmare! Spending time confined to your hotel room, being sick on and off for the whole week, having to find constant shade, avoiding eating or eating very little and just wanting to be in the comfort of your own home, but being so far away that it was not possible. Normally I’m that typicl brit on holiday who cries when it’s time to come home instead I wanted nothing more to be than in the comfort of my own home. When we finally arrived home the first trip was to the doctors, as you know something’s not right when it is so persistent.
The repeated vomiting showed no sign of stopping, and the thought of continuing at work First Base PRU was already looking like it would prove to be difficult. Working at the unit with children with Emotional/Social Behavioral difficulties you always needed to be at your best otherwise everyone would pick up on it, that being the kids or staff. A couple of weeks being back in the new term things certainly became too much and the lack of food intake and fluid soon took its toll and I was left unable to work. I was too exhausted to cope with the work load on top of feeling constantly tired, sick and enduring constant stomach pain. I returned to the doctors and was put on Sick leave for several months whilst i underwent a referral to a Gastroentologist. The doctor put in an urgent request at different hospitals and give them time to contact me and whoever made the first move she said to go with. The choices were JPH, N&N or Cromer and surprise surprise the furthest away was the one to come up first. In desperate times calls for desperate measures and so the road trip began.
I arrived at the Clinic of Dr. Chan at Cromer Hospital 10 weeks from the point of referral where I was seen by a Dr. Leo Alexandre who looked into all the persistent symptoms I was having. Tests were put in place to be done starting with an Endoscopy which was quite frankly nothing but nastyyyyyyy!! Banana throat spray and anesthetic is quite simply the worst combo ever invented!!! The sedation left you in a daze and not remembering anything that went on but I’ll tell you one thing after it was done, you could still feel what felt like a golf ball was stuck in your windpipe, it was quite frankly the most uncomfortable thing to wake up too!
The term continued as i underwent further tests and investigations but it soon became apparent that I was no longer going to be able carry on, the amount of time off, hospital visits, reduced timetable just wasn’t enough to be able to keep up with the task at hand. However determined I was to beat this it was going to take a lot more than enduring the job I was currently in to be able to do so. I become withdrawn from work and struggled to make it back after so much time off and this is when I decided to write out my resignation and hand it in! I did what I could right up until February 2019 when this decision was made and I left knowing that I had done all I could and been honest with myself and my place of work that this was best for all involved. It was a hard decision but one I needed to do for not just myself but for the Children and the staff too. All of which were excellent and supportive throughout and my time leading up to the 4 week notice period.
I walked out of there knowing I did all I could and that It was the best decision for me at the time to allow me to concentrate on returning to full health. I continued to undergo a series of test including a CT scan of the small bowel/intestine which included drinking a whole LITRE of Barium liquid which would then light up on the x-ray to show what was going on in the duodenum. Followed by a Barium meal swallow and scan of the abdomen before finishing off with a Bowel Transit Study which is sometimes called a “shapes test”, to find out how long it takes for your shit to pass through your colon (the big bit of your bowel).
Bet you are all thinking why the hell am I’m not a doctor by now? HAHA! But anyway I swallowed several capsules of different colours filled with 20 plastic markers. These markers passed through the bowel and showed up on the abdominal x-ray taken 3 days later giving a clear indication of the issue.
I had some much needed time off too re-coop and regain some control and focus whilst I was still waiting for results and that is when I decided to get back into PE and teach sport at a Primary School. It was Woods Loke who gave me the opportunity, which boasted great facilities and pupils who loved sport just as much as I did. I settled in quite quickly but it soon become a lonely role, I was very isolated hardly got to know any one due to my timetable being so jumbled, my lunch break was at the end of the day which comprised of eating with the cleaners before they started work and I went back into doing my After school club. A few months went by and I got stuck in and implemented changes to allow a better working environment for myself, but gradually over time I began to struggle with a massive bout of fatigue. My legs took the brunt of it from being on my feet all day, my timetable only really allowed me to eat at certain times some days not at all and this is when I believe I started to show signs of not eating.. Each day it progressed and got worse and soon left me feeling more unwell and was contracting a lot of viruses, losing more weight and becoming disengaged with my job once again. With all the investigations still going on at the hospital and tests and the outcomes that were bought to my attention soon lead me throw in the towel for a second time.
I thought that feeling as much as I possibly could though because I knew deep down how much the job meant to me, I tried so hard each and every day but it really wasn’t worth the pain I was putting myself through and I knew that something had to give. Again I knew I still needed a source of income so rather than quitting and being out of work I started looking again for another job, one that was perhaps less strenuous and not so hands on and reliant on just me. Hours upon hours of searching my Dad came to me with a proposal and offered me to become a WIZARD and join the team at Window Wizard as Wizard Jnr Office Organiser!!! Dad needed a right hand man to be the face of the business and run the office which meant manning the phones, day to day work for the boys to complete, quotes, invoices and orders. In my head I knew it was going to be so different from what I was used to doing but actually I was so excited to get my foot in the door and start something new and become the official Office Bitch!!
I set straight to work and ordered lots and lots of GREEN office furniture (my favourite colour) to put my own stamp on things, I spent time in producing new work sheets with up-to-date logos and advertising, set up all social media platforms and basically started from scratch. It allowed me to be organised which I liked and was more manageable for me.
October 2018 seemed the turning point of having something new to focus on. I picked it all up very quickly, and got things running smoothly. Any one will know that a MAN is very untidy, perhaps a bit disorganised and far to laid back in certain situations. It was certainly something that didn’t go unnoticed for me but just after a couple of weeks order was restored. There was structure and a new system in place to allow our place of work to fully operate. Any other company would probably be quite annoyed that a new person has come in and changed stuff but my Dad was just appreciative of me taking control, sorting him out and making sure things were done efficiently and in a quicker time than what he did before and it made my OCD run like clockwork everything was in place, everything had its place, everything worked for me.
“It’s like I have two brains a rational brain and an irrational brain that are constantly fighting against each other”
There is many ways in which my OCD works really well for me and other times it is just a real pain in the arse. I’m obsessed with the order and symmetry of certain things, colours, arrangements along with going over and over certain tasks because it is a ritual that I feel I must carry out. So for all of you who ask how, and why my hair is so straight it is because I will go back and straighten it throughout the day at least 3 times and once before I go to bed just because if I don’t I feel like something bad will be said about me.. stupid I know but when your Ginger and have short hair there are a lot of insecurities so as long as my hair is done I don’t feel like everyone is staring at me.
The flip side to this is being a complete hoarder and compulsive buyer.. I cant let go of a lot of things because of the value it holds to me even if its just there collating dust at the bottom of a wardrobe it was once bought for a reason. The compulsive buying as many will know is footwear, I have a pair of trainers for every outfit and will often resort to buying clothes to match the colour in the trainer or even the same colour football boots just to match the kit. I’m forever making sure everything is matching and that it is clean and free from dirt and creases before I can wear it. To the point I’m 100% always late, some days later than others, other days you wouldn’t even notice but I have to do it for me or I feel a sense of guilt and shame that I haven’t stuck to something I have always done.
Another example is my bank account, I wont buy it unless it’s at an even number and leaves my account at a whole number,even just going to the petrol station I will check my account and see what amount I can put in so it doesn’t effect what It will change it to once I’ve paid!
These compulsions are behaviours and rituals that I just feel driven to act upon again and again. They are performed in an attempt to make obsessions go away however, the relief never lasts. In fact, the obsessive thoughts only come back stronger, the compulsive rituals and behaviours often end up causing severe anxiety themselves as they become more demanding and time-consuming and you feel trapped in this vicious cycle that never goes away. I have to carry on completing them regardless of how much time goes in even if that means forgetting where you should be and what you should be doing!! Crazy and pathetic but it is what it is and I don’t think something of that significance and always having to strive for perfection can be changed as it is just apart of who I am.
“My Dad is my HERO”
You still hear people say that working for family is a dangerous game, but we have a true friendship, daddy’s girl through and through and to be able to work with your Dad who is also your best mate is something very special and as we always say we are the Wizardry Dream Team. His support and understanding and allowing me to have this chance was honestly a life line. I’m very lucky to have my Dad as the boss; he understands when your ill that you can’t go in, but can work from home instead, he knows when he comes in the office to keep his paperwork tower on his own desk and not mess with my system.. He knows to just let me get on with it and whatever needs doing on the computer it’s just quicker and easier to let me do it! (Because nobody wants to see an angry wizard lose his cool over using the computer which he hasn’t quite got the hang of). With everything I have struggled with in the past, I haven’t had the feeling since being under my Dads wing because he understands and cares for you and only wants to see you succeed. In employment that is sometimes so hard to come by but is all you ever want from your Employer. Respect, Understanding and Honestly all go a long way in the world of work and it doesn’t take much to be that person. I know I will continue to work for my Dad for as long as his business runs and to continue seeing it grow from strength to strength. I have now become a Window & Door Geek and could tell you quite a lot of information and it’s so sad how weirdly satisfying it all is but to see homes transformed through your Dad’s & Teams hard work becomes very rewarding and awfully satisfying in playing the vital part being in first and last contact with the customer.
It’s been nice to have something to focus on other than my health but deep down it’s always been there and not gone away and I have struggled to cope with certain situations that are out of my control. To me the triggers are very clear as they still feel so real even though parts of it happened a long time ago, I just find it increasingly difficult to process and accept these changes within my life. I know it has stemmed from losing my Grandad, and relationships that have broken down along with the disappointment of having to give up a job I worked so hard for and then having to go through it all again with my Great Nanny & Grandad. I know in time when I am ready that this will all add up and make perfect sense but right now it just feels like a jumbled mess that still needs piecing together.
“Loss of a loved one “
Grandad Geoff sadly took his last breathe on the 11th January 2017 and previous to that my Great Nanny on the 22nd March 2013 and to where all my problems first began surrounding grief with Grandad David on 30th January 2007. Grief is totally different from any other sadness or depression I have felt before. I couldn’t say for definite if it’s the combination of the two things at once, or if it is simply that the death of a person so close to you that is uniquely intense.
A big cloud of sadness surrounds a loss especially when that someone was like a rock in your life. A solid relationship built upon love and trust, and now all that’s gone. Just like that with nothing else able to ever take its place. My Grandad David, Great Nanny, & Grandad Geoff all had something in common not only did they get struck down with Cancer they were all fighters, survivors, and all around the most beautiful people I knew growing up. They radiated pure happiness and made you feel loved beyond measure. I’ve learnt that grief doesn’t just shrink away and get smaller, you become to realise that it’s not a one way process, you have good days, and days when the tears no longer stop. All of these feelings started before, and even when they were still here; especially when “I was unable to be in control of the situation” I couldn’t change the fact this was happening, I was apprehensive from the moment I was told there wasn’t long left, I was anxious, felt constantly on edge every time the phone rang, every time I visited, or if people weren’t where they said they were the picture you built up was always the worst and when that moment came of saying goodbye for the final time there is no feeling quite like it.
I remember every incy wincey tiny detail, can still see there faces, hear their presence like they are still here. It is an entirely shattering experience; nothing prepares you for how breathtakingly terrifying it is that they will only now exist in photographs and memories of your own. Years on from each death, I am still brittle and exhausted but slowly learning to live my life, carrying on the memory of them all, because in this way they will live on too. Grief for me is still playing a massive part in my life and a trauma which has given tremendous heart break which has never been fixed; the smallest thing like watching Chelsea Vs ManU can spark a set back, the smell of home baking or a buffet at a party, and the smell of fresh fish and your nanna’s back garden that just take you right back to everything that person was. There are so many stages of Grief of which I’m yet to express in detail so I will go back to this in a separate post just so that if anyone out there is feeling this effect to from loss a loved one that we can help each other.
“Health is not valued till sickness comes”
Through out the space of the year when all the tests were done and completed I was finally seen again in October 2018 and given the diagnosis of Functional Dyspepsia, Slow Transit of the GI Tract & Colon with Chemical Gastritis of the Stomach and signs of tear to the lower part of the Esophagus due to persisting vomiting and Acid Re-flux. During all this palaver of finding out what on earth was going on with me I experienced extreme fatigue and tiredness, muscle aches and joint pain, sickness everyday. It was a constant battle everyday to even complete simple tasks and go to work which added up to a lot of time off over the years, and the heartbreaking thing of all being slowly unable to enjoy playing the sport you love. It was then put down to being ME/Chronic Fatigue syndrome in February 2019 so yet again another thing to deal with but somehow still be able to enjoy life?
So me being the stubborn cow I am, decided to ignore that of professionals and others closest and continue on the football season. I’m one of these people where you have to finish what you started before you can see that giving up is the best thing to do and just because someone is telling you too. Eventually it did take its toll and after several hospital trips for being chopped in half and suffering more head injuries and fatigue the setbacks were just more frequent and it was at this point I knew it was only fair to allow my body to take a break from the game so I played the last game to ensure I finished what I set out to achieve; and that was to make sure we stay up!
We DID IT! It was honestly the best feeling because everyone worked so hard and stuck together to achieve what was important for us at the time. Presentation evening soon came around and the room was filled with positivity and emotion from all angles. For me it was the best evening that topped off the season and to be awarded with an award for dedication and commitment despite all what I was going through was enough to finally accept I achieved what I set out to do and more and to be recognised for that was a very proud moment for me and my family because they all know from years of watching being recognised for something good was never a thing.
For once something ended on a high and with a focus now turning to my new position of coaching/managing instead. The journey on that has only just begun and its nice to have a new challenge to focus on and to avoid reliving all that disappointment of not being able to play. I hope one day I will be back in the shirt rocking my many green pairs of football boots but for now it’s time to listen to the body and enjoy the ride from a different perspective “suited and booted in tracksuits”! and yeah I did go online and spend spend spend to make sure I look the part from top to toe, even in keeping with the tradition of buying a new pair of boots for the season ahead regardless if it is only to stand in them, it’s a tradition I couldn’t break! My logical theory behind it is that it’s just like having a new job, you go out and buy new work clothes and shoes, so yeahhh i guess you can this is my reasoning of thinking that it’s totally acceptable…. Sorry not sorry Mum ahahah!
“A smile is the prettiest thing you can wear”
However positive that last bit may seem in words, it’s not what you would see on the outside or what I am feeling on the inside because if I’m being totally honest the struggle was and still is very real and am surrounded with nothing but dark thoughts. The word honest is something I’m not very good at actually portraying, because opening up and letting people in and most importantly trusting that people won’t judge is very scary and is something I’d rather not have to deal with. The natural thing to do of course is keep it to yourself, cover up what is actually going on by continuing every day normal life and putting on a front to show anyone who comes in to contact with you that in fact everything is just fine. Over time though I can tell you that it gradually starts to eat away at you and cracks begin to show however much you tell yourself their not you can’t keep up a fake act and those who know me well enough will know man can’t lie for shit.
I knew I had to be stronger than ever and build up the courage to tell someone how bad it had actually got, most people would choose to go to their family or those who are closest but for me that wasn’t the route I wanted to go down, I wanted to be the one who fixed it by myself as this was my fight to fight as i knew deep down there was nothing that anyone could do to take this away. All the doctors appointments built up over time and I began to have a bit of faith in her so I went to her for help before anyone else, she said she would refer me to the relevant people but the wait is once again a long one.. So although I took the step in reaching out for help, I didn’t actually get anywhere as waiting for something your not sure what it actually is your waiting for other than help when your at rock bottom is a hard pill to swallow.
I did come away feeling like I had made a big step in going forward and admitting I needed help, but getting it was few and far between. With all this going on I had just come out of a relationship of what I thought I was very happy in, at long last I had found love, someone who took me for me and treated me like I deserved to be treated but all that was soon disregarded when we both had our own demons to contend with. We were both so unhappy in our own lives that being together and not speaking up about are real thoughts and feelings inside our own heads that only made it worse over time. Two people who hide their real feelings.. is a recipe for disaster right? I began to start opening up and let that person in because a part of me was like if you don’t try to make this work you’ll never know? So I did, but for some reason it didn’t get acknowledged it felt like someone was there in words but not there for you in the here and now and as a person.. I came away thinking maybe it’s just me, maybe it was just a lot for him to take in? But still in the back of my mind I had these doubts, because it just wasn’t the response you would hope for off someone who is suppose to love and take care of you.. Slowly but surely these doubts and feelings over ruled everything in my heart that I felt for this person and I knew if he wasn’t going to open up to me about his problems then I wasn’t going to allow myself either, because to me it works both ways and if its not reciprocated back then I’m completely done. I ended it out of frustration and anger more at myself for not being able to be in control and fix it, for not being more understanding but in this life you have to look out for no.1 so that’s what I did. Yes it was my decision, and it was a very big blow, because I was back on my own again but deep down I still cared, always have and will always love him for who and what he is because way past all that I had found to me the most kind, caring, bubbliest soul of who I shared lots of great memories with and they don’t just disappear, especially when you have 10223923 photos together which are still held on your phone because you cannot go through the pain of deleting them because actually they were some of the best times throughout the space of a very dark time that I kept well hidden from him and my Family.
“No one ever tells you how much it hurts, when your body is still fighting after you gave up”
It was not long after in March 2019 that I started to give up, I know longer wanted to be here when all I was experiencing was pain and hurt from all angles, I was exhausted and felt trapped in a dark place that I really couldn’t see a way out of. So whilst my Mum & Dad were on Holiday in Gran Canaria and I was home alone that I tried to take my own life.. (failed miserably) The amount of tablets I took I believed to be enough to put all this misery to an end, I took a concoction of different Antidepressants, Anti-emetics, GERD tablets roughly 14 in total down the hatch with my favorite Palma violet gin straight from the bottle. I took them and laid in bed waiting for it to start working and that when it came to the morning I wouldn’t wake up! I had failed once again, it wasn’t enough to take my life, but enough to leave me what felt like the worst hangover going and excruciating stomach pain more worse than normal, along with a lot of sickness which for me was also normal.. It was at this point I had the wake up call that it obviously wasn’t my time.. I gave myself that pep talk and continued the get up and go everyday trying to push past all the bad that consumed my head and that somewhere the best is yet to come.
This made me realise that to get the best out of life I needed to seek help elsewhere and quick, so I was given a number from someone close to me who had used Anglia Therapy which involved private sessions with a Cognitive Behavior Specialist who’s message was that just as each person’s underlying building blocks for life are unique to a person, every person can bring their vulnerabilities and sensitivities into therapy and be met with compassion and resolution. Through the provision of new information and the emphasis on finding solutions, people find themselves ‘working’ and having ‘hope’ from the first session. Susan wasn’t wrong; there was a big part inside of me that after the first session if I continue digging and unravelling events of great significance things will become clearer and life can really be lived.
Another friend also told me how great it was that I had took this step because there really is nothing better than investing time into finding yourself and that you really can’t put a price tag on your health. Everything from here on in did seem to become a lot clearer after a few sessions even if they were really intense and reducing me to tears, it was finally starting to break down the barriers to finding a healthier solution. It was after the 6th session though when I came away feeling like I was at a stalemate, I had spoken and opened up about stuff that I’ve never spoken about before and all to a complete stranger before those closest me? And all for what? Because I still don’t feel like it’s any better? I still feel deep regret in many situations, still unable to stop negative cycles and the way things make me feel bad, anxious or scared. These problems still aren’t manageable, there’s no change in my negative thought patterns or improvement on the way feel? So again I’m back to the start of WHAT’S THE ACTUAL POINT!
“I simply punish myself, for failing, for losing my way and for disappointing my family”
Trying to find a purpose in life has never been in touching distance and recently I have felt a sense of emptiness an emptiness that is so heavy that all these thoughts and feelings have contributed to the situation that I now find myself in physically. I have become so used to being comfortable when I’m empty.. so is this why I can’t keep food down? To me I say YES but to the professionals they so NO its a physical condition that we just haven’t managed to treat properly? But my question is throughout this whole time I have had to live everyday fighting a constant battle to be diagnosed but not treated properly and efficiently to the point it has now gone to far off the scale and progressed into something so psychologically damaging that it is slowly destroying me bit by bit. It’s now deeply in bedded as the routine I adhere to everyday leaving me mentally exhausted and in the gutter with not a lot of fight left in me. I have pushed people away, and feel a massive sense of disappointment to my family and those closest to me for what this has done to them and for me personally as I have lost my MOJO, my life, my sense of humour and the upbeat, bubbly personality that has only ever longed for acceptance.
It has progressed so rapidly over the past year and has recently seen me admitted to hospital twice in the space of 3 months and has had some long lasting damage on my health and a loss of faith in those who are supposedly the experts and healthcare professionals. We seem to be in a world where they treat every case and every individual as the same when in-fact no two people are the same and everybody should be giving the time and care they deserve and be listened to, to ensure the outcome needed to get on and enjoy life. With only being 24yrs old you know dam well there’s so much more to life than there it is at the moment.
I’ve been back home since Tuesday 30th July and the road ahead still seems to be never ending after what felt like a wasted time in hospital but I have since jumped some massive hurdles and faced a lot of investigations and assessments which have been very difficult since being home. Although I’m having to sit back and wait for the help I need I do have some very special people in my life who are supporting me and helping me see a way out of a very distressing time. I’ve always been a bit of a keyboard warrior as it’s easier to hide behind a screen than having to openly speak up about something you have no control over. This is why I have chose to document my thoughts and feelings and stories so those closest to me can understand what it’s really like for me in my own words rather than what you see and for anyone else to have a read and simply just reflect because you never know whats going on behind closed doors, a smile can speak 1000 different words; just checking in on someone from time to time can make all the difference.
Hopefully you get the gist of what it’s really like for me and any feedback or messages are always welcome! NEXT UP on the agenda.. is the hospital stay!! So prepare yourself for another long read with this one focusing on the highs the lows, the tears and the laughter along with everyday people who all bring something extraordinary to world in their own way.
Let’s take a flash back to the beginning of 2020 where I began treatment for my Eating Disorder at Newmarket House. It was here that I discovered that by talking about things and addressing them I had no choice but to seek help for what was really troubling me deep down and although it’s been one hell of a ride I am now really settling into my new life as Mr Jode David Wells. The Dysphoria I had towards my body was extremely powerful which lead to me abusing my body by diminishing female features by simply losing weight. It was quick and easy and filled me with a sense of accomplishment but overall it was extremely dangerous as I would literally vomit any form of food or fluid straight back up. To some people it will never make sense as to why you would choose to abuse your body in that way and simply make you very ill physically and mentally but for me it served a much needed purpose and made me feel comfortable without having to admit my troubles.
Over the years I have just learnt to hide it so well, but there’s only so much lying that once self can do before cracks really begin to show. The worry and pain I put those closest to me through was very unfair and selfish of me but it is now with the right the right mental support and being on Testosterone Treatment since November that I am beginning to fully accept who I truly am. Things are now starting to step up a gear and the ongoing support from my family, friends and even strangers has really given me that lift to see that there is a place in this world for me. I never wanted to be miserable or sad, or make myself extremely ill to the point I nearly died but having Gender Dysphoria is so much more than who you identify as. I pushed away help and support for so long as I tried to suppress my feelings and tried to live the life of my biological sex. Sadly these feelings you can’t suppress for ever and it is now with the correct support from mental health services that I can say I am now in a much better place physically and mentally. I began Private Hormone Treatment to start Testosterone in November as the Gender Identity Clinic on the NHS is currently at a 4-5year wait if not longer due to COVID, I now live entirely as a male and behave in my preferred gender role, I have joined support groups with others suffering from Gender Dysphoria and have changed my name legally and updated everything in my New Title as MR Jode David Wells. (BEST FEELING EVER) I have 2 hours a week of Therapy provided by the Great Yarmouth & Waveney Youth Team who really have teamed me up with someone who truly understands me and what I’m going through a background of people with eating disorders and Gender transitioning really is a match made in heaven. I also have fortnightly private counselling with Gender GP who provide support to the Trans Community as well as undertake my hormone treatment and it is with all this that I have learnt so much about myself and can truly say I am kicking this Eating Disorder to the curb as I have now not been sick in over 4 weeks and have managed to eat healthily and enjoy food and put on over 2 stone. I can officially say that I am no longer Anorexic but that of a Healthy Weight with no sickness what so ever. Proud to finally say I’m free from the dreaded illness and recovering well and enjoying my new found energy and motivation to a much better happier and healthier lifestyle. I honestly thought this day would never come but I have had so much support and drive to get myself to a mentally and physically better place that all the years of abusing my body is a sign of the past and fast forward to now there really is no better feeling than being able to be who you were born to be!! (HALLELOUJAHHHH)
“Money Can’t Buy Happiness but it can Buy Top Surgery and that’s the same thing”
Moving forward in my journey has always been my priority so it is with that I have decided to use my house deposit savings and kind donations from everyone on my GoFund me Page to secure the money for my Top Surgery of which I have a consultation for on the 7th September 2021 at the London Welbeck Hospital with Dr Miles Berry to go ahead with a Double Incision with Nipple Graft to remove the things I hate the most my BOOBS and create the all important male contoured chest!!! It really will be the gift of a lifetime and a surgery that really will change my life and my difficulties surrounding my body dysphoria. Yes it involves a hefty financial transaction, but what I’m going to get in return exceeds the satisfaction money can’t buy.
My surgery date will hopefully be a year on from taking Testosterone which will have increased masculinising effects to optimise my chest for top surgery. I should in theory have less body fat and broader shoulders. I am using this time to now work through my fears, motivated by the increasing discomfort of binding my chest and doing regular exercise and strength training incorporated with healthy eating to give the surgeon less fat to work with in turn giving me better results. (Fingers Crossed!!)
“We are in this together, and we will get through this together”
I know 2020 and the start of this year has been really shit for everyone, it’s broken and touched people in many different ways. COVID for me has really changed my perspective on life and made me realise what, and who is important and to never take anything for granted as well as feeling very lucky and privileged to be in the position I’m in as rewind back a few years I never thought any of this would ever be possible.
“No love is greater than that of a Father for his Son”
My Mum and Dad have been my rock throughout this whole process, helped by the fact that my own approach to transition has all been at my own pace. They both have accepted everything with open arms and always want to talk about it and support my choice fully as well as using the correct pro-nouns and calling me Son gives me such a warm feeling or when they call me KING HAHA!. The dynamic works well for all of us as a family especially the classic father-son bond of which my Dad has always wanted not that we never had it but it has just got so much stronger. Everyone understands my reasoning behind my transition and has helped make it happen so smoothly and helped me get to this place where I am today. I’m beyond grateful for that and for the strong relationships I have maintained and I am so excited to continue sharing my journey with everyone who has supported me through out the highs and the lows of my transition.
This is quite a short one for me as I normally tend to waffle on and write loads but I feel this sums up where I’m at and the direction I’m heading. Massive thanks again to everyone for you kind words, support and generosity its the little things that really do make a difference. If anyone would still like to donate the link can be found below or on my Facebook page. Love to everyone!!
I’m now 25 years of age with a life that is full of, happiness and aspirations. Sadly, these personality traits have only just come back after being disguised with weakness, isolation and despair. This was due to a slow introduction of unwanted triggers and circumstances, leading to a situation where I found myself tightened under the gruelling grasp of an eating disorder to control the way I looked by diminishing female body parts. By becoming smaller everything slowly started disappear and made me feel better about myself and the smaller I became the better I felt so the cycle continued into a dangerous downward spiral.
I am currently now rebuilding my life after engaging in an 8month stay in an Eating Disorder Unit @ Newmarket House in Norwich. Through writing these blogs I start to encourage my own recovery as well as showing others that with self belief and motivation life can and does improve! I believe that positivity can come out of every negative; Over the past year I have began to share my story, but more importantly, place emphasis on the optimism that can be nurtured whilst facing every day challenges. I have become very passionate about making a difference in this area of mental health, and I want to use this blog to raise awareness about the illness, inform people about the severity of an eating disorder, and the huge consequences of living a lie and forcing yourself to live your life in the wrong body when from the young age of Seven you knew this just wasn’t right. I carried on regardless because I was just too scared to admit how I truly felt as well as worrying about peoples responses and losing people of which I was closest too. So by writing this I just want to encourage people to talk, ask questions and gain a better understanding of both an Eating Disorder & Gender Dysphoria and to not be afraid of getting the help you need in order to live your life to the fullest.
My disorder began with restricting my food intake. I’d try to skip breakfast and barely eat lunch, I was living off one small meal a day or telling everyone I had already eating. My stomach would roll and growl all day long and this would go on for days. Inevitably though, after feeling absolutely ravenous I’d eat whatever I could to show people that I was fine and in fact just hungrier than normal. But with all that came the powerful cycle of sickness to get rid of anything consumed which made the episodes of eating more and more out of control. I continued eating less during the day and then more than making up for it in the evenings. Several years passed, and my eating habits fluctuated. The process of being sick seemed so easy. I could eat whatever I wanted and however much I wanted, and then just get rid of it with a simple flush of the toilet.
Bulimia became a sort of coping mechanism for me. Although I never once made my-self sick it just happened and was so so easy to continue this cycle to achieve what I wanted. It soon ended up not being so much about food but about control. I was dealing with a lot of stress and there were lots of things in my life that I just wasn’t able to manage. I’d eat and get a rush from eating food, then I’d get an even bigger, better rush after getting rid of it all. All of this did come at a very costly price to my physical and mental health and with constant support and care at Newmarket House I was able to look into this in greater depth as to what was the driving force behind my Eating Disorder. For me I knew what it was, I knew full well what was holding me back this whole time but how to say it was always my biggest concern. I worried about what my Family would say, my friends, and people from the outside that looked in would do. I just didn’t know how people would be or if they would simply just judge me and throw me under the bus as some complete weirdo who no longer wanted to be female but wanted to be male.
“Everything you want is on the other side of Fear”
The more I explored and shared my experiences within Therapy the more things made a frightening amount of sense. One family therapy session was what hit the jackpot for me.. My Dad said I was like the son he never had and the words that wanted to come out were I AM but I just couldn’t do it I wasn’t ready for what could be rejection. I began to talk through this lifelong struggle and I came out with the words that I was in the wrong body and wanted to be a male and with that a huge weight shifted off my chest & shoulders. I finally begun to come to terms with who I was and why I had been feeling what I was feeling. It was a relief to have some understanding and to begin to have the words to articulate all the tricky stuff built up inside of me.
This however made me even more aware of all the difficult stuff that was to come. I was worried about coming out to my family & friends, rejection, fighting for my right to access treatment and support, how I’d be seen in the street, all of those things. What I do know is I’m incredibly grateful that I am still here and still alive, because I was never really sure I’d get to this point. I honestly felt so trapped and pent up with anger and frustration of how shit life would be if I had to carry on being someone I’m not and it just felt like the easiest thing to do would be to give up and kill my self because the pain had become so unbearable. However thanks to Newmarket House everything has now changed I’m on the path to embarking on my new journey as Jode and as the male that I’ve always wanted to be the guidance and support I received through coming out as Transgender gave me a new lease of life, characteristics of my old self were back and I was like a coiled spring, bouncing off the walls being the old cheeky chappy but perhaps a little bit more off the scale as I was buzzing because I literally just felt so free.
My first taste of coming out was a bit of a whirlwind, I felt like because I had come out an admitted it to staff, everyone around me needed to know as well. Including those of my family and friends so that I could begin to live my life the way in which I’ve always wanted to live. So the next steps began I began to write a letter for different sets of people due to covid it wasn’t as easy as having face-face contact with everyone and it was not something I wanted to do over face time. So I began to write letters one for my Family and Friends and for “The People” of which I lived with so that I could get a taste of acceptance or even rejection although the rejection part never actually happened and everyone accepted me with open arms and made me feel like a KING! It was so surreal the night before I was due to tell my parents I remember sitting outside under a gazebo listening to the rain pour as well as catching tears that streamed from my eyes because I was just so shit scared. I closed my eyes and hoped that it would all just be over but there was a tap on my shoulder from another patient who asked if I was okay, I just replied with I’ve got such a big thing to do tomorrow and I just don’t know if I can do it, and with her second guess she just knew exactly what it was!! I was told that everything would be okay and that my parents would love me no matter what and as we hugged it out and she walked off, I just remember talking to myself and wondering how a complete stranger I’ve been living with less than a year has just guessed your ultimate secret!! Now felt more the time than ever to face up to the truth and tell my loved ones because if she could accept it then so would everybody else. I went to bed that night with the minimalist of sleep knowing that tomorrow was in fact the day that I would tell my parents as it was visiting day, it came round so quickly and I felt sick to my stomach but I knew I just had to do it because ultimately if I wanted this to be the next step in what was to be the rest of my life this had to be the first step. It was a bit of a weird visit as I couldn’t actually see their full faces, I couldn’t hug them and I just didn’t have the bottle to say it out loud so I gave them a letter each (Dad’s slow at reading) so this gave them both the chance to read it at their own pace. Once they had both finished reading (at different times), I saw tears form but most of all I was welcomed with utter joy that I had finally been able to be open and honest in saying what I had been feeling all these years. I was balling my eyes out mind you but it was more tears of happiness that I hadn’t been rejected, I was still loved but as of Jode instead of Jody and since that day I have embarked on a new journey, making lots of different changes to feel as comfortable as I can in my own skin until I was to be referred to the specialists in this field.
Firstly I had my favourite haircut of all time “Thanks to my Sister” who turned a picture into a fine head of hair on my head, I changed my Name and was referred to by male pro-nouns from everyone of which I lived with and I ordered a selection of shirts to match my new look. It was crazy, it was so exciting, I continued exploring within therapy and kept talking to staff, which in turn allowed my eating habits and sickness to turn a corner because I finally managed to come out with what had be troubling me all these years and I could finally see an end and knew in turn to get the right help I had to mentally and physically healthy and with that weight went on, meals were kept down and my overall outlook on life was completely different. My sense of humour came back and I had a spring in my step and I just couldn’t wait to get back home and share the next steps of my journey with my family and friends.
I have people ask me if I still think I would have developed an eating disorder if I had spoken up about my transgender identity when I was younger. The answer for me is a resounding yes. My disordered eating habits are definitely complicated by the fact that they occur alongside my gender-related dysphoria, but many of my eating problems were centered around having some sort of control. It also felt like part of the physical transition. Body dissatisfaction; the negative evaluation of one’s appearance is considered a risk factor for mental health issues in general and is thought to be experienced by both trans people and those with an eating disorder. My attempt was to suppress features of my assigned sex. to accentuate features of my gender identity specifically to present gender identity in ways that are understandable to the world around them.
I attempted to stunt breast growth, reduce hips, and eliminate menstruation by restricting intake and being sick. The positive note to my story is that I was able to find myself at Newmarket House with support from everyone who helped me consider my eating disorder in the context of my transgender identity. None of us were experts by any means, but they recognised that my identity feeds so strongly into who I am as an individual and how I experience disordered eating. The world of eating disorder treatment and research needs more of this thoughtful consideration, because I know for a fact there is more than just me out there who is suffering.
I’m still suffering now, although I received some wonderful news this week from The Tavistock & Portman Identity Clinic in London that they have received my referral m life is still pretty much very very difficult and continue to live an everyday battle within myself no matter what good is going on outside. Inside yourself there’s a war raging between who you are presenting yourself and who you really are. The longer and longer it’s dragged out you’re made to feel marginalised and you’re made to feel that you’re not important.” The average wait for a first appointment at a gender identity clinic at the moment is up to 24 months which although it isn’t a shock to me because I knew it was never going to be a quick process it’s just depressing to think that being trans and still being in a female body is going to affect my day to day life – I’m incredibly anxious about being ‘caught’ in the men’s toilets, judging who will be safe to come out to and who might react badly, the anxiety of worrying about showing my ID and it still being female worrying about how staff will act towards. I’m in a job sector where customers will call me she and refer to me as my dad’s daughter and that is frustrating when you’re trying to live your life as that of a son. I have sent off for my name to be legally changed to Jode David Wells and am looking forward to get all my Identification changed and having services refer to me by my proper name because seeing Jody is again just another reminder of some very difficult times. The wait time scares me, because old habits do often creep into my head and I do act on the impulsion of these thoughts and resort back to old unhealthy behaviours of my eating disorder, I do doubt myself on numerous occasions as to whether I can go on to do this and wait this long because it’s ultimately a long time to continue on as you are when you don’t fit in your own body. I am still under my Eating Disorder Community Team but if anything they have been pretty useless and haven’t really supported me enough to help with these feelings that I am experiencing with my weight and shape and just seem to be allowing me to go through this in hope that these thoughts over time will just disappear like they did in Newmarket House. I don’t think they realise how much support I needed in there to keep me going and battling the strong mind that my Eating Disorder creates. I had on hand 24 hour support each and every single day for 8months and now they think that one appointment every 2 weeks to see me and do physical observations will be enough to keep this materialising into something much greater. In my head I’ve pretty much washed my hands with them and will lean on my Doctor who has done all the referral, offered support and guidance and has given me hope that at the end of all this upset and all the extremely difficult points in my life I will reach my ultimate goal of becoming the Man I’v always wanted to be.
I know that my mental health will continue to suffer until I get the right help but for now I have just got to continue to be positive as much as I can and stay focused continuing to do things that make me happy and distract me from some of my most deepest troubles as well as joining support groups to help with this long period that I will face still being stuck in the wrong body.
I am extremely lucky to have an incredible set of Family & Friends who have continued to be such a great support network. I have a great job role within the family business of which is going from strength to strength. Although I am still not playing football, being back behind a managerial role alongside my Dad is going better than ever. I am enjoying going to the Gym to release stress, have some me time and build muscle mass to help me begin my road to obtaining a new physique. As well as being back behind the wheel of my car of which currently is costing a bomb (not by my bad driving may I add) but by stupid engine warning lights and the fact that Ford want to charge silly amounts to get it sorted. So on paper overall more positives outweigh the good right… but deep down inside me I’ll be honest and say that’s not the case Gender Dysphoria is a very much the “battle of the beliefs” hanging on to your belief that you are who you are despite how others may define you, while also challenging yourself not to compare your insides to other people’s outsides. It’s a constant effort to align yourself externally with how you feel internally. When I was younger I wished that I had the language to articulate the dysphoria that I was feeling because maybe this could of all been rectified by now but clearly for me it just wasn’t the time or the place.
Now the time is for me to be patient and trust the process and await what lies ahead because I know now more than ever that getting on the ladder to seeing a specialist, being offered testosterone and eventually surgery I know I will lead an exciting and fulfilling life.
“Its not about being a new person, but being the person you were already meant to be”
Yes you read it correctly, I’m on the discharge pathway to coming home and it’s a lot sooner than I ever imagined but now is the right time to fly the nest. I feel more ready than ever to take on what awaits me on the outside and it certainly couldn’t of been done without this admission. It has been a whirlwind of a ride with the majority being pure hell and a feeling that things would never change and quite honestly not wanting to be here. The last 3 months however have been remarkably different and incredibly inspiring to see how good life can be and I’m so excited to continue this journey outside of these walls.
I spent a hell of a lot of time before this in and out of hospital constantly needing vital drips to keep me alive and a tube to feed me because I simply didn’t have the mental capacity to do it on my own after many years of abusing my body to maintain a low body weight and diminish my female features. I got caught up in a very dangerous cycle and become seriously underweight and was pretty much unrecognisable to all my family & friends but thanks to Newmarket House I am now back in the land of living and am only 2kg off being a healthy BMI! It may be at the lower end of healthy but compared to where I was it is a massive achievement and I will continue improving this in the weeks and months to come so that I continue making strides forward to living my life happily and healthily.
“The size of your body, has nothing to do with your worth”
I remember the first day of my Eating Disorder and it was so unpleasant and upsetting but it gave me an absolutely wonderful feeling of purity and emptiness following it. I would eat an entirely normal meal and yet would of eaten nothing at all due to the cycle of sickness I was wrapped up in! I resolved to keep up this regime and I just couldn’t stop it within months the daily routine become the new norm and the irony of an Eating Disorder is that it starts out as a situation which is completely in the control of the person. However, it quickly snowballs and becomes a situation which is totally uncontrollable. This terrified me because I really did have no control over it and I never thought this day would come where I would be able to live a life away from it.
My weight spiralled downwards which to me was a validation of what I was doing. As long as I was getting thinner I could cope with the fact that my world was closing in on me, pushing everything out except my weight and preoccupation with everything to do with eating. Eating Disorders are a lonely and ritualistic existence. Relationships with Family and Friends, Work & Football all fell away as I felt unable to manage, it was such a struggle as my ability to concentrate was all but gone. I weighed as little as 32kg and spent a lot of time in hospital prior to this admission and it didn’t cross my mind that recovery was even an option as I didn’t feel that I needed/wanted to recover at that stage because I didn’t feel able to admit I just wanted to be a boy. I carried on believing that I wasn’t thin enough yet felt embarrassed and ashamed of myself when I compared myself to others.
“The struggle is just part of the story”
I can safely say now this is not how I want to live my life, since coming out as Transgender which has been the underlying cause of my Eating Disorder I have now been able to see clearly the path I want to be on. To discover all this means I need to be healthy and mentally able to face the next phases in my transition of which I cannot wait to start!! After already having changed my hair, name, and being referred to with male pro-nouns I have been able to live comfortably and confidently and enjoy this first phase of the process. It’s gone better than I could ever imagine with Family, Friends and complete strangers of whom I currently live with taking it in their stride and showing the upmost respect towards me and just appreciating who I want to be. It has made me be a really happy chappy and my mood has lifted quite drastically! It’s such a better feeling than feeling sorry for myself and exhausted from what I was putting myself through. It has been an awfully long time that I’ve suppressed being the real me and to now finally be confident and happy in my own body of the life that I am now able to live is honestly the best feeling in the world.
I have done an 8 month stint here of which has been full of some real lows and quite honestly just pure hell, but the last few months has seen a rather huge milestone and turnaround that I don’t even know where to begin. Yes this is an Eating Disorder clinic but first of all I had to address my emotions and autism to be able to start the process of understanding me and just learning to be able to accept myself. This then enabled me to distinguish the relationship between me and food and then most importantly being honest and open enough to share what was really troubling me deep down. All I can think of now is had I have said this sooner would it have taken this long?
“I didn’t realise who I was, until I stopped being who I wasn’t”
I feel like I can’t worry about that now though because it took as long as it took and at a time when it felt completely right, all at a pace that I felt in control of and in an environment that felt safe & secure. Now it’s all out in the open I can finally begin to move forward thanks to some very lovely people who have helped me through this first transition phase of my life. I have been able to express myself and be ME to a whole bunch of strangers. I’ve had constant support everyday from a variety of different health professionals which has given me a real sense of hope that with a determined mindset, and the strength and support from loved ones you can learn how to manage and cope in times of difficulty. I am now a much stronger person, better able to cope with setbacks as well as being able to live my life the way I want to without negativity having such a massive impact on my day-day living.
The next part of my journey isn’t going to be easy or by no means a quick process, but just like my Eating Disorder it takes time and that’s just something I have got to allow for and that everything will happen in its own time with the help & guidance from the right kind of people to get me where I need to be. I’m so excited for what the future holds and just by being able to be true to myself and live life as the person I want to be. I know that however long this takes I’ve made the right decision by myself to follow what I have been feeling for a very long time.
I’m just the same as everyone else, my ideals in life are to be happy, to be respected and most of all be comfortable in my own skin and if that means changing lots of things and going through a long process to becoming a man then that’s what I will do. I know a lot of people have it in their head that we just wake up and decide to be trans but I just want people to know that it’s not a choice, nothing has happened in my life to make me trans, I was just born that way. I really am desperate for hormones and surgery as my dysphoria makes me feel like I’m embarrassed for people to look at me, in my head I’m this weird thing that is ugly and in the wrong body. I have to wear baggier clothes to hide my hips and wear a binder to flatten my chest and that is something I’m going to have to do for a very long time as it’s a long winded process that doesn’t just happen overnight. I’m also fully aware that the NHS is overstretched because there’s a influx of people being referred so I completely understand this and why, but that doesn’t stop the frustration as you sit back and patiently wait whilst trying to live your life with lots of different obstacles in the way before reaching the point of getting the help you truly need. To be able to move forward and be the best version of who you want to be not just physically but mentally too.
“The only choice I made, is to be myself”
The decision to come out was really scary but the hardest part of all was actually coming out to myself, accepting and loving myself for who I am. This is happening more and more each day and I’m much more confident in being able to be who I want to be. The best feeling though has been for me to feel incredibly loved and accepted by all my Family & Friends. It has been completely overwhelming actually and I am just so incredibly lucky to have people in my life that love and accept me for who I am with everyone being behind me every step of the way and simply being my No. 1 supporters!! Spite the fears of sometimes less-than-helpful responses from others in society, being true to my own orientation and identity makes me feel whole and I have chosen to publicly share this transition as a means to aid my own changes and to inspire others.
“I am not what happened to me. I am who I choose to become”
I am so much more happier now, I was so self conscious and scared of what people thought of me but in the short period of time I have come out I am now super confident in my appearance and how I come across to others because now there is no need to hide. Being true to yourself and never giving up hope has got me to this point even though so much has happened. There’s been so much grieving of things lost and things I’ve never dealt with in my past, I guess you can’t have growth without pain right? I mean, you don’t really appreciate the sun unless you have a string of rainy days.
I now see a figure in the mirror that brings tears to my eyes of joy instead of sadness. I never thought this was possible, in fact I buried my wishes so deep I didn’t even understand them nor feel them until I was able to go through this process of transition. Since coming out I immediately have been able to feel my emotions for the first time since about the age of seven that’s right, since puberty first started. My lifelong depression is vanishing right in-front of me and is being replaced by complete joy, and a sense of levelness. The negative thoughts that were spinning around my head have now gone and have been replaced with peacefulness and a sense of balance.
I recently had my 25th Birthday of which I never thought I’d make it through to, but I did I reached that milestone and will never forget it. I was overwhelmed with the pure love and support shown from my Family who all got me cards of Son, Brother, Grandson, Nephew & Uncle it was truly the best feeling in the world to the point I savoured the cards and forgot to thank people for them and the gifts that went along with it. I was so afraid I would lose everyone I loved, afraid of what I would look like to them, afraid of what people would say and what a freak they would think I am. I thought I would be on my own and never able to talk to my parents, extended family, or friends again. I am happy to say I was very wrong.
It has taken a lot of time, patience, and communication, but the best part is that I did not lose anyone I love!! Nothing has turned out like I thought it would when I first started transitioning; instead of being shunned and vilified by people from my past, I have been received warmly and lovingly. I have many amazing family members & friends and will continue to have incredible experiences along the way.
For 17 years, I was ashamed of how I felt and stuffed down what I thought was a terrible secret, only to be met with open arms and discover affirmation, validation, and love. After only just going through all of this – changing my name, my presence, body in this world and the way I navigate it, I can just say that I feel human. And I now know what it means to be alive!
Identity is an aspect of one’s character that never stops evolving. For most of my life, I felt like I was sitting in no man’s land, waiting for someone to give me a push so I could finally feel whole. When I first exposed to the concept of gender identity and transgender, I was terrified. It was like a tidal wave washed over me saying, “Pay attention to this!” For years, I worked really hard to ignore it. I came to a point where I could not ignore that feeling any longer and I got the push I needed. I began looking for stories about others like me, searching for information and reassurance that I would in fact be okay and here I am now proud of the person I’m becoming and to do this outside of here is honestly going to be the best feeling ever! I cannot wait to see all my family and friends and receive hugs that I have been denied of since February due to COVID it really is going to be a very difficult but heart warming moment for everyone involve, but bring it on!!!
“I want to do the right thing and not hide anymore. I want to strive for tolerance, acceptance, and understanding. I want to take a stand and say, ‘Me, too.“
I will be coming out of here with more masculinity starting with the haircut, I have stopped shaving, and I have continued to update my wardrobe with some cool new styles and I feel more confident in my skin than I ever have before. I never thought something like this was possible, but now I have realized that it is okay to be myself. When I first started to realise that I was transgender I blocked it away. I never thought it was an option for me to transition. I never thought that I could become the guy that I always imagined myself to be, the guy that always seemed much more confident and less socially awkward in his skin. Now that I have started my journey as Jode Wells I have realised that I can be him, that I am him.
Looking in the mirror, I see a man more and more. He’s maturing and becoming stronger. He wants me to let him out, he promises to protect me, and I think that someday soon I’ll take the key from my heart and unlock myself from the body-cage I have been trapped in for all these years. When I leave next week I’ll be unlocking the gates and setting the young knight free. With all the support I’ve recieved from those closest we will battle this together, hand-in-hand because together you can conquer any obstacle.
“Don’t be ashamed of your story, it will inspire others”
For whoever is reading this blog, I want you to know I am proud of you. I am proud of how far you’ve come. I’m proud because you’ve accomplished mini goals you never thought were possible. I’m proud because only a few know what it’s like – to be engulfed by something that is complex, secretive and at times, overpowering. I’m proud of you because whatever has gone through your mind, you are here looking at this blog today.
I’ve been there and still living it – I have spent the majority of my teenager years dealing with a voice and a heavy weight in my chest. I have felt vulnerable and lost with feelings so confusing and intense. I couldn’t understand it, and I guess looking back restricting my eating made me focus on something else along with the dreaded sickness to push aside my gender – it made the feelings numb; it made me have a false sense of control. I remember feeling guilty for my illness – I was getting irrationally angry, I was missing plans made, constantly making excuses and letting people down. But what I found the hardest was the constant lying – the guilt I felt every time I tried to conceal secretive behaviour from my family, my friends and myself. I managed to keep at a low weight, but in a way that allowed me to feel ‘in control’. I would eat and then feel guilty and then restrict or not eat at all – a vicious cycle you’ve also probably heard of. My body was craving energy and I couldn’t stop – but then the guilt hit, and that feeling was completely unbearable. I continued to struggle with my relationship with food, it became a habit, a coping mechanism, the easiest thing to turn to when my mind felt like it was going to explode.
It was very difficult, because I felt my mind was failing me – I felt I SHOULD be okay because everyone thought I was although physically & mentally I never was. But my time here has allowed me to see beyond all that. I have started to laugh and enjoy the feeling of fresh air more and I have started to embrace the words “self-care” and “empowerment”. Empowerment is a process of becoming stronger and confident, especially in controlling one’s life and claiming one’s rights. You DESERVE to feel empowered, confident, strong, energised, loved and free to embrace your passions. Back yourself in recovery and in life and be kind to yourself, always.
“When you feel like giving up on Recovery, remember why you’ve held on for so long”
My relationship with food has been a complex one but it has been addressed and worked on to no longer make it an issue and I now enjoy baking, cooking and eating food that’s put in front of me. I am very much of the belief that the day I leave here will be even better, and the year after that will be even better. Life is waiting for me, as it is for anyone going through a tough time – never give up because there will be special moments, people and places in your life that will make everything worth it. For me Newmarket House has done that and I’ll be forever grateful to the staff and patients who have helped me along this incredibly tough journey! Now it’s the time to fly the nest and do it SOLO with the support from Family and Friends so see you all very soon because MAN is officially coming home and I couldn’t be happier!!
None of this would of been achievable without the continued love and support from My Mum, Dad & Sister, wider family and closest friends! I honestly so blessed to have had you stick by me throughout the most hardest phase of my life but I’m excited to take you on this journey with me so get packing your bags and join me for the rideeeeeee.
Firstly I want to thank every single one of you who took the time out to read my previous blog, who commented, shared or private messaged me I was honestly overwhelmed with lots of different emotions but with a feeling of finally being able to accept myself and be accepted by others.
Since my recent coming out I have been referred to as Jode along with the use of male pro-nouns which has honestly made me so happy that after all these years I can respond and be who I have always wanted to be. The journey I am now on is a very exciting one, there is so much to think about, so much to do but the main one that sticks out for me is that I now have a purpose and actually want to be on this earth and that everyday is now a step closer to being who I truly want to be. It’s made me see that this Eating Disorder really doesn’t deserve to serve a purpose, it doesn’t warrant me to be exhausted, or to plan my whole entire day around being sick, or thinking of what to eat or what not to eat! Because none of that is healthy physically or mentally.
For the last 3 years I have been sick every single day after any consumption of food/drink to maintain a low weight because this made my feminine features disappear. I was in a cycle, pattern of behaviour that become embedded to retain and look a certain way, I’ve restricted foods, or eaten to much food to appear to look like I’m okay, when actually my brain had been wired that regardless of what I have I’ll just get rid of it anyway so it doesn’t matter. BUT……..
as of the 29th JULY 2020 I have not once thought about my Eating Disorder in any symptomatic way and have managed to be sickness free!!!!!! I have not only managed to stick to my meal plan but have kept down food for the duration of the whole day whilst controlling my thoughts and feelings without feeling the urge to vomit. To some people this might be nothing, but this for me is absolutely huge and a massive break through. This has not only given me hope that I will actually be free from this Eating Disorder but has shown me a completely different outlook on life and how much better it will be on the outside with what I have to look forward to.
I have so much motivation towards what my life will look like now, all the things that I have lost sight over the years I now want back more than ever. The sickness, the tears, meltdowns, self harm have all come to a stop and I no longer want to live a life full of heartache and pure exhaustion. I in fact just want to be ME and be the person I have always wanted to be and now I finally feel like this is my time more than ever. The feeling of being “Stuck in a rut” is no more, the hours of Therapy and Support from this admission at Newmarket House has made see I can be free to live my life and be who I want to be. I’m not going to lie there has been numerous occasions where I thought this day would never come, a real sense of hopelessness, throw in the towel kind of situation and to just continuing allowing to let this Eating Disorder take my life. Now I’m actually doing it, It never occurs in mind, like I don’t even think about it. It may only be a few days in but there is no looking back!! All I’m doing now is using this time wisely to continue moving forward at my own pace and take those along for the ride who are showing so much love and support on this incredible new journey as Jode.
I came in here as Jody like a frail, closed book who was quiet and withdrawn and in a massive pickle. I was completely out of control, I didn’t know who I was or what it was I was doing apart from making myself really ill. Now something has clicked, i feel like I have got back to a place where I am fully in control, I know what I want and what I need to do to get myself to a true better version of me.
The word discharge has been thrown around quite a lot recently and I didn’t feel as if I was in a place to even be thinking of returning home, but now I feel like the time is right to begin these steps towards this and leaving here fully equipped to take on life outside as Jode. Since my recent disclosure all the work I’m doing in here is now being put into context to use for life outside and that only excites me and motivates me more to get on my way.
I am now beginning to see what my future will look like, there are so many exciting things to come on the outside that I can’t wait to get back to and begin to embark this incredible journey. My support network is honestly so big, I have a community team that are working hard behind the scenes to get things in place surrounding being referred to a Gender Dysphoria Clinic and how best to support me when I return home as well as the abundance of support from Wider Family & Friends and most importantly my Mum, Dad & Sister who are standing by me and embracing this journey and making sure things are in place to make this next step more manageable and less scary.
So as it stands people will be pleased to know that I have begun the process of the discharge pathway because the time now feels right to take the next 5 weeks in preparing for life at home. I don’t want to be here anymore, I just want to start my life off fresh and begin for the exciting new changes that are to come my way and all of that doesn’t need to be done from here as there will be a great deal of support and guidance from family and friends and professionals that are awaiting for me on my return to the outside world.
I don’t doubt for a second that It’s going to be very strange & tough as for the last year or so I have spent my time being in and out of hospital. From this admission I have taken on board that this is not a life or one I want to live or need to live in order to manage and regulate my emotions. To be happy, healthy and in a mentally and physically better place I know longer need to live that life to get the support I need. It’s come to my attention that support is always around for you if you allow it to be and I honestly can’t wait for the day I have a set date to leave here fully recovered and in a good headspace living my life as a male of which I have wanted to do for such a long time but just never really knew how.
“It’s not about being a new person, but becoming the person you were already meant to be”
In my long stint here I have managed to discover myself, talk about my feelings and have begun to laugh and smile again and see that there is in fact a really good life waiting for me outside of these walls one of which consists of not having an Eating Disorder or feeling so mixed up in the wrong body with people not knowing and being unable to transition into who I want to be to make life easy. Now my future is looking really exciting not only for me but those around me who are supporting and routing for me along the way.
The transition from my youth to now has be anxiety-induced, especially having to navigate the physical changes and social pressures to fit in and allowing the feeling that my gender should match up to the body parts that I have been assigned with, but there is only so much suppressing you can do. 17 years of pain and looking at a reflection that just isn’t right!! Now I have allowed for these feelings to be addressed and those closest to me to be apart of this I can now begin to start the transition phase in to becoming a male. It is going to be a very rollercoaster of a ride with many twists and turns and huge decisions to be make but all of which I am very excited by and I hope everybody else is too because as the song of High School Musical goes…. “Were all in this together”
The Dysphoria has created a big feeling of dissatisfaction, anxiety, and restlessness with the great discomfort of being in a female body. It is so intense that it has interfered with my normal life and social activities, leaving me feeling very isolated and I have missed out or felt detached from those closest to me of which I want to get back to and rebuild relationships because I simply don’t want to lose those who mean so much just because of my gender. Now that everyone is aware there are small steps that I can take in the interim period to move one step closer to receiving the treatment that I need.
“It doesn’t mean the end of everything, but more the beginning”
As of Wednesday I will be making another change into the new person of Jode and having a complete restyle of my hair, it’s going to be super different and could be a love it or hate it moment bit like Marmite. Putting that to one side though all I want to do is embrace it and get used to the change so that it will be a worthwhile stepping stone into making me, ME. It has been something I have wanted for a very long time but never had the confidence or reasoning to do it and pull it off without fearing negative comments but now I’m ready and fully committed and full of excitement towards this very important feature that will begin the first part of my appearance transition. I’m thinking of videoing the change so watch this space if you would like to see my Wizard of a Sister help me brave the shave!!!
As with regards to my weight I’m still underweight but in the last few days I have noticed the bodily changes so now the weight restore can begin along with coming to terms with one of the harsh realities of recovery that it can take a while for your body to return to that of a normal GI functioning. This can be a physically and emotionally uncomfortable process that makes you vulnerable to returning back to your prior Eating Disorder habits. But I have to stay strong and stick with it. With the right help and guidance, I know I can get through this and enjoy all of the wonderful advantages of recovery without the painful stomach symptoms.
The stomach discomfort I have experienced is like when you’ve been to an all you can’t eat buffet (Cosmos) and filled your boots with several helpings, I was that full I asked a staff member if I could have C-section rather than be sick hahah! Obviously she laughed but did also assure me that it is natural to now want to avoid the pain by going back to my usual way of wanting to feel empty or to decrease food intake. I am trusting the wisdom of the powers that be and am trying not to problem solve on my own and take the help that is on hand 24:7 to ensure I do not revert back to old ways.
The body does a lot to compensate when you are malnourished. One of the things it does is slow down how quickly food moves through the GI system, this is done in an effort to improve the absorption of essential nutrients. The changes in how are bodies process and absorb food are caused by the recent disordered eating patterns. I know that this feeling will pass and my body will adjust once I have achieved an appropriate nutrition level and the body feels that it is getting enough of the vital nutrients that it needs. It will then hopefully begin to move food through more efficiently to speed up the healing process of weight restoring and getting myself out of here.
My Eating Disorder didn’t happen overnight though so all of the GI symptoms associated with this are going to take time to resolve. It is unfortunately one of the last systems of my body to get back to normal during this recovery period, so I need to be patient with this and work with what is comfortable along with the experienced professionals who can do nothing but support you through this transition period. Just formulating small incremental goals that support my recovery as well as beginning of minimising the GI symptoms. The stomach discomfort during this period is going to be extremely difficult but I have the next few weeks to focus solely on this and in turn I have no doubt that I’ll overcome this just like I have thought off the sickness!!!
“Your body can withstand almost anything, it’s your mind that you need to convince”
I have managed to switch my thinking from planning my day around food & eating & being sick to planning my future and I honestly never thought the day would come but now it has and seeing the progress on more than one occasion I can honestly say I have not even thought about looking back! This period for me is now about working with my therapists to contextualise everything into life at home so I can start to begin the transition of getting back to a life that I do deserve to live fully.
I am running on so much adrenaline from the buzz that being in a better mindset has created all because of the huge weight that has been lifted which has ultimately allowed me to be free and be who I’ve always wanted to be. It has bought up lots of emotion and yes the remainder of my time here is not going to be easy but I’m so excited to better myself in the coming weeks to allow to make way for my future and what it will have to offer. There are going to be many more decisions to come along the way, bumps and hurdles as I look to transition to the person I have always wanted to be but my god it will be so worth it and my gosh is it exciting and refreshing to no longer have to live a lie!!
“Old ways won’t open new doors”
My recovery must come first so that everything I want in life doesn’t have to come last!
Since a young age I have known that something wasn’t quite right within my body and what will always stick with me is saying that I want to be a boy and have a sex change at the age of Seven. It was dismissed daily by myself and others too and was just of the growing up of a “Tom Boy” phase. It has however sat so true to me and has never left me and I still feel the same way towards myself and always have and always will and now it’s the time to come out to progress further in my transition in becoming the person I want to be with pride.
Gender dysphoria is a disorder where individuals experience discomfort with their biological sex; the individual was born as a male or female but identifies as the opposite sex. An example of that is I was biologically born as a female but I identify as a male, and that’s what you call gender identity.
I want to use this time to become fully accepting of myself and let all of you know respectively that I do have Gender Dysphoria and am Transgender because the body I was assigned with at birth is not what my body wants me to be so to put it in simple terms I do in fact represent as male and not of a female.
When I was younger the thought that probably crossed most of peoples minds was again just me going through the “Tom Boy” stage that eventually I would grow out of. For me I knew this was something a lot stronger but I have just never found the confidence or ways to express how it was I actually felt. Suppressing it and pretending to be a girl seemed the best way to deal with this and felt like to be accepted I had to be that way so I did my upmost to keep up with this; like wearing make-up, dressing like a girl when out with friends, or asking advice from my Sister of whom I compared myself to be like as I felt that was what was needed to let go of the feelings I felt surrounding being a male. Just as I forced myself to have boyfriends and physical relationships because that’s what society made you feel you had to do. After coming to terms that this in fact okay and there is a place for you in society no matter your gender or sexuality that I am now beginning to embrace me and be me and not force things that aren’t necessary.
It’s only now after being trapped inside of this Eating Disorder that has controlled my life for several years as a a way of maintaining a certain weight and shape that I have finally had enough of hiding and damaging my body physically and mentally. It’s completely exhausting faking and living a lie and now being in this environment with 1:1 support and therapy / group sessions I have come to the ultimate conclusion that to move forward with my life, I need to be open and honest with myself and to those of who I love so that I can move forward in my journey with the the correct support.
I’m not embarrassed to say that I was ever a woman as it’s a part of who I am and how I was raised and what I still am at the moment feature wise. Just having the perspective of both genders has been difficult as I have longed to feel more comfortable in my own body and wanted to have certain masculine features such as a flat chest and my Eating Disorder has served a real purpose in this. Now it is out there, I’m currently being given the support and correct guidance to move forward throughout my transition. My aim when I came here was to walk out of these doors happy, healthy and comfy in my own body, rather than the unhappy, unhealthy, depressed one who I walked in as.
Rejection from family, relatives and friends is something that I have worried about for a very long time, so to keep it hidden and pretending to be something I’m not seemed the best way as there has been a lot of guilt and shame and that those around me might not take me for who I truly am.
Luckily for me my solid family base and tight-knit group of friends were hardly surprised by my decision when I came out to them. They have in fact been incredibly supportive and want to begin and be apart of this journey with me. In fact a lot of them have said they saw it coming but just didn’t want to say anything as it ultimately has to come from within you. I have learnt that people who truly love and support you, your gender identity has little to do with what they love about you. This has stuck with me over the past week and has been something that I have cherished so that when I leave Newmarket House I have the support network to lead the life I have always wanted and truly live.
Being referred to a Gender Dysphoria Clinic is just the beginning of this journey and will take a long time to begin the process of changing physically. For me the use of Testosterone Hormones and Top Half Surgery are the two most important changes for me as this has been something I have struggled with the most. The wait and how quickly this will happen is a long, long way off but for now it’s time to commence living as a male, by continuing to dress like a boy, getting the all important haircut that I have wanted for sometime along with being referred to as he and the use of male pro-nouns and being called Jode or Jod rather than Jody.
My pre-transition self knows that however more difficult life gets, fighting the world as your authentic self is better than fighting yourself on behalf of the world. Nothing is worse than constantly beating yourself up. I feel like I’ve been renting a space in my body for what seems like an eternity. Nothing feels more exciting, scary, and wonderful than deciding to really move into yourself. I just want people to know just how much happiness this transition is going to bring and for me to not be living a lie.
Which gets me to the reason why I told you this story in the first place and that is because it hasn’t been easy for me to be myself. We live in a world full of discrimination and hate, going from homophobia to racism to transphobia and people who are sexist. How I see it is, we’re all humans and there is always going to be that one person that just loves pointing out the differences in each and every one of us. Diversity is a beautiful creation and I just don’t understand why people won’t accept it. I also don’t understand why people get a buzz off what doesn’t affect them.
A lot of people say, “Why are you making it hard for yourself?” “Why can’t you just stay the same?” And a lot of people think it’s a choice. Well, it is but it isn’t. I know that doesn’t make sense, so put it this way: Yes, it’s a choice to transition into the gender you identify with, but having gender dysphoria is not a choice. For example, I could chose to stay as a female, which is biological sex at birth. However, I would feel really uncomfortable with myself and no-one should have to feel this way about themselves.
This is my first time sharing my transition story even if it’s just the beginning. I appreciate those who have just begun to support me and listen and to those that are now reading this with no clue or maybe had some idea as to what has been going on but for now I can openly say I’m a proud to Identify as a Male and will continue this journey with the support of loved ones!
I am still currently here at Newmarket House to tackle this Eating Disorder and although it’s taken 6 months to fully open up and be honest I have now found the point of stuckness that has been holding me back as a coping mechanism to keep my weight shape as a form of masculinity. Now that I know what I am feeling is okay and normal when dealing with Gender Dysphoria I hope that this will now become easier to move on and fight off this horrible illness of Anorexia Nervosa/Binge Purge Sub-type and allow me to live a free, exciting and overall happy life with lots of new opportunities, surrounded by those who will continue to love and support me on this new journey as a male.
So from now on I would like be known as a son, a brother, a grandson, a nephew, a cousin, an uncle as I am HIM so call me HE! I know that’s quite a massive change for me and others to get used to but after all this is me and who I want to be and this is a first step of change that I can begin doing now whilst I await for the rest of my transition to start.
I’m going to end it there before I shed anymore tears and just emphasise that all “I am person, a human being, and this is a human life. This is reality for me, and all I ask for is acceptance and validation for what it is that say that I am with it being a basic human right.”
After much exploring on a day-to-day basis within Therapy I have broken down each individual part of my Autism to give my Family & Friends some form of understanding as well as other people who may be struggling to come to terms with who they are. I am no where near the point of accepting that this will always be carried with me but I’m slowly starting to understand this part of me and what it plays within my daily life. So I’ve broken this down into parts as this is the easiest way for me to tackle each element and give everyone an insight into what life is really like to live with as well as the part this plays within my Eating Disorder by having these kinds of struggles .
When someone asks me multiple things at a time I tend to lose the bigger picture. I’ll only remember part of the second question and this creates a problem. What should I do now? What do I say? What was the most important? Eventually I will then freeze because I lost the main point of the conversation and for a lot of social situations this can be very embarrassing.
I find it difficult when things go differently than planned. I have now started to consider that not everything goes the way as planned and that things or appointments may be cancelled at last minute realising this earlier on makes the process that little bit easier. I do become increasingly anxious and need a bit of time to prepare for any changes that may arise.
There are also things I want to change continuously, and things I don’t want to change at all. Some things change without me wanting them too and realising this does take a bit of time – for e.g. a new taste sensation to make way I have to carefully evaluate and change the way I eat which isn’t helpful when battling with an Eating Disorder too!
The changes I find most difficult are the ones where I have to bend over backwards to do. I respond okay to most changes when I am feeling well and can cope quite well with this, but if I am having a bad day the smallest of changes can shut me down. I know that change is a part of life but when things go differently I can feel uncertain and bothered by it. I know at times I can deal with change, but it does have to be announced with some pre-warning as I like to know in advance what it is I am dealing with.
I feel I always fail in this area as I don’t really understand why people communicate so vaguely. In the moment I often don’t know how to respond to someone; I then realise how I should have responded later on. It’s pretty tiresome in important conversations as well as becoming quite easily taken back ending up being unable to talk anymore. My head freezes and I fixate on how I’ve just interpreted the conversation and I take things differently than the way they were intended. I can come completely confused that it makes me feel powerless and out of control. For me I find it completely easier to communicate writing down than it does orally. Hence why the world of blogging has helped to address this.
It really affects the processing of information and I always seem to distinguish three ways of communicating that all happen at the same time; Verbal (the words), Non-verbal (the facial expressions) and gestures. I don’t seem to be able to channel all of these communications at once and am unable to detect all of these signals at once. So you can see why this is such a difficulty to move on from.
I seem to have other diagnosis that inflict on my Autism; which comprises of 3 different areas making the need to hide these all more the greater because you don’t want the embarrassment or judgement.
Depression & Anxiety
All of these are difficult but can mask my Autism and I feel it also masks a lot of the above comorbidities. I tend to get over stimulated and stressed out rather quickly leading to outbursts & meltdowns, which I believe I can hide and mask very well leading people to not notice any of the above because I will do this away from people and self-destruct in my own way behind close doors just to elevate the stress and tension this has caused.
Sadly, I’m one for details right down to very last bit which often leads to annoyance in people around me. When someone tells me something I will trail off thinking about the details allowing me to take the conversation completely out of context. When I listen in conversations it comes to me in parts rather than as a hole. These have to be merged together in my head to clarify exactly what is meant. In one way or another my brain is programmed to absorb each piece of detail and it’s only complete when it all pieces of the puzzle make sense. I feel like I demand a lot of attention by having to ask questions, so I tend to stay quiet because it sits better with me this way.
I feel exhausted very often. I feel this is due to the amount of stimuli I have to process during each given day. I have to stick to my routine and boundaries because it feels safe to me and when there are lots of people around and there is lots of communication it causes overstimulation and I become extremely fatigued and overwhelmed. Social situations outside such as travelling on public transport or crowdedness can cause extreme tiredness. This is why I prefer to drive so that I am in control getting from A-B and can choose when I have had enough of social situations.
For me this is about the effects of sounds, images and touch amongst other things that can really get to me. I feel huge sense of over-stimulation very quickly which has developed further as I have got older especially around noise and when there are many people surrounding me. Sometimes I can stand noises better at one moment than at another but I do feel these are senses that have developed strongly and are harder to deal with especially when trying to focus and concentrate. The worst sounds are the ones out of my control for e.g. fire alarms, Fireworks etc. Having lots of people around me to can be very uncomfortable and over-stimulating unless this is a situation I have put myself in and have some control over. I cannot pinpoint exactly what/why that is. It’s one of the most frustrating things and consequently leaves me unable to communicate, which for those closest can often appear quite difficult to understand. I also like the feel of a heavy weighted blanket not because I’m cold or anything (although that’s what ill tell everybody) but because its a sensory feeling and huge sense of comfort that can calm me down in the given moment and provide a huge sense of security and feeling of home.
During Primary School I was very quiet and reserved and didn’t like attention and never asked many questions, I just hid and kept myself to myself and found that I was pretty good at learning but during Secondary/High School it became extremely difficult. I was bullied a lot for my hair colour and always playing with the boys. As I grew older I needed extra learning support which came with its difficulties as you didn’t want to appear different which resulted in my disruptive/aggressive behaviour as a way to seek help. I realise now I was partly cheered on to do this but also a form of being unable to stop myself from doing this and in the process was picked on because I behaved differently and now I realise that those behavioural differences were typically autistic and a way for me to seek some form of support that I wasn’t actually getting. I literally hated every second of school and even after being diagnosed at 13 it took 2 permanent exclusions from High Schools to be moved to a specialised unit that specialised in social and emotional behavioural difficulties to be able to get the individualised support I needed.
I have a lot of difficulty expressing emotions and hardly ever do it when people are around. I’m often asked if I’m okay and I’ll say yes but ultimately deep down I feel terrible (It’s only now after all these years that I’ve started to open up and talk about my thoughts & feelings) because I have no choice, because to get better this is what has to happen in order to move forward. I have found it difficult to get to the core of what it is I was feeling with this recently being a recent development. I don’t like to show emotions that make me vulnerable. My internal emotional side is such a mess to the point that even common sense is out of my control.
If I flip this round towards other people’s emotions, I can show empathy when someone is enthusiastic but when someone is sad I don’t want to do this. I block out the moment and don’t know what to say, nethertheless I do understand that the person may be feeling sad, I feel it with them I just can’t express it. It may come across insensitive but deep down I know I’m not.
When it comes to clothing, I only really have a couple of items that I feel comfortable in mainly this being sportswear (Thick weighted heavy hoodies, joggers or shorts matching in colour co-ord from top to bottom including socks). My skin really cannot bear certain textures of clothing for e.g. silk being a very difficult one to manage and can send the hypersensitivity quite high so I will always avoid this and stick to what I’m comfortable with.
Images / Imagination
I think in images. I see things in front of me when I read or hear something or talk to someone. This even happens when I write, even when I’m on the phone with someone and they say I’m hanging up now, bye; I would see them hanging off something.
I feel like my imagination is very withheld, I would much rather stick to concrete activities such as playing with marbles, puzzles & football rather than role-playing games. I find it hard to distinguish between what is real and what isn’t which sometimes leaves my mind in abit of an overload. For me everything has to be based on facts, for e.g. I can type out how and put together factual information based on myself or what I know because there is no pressure, but if something is set for me to do and I don’t fully understand I will stare into space and look quite vague and not be able to produce anything. I love applying my imagination through writing and art because I can really lose myself in my work and I notice that I really enjoy doing it, it gives me something extra that I can express the stuff I write, reread it, create and live through it.
In Primary School teaching was completely different, it was more of a relaxed approach and a lot easier to manage or cover up that you might not of understood what was being asked, but for some reason it didn’t matter. As I transitioned through it was hard to know what level I should be at, is it best to be the lowest and sail through or be at the highest and fail or is it somewhere in between? Because I was good at some things but terrible at other subjects. English was always the stronger subject but Maths proved very problematic. I am terrible at knowing the essence of things, I forget a lot, and my attention span is incredibly bad. Myself and numbers just don’t go hand in hand whether this be telling the time, money or mathematics in general.
When I left the pupil referral unit I took up the offer of an apprenticeship at Norwich City Community Sports Foundation; Age 16-18 – My first year at CSF saw me coaching in Schools covering lessons and extra-curriculum clubs in many schools across Norfolk & Suffolk. I gained and completed many qualifications which included; An NVQ Level 2 Apprenticeship in Sport & Active Leadership along with a variety of many Football/Sporting qualifications to enable me to progress forward in the career path that I had chosen. All this came to an end when I wanted to push myself further and gain other qualifications I was told I was not ready. To be told that was a huge setback for someone who felt like they were able to go that one step further. This left me with no choice but to look and find another job which would allow me to use all the skills I had worked so hard at gaining and to allow me to gain more qualifications within this field that I dreamed of doing.
I was soon able to take on a job at Dell Primary School: 2013-2017 – Age 18-21. After feeling knocked back by my previous employers and not feeling good enough, I made the decision to resign in hope that with bit of luck I would get the job and luckily for me I did. This was the start of a new but old exciting opportunity. My time here was well spent and I gained many more qualifications and allowed me to my own stamp of things to do with the organising of PE Lessons, Lunch/After school Clubs, Swimming and a Sports Leaders program teaching all pupils ranging from Reception – Year 6. I am quite confident in saying that this job isn’t exactly Autism proof but the reason why I kept the job is because it allowed me the opportunity to give back to children where the education system had failed me. I loved the job so much and felt at home and in a safe environment but unfortunately, I’ve had to pay for this with what a call a physical burnout and unhealthy relationship/balance with teaching sport and playing football the expectations/pressure that felt so high. However it was honestly the best job, I felt comfortable with it and a massive sense of being at home in a safe environment whilst building relationships with staff, pupils and parents. I was well supported by all and I think everyone could see my passion for sport shining through as the rapport I had with all was excellent.
Sadly, though all this did have to come to an end as the school became an academy and the people who took over decided they wanted outside provision from Norwich City (My previous employer) instead. Due to having a generic contract for support staff I was forced to be a Teaching Assistant within the classroom and all of a sudden, the realisation hit home that what was to come would be a great struggle. After quite a lot of hassle and various other employment jobs I took up working for my Dad’s local company Window Wizard in 2018 working in the office organising and managing day to office roles; Quotes, Invoices, Telephone Calls, Customer Service and organising of day to day work load and appointments for Repair or Installation work of Windows, Doors, Conservatories, Garden Rooms etc. This job allowed me to make it my own and be my own boss with the full support from my Dad in order for this change of career to be successful, flexible and meaningful.
I take language quite literally to fullish extent, I’m yet to learn and find ways to do this to be able to communicate better & easier. I also see the literal meaning of something that’s being said first, it is only after that the non-literal meaning of the way it was intended I understand. I am therefor only able to respond when I know what is meant.
Taking something literally can be quite funny at times when there’s an expression that I can actually see happening. It can lead me to chuckle to myself every once in a while, out loud to disregard the fact of what it was that was actually meant. Pretty often ill see things in front of me quite literally but I just won’t understand it so making a joke of the literal interpretation is the best way for it, even though sometimes this can lead to misunderstandings for the other(s) involved.
I seem to be quite lucky in one or two areas of this, I only suffered abit with balance and co-ordination growing up but was super lucky to be able to dismiss this. I belonged to one of the better ones at sports during school and always participated and engaged well especially because it was physical and the ideal way to notice and keep on top of my weight and shape.
On the flipside I suffer in other aspect of group situations; for e.g. I find it extremely difficult to place myself properly within a group or space up a table and can find my attention span also prevents me from keeping my head within the game or traffic in conversation.
This is probably one of the most important things for me, I really need clarity, especially when things are unclear otherwise it’ll play on my mind and I’ll just keep asking until I have something to work with. I need to be in the know and know precisely what it is, when it is, or where we are going as I don’t handle uncertainty very well. I try to be flexible and let things happen but sometimes I succeed sometimes I don’t.
For me it is very important to have a general schedule of my week and work towards this to a fine art because I don’t feel like I can always adjust to change. I use reasoning to try and figure out how much time something will take so that I know whether or not to plan something after. It does differ per situation as to what happens when something isn’t clear or precise. Sometimes I’ll endure a meltdown and this will be visible or masked non-visibly depending on the situation. I don’t beat around the bush and therefor just say it exactly how it is some people can grow angry with me or appear irritable or impatient with this even though I’m only trying to get a clearer picture.
I am very rigid and obstinate in the way that I think and can find it hard adjusting to other people’s opinions. The older I’ve become the more I have noticed this. It’s not easy because sometimes I just simply don’t understand why someone else can take a point of view that I can’t take.
I have a strong sense of opinion and sometimes dump this with a lot of conviction which can make myself unpopular with those around me. It’s a part of the strong sense of justice that I have always had. When something that’s unjust I will fight against it even if it means standing alone. I don’t want to be obstinate but because of my fragmented thinking and being so strongly focused on one aspect I can find it quite difficult to see the other side of something. This is however dependant on the situation or people. I never seem to have enough time to think before I speak so it never occurs to me to think about it like this, or like that!
Structure is an incredibly important thing in my life, but I’m just not always able to create this but I know I need it very much. When there is structure to things it prevents me from losing track and being in a complete form of chaos. The daily routines though are just a form of system in my own head which I find increasingly important.
For me having difficulty switching from one thing to another is related to being in my own world and sometimes I perhaps don’t behave in a way that is socially acceptable. It is difficult for me when there is no clear transition between something and something else. For e.g I might be talking to someone about something very fascinating but the person listening to me might not think it’s interesting at all and I can become very quiet all of a sudden. This is what I call the switch and when it happens it’s difficult and takes up a lot of energy.
Being Autistic sees me focus heavily on the details and have difficulty seeing stuff as a whole. I’m unable to make some coherent out of a situation which effectively takes more time and see’s less context sight within a situation.
I think in a type of circle from myself to others and back again. I constantly compare myself to others and their relation to the world. I believe I am always right and I don’t try and deviate from that. I feel like I am a good observer but on the other hand forever missing a lot of information and because of this my brain is a lot slower and is more difficult to apply in social situations.
I have lots of functions and encounter a lot of problems with impulse control, supressing obvious but incorrect responses, adaptation to strategies and self-monitoring which play an important role in control, planning and flexibility. You could compare it to a factory; everything works perfectly but when the routine has gone or something happens unexpectedly, everything goes off track. All of which lies with the processing of information and that every needs to be processed; sounds, smells, communication, language, emotions, urges, feelings, nutrition, hormones and medication.
I like to withdraw myself when I am over-stimulated. I have to be alone. I know I will ruin the atmosphere if I hang around and pretend to be fun to be around because when I’m over stimulated I have an incredibly short fuse.
I often withdraw myself from friendships every once in a while, because I have too much to worry about and I can’t have anything else added to that. People often sense that something is wrong or I am angry or something. Not everyone seems to understand I don’t always feel like speaking or meeting and I find this very difficult to manage when you just want to hibernate into shutdown mode. I zone out and become a bit dreamy or become short and blunt with my conversation almost hinting for that person(s) to stop talking to me.
I spend a lot of time doing and enjoying stuff by myself especially on the computer and creating my own versions of things and putting my spin on it, because I get satisfaction from completing this and a sense of achievement. I find this most helpful when trying to zone out and move myself away from the feeling of anger or frustration or sadness towards a situation. I consciously withdraw when I want to keep my thoughts to myself, partly to do with the fact that I may say something too confronting to someone else or that leaves me open in a vulnerable position.
So in a nutshell that’s me and one of the many battles which I deal and suffer with on a daily basis. A paralysing exhaustion which results in many ongoing struggles but one I am learning to accept and face and work on for better acceptance of myself. Im beginning to use this time effectively to put together the final pieces of the jigsaw and put the pieces together to learn to finally accept who I truly am!
Well if this Lockdown has taught me anything it’s that Family & Friends are incredibly important during tough times. I would be lying if I said I wasn’t struggling right now, I’m missing home, I’m missing my beloved Family, Dogs, Friends and having a normal life away from lockdown, Newmarket House and my Eating Disorder which has consumed much of my life.
There are voices in my head that I’ve never heard before, voices that are extremely unkind. I have strict rules that I have to follow else I punish myself. Which has always felt tough which made my weight drop in the first place, along with my mood drop and normal life becoming really hard. I have fought so much to not let this take over, but it did, it has. Slowly it took over, slowly, but aggressively. Anorexia Nervosa is not something that can be a small part of you, once it takes hold it wants to be everything. I tried to fight it myself, but I failed. My family and friends tried to help me fight and understand, but that wasn’t quite enough either. I agreed to enter hospital treatment because I want change so badly. Thursday 16th January I took those first terrifying steps through the door; I wanted to cry; I did cry. It was horrible. It was hard. I did not want to be there but I knew I needed to; I was here; and am still here and will be for sometime.
It has taken me forever to open up and get to this point in the first place so now having a spanner thrown in the works and learning how to cope with the new norm from the Corona Virus is incredibly difficult. I often feel so alone and panic when things get too much, I self-harm by punching walls or kicking and destroying things to let out my frustration and as well as challenging my Eating Disorder there is the diagnosis of Autism which is now being addressed and me slowly becoming accepting of this alongside the behaviours of my Eating Disorder to distinguish the link between the two strong characteristics.
I never thought I would be the type of person to write about my experience with an Eating Disorder as I always feel that people would just think I was lying or attention seeking. I am still scared about sharing this because I don’t want it to change how people see or treat me, but then again I suppose this is also the point I want to make so people are aware and can understand.
I have never learnt how to interrupt the oncoming surge of emotions that I feel. So now looking into recognising what my anger and all this is towards, and acknowledging that: yes, responding angrily and being sick may feel great initially, but it doesn’t in the long run. I am now exploring different ways of learning how to respond to them in a more appropriate way so that this doesn’t cause harm to myself because when the stress then develops into anxiety it can bring up a sheer load of panic and sadly this is just the way my brain reacts when I feel I am anxious or angry.
If there is one positive I can take from this time during lockdown is that I know I can change things. I have shown in previous weeks when I’ve been in the right mindset that I can achieve good things and push and delay the time of the sickness with the latest time being 3:45PM. For most people who don’t know or haven’t read the rest of my blog won’t understand the ins and outs and all what this consists of but instead of being sick after every consumption of food for reasons that I am still exploring, I have however managed to keep Breakfast, Snack and Lunch down which in itself is a massive achievement from my previous patterns and behaviours.
“It always seems impossible until it’s done”
Each day I start the day off with a Motivational Quote which is relevant to my current situation and this helps me to be positive and get ready to challenge the day ahead. The eating disorder head is so so strong along with behaviours of your own or of that come from other patients that can easily put you off track. I am doing my upmost to not let this get in the way but with the restrictions now in place from the pandemic you’re literally faced with it 24:7 and there is no escaping this. Seeing it visually easily sends you off course for the day, and as they keep saying in here “put your blinkers on”, turn a blind eye and focus on you!! All that is certainly easier said than done but it is true and only I can challenge myself and do something about it. It is a tricky situation to be in as well as trying to have some compassion towards those who are also struggling like you.
I am faced with a wide range of struggles that have now been bought to the surface which makes it even more difficult for me to manage. My OCD is at an all time high, my delayed processing and understanding due to my Autism is also being put to the test along with the sensory overload that comes with this. This leads to worst part about me that I hate which is the extreme frustration and anger that has pent up inside over the years and just gets expressed in the wrong way. I have only now just started to open up about this to help people understand more but actually it then leaves me feeling more vulnerable and exposed leading me to interprate things in the wrong context which again is almighty hard and either leaves me in floods of tears or like a raging bull ready to be let loose.
I honestly would love to be able to flick a switch to make this all stop, I would love to understand what this all means, I’d love to lead a normal life and not have to struggle everyday. The matter of fact is though I have to do all that, I have to begin to allow this time too accept this and explore all avenues of my struggles because the other alternative is to go back living the same old miserable life pretending to be happy when your not. I’ll only be letting myself suffer and those closest to me too as they’re the ones who have to sit back and watch.
“Let go of guilt and shame”
I know I’m in the best place for recovery but its opening up to this fact and allowing for these thoughts and feelings to be accepted and explored in greater depth. Breaking down and segmenting each difficulty whether that be the Eating Disorder, Autism, OCD or Grief, Life’s Ambitions all of it will be playing a contributing factor and until this has all been established the process to getting back to things I love will be the ultimate gift of all.
This process is quite an intense experience though and I can’t begin to tell you on somedays how increasingly hard it is to even want to get up out of bed because you know it will be same shit different day but as each day passes it is ultimately helping me reach towards my goal even if I don’t see it quite yet; which is to be free from Anorexia Nervosa, to understand more about my Autism and how to deal with my emotions, learning to decrease the OCD and not be such the perfectionist and to overall be happy and comfortable in my own skin and just be who I am! All the people that our supporting me or making contact messaging in some way shape or form are the ones who are helping me realise I can do this and there is a better life that awaits outside these doors of Newmarket House.
These of course, are probably the typical thoughts someone with this illness has but I still find it hard to relate them. It’s such a strange and dangerous cycle of thoughts, and of course the reality is having an eating disorder is just a mask of control that I use to manage what’s really going on in my life. The truth is my life has and still is ruled by my weight, routines and structure around food and this is the reality of living with an eating disorder. I always feel like the odd one out or that people just don’t really understand me and I know I have pushed people out and avoided social gatherings because I’m afraid of losing this warped sense of control I think I have on my life. And this is the reality of living with it.
So, I just want people to know that if I am distant or decline to do things on some days, it’s more than likely because there are million other thoughts in my head I have to battle with before making a decision. It’s not that I don’t want to speak to you, it’s just too much of an overload. I have encountered panic attacks by deciding whether to do it or not do it and get in such a state I just cannot face it and disassociate myself from events going on. I want to write this to break these secrets I have been keeping and hope that people will understand why I sometimes act distant or detached. I feel like my eating disorder has taken away my personality and identity and I don’t know who I am or what I actually want to do sometimes.
“You never know when a moment and few sincere words can have an impact on a life”
I consider myself to be extremely lucky to have a family and a set of friends that I can always talk to and trust not to judge me. I always know that if I was having a bad day, there is someone I could talk to and I truly believe that without them, I would no longer be here today. I still have bad days and I still have times where I self-isolate and disassociate myself but I’m starting to control that now. I know the importance of being kind to your body and mind and being able to love yourself is something many find extremely difficult, me included but is something I’m working on.
“You cannot change what’s going on around you, until you start changing what is within you”
I have come to terms that recovery doesn’t always happen for some people as I have seen this first hand. It does feel like bit of a school reunion here at the moment with a bunch of muppets that don’t want to change and with that I have now begun to have alternative thoughts and compare that this will be the reality for me, but actually when I’m in the right mindset it’s not what I want for me and I am prepared to fight for a life worth living and fully recover and be free from all the shit this horrible illness has thrown up for me. I’m still very young and have lots more that I want to do and achieve and I am not prepared to let this stop me from getting to that happy place. All though I can only see a small amount of progress at the moment it’s a battle I am prepared to fight for, I see a lot of hope and want to take this chance/opportunity to gain the tools to be kind to myself and make me feel happy again, along with feeling comfortable within myself to make a daughter that my Mum & Dad can be proud of.
Even to this day, I want recovery more than anything, yet struggle with the process of what that means. As I eat and function normally and crave that as a healthy human, this demonic part of my brain still pulls me back like an annoying toddler craving attention. I want so desperately to focus on my recovery achievements. In gaining weight despite the fact that everything in my body and mind was and still is screaming at me not to, every single day I have to overcome a mental hurdle that many people will never experience. It can be frustrating that nobody other than someone who has experienced it themselves really understands the significance of the type of courage that you have to rev up all day every day in order to get into a recovered body.
I hope one day I start to see my body as a trophy. I’ve said it before and I’ll say it again: eating disorders are so poorly understood and misconceived. They are seen as an individual that is heavily represented as a young, white female, making an active choice towards their Eating Disorders irrespective of the feelings of those around them.
“Don’t let the scale define you”
Anorexia is not a physical illness. It isn’t just about weight or BMI. Being a ‘normal’ weight is not an indicator of recovery on its own. Eating disorders are mental illnesses. Weight gain and reduction are just physical symptoms but not indicative of an individual’s wellbeing and currently I am still along way off being restored to a healthy weight range. It’s so damaging to somebody in recovery to be labelled as ‘recovered’ simply because they’re weight restored. The message it gives is ‘get on with life’, ‘you’re better now’, ‘you don’t deserve support’, ‘you were never ill in the first place’, ‘you just chose to live that way!’ I always assume that people will call this a silly phase that I am just going through but actually all of it is very real.
What people don’t appreciate is that one of the most difficult parts of recovery is being able to accept a ‘normal’ body while the mind is still ‘anorexic’. Becoming a healthy weight means that a lot of buried feelings come to the surface. These can be painful and difficult to process, It’s also a critical point in recovery – things get tougher emotionally, depression and OCD, Autism and General routines.
Therapy is helping me to unearth these problems. The key question for me is to answer and with the discovery to learn valuable things about yourself. It’s a difficult climb, but one that has to come from inside yourself and not from society’s voice and knowing that the people around you understand that no matter what you’re physically showing, it is no representation of the journey you’re processing from within.
The ‘all or nothing’ high expectations will soon become a good thing, once I learn and allow to use them to my advantage, take a step back and accept a leg up when needed to be able to enjoy the ultimate view from the top. I am starting to take personal development a bit more seriously, and I’ve spent a good amount of time reflecting on my recent past as a result through Therapy. I suppose what I’m trying to do is paint a picture of where I am now and hopefully provide a bit of a ‘sunshine story’ to end this story on a positive note.
I have decided to continue writing and adding to my blog to see how far I have come later down the line and to start creating a new beginning for myself and live a life where it’s not just me and my eating disorder but it’s me and the rest of the world and to also help others in the process to know that any eating disorder is not a way of life but a debilitating illness which if not accepted will control every aspect of your life.
A massive Thank you to those of you that have stood by me throughout my journey so far – I am always thinking of you and as the Queen said “We will meet again”
“Remember that the reason your doing this, is to make your life better”
The past two months have quickly flown by and still I find myself staring at the same exhausted, weak, depressed, pathetic, lonely self in the mirror. Being in here has opened my eyes to a whole new world of what my Eating Disorder is actually all about and it’s very scary and difficult to see a life without it at the moment because it is what has been my coping mechanism for a every long time as well as everything being magnified and made to feel a whole lot worse, as every minute of every waking day is spent thinking about the disorder that is consuming your life.
The current climate with the COVID-19 has put my journey on a bit of a hold and it has made me crumble and see my try to take my own life on two separate occasions or cause physical harm to myself to try and take the pain away. I know it sounds pathetic and it is embarrassing to even admit it as well but it has just been extremely difficult to see light at the end of the tunnel when it literally feels like I am only in here to currently be fed. All groups have been put on hold from Body Image to Self-Esteem, Perfectionism, and Management of meals along with the most important thing of all Therapy which is now being held over Skype (Which is very very weird). All of these groups are to help aid recovery and that at the moment feels as though its holding me back from reaching my full recovery and although there is staff support throughout the day this is very minimal when you find it difficult to reach out and there being a lot of us now confined under one roof, confined by COVID-19 rules and there being no structure or routine to the day.
It has driven me absolutely insane, I hate not having structure in my daily routine and it is constantly making me feel like a volcano about to erupt and on occasions this does appear to happen, whether it be punching walls, headbutting the wall, smashing plates or worst of all completely breaking down and crying to the point I exhaust myself and cry myself to sleep. Over time it just builds up to the point you reach your peak of feeling a sense of hopelessness because I feel unable to ask for help to which made me stockpile up all of my medication and take them in big hits in hope that I wouldn’t wake up or planning to jump out of my bedroom window just too run away from it all. I have even endured a stay over at the Norfolk & Norwich after causing significant nerve damage to my right hand through punching walls repeatedly. I have been unable to control this anger and frustration because I feel I’m not where I should be at, at this moment in time because of how long I have been here and away from home. Home of which all of this was still happening but yet all of which is still happening here, I’m just in the best place to reduce and delay and avoid admission to hospital.
“RECOVERY; It will be one of the scariest things to ever happen, but it might just also be the best”
Being on complete lock down, has made me sit and wallow in this Eating Disorder and although there has been some days with success this overall hasn’t been enough to allow me to see the good things that will become once I’m recovered. It’s also very triggering to be able to see sight of a full recovery when your surrounded by people who may also be struggling as much as you but ultimately have been here before and have had to come back because they cant escape it. That frightens me so much because I know and want to be here to fully recover to live a life away from this horrible illness and fight back to getting on with my life. Getting back to my Family, Friends, Pooches, Football, Driving, Working and everything else that is classified as normal in ones life (All of which no one should take for granted). You’d think with everything there to lose it would be enough to just click your fingers and be free from what is holding you back but sadly the grip this illness has on you is incredibly strong and facing it everyday is very scary to say the least. I’m incredibly lucky to have a strong support base back home and have had frequent facetimes with family, in depth chats with patients of who I’m closest too and staff of which really do want to help.
Throughout this early part of my journey I have been introduced to different therapists, consultants, dietitian and endless support staff, however I still seem unable to pull myself out of the restriction and control cycle I am in which has only now come to light that I had I of spoke up sooner then perhaps things wouldn’t be as tough as they are. I am consumed by self-destruction, and disbelief that there is no way out. I hate it, I hate the life I was in and am currently still stuck in, I have never asked for this, never have I wanted it but all I know is I desperately want a way out; it scares me more than anything at the moment as I have always been frightened of what being WELL actually means and looks like.
I am now somewhere that will give me the direction I need, to show me that it is okay to have certain feelings, that it is okay to sit and relax and to eat normal meals and be a certain weight and shape and most importantly stop the feeling of being sick after any consumption and to stop being in the mindset of feeling better when I am completely empty. I hope soon enough my mind and body will accept this as I have differed from many anorexics in the sense; I have never been scared of food, I eat everything that is put in front of me, however I second guess every meal and think what is the point in eating just to walk it all off afterwards by being sick. Despite being exhausted and having a phobia of sick I am unable to stop this from happening whether it be a distraction of 10mins, 30mins an hour or two hours after eating I am sick involuntary without any force which subsequently results in me physically harming myself to try and get it to stop because it feels like it’s always there and never going to go away. It makes me feel weak, pathetic, hopeless and an embarrassment every time I enter the toilet and even by being surround people in a similar situation it is actually a really triggering time completely which can alter daily day by day with other peoples behaviors affecting your recovery.
It is a very lonely place in here at times and you feel consumed by all your own negative thoughts and feelings which does make you feel like giving up but after several attempts of trying to commit suicide and failing I now believe there is a reason why this hasn’t happened. A reason that it’s okay to have bad days but ultimately every time the set back is making way for me to bounce back. Bouncing back with full support from my Family and Friends outside of here but mainly the staff here at Newmarket House who work tirelessly to help aid and guide me to where I want to be.
Although the majority of the time you feel alone and spend time on your own blocking the world out with your headphones there is actually people in here who make the days pass by a lot easier, who make you laugh and smile without even trying. Sustaining and making friendships isn’t what you come here to do but I am true believer that there is some people you just instantly click with, those who are here and listen to your problems and those who have flown the nest and beginning their journey away from here who have bettered themselves and thrived of a life away from there eating disorder. The banter that can fly about is hilarious and can take a lot of your problems away in moments of difficulty also making it quite meaningful and a great distraction when hidden behind your smile is a struggling individual.
“See me as a person not just my Eating Disorder”
Family & Friend visits have been very limited due to finding it extremely difficult having a long-distance relationship at this present time and although they know about my Eating Disorder allowing them to see me in this setting is very upsetting. I worry about everything, from what we were going to do, talk about, how long they would stay, what time would they be arriving, would I get too tired, what if I can’t handle it…and most importantly I didn’t want things to dwell on why I’m here and doing this. I was worried that when I saw them they wouldn’t see me, they’d just see my illness. That the conversation would revolve around my Eating Disorder or that they feel like they’re treading on eggshells to not worry or upset me or most importantly see them upset themselves. I was worried that my illness would be a barrier and try to break us apart as having an Eating Disorder can be all consuming, it can literally take over your life, your every thought and behavior. You can become so entrenched by it that you find yourself feeling lost in it and your anxiety then being sky high. You lose sight of your identity, the things you once loved, the things that made you smile suddenly become forgotten about, and you find yourself living in the shadows of the illness.
So here I am, at the beginning of a whirlwind of an incredible but tough journey. It has taken me over a year to accept that I have have an eating disorder. I am now in a centered approached place and finding the strategies and the ability to cope with life away from this illness. At the minute I am still in the processing stage of accepting and realising that there is no reason to be ashamed of mental health, it is infact the turning point in my journey. This realisation isn’t pleasant, and I feel weaker and lower than ever before but I’m starting to realise I am a bloody strong human with the ability to change my life for the better.
We are made to believe that we have to stay strong all the time, that we can’t accept weakness and that we must carry on because it will get better. This belief has messed our generation up. We are too scared to ask for help and the development has created such a huge stigmatism that is negative and allowed other people to judge them, making them feel worse about being brave.
During this journey I have realised that the only thing worse than my mental health is other people and their lack of understanding, their lack of knowledge and the simple fact they don’t believe it’s a real thing. This could be their own denial or just plain selfishness, but they don’t think it’s real. It’s hard to carry on with life when you’re told to stop thinking irrationally, to stop letting mental health define you and to stop using it as a reason.
“I wish I’d of talked to someone about how I was feeling, yet at the time, I felt embarrassed and ashamed that I had let people down”
At school I don’t think anyone twigged what was going on. I used to put my lunch in the bin or spend my dinner money on things other than food but I never said why and I didn’t seem to wonder why either. This meant I could easily avoid food, when I wasn’t around the watchful eyes of my family.
When I do speak out, I also find people can patronise me, there’s often a head tilt and they say they feel sorry for me. I don’t need pity, I’m still a human. Having said all that, I don’t shy away from speaking out, even when people are ignorant, I like that because it gives me a chance to challenge those opinions.
Now I’m working on sharing my experiences to help others hence why I started blogging to show people that it is okay to have struggles and to struggle daily, but reaching out for help or crying for help in my case is the only way you can begin to move forward. I think the hardest thing with a mental illness is the fact that you don’t ‘look’ ill. If I have a cold or an injury, I will quite happily moan about my cold for days! Yet, I will barely be able to look someone in the eye and say ‘I have an eating disorder.’ I suppose it’s the fear of people’s reactions.
I’m currently being treated at an eating disorder unit in Norwich called Newmarket House of which not many people know that, because I have either felt too ashamed and embarrassed to tell anyone or because there is just a general lack of understanding that I’m actually still in hospital. I’m 24 years old; Sporty, Out going, Loved – how on earth could I have an eating disorder? How on earth could I tell people about it? In the end other people realised anyway and started to confront me, which terrified me. I denied everything most of the time that anyone questioned me about my weight loss and my low mood. I wasn’t prepared to accept the fact that I had a mental illness and that made talking about it even harder. One of the situations I’ve found hardest since beginning recovery from my eating disorder is the fact that people ‘assume’ you’re better. My body may be slightly ‘better’ but my mind is not. My mind still feels as mixed up about food, my body image and my confidence as it did when I was at a completely lower weight. But to other people looking in at my life, I am starting to look ‘better’, because I ‘look’ better. Deep down in the roots this is not the case I’m exhausted and still being sick everyday, still wearing baggy jumpers to hide it along with the smile on my face at times which really doesn’t reflect what I actually feel deep down.
If I was giving any advice to anyone deciding to talk to someone with an eating disorder, I’d really advise them not talk about weight or size. An eating disorder is a serious mental illness, food and weight are only an aspect, there’s a lot more going on and it’s not helpful to focus on that. When I was at my worst people who didn’t realise I was ill, I used to be complimented on my weight loss and I then felt torn because I knew I wasn’t right, but then positive comments on my weight loss fed into my eating disorder and made me feel like I couldn’t stop or I would put on weight again.
I also think it’s very hard for a person with an eating disorder to accept that they have an illness. For a long time I have completely denied I was ill. Even being off work, going into hospital and having on going treatment wasn’t enough for me to accept that I was ill. I don’t know what really made me see that I was ill and it was okay to talk about it, but only recently I have begun to accept it.
“The stigma made me want to keep it a secret”
I know for me that the stigma attached to having an eating disorder made me want to keep it a secret, and my eating disorder fed on the lies and the fact that I felt I couldn’t tell anyone. But now I feel I want to talk about it. I want to talk about it because it’s not fair that eating disorders have such a stigma attached to them. It’s not fair that so many people are still struggling, and it’s not fair that there are so many misconceptions about eating disorders.
It is hard work, and every meal is a battle here. I sit there with a plate of food placed in front of me, scoffing it down as quickly as I can just to escape from the table to then begin the battle of fighting off the sickness. Tears stream down my face every time I visit the toilet to be sick as trying to fight it off just seems completely impossible. I feel completely lost at the thought of eating and am now looking at trying to concentrate on what I want from life, along with Family and Friends beginning to understand that having Anorexia Nervosa with a variety of other complex issues; Autism, OCD, Emetaphobia and other physical health issues are playing a part to this illness and that it is not just a physical thing and about putting on weight its mental too.
The few times I have begun to talk about it with people around me I have not told anyone quite the extent of it. The amount of times I have wanted to tell someone and gone over the conversation in my head beforehand of exactly what to say especially to those who close to me, but this is something that is still so possible to do. I don’t want people to change their opinion of me and I certainly don’t want this to hold me back in my life. Shutting down and not talking about my recovery and my Anorexia Nervosa isn’t going to help anyone! In reality I don’t know what would make it easier to tell people. Rationally I know people are not judging me or thinking I am weird, but it still is hard. Strangely I feel able to open up to people I barely know but to those around me even those trust I find it so hard.
I want this to be my First and ONLY admission I’m here for a full recovery and will be here for as long as it takes even if that is over 6 months. Here is a rough outline of what a day in the life of inpatient setting is like; this may not apply to each place however from various conversations with other patients, the concept is very much the same. We have shared rooms (two to a room) or single room in some cases, a lounge space, art room and access to one to one time and support staff and from nurses. Therapists are assigned to patients according to their care plan and if their treatment requires such intervention. Dieticians and doctors are also on hand for a patient to speak with, weight and bloods are monitored weekly and diet and medication adjusted accordingly in weekly reviews.
Upon arrival, I was placed on a meal plan with a calorific value to meet my required needs. This was then gradually increased over the first few weeks of admission to now being on a general specific calorific meal plan. Whole milk is also given as snacks as many of us have extremely low phosphate and protein levels, and Whole Milk provides enough phosphate and protein without overloading the system with a massive amount of energy. Milk, as the majority of you are aware, also provides essential calcium to help strengthen your bone structure, which can also be put under a massive amount of pressure when suffering with any form of Anorexia.
I have been allocated a Key Worker (Nurse) Julieeeeee who is literally the best and responsible for how I’m coping and is a huge part of my care plan during my stay. A care plan acts as a guide for all members of staff in regards to the level of care that is required, documenting goals, behaviours, triggers and signs of distress which is helpful with large turnover of staff.
Slowly as you begin to move through the process you begin to prepare/serve your own meals to begin taking back some control over food. Staff facilitates this to ensure no behaviours or restrictions occur, until then all meals are prepared and served by staff, including snacks. All meals are eaten in a communal dining room. The dining room has three different stages; stage 1 is for patients who need more support than most, stage 2 is for patients who require less support and stage 3 is for patients who are able to eat on their own without the need for staff intervention or prompting. There is a member of staff allocated to both stage 1 and 2 dining tables and will give support and prompting to those who require it.
The programme or structure in place, timetabling specific meal times of 8:30am, 10:30am, 1:00pm, 4:00pm, 6:30pm; 9:30pm along with groups that are in place throughout the week with full supervision provided after all meals and snacks for 30mins & 60mins. This is staff facilitated and used to play games BANANAGRAMS(If you know, you know) or to rest and watch TV and keep busy using your own distractions or mindfulness taken from Therapy or Groups. Groups include various recovery focused discussions, meal preparation, and lots of arts and crafts. These are focused on distracting from unwelcoming thoughts, or addressing these thoughts with the help of staff.
I have very little say over my treatment but all targets are set together with my full input to ensure they are possible and realistic and are shared with all those involved in my care. Home leave is discussed with your consultant many months down the line when your well and weight is stable enough for you to be able to go home etc. to “test” whether or not you are able to manage. Care plans are adjusted on the basis of feedback you give, and whether or not the leave went well. I often have to be reminded that everyone struggles at some point, and not to beat myself up if if things do not go or change as quickly as you expect or simply being not where you want to be. Everything within the treatment is set to get you back into as “normal” a life as possible and just because I’m not there yet doesn’t mean it wont happen.
So yes that is my big bla bla bla blog for those of you who are interested or wondering where on earth I have disappeared to but I’m still here knocking about and as my Mum would say – Be kind to yourself and take a positive out of each and everyday and soon you will reach your goal; so please all do the same and in a world where you can be anything be kind!
Firstly I want to begin with saying thank you for the undying love & support from Family and Friends and those who I’m no longer in contact with but have checked in and showed support. This difficult period of my life has become increasingly hard and however big or small the support, the easier it is to be able to focus on my end goal and achieve what I want to achieve. Because after all, all we all want from life is to feel happy and comfortable in our own skin.
People have asked a lot about where I am, what I am doing, and how long I’m going to be in hospital for, the answer to that is I simply don’t know and being in here I have come to realise you cannot put a time frame on anything and that you will get there when you get there because its a marathon not a sprint.
I’m currently being treated in an Acute Specialised Eating Disorder Unit Clinic which is set within a house making it a home from home living space for the treatment of Anorexia Nervosa / Purging / Emetophobia disorder. As most people are aware in recent blog posts I have been struggling with this for a very long time, but when you don’t know why your feeling this way or why this is happening it is extremely difficult to open up and be honest with what is actually going on, especially when you’re unsure of what is triggering this awful illness which has consumed a big part of my life.
“When you feel like giving up on recovery, remember why you have held on for so long”
Since being at this Clinic it has triggered many emotions, some of which have been extremely difficult to understand and regulate causing an awful lot of anger and frustration being built which has caused me to feel the need to punish myself hence squaring myself up too a wall and punching the hell out of it just to relieve the build up of the many emotions this place fills you with
I cant even begin to describe how difficult its been from having to stop visits from family because of not being able to face seeing them as you just want to walk out the door with them at every giving opportunity because you miss them so much and just genuinely being with the people you love the most. It’s a completely different world in here, new routine, different types of people and all suffering with similar difficulties which is sometimes a good thing because they understand the struggle but on the other hand it has the polar opposite effect and is very difficult to live with certain characters who do not share the same perspective and morals.
My time in here really should be spent on myself but its completely unsettling to find away of accepting this is how its going to be for a long period of time and that you cant just see your family or your friends or do the things you enjoy because being here all that is taken away. All your coping mechanisms, your routine, your career, everything you can possibly think of is gone as soon as you walk through that door and I cannot even count on my hands the amount of times I’ve just wanted to go sod it and pack my bags and leave…. but reality is you know your here for one reason and that’s to get your life back and enjoy all the above.
It’s extremely hard work and increasingly difficult to focus on that everyday when your faced with so many different challenges and the main one being food!!! There is also lots of therapy starting of CBT (Cognitive Behaviour Therapy) and DBT (Dialectical Behaviour Therapy) to get to the very route cause of the struggles I’ve been dealing with throughout my entire life but never understood why. There is also group classes everyday comprising of working on different parts of the illness; Managing Meals, Body Image, Living with Emotions, CBT skills, Perfectionism to name a few all which build up to why we are all where we are today.
I’m not going to lie when I say its extremely difficult speaking about your thoughts and feelings in group situations and feeling like your back at school sitting up a table working but when you take yourself out of the equation and look in you can fully understand why these are put in place. Deep down in my heart of heart I know each one of these comprise up my illness and struggles so to get the most out of this journey it is to participate and engage as best you can in hope that your end goal can be reached.
Recovery from this dreadful illness isn’t easy, it takes time and hard work, sometimes more than you think your willing to do. But each hard day, every tear, every moment of frustration, every terrifying moment it will all be worth it. It’s worth it because the trade off is you learn to let go of your eating disorder and you get your life back. The word recovery does scare me as so many people in here have had it for years and have been in different clinics and relapsed so you do sit there and think is this all worth it if it’s going to come back and haunt you all over again. I know you shouldn’t look or judge other peoples journeys towards yours but you do have an awful lot in common some more than others and it is completely scary too think in 6-7 months time its still there knocking at the door.
But i do need to fully focus on ME and what my recovery looks like and that begins with
R – Realising that you are WORTH IT E – Experience true HAPPINESS C – Caring about YOURSELF O – Overcoming your DEMONS V – Validating your own SELF-WORTH E – Eating without REGRET R – Relapse could happen it is inevitable but it’s okay Y – Yearning to LIVE
So basically that is where I’m at in a small nutshell for those who have been asking and writing down your feelings and thoughts can be helpful in aid of recovery of which I have had no choice in doing because once you say NO to an eating disorder behaviour you’re infact saying YES to something else – To a HEALTHY choice and another step leading you closer to freedom.
Please don’t take offence if I don’t get back to individual messages or do not reply for sometime or feel up to visitors just because this journey is very difficult and for once I need to take a step back from what life was and to what it now currently is and to focus fully upon myself and getting my life back. When the time is right and ready I will make sure all you lovely people get the credit for support you truly deserve but for the moment respect this is infact a small chunk of the hardest part of my life but eventually I will have the tools and skills to be able to deal with this in a better way.
I have learnt a lot already from my time in here and have built friendships with people I never thought I would but the positivity that people show you really is what you need. People come and go and some people leave a mark more than others and have told me to never be afraid to stand up for what you believe in and that I have a heart that I should listen to, and use my head to carry out its wishes and that most importantly it’s okay to ask for help to beat this and come back better than before.
She left her mark and finished with saying when life knocks you down and tramples on your feelings, pick yourself up, dust yourself down and kick life’s but and to trust life and let it take you where it wants you to go and most importantly stand strong!
“Breathe – This is just a chapter, not the whole story”