2018 Favourites

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Well, we’ve made it to the end of 2018: a year which has caused the British population to overdose on Brexit, we had the Beast from the East and the hottest summer in forever. Baby Shark made us want to spoon our eyeballs out and the I’m A Celeb Class of 2018 gave us the ultimate body confidence song, I Like My Bum.

I’ve really enjoyed writing about my monthly favourites, throughout the year, so it only seemed right to reflect on the whole of 2018 and the things that I’ve loved.

Books

My stand-out book of the year has to be I Am Thunder: And I Won’t Keep Quiet by Muhammad Khan. Put simply: this book was amazing, literally the only fault that I could find with it is that it finished too soon. Despite this book again coming under the YA category of fiction, I honestly feel that everyone needs to read it. Muhammad Khan is a teacher in a British secondary school. He is also Muslim and writes about growing up as a British Muslim in the 21st century, having been inspired by media reports of the three Muslim girls who fled east London to join the so-called Islamic State. Since first reading this book in May, I have gone on to re-read it numerous times, each time picking up different aspects of the plot that I hadn’t noticed when reading before. I’m really pleased that Khan is releasing his second book in early 2019.

Another book which I have to mention is We Are Young, the latest book by YA author, Cat Clarke. Having only discovered Cat Clarke this year, I very quickly made my way through all of her books and it is a close call between We Are Young and Girlhood over my favourite Cat Clarke book. We Are Young was emotional, raw, powerful…I could continue. What I loved most was that Cat writes about mental health in such a sensitive yet balanced manner. She doesn’t sugar-coat how difficult being a teenager can be and We Are Young also touches on the government cuts to mental health services and youth services and how this impacts on the most vulnerable in society. I can’t wait until Cat’s next book is out. No pressure Cat!

A book that hasn’t featured in any of my previous monthly favourites posts is Vox by Christina Dalcher. This book was extraordinary, so much so that I read it in one sitting. It’s very unlike any books that I normally read, but I was drawn to it because of the linguistic and neurolinguistic element in it. In dystopian USA, women and girls are limited to speaking only one hundred words a day. This is measured by a word counter which is fitted to their wrists, speaking over one hundred words means that the bracelet emits an electric shock, which then intensifies. Think 1984, with a neurolinguistic twist, I really loved it.

Films/TV

Like most of the British population, I was obsessed with Love Island and still feel that there is a hole in my life, come 9pm, as it’s not on TV to watch. Despite this, however, I will fully admit that Love Island is not a healthy representation on society and it highlights many issues, with how women are viewed and treated. I wrote a blog post about The Problems With Love Island, where I talked about being a feminist and if watching Love Island makes me a bad feminist. I don’t necessarily agree with the behaviours shown by some of the people in the villa, but Love Island was a winner for some summer evening TV viewing and I will be remaining loyal, babe to it.

Obviously I can’t write about my yearly favourites without mentioning Strictly Come Dancing. As always, I have loved loved loved this series, especially with the added controversy and drama. Stacey and Kevin were well deserved winners, having had the SCD journey, with Stacey going from complete novice to a talented dancer.

My stand-out TV programme of the year has to the The Bodyguard. Being a huge fan of Line of Duty, also written by Jed Mercurio, I had high expectations of this series and I was not disappointed. It. Was. So. Good. Although not to be watched in the middle of the night when you’re home alone. The twist in the final episode was outstanding…is Julia alive or not?! Roll on series two.

As for films, the ones I’ve loved the most are Ladybird, Mamma Mia: Here We Go Again and Wonder. 2019 is looking good in terms of film releases and I’m especially looking forward to Toy Story 4 and Lion King.

Spoonie Favourites

The Body Shop has to have a mention here, as their skin care has (mostly) kept my skin in reasonable condition, when I haven’t felt eel enough to properly look after it. A lot of the time, I don’t have the energy to spend ages and ages doing my makeup or having a long beauty regime, but at the same time, I don’t want to get into a downward spiral of not making any effort. Products which deserve a mention are: Tea Tree Anti-Imperfection Night Mask is specifically formulated to care for blemishes and imperfections whilst you sleep and the hydrating face mists which saved my skin from heat induced sweats over the summer.

Another spoonie favourite from this is Tesco jeans. Okay, stay with me on this one. I have really short legs – being just over 5ft is a bit of a curse in that sense – so I find buying jeans a very painful process. Once I find a brand that I like, that’s it, I’m on a convert and buy all the jeans in different colours (I say different colours and I mean dark blue and black). They are so comfy, they fit perfectly, with a slight stretch which is perfect for when my hips and knees swell up, or when I’m bloated. Plus, they are so much cheaper than my usual Jack Wills/Oasis/Top Shop jeans and they wash well as well, which is always a bonus. I’ve lived in Tesco jeans, since discovering them earlier in the year and I’m so impressed by the longevity of them. They’ve faded slightly but for the most part, they still look as good as when I first bought them.

This year, I invested in a memory foam pillow. Where has this been all of my life? Thanks to EDS, I have endless issues with my back, neck and ribs and need a pillow which offers support and it fairly firm, to support my wonky bits. It hasn’t completely resolved the issues, but being able to sleep with my neck and shoulders getting more support has made a difference.

Since I was a teenager, I have struggled to varying degrees with stretch marks. Oh I know, the glamour, but I’m nothing if not honest. Skin issues go hand in hand with EDS, so I’m always going to be more prone to the little buggers and I know that so many people also have stretch marks. But that doesn’t change how they make me feel and how much they knock my confidence. After using a combination of bio oil and Palmer’s Cocoa  Butter and not noticing any difference, I did some research and came across Udderly Gorgeous Stretch Mark Oil by Cowshed. Whilst it was developed with pregnancy in mind, it has also had a good write up in improving stretch marks in general. It smells so much better than bio-oil, is less greasy and is absorbed more quickly. It hasn’t got rid of my stretch marks (that would be asking for a miracle) but they have improved: they aren’t as red or deep.

 

Odds and Sods

My first Odds and Sods yearly favourite overlaps with Spoonie Favourites. Last year, I stumbled across Spoonie_Village on Instagram. Run by the lovely Hayley, there is also an etsy shop, where you can buy all sorts of spoonie related items such as postcards, stickers, notebooks and calendars. I honestly can’t praise Hayley enough, her illustrations have made me smile during some really dark times this year and I can’t wait to see what 2019 brings.

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Over the summer, I was well enough to travel up to York, where I spent the best three years at uni, to catch up with old friends an lecturers. York itself is a beautiful city, with individual and unique shops that I could happily spend way too much money in. I’m able to look back on my week in York and remind myself that 2018 hasn’t been all bad, and I’m very lucky to have such supportive friends, dragging me through the tough bits.

My final favourite is the general blogging community over on Facebook and Instgram. Through this community, I have met so many like-minded people, learnt how to develop my blog and writing for an audience and had the space to talk about content and what people want to read about. Big thanks to the people who give up their time to facilitate the groups which allow this to happen, especially Amy, Pippa and Jenna.

 

 

 

 

Universal Credit Saga – Part Seven

It’s been a while since I had anything to say about universal credit. Mostly this is because I haven’t felt well enough to battle the broken system and for the most part, it hadn’t been causing me any issues, personally, so my feelings and views on it have been forced to take a back seat.

That was, until this past month. I check my bank account regularly because I don’t trust the benefits system to continuously pay me without any issues. When I checked my bank account a few weeks ago, I realised that I wasn’t paid my last universal credit payment, meaning that I was very overdrawn. It’s been an expensive few weeks with birthdays and various other things so my outgoings were higher than normal but that still didn’t explain how I was so massively overdrawn.

I’ve always been very careful with my money and budgeting was a skill that was instilled into me as a teenager. Finding out that I was overdrawn caused a whole new level of anxiety but I pulled myself together and went to the job centre to ask where the hell my money was at.

If you’ve been a regular follower of the universal credit sage, you’ll know that my experiences at the job centre have been less than positive: I’d like to say that this time things were different but that was not the case. I explained, very calmly, to the work coach that my payment hadn’t gone in and as a result, I was overdrawn. I kid you not, the work coach shrugged in reply and told me that “these things happen”. There have been admin issues over the past few weeks, which has meant that not all payments have gone out on time. Admin errors happen, what I am more frustrated about has been the sheer lack of communication, so I had no idea that this was the case.

I told the work coach, again, that I was overdrawn as a result of the payment not going on and was told that I would benefit from seeking advice from the Money Advice Service. The Money Advice Service is an organisation established with cross Government party support, that provides free and impartial advice on money and financial decisions to people in the United Kingdom. It is a really useful service, but not a service that I require at this time, because when my payments go in, I am very able at managing my own money. It’s very hard, however, to manage you’re money when you’re not receiving the money in the first place.

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I thought that things were taking a more positive turn when the work coach asked me if I needed vouchers so that I could access the food bank. The situation that I’m in means that actually, I don’t need them, because I eat very little due to gastroparesis, and the supplement drinks that I have are on prescription. This is where it gets interesting: the average person will spend between £15 and £20 per week on food shopping. The job centre were offering me a £5 voucher, to last me a month. That is not enough to cover even the very basic amounts of food that I am able to eat.

 

This left me in a somewhat desperate situation. By the time I got home, I was in tears because of anxiety and felt pretty ill, in general. With my mum’s help, the situation was de-escalated and we agreed that she would lend me some money to help me until my next payment date.

The end result has been that I had a double payment on my most recent payment date, so financially, I’m back to where I should be.

Universal Credit makes people vulnerable. You’re constantly at the mercy of an admin system that may or may not work. And when it doesn’t work, things can go really wrong. People can so easily end up in rent arrears, which can put their housing at risk. Mortgage repayments can be missed. Bills don’t get paid. So many people expected that Universal Credit would be a Universal Failure, however the scale of the failure really is shocking. It has cost four times as much to run per person as predict, at approximately £700 per claim. A fifth of claimants’ payments have been delayed and it is pushing unsustainable burdens onto local authorities to pick up the pieces when it does go wrong. Food banks, churches and charities are having to support increasing numbers of people, yet despite all of this, we are told that we are too far along with the process now, for it to be reversed. Universal credit hasn’t been rolled out across the whole country yet, so all these failures are set to increase further by 2023, when the rollout is set to be completed.

All these reasons are why I want to be working and not living off the state. Ten months on from the start of my experiences with universal credit and I still feel like a failure.

 

 

Knowing When To Take A Break

When I first started blogging, way back when, around 2011, my main focus was mental health and living with various mental health conditions. My blogging was very much anonymous; I was so scared about sharing with people who I knew in real life what I was going through out of fear that I would be judged or that they would think differently. University completely changed my perspective about mental health. I realised that it wasn’t a battle that I needed to fight alone and, more importantly, that other people also struggled with mental illnesses.

Talking about mental health is still something that I am passionate about. The mental health system in the UK is very broken and it is failing so many people. I can’t change that, but I can advocate for people and remind them that they aren’t alone. I’ve seen both sides of the mental health system: I’ve been a patient and I’ve also been the professional, supporting service users and fighting to get them the help that they need and deserve. The number of people being failed really worries me. It worries me personally, as I have been failed by the system and it worries me as an ex-professional who had to fight on behalf of vulnerable young adults, to simply access a referral into mental health services.

A lot has changed since 2011. I am (for the most part) open and honest about my mental health. But, saying that, my own mental health has been forced to take a bit of a back seat, especially over the last year, as my physically health deteriorated to the point that it took over my life. Things as I knew them suddenly became very different and it was something totally out of my control.

I have been having therapy for just over three years. For about two years of that time, I found it a really useful process and I was getting a lot out of the sessions and was learning new coping strategies that I could implement into my daily life. As my physical health worsened, this changed the way that I worked with my therapist. I would frequently turn up to sessions so exhausted that I couldn’t function, a large chunk of the session would be a debrief on the week’s hospital appointments, whether I’d stayed out of hospital, if anything drastic had changed. Without realising it, my therapy sessions (which I am paying privately for) have become a space for me to talk about my physical health, completely ignoring my mental health. My physical health is important, it impacts my life daily and at the moment, it is very unpredictable. But my mental health is also important and I have been neglecting that and the reasons why I am in therapy in the first place.

So, I guess you could say that I’m going round in circles. Therapy can’t cure my physical illnesses and I am doubtful that it can fully “cure” my mental illnesses. It can, however, give me the skills to cope, manage, survive and pick myself up again when things go wrong.

During one sleepless night (painsomnia is fun) I ended up thinking about what I am getting out of therapy. The answer was not much. Because I have been so focused on trying to stabilise my physical health and was fixated on trying to avoid hospital, I hadn’t realised that I had slowly and silently slipped backwards in terms of my mental health. I have been anxious, really anxious, probably 90% of the time. This has manifested in an increased number of anxiety attacks, nightmares, my heart feeling like it’s going to explode and so much sweat. Gross but factual. My safe haven of my bed has been where I have wanted to hide much of the time and it has taken a lot of effort to go against that instinct. I guess I can be thankful for the many hospital appointments that forced me out of my bed, my pyjamas and my house.

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For me, anxiety goes hand in hand with OCD rituals and again, without realising, they have also worsened and I am more dependent on them, in order to feel safe and less anxious.

Relapses happen. They are part of life and I know that being able to recognise this slippery slope is positive.

This week I made the decision to take a break from therapy. Not ideal, you might be thinking, given what I have said above, but I think and hope that this is also a positive step. I was honest with my therapist and said that I felt that the sessions were becoming too focused on EDS, gastroparesis, Addison’s and all the other fun things that my body does. I am not addressing the reasons that I am in therapy and that has been the case for too long. Those reasons aren’t ever going to diminish or become less problematic if I continue to ignore them, either consciously or subconsciously. I am a pro at changing the subject and I think my therapist needs to be stricter at forcing the difficult conversations because I can’t do it for myself. It won’t be a long break and it was agreed on the condition that I made contact with my therapist if I needed to.

I’ve been here before and I know the feeling of “stop the world, I want to get off” will pass. As anyone with a mental illness will confirm, sometimes you will have days when you feel on top of the world and able to take anything on. Other days aren’t quite so great and you end up feeling frustrated and demoralised about life. And moments when I feel like that are when I need to take a break and re-evaluate things, without piling hideous amounts of pressure on myself.

For much of 2018 I have felt like a massive failure. I haven’t achieved my goal of moving out and as the year has progressed, it has become more and more unlikely that I will be able to fly the nest any time soon. I am crazy jealous of people who are living independently. Rationally I know that I need to be at home, financially I can’t afford to move out and I also need too much help with regards to my health to live alone.  I’m not working and the whole universal credit process destroyed my soul a little bit, so much so that when I get an email or text from them, I want to be (and often am) sick. Classy. But I know that I can’t work, even the pleb who met me once for my fitness to work assessment agreed with that. I’m not well enough, but I am taking tiny steps forward to engage in the workplace again.

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I used to hate it when people told me to be kind to myself. My counsellor at university ended every session by saying “go well out there” and looking back, that was possibly the best thing anyone could have said to me. I’m not going to succeed in everything I do, life doesn’t work like that. All I can do is try my best and “go well.” And yes, I need to be kind to myself, particularly when the world doesn’t feel like it’s being very kind.

Effective Treatment Pathways For EDS

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One of the hardest things that I have found, since being diagnosed with Ehlers-Danlos Syndrome is that there isn’t a clear treatment pathway or anyone overseeing my care. I am speaking as someone living in the south of England, this could well be different in other parts of the world and treatment various depending on where in the UK you live. This means that I don’t have anyone officially overseeing my care and treatment and instead, my treatment is scattered across numerous hospitals and departments and places in the country. I live in Oxfordshire, but receive treatment in London, as well as Oxford and I am under many specialists including physiotherapy, cardiology, infectious diseases and fatigue clinic, gastroenterology (in Oxford and London), rheumatology, urology, genetics and orthopaedics.

Very often, patients with EDS who are over the age of 18 have little or no care within the NHS. Healthcare workers and providers have no access to formal training, resulting in patients needing to self fund private care with the few specialists available, in order to manage their multiple,painful & life threatening disabilities.

I am really fortunate in the respect of being able to afford private treatment, but that cannot be a forever option because I don’t have an endless supply of money. I have to self-fund my physiotherapy treatment and have been for over five years, because on the NHS, I am only entitled to six sessions before being discharged. EDS is a chronic and incurable illness, which will not and can not be made better with six sessions of generic physiotherapy. My physio is amazing and was the first person who picked up on the possibility of me having EDS; I would be lost without her, I need regular and intensive physiotherapy to keep my body moving and to try and reduce pain. Think of it as a car needing a service or MOT to make sure it’s working, only I need physio every two weeks, not once a year.

Likewise with gastroenterology, I have paid to see a private consultant in London because I was receiving such poor treatment in Oxfordshire. My local gastroenterology consultant hadn’t heard of EDS and mis-diagnosed me to that very reason, and it was only because my mum and I pushed for further tests that I was finally diagnosed with gastroparesis. Currently, this is being “managed” through medication and dietary changes, only I am not getting better and the risk is, the longer I am left like this, the harder it will be to access other recognised treatments for gastroparesis because I won’t be well enough.

More recently, I ended up in urinary retention, which was later discovered to be due to a kidney infection. I have suffered for years with kidney infections, the first one being when I was on a French exchange, where I ended up in hospital. Unfortunately, GCSE French doesn’t extent to explaining to a doctor this awful and unexplainable pain, but I could tell them that I lived with my mum and rabbit and that my favourite subject was English and that I did the hoovering at home.

There is a link between EDS and urinary retention, which I tried to explain when I was in hospital, whilst having three nurses peering at me down below, trying to shove a tube into the urethral opening. It really is as fun as it sounds. No-one was particularly bothered about the fact that it was likely that this was happening due to the fact that I have EDS: in simple terms, because I have EDS, I am extra stretchy, which includes organs etc. The bladder expands anyway when it is full, but it had over expanded meaning that it then couldn’t contract and empty. Again, really fun.

I found that having a catheter fitted incredibly traumatic and I was all for yanking it out myself, after consulting Dr Google and Dr YouTube, about self removal of catheters. The trauma aside, I was also very concerned about the risks of having a catheter, as an EDS patients. Because our bodily make-up is different, there is an increase risk that once a catheter is fitted, the bladder ceases to function normally, therefore becoming dependent on a catheter.

There is no continuity of care. I am lucky to have a GP who is on the ball and supportive, but being under over nine hospital departments can become confusing, especially when people have conflicting views and options and more so when professionals don’t know of or believe in EDS. Trust me, it’s a real thing. Each time you meet a new professional, you have to explain everything because there is so much which could be as a result of EDS. Having a designated health care professional overseeing care would make a huge difference to patients like me, but also friends who I have met who also have EDS and other chronic illnesses.

Why am I going on about this? Because, simply, it needs to change. No other disease in the history of modern medicine has been neglected in the way that Ehlers-Danlos Syndrome has been.

A government petition has been set up, to try and improve healthcare for patients with EDS and more importantly, to improve on education of EDS and its different types, so that medical professionals are more aware of it. It is thought that only 5% of EDS suffers are diagnosed, with only 31% of people diagnosed in under ten years from when they first became symptomatic.

This has got to change. Please take two minutes out of your day to sign the petition. It might not seem like much to you if you don’t have a diagnosis of EDS or know anyone with a diagnosis, but for EDS patients, this could be life changing.

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Universal Credit Saga – Part Six

I’m going to try and keep this short and sweet. Having been away for the past week, I got home yesterday to be greeted by numerous brown envelope letters. I’m not a great fan of these types of letters, they fill me with dread and give me all the anxiety so I decided to ignore them and open them when I’m less exhausted. So, this morning was the morning that I did some adult admin, including opening the dreaded letters because even looking at them was making me feel a bit ill.

One of the letters was from universal credit and gave the decision of my work capability assessment. I’m not joking when I say that I’m writing this with teary eyes: I have been granted universal credit. I have been deemed ill enough to not need to be job searching or attending interviews and I don’t need to attend work commitment meetings anymore. It honestly feels like a huge weight has been lifted and I have been fully validated over a situation which I should not need validation for.

Obviously this is not an Oscar acceptance speech but I wanted to say a massive thank you to everyone who has dealt with the crying, ranting, swearing, anxiety attacks and all the negativity associated with universal credit. The system is a bastard and has made the last few months of my life utter hell. But this fight isn’t over completely. Yes, I am truly thankful that I have won against the most broken system possible but that is not going to stop me speaking out at how unjust the system is and how it’s failing the many, not the few.

Discrimination against invisible illness has got to stop.

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Happy 70th Birthday, NHS

NHS_70_logoOn the 5th July 2018, the NHS will be turning seventy years old: that’s seventy years of providing lifesaving healthcare to a ever growing British population.

As someone with numerous chronic and long term illnesses, I am incredibly grateful for the NHS. I’m not sure where I would be without it – probably in spiralling debt. There are, undoubtedly, criticisms regarding the NHS, but this is not down to the 1.3 million people who work for it, more down to the current state of politics, but this is not the time to talk politics and policies. So many of the people who work for the NHS go unnoticed and unthanked. They work tirelessly to keep the British population healthy. Regardless of health or wealth, we can be reassured that if we fall ill or have an accident, we will receive the treatment that we need.

NHS staff see the best and worst of people. They welcome babies in the world, sharing the joy with new parents and they administer end of life care, ensuring that people die with dignity and that the families are supported, during a time of grief, upheaval and turmoil. They are often dealing with people who are going through trauma and they do their best to relieve some of the pain and anxiety, felt by those needing medical care, as well as the people around them.

Needing medical care isn’t an alien experience for me. In fact, it’s the opposite, thanks to the fact that I am diagnosed with various long term medical conditions. But although I’m more familiar with the inside of my local A&E department and other departments in near-by hospitals, compared to most people my age, the familiarity doesn’t change the fact that it is still a frightening experience. But I can honestly say that I remember every single nurse who has looked after me on those occasions and ensured that I felt as safe and as calm as possible. This is not an easy task when you are overworked, underpaid and often unappreciated.

I can remember the nurse who held my hand during a particularly bad night, during one hospital admission. I was crying in pain, with pain relief not even beginning to lessen it and this one particular nurse sat with me until I was calm and we talked about my life, hopes and ambitions and things that I enjoyed. She told me that she had moved to England from Brazil because she was so desperate to work for the NHS.

I can remember the nurses and occasional therapists who went out of their way to ensure that I was at ease prior to me having surgery at the age of eight. They made me laugh and brought Guinea pigs into my room, as part of animal therapy. They also reassured me post-surgery when I was afraid and wanted my mum.

I can remember the health care assistant who apologised repeatedly when she had to cut me out of a Crew Clothing jumper, when I was on a spinal board, and then suggested that I wore cheaper clothes next time I ended up on a spinal board with a suspected fractured neck and bad concussion. Thankfully there hasn’t been a “next time” but the joking eased the fear.

It’s not just nurses who make the NHS as good as it is. There are so many people who do their job every single day and remain pretty much unnoticed. There are the porters walking miles every single day, making sure patients are where they need to be; from experience porters are some of the kindest and funniest people I’ve ever met. True NHS heroes.

I can’t write about the NHS without mentioning GPs, in particular, my own very wonderful GP. My GP has been my biggest supporter for over ten years. She has fought a near-constant battle for me to receive the correct treatment for my various conditions and has never once given up on me, even when I have very much given up on myself. When you are diagnosed with a rare condition, one of the biggest hurdles faced is the lack of understanding from medical professionals. Yet my GP knows my body as well as I do and has gone out of her way to research and find out more about my conditions, so that she is able to treat me in the best possible way.

So, I’d like to take this opportunity to take everyone who works for the NHS. Thank you for caring.

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This post has been written in conjunction with Scope and will be appearing on their website.

 

 

 

 

 

Universal Credit Saga – Part Five

Welcome to your latest round-up on all things universal credit. Grab yourself a cup of tea or something stronger and get ready to find out more on the mind-fuck that is applying for universal credit.

Last week, I had my work capability assessment. I had a bit of an anxiety meltdown the morning of the assessment, basically crying because if the assessment doesn’t go my way, I am royally screwed. I think a lot of my fear stemmed back to validation and the fact that essentially, my future financial security, sanity and hopes were pinned on the decision of a stranger, who had never met me and that decision would overrule any made my medical professions, who are involved in my on-going care. As a result of my meltdown, my mum offered to come with me to the assessment, but would stay in the waiting room. This eased my fears slightly and off we trekked to the assessment centre, in the pouring rain, with me feeling like I was going to vomit. Plastic bags were packed just in case, although vomiting everywhere would only have strengthened my case.

The waiting room was typically British, only with more mobility aids and a smell of damp because we all resembled drowned rats. Everyone was moaning because the assessors were running late: two people lost the will to live and rearranged their appointments and the children belonging to the family who (I can only assume) thought that a trip to a health assessment centre was akin to a day out at the zoo, tried to pretend that their lives hadn’t ended during the hours waiting for their dad to finish in his assessment.

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Anyway. I was eventually seen and was in and out within half an hour. I was asked how my disability impacts on my day to day life, was told that I looked tired (no really?!) and was then asked if I could perform various movements: reaching up, making fists and then touching the floor. Hypermobile me excelled at this – my shoulders popped in and out as I reached up and I freaked the assessor out with how easily I could touch the floor, with my palms flat.

And that was it. I went home, got into bed and slept a solid 14 hours before rolling out of bed and going to a GP appointment.

Fast forward to today and I had the unenviably fun task of going to the job centre and handing in my latest fit note. I thought that it was going to be a simple case of handing it in and then leaving, but oh no, today I had the added fun of not only meeting a new work coach (I think my last one binned me off, can’t think why…) and then going through all my work commitments. Now, at this point, I would like to remind you of the phone call I received a few weeks ago, whereby I was told that all my work commitments had been switched off because I’m not fit to be working or searching for jobs. It would seem that my joy over someone having some common sense was short-lived: my work commitments haven’t been switched off and actually, I am still meant to be spending at least two hours a day job searching and keeping my CV up to date.

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I am so bloody confused.

Things got even better when my new work coach asked me if it was “just sickness” that was stopping me from working. Oh how I laughed, because that is properly funny. I explained in very simple terms, that even a halfwit could understand, that gastroparesis means paralysis of the digestive system and symptoms include but are not restricted to sickness and nausea, extreme bloating, pain and heartburn. The consequences of gastroparesis include being malnourished, which I am. Due to malnourishment, I am so exhausted that I frequently cannot stand up without my legs giving way, I’m constantly freezing cold, my skin is an attractive creamy-grey, my eyes have bigger bags that I knew was possible and I have bald patches where my hair as fallen out. Not to mention how much this is impacting on my already fragile mental health.

Apparently, I should find out within four weeks what the outcome is from my work assessment. I’m really apprehensive about it and it shows how broken the system is when the opinion of someone who has had a twenty minute conversation with me and then asked me to show off some of my EDS party tricks outweighs the opinions of my GP who has known me ten plus years, my physio who is specialised in chronic conditions, my gastro consultant who is the top consultant at the hospital and my therapist who has known me for three years. How is that right? Or fair?

Today I was told that the job centre would have a supportive role, regardless of the outcome. Thus far, their input has not been supportive, it has made me more unwell, stressed, anxious, depressed and I have been so close to giving up.

I mean, should the result be that I need to be in work, I could appeal but I’m now getting to the point where I’m really losing my fight. I know that, deep down, I have to keep fighting this, for me and everyone else caught out by a completely unjust system, but right now, I feel so defeated. I don’t even feel angry regarding my appointment today, just sad and exhausted.

Forcing someone into work, against the advice of professionals, isn’t supportive. This system is not supportive. This system is failing.