August Favourites

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Welcome to another monthly favourites post, looking at all the things I’ve been loving in August! This month seems to have flown by and it’s mad to think that we are nearly in September. Bring on the cosy evenings in front of the fire, fluffy jumpers and Ugg boots. People who know me will know that I’m not a huge fan of summer and much prefer freezing cold winter days…I can’t wait.

Due to being pretty unwell over the past four or five weeks, this post is probably going to be a bit shorter than my usual monthly favourites posts, simply because in between a lot of sleeping and a lot of time being spent in hospital, I haven’t really done a lot to warrant favourites. But anyway, here we go…

Books

Last month, I talked about Holly Bourne’s first adult fiction book, How Do You Like Me Now? which has recently released and that I had fairly low expectations, as her last young adult fiction book which had been released prior to that, wasn’t that great and felt rushed. After reading her latest release, back under the YA fiction umbrella, I can confirm that Holly Bourne is back. Are We All Lemmings and Snowflakes is possibly Holly’s best book, with a strong and unique plot line. As per her other books, Holly has focused on mental health, normalising it and reducing the stigma. The book follows Olive, a teenage girl living on the edge of a mental health crisis, who is given the opportunity to attend a summer camp for teens struggling with mental illnesses. Through her own experiences, Olive begins to put together a plan to not only solve her own mental illness, but the mental illnesses of everyone in the world. It is raw, compassionate and explores mental health in a sensitive but informative way.

Another book that I have enjoyed this month is Don’t Stop Thinking About Tomorrow by Siobhan Curham. This is another book which has been beautifully written, looking at issues surrounding young carers and children and young people with refugee status in the UK. Stevie lives with her mum, on the poverty line, after her mum’s benefits are stopped. Hafiz is a Syrian refugee. Both are big dreamers and as their friendship develops, they begin to understand their similarities as well as their differences. Having experienced the benefits system, parts of this book really resonated with me: Siobhan highlights how powerless you end up feeling, when you are treated as nothing more than a statistical figure as opposed to a person.

Films/TV

Over the past few months, I have been watching Ackley Bridge and have ended up getting kind of hooked to it. When Waterloo Road was being shown on television, I was obsessed with it and now have the box set on DVD, which keeps me sane when insomnia strikes. Ackley Bridge is similar to Waterloo Road, in that it focuses on the lives of various students and members of staff at Ackley Bridge College. It’s probably not going to win any awards but it’s worth watching if you need something that doesn’t require much concentration. Series one and two are available to watch online now.

This month I did something very rare for me and went to the cinema to see Mamma Mia: Here We Go Again. My mum and I both love Mamma Mia, it is our go to film on rainy days, so it was only right that we went to the cinema to see the second film. I was a bit skeptical about it and wasn’t sure if it would live up to the hype and expectations but I loved it. It really is a proper feel good film (ignoring the gut wrenching scenes towards the end) and Lily James is beautiful.

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I am so excited that the line up to Strictly Come Dancing has been announced. Reminder to all my friends: don’t expect me to socialise on Saturday evenings once it starts!

The Great British Bake Off is also back soon. After just about getting over the move from the BBC to channel four, I am able to admit that actually, the new line up works well. I’m still loyal to Mary Berry but as the presenters and judges have gelled, it doesn’t feel as cringe to watch and for the most part, they are funny.

Spoonie Favourites

Let’s talk about pyjamas. I spent a lot of time in my pyjamas and if I got my own way, I would spent a lot more time in pyjamas. Because of this, I take pyjama buying very seriously. The majority of my pyjamas used to be M&S but recently, I’ve been disappointed in the quality of them, especially as they shrink in the wash and end up as angle swingers. That’s saying something considering how short my legs are. Having tried various other brands including Matalan, Tesco and Fat Face, I ended up buying a couple of pairs from Sainsbury’s and I can’t fault them. They are super soft, cosy and don’t shrink in the wash. They’re also fairly cheap, so any excuse to buy more!

Odds and Sods 

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Having gastroparesis means that food is something that I have come to dread, rather than enjoy, so finding foods that I’m able to eat without being sick and actually taste nice is fairly unheard of. I came across the brand Pudology, who make gluten and dairy free desserts, which is perfect for the diet that I have to follow. They taste so good and so far, I seem to have been able to eat them without any vomiting, which is great news!

What have your favourites been this month? I love finding out what other people have been loving and would recommend.

Gastroparesis Awareness Month – Sarah’s Story

Gastro what? That was my initial reaction to my doctor’s suggestion that a condition called gastroparesis may be causing my symptoms of nausea, reflux, stomach pain, bloating and vomiting. I had also lost a significant amount of weight taking me from a healthy BMI down to a BMI in the 13’s at my worst. Having been back and forth to the GP and gastroenterologist for over a year and a half I was desperate for an answer. Naively I thought an answer would mean a cure. That evening I took my prescription of domperidone home and opened up the NHS website, carefully typing in gastroparesis. As I read through the symptoms I ticked each one off, I didn’t know whether to celebrate or commiserate, here was my answer after all this time. But there is no cure.

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Now, I’m no stranger to chronic illness, having already been diagnosed with M.E/CFS, endometriosis, IBS and POTS. But my gastroparesis diagnosis was the hardest to accept as it is such a change to everyday life. Gastroparesis translates to stomach paralysis, meaning the stomach does not contract properly to move food through into the small bowel: it is thought to be caused by damage to the vagus nerve, however gastroparesis is still a little understood condition. For some patients they are able to eat small, frequent amounts of easily digestible foods and manage their symptoms with no medication just dietary changes. For some patients they take medications called prokinetic medications which help encourage the stomach to contract and empty, so they are able to eat more normally again, many patients also take antiemetic medications to stop them feeling or being sick. Some patients manage on a purée diet, others a full liquid diet. For the more severely affected patients their nutrition will be artificial in the form of either oral nutrition supplements (ONS), tube feeds (enteral nutrition) or sterile liquid nutrition IV (parenteral nutrition).

On the 6th  of March 2017 I finally had my gastric emptying study, I sat up in nuclear medicine eating my radioactive cottage pie, Sainsbury’s Basic, and stood in front of a scanner at regular intervals to see how much of the radioactive mash potato in my stomach. I felt like the test went on forever. For a few weeks before I hadn’t been allowed certain medications and on the morning of the study I wasn’t allowed anything to eat or drink, including my usual medication for my nausea. Consequently I spent the hours of the study feeling increasingly ill and was relieved when I was finally allowed to go, I didn’t even get my foot out of the door before taking my antiemetic tablet!

Just three days later, the 9th of March 2017, I was diagnosed with gastroparesis. I had been admitted to hospital to begin tube feedings after over a year of supplement drinks and ever decreasing weight and blood results. I initially started with a nasogastric (NG) tube, which slowly dripped a liquid feed into my stomach for 20 hours a day. After a few months it was apparent that the NG was not the right option for me, I wasn’t tolerating my feed and was therefore losing yet more weight. Next up was the nasojejunal (NJ) which was placed into the jejunum which is the second portion of the small intestine. My first one was placed as an outpatient procedure which unfortunately went a little off plan, somehow some bacteria got in with the tube and I ended up with a particularly nasty gastrointestinal infection which resulted in one home visit from an out of hours GP, two ambulances to A&E and another 10 day hospital admission. I left hospital half a stone lighter with an NG tube and a plan to retry the NJ tube in a few weeks as an inpatient for the sake of safety. Luckily the second time round everything went smoothly and after a number of weeks and a feed change I was finally feeling a little better! A few days short of a year after my first NG was placed my feeding tube was changed from the temporary NJ tube to a more permanent PEGJ (Percutaneous Endoscopic Gastrostomy with Jejunal extension), a feeding tube placed through the skin of your abdomen, through your abdominal wall and  into your stomach with another thinner tube inside which travels down into the jejunum. This allows access to the jejunum for feeds and the stomach for venting gas and draining bile, acid and built up stomach contents.

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At the time of starting tube feeding I was terrified, at the age of 25 I had spoken to my Mum about what I wanted my funeral to be like. I had lost my job from simply being too poorly to get out of bed and go to work most days, often having six weeks at a time off. But honestly, I’m so glad I consented to the tube feeds. Between the feeds and the right combination of medication I’ve got my life back. I once again have the energy to have days out (albeit in my wheelchair due to my other conditions), spend time with family and friends and have even met the most wonderful man who loves me despite my illnesses, wheelchair and feeding tubes both NJ and PEGJ. I’m also a hell of a lot stronger, I’ve met some lovely people I now consider good friends and appreciate life so much more. At the time of receiving my gastroparesis diagnosis I thought my life was ending. But really it was just starting again.

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I’m Not Inspirational: Addison’s Diagnosis

I recently wrote a blog post which was a bit of a health update and talked about my diagnosis of Addison’s Disease. Much like my other health conditions, Addison’s Disease is classed as a rare disease: approximately 8,400 people in the UK have Addison’s disease. Addison’s is also known as as primary adrenal insufficiency or hypoadrenalism, affecting the adrenal glands, which sit just above the kidneys. The adrenal glands produce two hormones: cortisol and aldosterone. When people have Addison’s, their adrenal glands are damaged, resulting in not enough cortisol and aldosterone are produced.

Being diagnosed with Addison’s has come as a huge shock and I don’t think that the seriousness of the illness has sunk in. I have been ill for years, but this scary ill, as I probably said in a previous post. The early symptoms of Addison’s a lack of energy, muscle weakness and loss of appetite, all things that I experienced anyway and were my normal. It will be interesting to see if the medication that I’m now on will make a difference.

With treatment, symptoms of Addison’s disease can largely be controlled. It is treated with medication to replace the missing hormones: I will be on medication for the rest of my life. However, people with Addison’s disease must be constantly aware of the risk of a sudden worsening of symptoms, called an adrenal crisis. This can happen when the levels of cortisol in your body fall significantly. It was really unfortunate that I experienced my first adrenal crisis on the same day as diagnosis. I have a lot of gaps in my memory with regards to my first adrenal crisis, which is probably for the best in some ways.

I am really lucky to have a medical team who are on the ball, I have received a phone call every day from someone in the endo team to check in with me and make sure that I’m coping okay. My friends have also been fantastic, I really cannot thank you enough. It means the world to me when people make the effort to read up about conditions that I’m diagnosed with to try and get a better understanding of what I’m going through. In fact, I’ve cried a few times from sheer gratitude.

But this brings me on to something that I just need to vent and put out there. I am not inspirational. None of this is a choice and I can’t wallow my symptoms away. I’m fairly open and honest about life, health and everything else but there are some things that I don’t share. I don’t always share the worst bits because it’s not appropriate, I’m not well enough and I want to keep a bit of dignity. I might joke about things, but that doesn’t mean that I’m okay or coping well with what it going on.

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I find it so hard when people tell me that I’m inspirational because honestly, what choice do I have? I’m not writing to inspire anyone, or to be inspiring myself. I write because otherwise all these thoughts would be stuck in my brain and I would drive myself insane. I write because it gives me the freedom that physically, my body doesn’t give me. People often assume that people who are ill or disable are wondrous people, to be held with such high accolade. This is where I’m going to disappoint: I am just like you. I have good days and I have bad days. I watch shit TV, I can be grouchy and I can be off the wall happy. I can also be bloody boring at times but again, that’s the stuff that I don’t share because no one, I repeat, no one, cares if I plucked my eyebrows or tried a different shampoo.

Life can be really difficult. I have had to overcome things that other people my age perhaps would not have faced. But that doesn’t make me ashamed of my body and it’s wonkiness. Frustrated maybe, but not ashamed. Because this is my body and only am I allowed to pass judgment on it. I’ve had over 25 years living in my body and I’d like many more years. At times, I hate it. At times, I love it. Other times, I tolerate it as my home. It doesn’t always do what I would like it to do and that can make things challenging and it can lead me to question whether or not I can keep up the endless fight.  My normal is not the same as your normal. Your normal is not the same as anyone else’s normal. I’m not inspiring for being normal.

Gastroparesis Awareness Month: Ellie’s Story

As part of HAN (Home Artificial Nutrition) Awareness Week and Gastroparesis Awareness Month, I thought I’d share my story. My name is Ellie and I’m eighteen years old.

Since the age of 13, chronic illness has played a massive part in my life. I am very new to the parenteral and enteral nutrition community, as I have only had a feeding tube since April this year.
My main conditions are Ehlers-Danlos Syndrome, which is a rare inherited condition that affects all the connective tissue in your body (including your digestive system).  I also have severe M.E (Myalgic Encephalomyelitis) which is a very misunderstood neurological condition, that leads to debilitating fatigue, painful muscles/joints, gastric disturbances, poor memory and much more.

Artificial nutrition is a medical treatment which allows a person to receive nutrition (food) and hydration (fluids) when they are no longer able to take them by mouth. This might be through a feeding tube or intravenously fed into the heart. Some people use tubes as assistance while also taking food by mouth, whereas others are fed solely by their tubes.

Without the support of my feeding tube, I wouldn’t be alive. Like any other human being, I still crave food. The textures, temperatures and smells of food get the better of me and I still eat sometimes. Watching people eat around me so freely sometimes can be so hard. Most of the time I chew gum or eat a mint to settle the hunger.

I have had to fight my corner to get the nutrition I desperately needed. I was loosing weight very fast, because of the severe pain and nausea after eating and drinking. Doctor’s either believed it was an eating disorder or just acid-reflix. It took until I was very medically unstable to be admitted to the gastrointestinal ward for help. Although I now have a feeding tube, it doesn’t cure the problem that I have.

We still don’t know what is the reason for all my digestive symptoms and doctors refuse to investigate further, which means the feeding tube will probably be with me forever. I am currently fed into my stomach through a naso-gastric tube, which is still causing a lot of problems for me, even at a very slow rate of feeding (mls/per hour). NG-tube feeding is usually only a temporary solution, therefore I am booked in to have a jejunostomy feeding tube surgically placed straight into my jejunum. This is the middle segment of the small intestine. Most of the nutrients present in food or my special liquid feed are absorbed by the jejunum so the purpose of a stomach isn’t needed.

This hopefully will cause less symptoms meaning that I can start to gain weight and have a better quality of life. Having a feeding tube isn’t glamorous or a fashion accessory. It’s survival. Having a feeding tube stuck on your face 24/7 can be mentally very draining. I find it very hard to cope with sometimes and some people think i suffer with anorexia because of the stereotype of them. Even medical professionals have told me to seek counselling because of my eating problems.

My biggest bit of advice is to never let alone tell you something that isn’t true. Don’t think that just because doctors are medical professionals, that automatically means they are correct.

Currently, I have a sinusitis infection, because the tube has caused so much inflammation throughout my nasal passage. This is one of the many downsides to having a tube.

Despite the feeding tube, i am determined to not let that get in the way of me living life.  I’m hoping that after having my jejunostomy surgery, I can attend rehabilitation to enable me to gain some independence back. Anyone who’s facing the prospect of a feeding tube or another form of nutrition needs to realise that it’s in their best interest.

Don’t feel like just because you can eat little bits that you aren’t worthy of needing one. I still snack on bits of food but I wouldn’t be able to sustain myself without the tube! Most importantly, don’t be frightened. I know it can feel very daunting as it’s life changing, but it’s nothing to worry about. The amount of support out there from other young people with feeding tubes is incredible. Even if locally, you don’t know anyone, there are always people to talk to and support groups! Some days will be the toughest day’s you’ll ever go through but in the end it’s so worth it.

2018, you’re still being a bitch

At the beginning of the year, I wrote a blog post saying that 2018 was proving to be a bit of a bitch. At that point, I was suffering with extreme vomiting and was, in general, really unwell, but I didn’t really know what was wrong, although I has my suspicions which later proved to be correct.

We are now in August and closer to the end of the year than we are to the beginning and honestly, 2018 has been hell. A steamy shitty pile of hell. Don’t get me wrong, there have been good points, such as being able to go up to York but for the most part, I have been incredibly unwell and have spent the majority of the year in bed or on the sofa. If I’m being honest, I don’t feel like I’ve achieved much, but then the kinder part of me kicks in and I remind myself that for a start, I’m still alive, which right now amazes me. I might not be able to work but I have re-established my blog and been nominated for two awards in the process. I’m slowly getting my name out there and doing freelance writing when I’m well enough and after being nagged by people for ages, I am semi-planning to write a book. More on that, another time.

So, what’s been happening?

After I returned from York, my health rapidly declined. Initially, I went into unexplained urine retention, my bladder was drained at my GP surgery and I went on my merry way thinking that was that. Less than 24 hours later, I went into urine retention again and ended up being fitted with a catheter for just under a week. I was lucky, in the respect that I could still feel when I needed to pee, so instead of having a bag, I was fitted with a flip flow valve. Think turning of a tap and then peeing. Everything was fine, until my urine starting by-passing the catheter and I was able to pee normally with the catheter still fitted. That’s not normal. I’m also using the term “fine” very loosely: having a catheter fitting messed with my head so much that I reached the point whereby I was watching YouTube videos on how to remove a catheter at home.

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It wasn’t a case of worrying what other people thought of me, it was how it made me feel. My body does a lot of things which makes me feel like I’m losing control but this took things to a new extreme. I was really self conscious and was convinced that I constantly smelt of urine, so by the time I saw my catheter nurse, I was begging to have it removed, even if it was against medical advice. Thankfully she was in agreement and fingers crossed, my bladder has behaved since then.

A few days after the catheter drama ended, I found out that the probable reason behind the retention was a kidney infection, the first of three in as many weeks.

I ended up in out of hours hospital due to a gastroparesis flare, which triggered cyclical vomiting, so that I could have an injection of intra-musclular anti sickness. This episode finally convinced my GP and nurses at my GP surgery that I should be trained to inject the anti-sickness myself. Turns out, injecting myself is very different to injecting a grapefruit.

Just over a month ago, I had an appointment with Dr Hakim, in London, who recommended, amongst various other things, that I should have a blood test to check my cortisol levels. I had said blood tests and the results came back, causing a bit of drama. Normal cortisol levels at 9am, when I had the blood tests, should be over 400. Mine were 87. Since finding this out, just over a week ago, my health has worsened again. I’ve been sleeping 18+ hours a day, been very weak with awful muscle pain, dizzy, confused and generally not okay. These symptoms aren’t unusual for me, but the extreme nature of them over the past week has been scary and I have a lot of gaps in my memory because I’ve been too ill to process what has been happening.

Yesterday I had an appointment at the endocrinology department at one of the Oxford. They ran more tests and said that they are 99% sure that I had Addison’s Disease . Even when I was having the final test (awful experience, having an injection which makes you want to vomit) I was in slight denial. It was only when my wonderful endo nurse sat down with me, with paperwork that I had to sign, which was passed onto the ambulance service, to say that if they received a call about me, it had to be treated as high risk, that I started to actually realise how serious was.

I don’t think anyone was expecting that just a few hours later, my mum would be calling 999, because I was experiencing my first adrenal crisis. Again, I have a lot of memory gaps because I was too ill to process what was going on. I know that I was being very sick and the anti-sickness injection that I administered did absolutely nothing to stop the sickness. I know that I walked out of the house vomiting, which would have been a lovely sight for any nosy neighbours on a Friday afternoon and I know that I made my grand entrance to A&E by vomiting everywhere. Whatever anti-sickness they gave me was like liquid gold and instantly stopped the vomming but a good few hours passed before I was fully aware of my surroundings and what was happening.

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Yesterday was a terrifying experience and I know that managing gastroparesis and Addison’s is going to be a challenge, but I have a good care plan in place and a lot of medical support to make sure this is controlled as much as possible.

I don’t think I’ve fully processed everything from the past few weeks, I suspect it will take some time and it will be something that I’ll be dealing with in therapy for the foreseeable future but that’s okay. Right now, I’m just hoping for a stable few weeks because I’m physically and emotionally drained, as is my mum.

All that remains for me to say is a huge thank you to everyone who continues to support me on this crazy journey people call life. It’s bloody tough!

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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