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!
https://www.beateatingdisorders.org.uk/types/other-feeding-disorders/arfid
https://www.ocduk.org/related-disorders/emetophobia/
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.”
— Christian D. Larson
The Mind Diary 