We’re All Winners and Losers

Being diagnosed with a health condition, be that short term or long term, can make you re-evaluate your life and what you value as important. If you had asked twenty year old me, before diagnosis, I would have told you that my priorities focused around education, work and being self reliant. At that age, I was just starting my PGCE degree in primary education and I was very much striving to be an outstanding teacher. And I was, but as I became more unwell, being an outstanding teacher was coming at the cost of me constantly fighting infections, being really unhappy and stressed, not having a life outside of university and placements. But ultimately I was left feeling like my best would never be good enough, because my best was slipping because of my health.

After six gruelling months of teaching training, I made the decision to leave my PGCE degree, to focus on my health. At the time, it was a tough decision to make and it came down to how unhappy I was, more than considering my health, but as the months after university progressed, it became more and more apparent that my health wasn’t stable enough to cope with the demands that teaching expects of you. I still miss the idea of teaching, since I can remember, I had wanted to be a teacher so I felt very lost in a world where I was directionless.

Fast-forward a few years and whilst I might miss the idea of teaching, I am so glad that I stopped training before I was forced to stop. Since then, I have left another job because of the demands on my health, much of it due to working shifts and not being able to form a decent routine or get enough sleep. I thought that having official diagnoses would mean that managerial staff would be more understanding over my physical limitations, as well as the other odd things that my body can do as a result of EDS and its friends. I was perhaps naive in that thought: having a piece of paper stating that I have EDS doesn’t automatically ensure that people understand life with a chronic illness, more so when it is invisible.

Earlier in the year, I talked about being offered a job in children’s social services, in the early intervention team. It was my dream job and something that I had been working towards since leaving university. I had to kiss goodbye to that job because of how unwell I’ve been and I’m not going to kid myself into thinking that one day I will be able to go into that line of work. I really do hope that one day I can return to work but realistically, it won’t be in early intervention work because my body won’t cope with the demands, hours and stresses from the job. It’s not just my own health or life that I have consider, I need to think about potential families I would be working with. They need continuity and that’t not something that I can offer.

Similar applies to my inner dream of working in the police force. For all the reasons that I’ve stated about, it’s not a practical line of work and let’s be honest, I wouldn’t even get close to passing the medical tests.

I now spend my days writing, reading, sleeping and sometimes I go a bit wild and sit in the garden. I have to plan my life around when I have medical appointments to try and ensure that I’m as well as possible to attend them, but chronic illness is unpredictable so even the best laid plans go wrong when it comes to attending appointments. I speak to friends every day. But I still feeling lonely, even though I’m not alone.

I’m probably making life with chronic illnesses a bit shit and yes, at times, it is. But there are positives, even if they aren’t glaringly obvious.

I’ve met some really wonderful people who also have chronic illnesses. We are an odd bunch; we don’t do the conventional things like go to the pub or go shopping all day. You’ll probably find us in pyjamas, watching rubbish TV or having a group nap. But that kind of support is invaluable, as is the understanding. We are unshakeable, nothing is too gross to talk about and we can symptom share without sounding like we are losing the plot. Our medical knowledge is extensive: why ring 111 when you can consult a spoonie friend?

I’ve also developed a new gratitude for the days when I’m well enough to do something. Planning things takes a lot more effort and energy. Days when I can spontaneously leave the house and few and far between but when I am able to, it feels amazing and it leaves me feeling like a normal twenty something woman again.

Younger me imagined that I would be a teacher and whilst that hasn’t happened, I do feel happy being able to dedicate more time to writing and raising awareness about chronic illnesses. I’ve been given opportunities to write articles for charities or other blogging platforms and was recently nominated for two WEGO Health Awards, for best in show: blogging and rookie of the year. You can find out more and vote for me here.

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I’m getting opportunities which I would not be able to follow up on, if I was working, which is exciting and nerve-wracking at the same time.

That doesn’t take away the uncertainty or the fact that some days are just shit, but I find it is so important to try and focus on the things which are positive and make life easier to contend with. Health anxiety isn’t ever going to go away, scanxiety isn’t ever going to not be there and as much as I wish for it, I’m not never going to be 100% healthy and stable. I can’t go on week long benders but I’m a pro at watching a whole box set in a day. It’s the little things that make up life.

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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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.

Gastro-what?!

Over the past few months, I’ve talked quite a bit about my latest diagnosis of gastroparesis. A lot of the time, I forget that for most people, medical jargon and understanding over medical conditions isn’t common knowledge, so with that in mind, I thought that I would explain a little bit more about what gastroparesis is and how it affects me in day to day life.

Gastroparesis is a long-term (chronic) condition where the stomach can’t empty itself in the normal way. Food passes through the stomach more slowly than usual: essentially, the digestive system becomes paralysed and in my case, food doesn’t pass through the digestive system at all. It’s thought to be the result of a problem with the nerves and muscles controlling the emptying of the stomach.

Whilst my diagnosis of gastroparesis has come very recently, I have been symptomatic for a number of years but put the symptoms down to EDS or food allergies/intolerances. Symptoms of gastroparesis can vary but include feeling full very quickly when eating, nausea and vomiting, loss of appetite, weight loss or weight gain, bloating, pain and discomfort and heartburn. People can experience weight loss or weight gain, although weight loss is more common. These symptoms can be mild or severe, and tend to come and go.

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On top of the symptoms, there can be some pretty nasty complications as a result of gastroparesis. Dehydration can occur due to repeated vomiting, which can cause hospitalisation, stomach acid can leak out of your stomach and into your gullet, known as gastro-oesophageal reflux disease (GORD), malnutrition can occur as not enough nutrients are being absorbed and people can experience problems with their blood sugar levels.

There isn’t an obvious cause for gastroparesis, although it can be linked to diabetes, complications from gastric surgeries and links to conditions such as Ehlers-Danlos Syndrome.

There are various ways in which gastroparesis can be diagnosed. I was diagnosed following an urgent referral to gastroenterology and having a gastric emptying scan using scintigraphy. Put simply, during this test, you eat food containing a small amount of a radioactive substance which can be detected during scans. Gastroparesis is diagnosed if more than 10% of the food is still in your stomach four hours after eating it. Other diagnostic tests can include bariumX-ray and endoscopies.

Gastroparesis can’t usually be cured, but dietary changes and medical treatment can help you control the condition.. I have been advised to follow a FODMAP diet, combined with a diet which is designed for people with gastroparesis. Since February, I have predominantly been on a liquid diet, drinking supplement drinks and eating very bland and simple foods when I’ve felt able to. It’s boring but I don’t miss eating. I miss the idea of food and have, at times, had some weird cravings but when faced with a plate of food, I feel incredibly anxious which in turn, makes the nausea and sickness worse. Catch-22.

Day to day, my symptoms can vary. I can had days where I am sick numerous times and can’t move off the bathroom floor because I feel so ill and exhausted. Equally, I can go two to three days at a time without being sick. However, during those three days, anything that I try to eat, will remain in my stomach undigested, and I will then be very very sick. It’s unpredictable and can make planning anything really difficult. I don’t like leaving the house because I’m scared that I will be sick.

I’m also really really tired, likely to be down to the fact that I am malnourished and I’m not absorbing the necessary nutrients. My hair has been falling out and whilst this has slowed down a bit now, I have been left with bald patches, which I’m self conscious about.

And then there’s the bloating. I have lost a lot of weight since February but I look like I’ve piled weight on because of how bloated I am. Again, this makes me so self conscious. I hate seeing my reflection and do whatever I can to avoid mirrors or reflective surfaces. As much as possible, I live in jeans and baggy jumpers, although now that the weather is getting warmer, this is getting harder.

My treatment at the moment consists of dietary changes and medication. However, there’s no indication that either of these things are working; I’m not seeing my gastro consultant again for a few months and I’m worried that by the time I see him again, things will have deteriorated further. My biggest fear is that I end up in hospital, needing a feeding tube. Unfortunately, this is a likely out-come, and I feel like I’m just waiting for things to get worse in order to get a clearer treatment plan.

Like other invisible conditions, gastroparesis can be really isolating. You don’t realise how much society revolves around food. I’ve missed out of so many social events because they have been food-based activities. My friends get it, but at the moment, the idea of explaining to restaurant staff why I’m not eating is a huddle that I’m not quite ready to face. People also tend to feel awkward if they are eating a meal and I’m not. Nutrition is a chore and scary, knowing that there isn’t a cure makes this hard to deal with. It’s slowly becoming my new normal though and I’m sure I’ll get my fight back soon.

 

 

May Favourites

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Welcome to another monthly favourites post, looking at all the things I’ve been loving in May! I can’t believe how quickly this year is going, I feel a bit rubbish that so far, I’m yet to really achieve anything in 2018, but the additional free time that I have had, has allowed me to discover new things, which I guess is a good thing. As you will have seen by the blog posts that I have been posting this month, May is Ehlers-Danlos Awareness Month, so some of my favourites from this month will be continuing with that theme.

Books

Like last month, I’ve mainly stuck to young adult (YA) fiction this month because I’ve been massively struggling with brain fog, which has affected my ability to concentrate and take in anything where I am required to think.

Last month, I received my first “payment” for writing, in the form of an Amazon voucher. In the grand scheme of things, this isn’t massively exciting but I’m pretty proud of myself. After some consideration, I decided to buy myself some books, because you can never have too many books. So, thanks to my Amazon voucher, I discovered Non Pratt, a fab YA author and I have made my way through Second Best Friend, Trouble and Unboxed. Second Best Friend and Unboxed were a pretty easy reads, for me, having only just over 100 pages, so I started and finished them both within the space of one afternoon. Neither of the books were especially stand out, although they were witty in places, but my reason for mentioning them is down to the fact that they are perfect for readers with dyslexia, with yellowed pages and a unique font. Not enough books are published with dyslexia suffers in mind but these books are accessible and age appropriate: struggling with reading does not mean that you should be stuck reading children’s books.

If you’ve read any of my previous monthly favourites blog posts, you’ll know that I am a huge fan of Cat Clarke, so it was a happy coincidence that I stumbled across Non Pratt, as a recommended author for people who love Cat Clarke’s books.

Speaking of Cat Clarke, her latest book We Are Young came out this month resulting in me sending a very excited message to Life of Pippa to inform her. I read the book in one day and I loved it. It’s 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, and I can’t wait until Cat’s next book is out. No pressure Cat!

One of my stand-out books of the year (bold statement, I know) 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. I don’t want to go into too much detail over the plot, however I will say that I learnt a great deal from the book and there needs to be more books ASAP by Khan. Go and buy a copy and educate yourselves.

Films/TV

I have finally watched The Greatest Showman, after months and months of wanting to see it. It didn’t disappoint and is now on my mental list of films that I will watch when I’m feeling a bit rubbish.

This month, I feel like I’ve gone back in time to the noughties and am reliving my childhood through films. I’m not ashamed to say that this month I have happily watched The Princess Diaries 1 and 2, Cheaper By The Dozen and Matilda more than once.

Since becoming unwell, I’ve been watching more videos on YouTube to keep me entertained. The Mandeville Sisters are great and I especially like how open they are around disability, mental health and their own body insecurities. The added bonus is that their videos are normally quite short so I don’t lose focus half way through.

Spoonie Favourites

This month, I had been planning on going to my second EDS meet up, held locally to where I live. These groups are run by EDS UK and I honestly cannot recommend them enough. However, my body had other ideas about going to the meeting and I was struck with a bad infection, but I wanted to mention the groups anyway, for people who might be reading this and are unaware of the groups. Living with EDS can be very isolating at times and whilst I’ve “met” plenty of people online with EDS and am very lucky to have my best friend, who also has EDS, the group has allowed me to connect with more people who live close to me. Having EDS is an on-going journey and I think I’ll always be learning about the condition and the best ways of managing it, but ideas and advice are shared in the group meetings and I’ve been given advice and support that I hadn’t considered myself.

At the start of this month, I was officially diagnosed with Gastroparesis. As my list of medical conditions grows and grows, I decided that the time had come for me to purchase some awareness cards, which I can carry around with me, in the event that I should fall ill away from home.

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These  cards are on top of a new medical ID bracelet that I purchased a few weeks ago. Funny story, I was a bit off my face on morphine at the time of buying my ID bracelet,

I didn’t realise that 1) it was an American site and that I was paying in dollars, not pounds, 2) it cost over $80 3) there would be a hefty customs  charge when the bloody thing  arrived in England. Don’t go shopping after taking morphine, kids. Although, as my friend pointed out, I managed to spell everything correctly and write the correct name for myself, so that’s one positive.

Whilst there is still a level of anxiety over leaving the house alone or being with people who don’t have a good understanding over my health, but the combination of the Stickman Communications cards and my ID bracelet has made me feel more at ease, should something ever happen to me.

Odds and Sods

Along with buying books with my Amazon voucher, I also bought a CD. Retro I know, but I prefer to listen to music in the car, as opposed to radio. Since seeing Pitch Perfect 3 in the cinema at the beginning of the year, I have re-discovered my love of The Cranberries, so I bought their greatest hits CD. The result of this is I will drive out of my way on journeys so that I can listen to more of the CD.

Towards the end of last month, I went to stay with my best friend for a few days. She had already introduced me to the wonderful pyjamas at Matalan, so when she suggested that we went on a trip to Matalan, I was not going to refuse. A girl can never have too many pairs of pyjamas. Sadly their pyjama range wasn’t that great but I fell in love with their home wear section and could have bought half the shop, had it not been for my small suitcase and needing to cross London to get back home. The quality of their products is so good and are fairly inexpensive. A quick Google later and I discovered that there’s a Matalan fairly close to me, which I have now visited a couple of times. A definite convert.

It’s been a while since I talked about how much I love The Body Shop, so I should probably rectify that. The Body Shop have recently brought out a new body lotion, which they are calling a body yogurt. I bought the almond flavour, as I’m finding that I’m struggling with sensory overload a bit and the almond scent is very mild and doesn’t invade my nostrils too much. Would definitely recommend.

My final favourite for this month is the general blogging community over on Facebook. 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.

 

Universal Credit Saga – Part Four

The issues regarding universal credit have been continuing behind the scenes, over the past few weeks.

At the beginning of May, I had another commitment meeting, with my work coach. During this meeting, I handed in my latest copy of my fit note (also known as a sick note), now stating that I officially have gastroparesis. My work coach asked me if I was feeling better, I explained that things were much the same, hence the fit note. He looked a bit confused at the fact that I wasn’t getting any better: chronic illnesses are clearly a complex thing for people to get their heads around. There isn’t any “soon” in terms of me getting well. He asked me again if I could predict when I would be better and able to start work, so yet again, I explained very simply that I have long term chronic illnesses for which there is not a cure. I can not pick a random date and hope to be better by then, because that is not my reality.

So, yet again we went round in circles, with my work coach saying that he needed to in-put a date about when I would be better and he reminded me that on the system, I am available to attend interviews immediately and I am available to start work immediately. The computer did not randomly select these dates, my work coach in-putted into the system that I am available immediately, despite the medical evidence from three different medical professionals stating otherwise and me arguing that. He wasn’t very impressed when I informed him that not only have I not been job searching, but I have not attended any interviews and have not made any process in terms of getting a job.

You guessed it: I explained, for what feels like the billionth time, that I am very unwell. I am being sick every day, I am malnourished, I am exhausted, emotionally I am really struggling and actually, in no way am I fit to be in work. Despite all of this, I still desperately want to be working, to the point that I am now having literal dreams where I have a job. I still feel like a failure and a burden on people around me. I feel like I don’t have a purpose in life and I don’t know why I bother getting out of bed from one day to the next.

By the time that I had finished explaining this to my work coach, I had lost my shit a little bit, although somehow I managed to hold back the tears. I am so fed up of constantly needing to explain myself and being open to judgement by a man who does not know me and patronises me by telling me that he understands. Unless you have actually gone through this living hell, please don’t tell me that you understand because you don’t. Until everything that you have worked towards and aimed for in life has been taken away from you and you don’t know from one day to the next how sick you’re going to be, or whether you’re going to need medical treatment, don’t tell me that you understand.

After saying all of this to my work coach, he promptly turned around and told me that he didn’t feel that he needs to see me again. Naturally, this news delighted me but I was a little bit hurt when he said that he “couldn’t help me”. Maybe start listening and offer some support, instead of making me feel like crap? Just an idea.

So, things were left, I wasn’t sure what was happening but due to picking up an infection, I wasn’t well enough to start chasing a system which is more broken than me. I had received a form, in the post, which I had to fill in to tell people about my disability. Thankfully, it was a similar form to the PIP form so it didn’t hurt my somewhat foggy brain too much. I filled it in and then received an “invitation” to attend a work capability assessment.

And then, on the 23rd May, everything changed with one single phone call. I had contacted my local MP the previous day, so let her know that I was still awaiting a reply from the DWP, regarding the letter that I sent to Theresa May and she replied, letting me know that she would chase it again.

I received a phone call from the Department of Work and Pensions, attached to parliament. I was given a formal apology for how I have been treated in regards to my universal credit application and for any “undue and additional stress” that my treatment has caused. All of my work commitments have been stopped: I no longer have to be spending two hours a day job hunting, I don’t have to keep updating my CV, I don’t have to attend interviews and it has been agreed that I am currently too unwell to be working.

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At last, someone with some common sense! I want to cry with sheer relief that finally, someone has listened to me. I’m also incredibly grateful that Layla Moran MP has given her time to fight on my behalf because I’m 99.9% sure that the common sense has prevailed due to her involvement.

think that I still need to go through the formality of the work capability assessment, but I’m not totally sure. Either way, I’m not too worried about it now. Prior to the phone call, I knew that I would be attending the assessment with my work coach having said that I should be working and I knew that it would have been a tough job to get the assessor to think otherwise. But now that it’s been recognised that not only am I genuinely ill but also too unwell to work, my understanding is that the assessment is more of a box ticking exercise, a bit like PIP assessments.

This doesn’t mean that I’m going to stop fighting. There is still so many things wrong with a system which is [in theory] designed to help people. But instead, it’s failing people. It’s making people feel worthless and that is what needs to change. A work coach’s opinion should not outweigh medical evidence. Medical fact. If you are presenting with three different types of medical evidence, all stating that you are unfit for work, it is not down to someone without a medical degree to decide otherwise. I’m not sure what training you need to adhere to, in order to become a work coach, but I am fairly certain that it is not five plus years in medical school. Maybe it’s time that the knowledge and expertise of medical professionals is trusted, in the cases of people presenting with chronic, long term medical conditions.

Universal credit still has three major flaws, and until they are addressed, my experiences will be mirrored in other people, which is not okay. People are waiting up to 12 weeks for their first payment. That is three months without any income, potentially risking rent arrears, debt, financial insecurity, missing mortgage repayments and not being able to buy essential daily living items such as food, gas, electricity and water. Universal credit is also bloody complicated. People don’t understand it. I don’t understand it and the majority of the time, I have not had a clue what is happening and if I have been entitled to money. Because of this, people are not getting the help that they need and deserve because the system is failing them. It is failing the most vulnerable people in society, the people how don’t have a voice.

That is why I’m using my voice because I refuse to be silenced by a broken system.