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.

 

 

EDS Awareness Month: Stupid Injuries

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Prior to being diagnosed with Ehlers-Danlos Syndrome, I had a bit of a reputation of being a clumsy child. When I was in secondary school, my mum used to challenge me, at the start of every school term, to try and stay out of the local minor injuries unit and A&E majors and the trauma unit. I never succeeded. My PE teachers would despair each time I sustained a new injury, the school matron was sick of the sight of me and I’m fairly sure that I had my own supply for ice packs, because I went through so many.

Now that I have been diagnosed with EDS, the catalogue of injuries has grown but people are a little bit more understanding, although I do have to remind people that actually, I’m not clumsy, my body is just a bit wonky – I’m more prone to joint dislocations and broken bones – and sometimes, I’m simply very unlucky!

It would be a physical impossibility for me to go into all of my injuries. The nature of EDS means that I suffer from dislocations or subluxations every single day, often by doing nothing. I asked my mum for help when writing this because my memory isn’t the best at the moment. Her reply was “God. I don’t know, Laura, there is. So. Bloody. Much!” Instead, I’m going to explain some of the more memorable injuries that I’ve experienced in my twenty-five and a half years on planet earth. Looking back on my collection of injuries makes me incredibly grateful for the NHS and all of its fabulous staff.

I snapped the tendons in my little finger moving a piece of drama equipment in an after school drama club. I have no idea why, but I swear finger injuries are some of the most painful that I have sustained. This was my first finger injury and I found it pretty traumatic! I showed my friend my very very wonky and misshapen finger, whilst trying not to faint, she got the drama teachers to help and all I can really remember after that is being carried out of the drama studio, with my drama teacher singing songs from Oliver! as I continued trying not to faint. A senior member of staff offered to put my finger back into the joint, which I declined.

My friend dislocated and snapped the tendon in my index finger in a year 11 French lesson. I have talked about this injury in a blog post already and I can confirm that my poor friend is still teased endlessly about putting me in hospital and I still remind her of this injury when I want her to buy the first round of drinks in the pub.

More recently, I snapped the tendon in my index finger again, by picking a towel off the bathroom floor. You can imagine the looks that I received from medical staff in the minor injuries unit when I explained to them how I sustained this injury. Because picking up a towel from the floor is a very very dangerous exercise. The injury was more complicated than initially thought, meaning that I needed my whole hand splinted as it was the main tendon that I snapped, not the tendon at the tip of my finger. On reflection, I’m lucky that it has healed as well as it has done, because the injury wasn’t treated quickly, meaning that surgery was likely. As always, I like to prove people wrong!

A couple of months ago, I caught my little toe in my duvet and it dislocated. Not only did I managed to dislocate my toe, I somehow sustained a hair line fracture in my foot at the same time. I honestly have no idea how this happened.

Last year, I went to see Russell Howard on tour with one of my close friends. He was hilarious, I love that man. And I laughed so much that I dislocated my top rib on the right hand side of my body. It wasn’t especially painful but it put quite a bit of pressure on my lung. Unfortunately, I didn’t have enough sense to see my physiotherapist as soon as possible after this happened, so my rib ended up moving and sticking up, underneath my collar bone, which made relocating it difficult.

Speaking of ribs, there was also the perilous massage, that I experienced a few weeks ago. Never. Again.

Three years ago, shortly before my EDS diagnosis, I damaged the lateral collateral ligament (LCL), which runs down the outside of the knee. This resulted in me needing to wear a hefty leg brace for around three months. I’ve had issues with my knee since the age of ten, but this injury wrecked my knee pretty badly and I now need to have on-going physio treatment on my knee to keep it working as well as possible. How did I sustain this injury you ask? I was moving my bed side table [not heavy!].

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On the same theme of The Right Knee, I dislocated my knee, standing up, after sitting weirdly on the floor for a long period of time. From memory, I think I was w-sitting, which is a sitting position which many people with EDS find comfortable. It’s also very bad for the joints!

Shortly after I came out of my knee brace, I went to Portugal with a friend. I decided to make the most of being injury free and we went on a high ropes obstacle course. The end result of me living wildly was that I somehow damaged my shoulder badly and needed surgery in the summer of 2015 to repair the rotator cuff and tighten the muscles, ligaments and tendons to stop my muscle from popping out of the joint.

Last summer, prior to being diagnosed with vasovagal syncope and mild POTS, I fainted whilst walking upstairs and hit my face on the bannister. The following day, I was rushed to A&E with a suspected fracture in my cheek bone and potential damage to my eye. Thankfully all was okay! My poor cat was also squashed during this episode and it stopped him from being my little shadow for a few days. Poor puss.

Linked to me being a little bit fainty: during a PE lesson in my GCSE years at school, we were having to do shuttle runs, starting in press-up position. My body couldn’t cope with the change in gravity, resulting in a blood pressure drop and me falling to the ground, via my shoulder and breaking it. I was banned from shuttle runs after this.

I’ve talked a lot over recent months about on-going gastrointestinal issues and how this has resulted in me being sick numerous a day. This has caused various issues, as you can probably imagine, not least numerous dislocations of my jaw and damage to my “sick muscles” as my physio very scientifically called them.

As I said at the beginning of this post, this is by no means all my injuries, I’ve missed out the broken bones and other operations that I’ve had and I’m sure there are other injuries that I have forgotten about. EDS doesn’t just affect my joints, it is a multi systemic condition, affecting all the connective tissues in my body, from my head to my toes. Life with EDS can be hard and it’s often very misunderstood by people, but when it comes to injuries, I have the attitude of “if I don’t laugh, then I’ll cry.” It helps that my way of dealing with pain is pure hysterical laughter, which can be confusing for the medical staff when they treat me.

If you want more information about Ehlers-Danlos Syndrome, you can do so here.

 

 

 

 

EDS Awareness Month: A Week in the Life

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As part of Ehlers-Danlos Syndrome Awareness month, I thought I was share a snippet of what my life is like, in the form of a week in the life. This week is pretty average in terms of appointments and I’m not having a flare-up of symptoms, which has allowed me to carry in as normally as possible.

 

Monday

Today is mostly being spent recovering, following a weekend staying with my best friend. It wasn’t a wild weekend, of any sort, but unfortunately, I need a few days to recover after doing something. The travelling, in particular, has taken it out of me a bit and as a result, I am in more pain that normal. My right knee is very swollen, due to a mild dislocation from walking too much. My back is also more painful than usual: coach seating and underground seating isn’t ideal when you have back problems!

A while ago, I got myself a “Please Offer Me A Seat” badge, which is issued from Transport for London. This means that I’m able to ask people for a seat on underground trains when it’s really busy. The badge isn’t always well received: on the surface, I look like a healthy young adult, meaning that I have to tell people that I have a hidden disability. Sometimes, I can’t face having this conversation, so I stand. This makes me feel very dizzy and I am unsteady on my feet as it is. Throwing a moving tube train into the mix means that I resemble Bambi on ice. Eye roll.

Overall, today hasn’t been too bad in terms of dislocations. My fingers have been a bit free-spirited, as has my wrist but nothing too alarming.

Dislocation Count: Two

What: Right wrist and fingers

How: Cleaning my cat’s litter tray and making my bed

 

Tuesday

I have been dreading today. This morning I forced myself to go swimming, following advice from my physiotherapist to try and slowly introduce exercise back into my life, to see if it helps with my motility and general mood. Having endorphins zipping around my body has definitely made me feel a little bit more positive about life. Exercise is also allowing me to reconnect with my body and feel in control, at a time when I feel very out of control. My physio has given me some hydro-therapy exercises to do in the pool as well. with the aim of building my my core muscles and strength – my muscle mass as greatly reduced over the past few months, which has had a knock-on effect on how well I control my EDS symptoms.

This afternoon I had an appointment with gastroenterology. When I last saw my gastroenterologist, I took my Vomit Queen status to a whole new level, so I was aiming low in terms of this appointment: as long as I managed not to be sick, it would be a success.

In terms of managing not to be sick, the appointment was a complete success. In less positive news, I was officially diagnosed with gastroparesis this afternoon. I feel a bit emotionally numb about the diagnosis, it’s basically confirmed something which had been suspected since the beginning of the year but my consultant told me, very simply, that I will never have a normally digestive system again and aiming to live without vomiting is something that is incredibly unlikely. That sucks a bit, but I’m trying to focus on the fact that now I have a formal diagnosis, my medical team can start to formulate a clearer plan in how best to treat me.

Dislocation count: One (I think)

What: Rib(s)

How: Being sick

 

Wednesday

I had an appointment with my therapist over lunch today so we took advantage of the timing and did a supported meal. Well, she had a meal, I had a supplement drink, but that still remained a challenge, as I have hit a bit of a wall in terms of managing my intake through liquid nutrition drinks.

We also talked through my appointment from yesterday and how I’m feeling about what was said. I’m still feeling pretty numb about things, although the overarching feeling is relief more than anything. I suspect that in time, once the reality of the situation has hit home, there will be some tears and swearing. In general though, I’m feeling calm about things.

I went swimming again this morning. Whilst exercise is helping me mentally, I think that I might have overdone it slightly: my shoulder is very painful. I’m trying not to move my arm too much as movement makes the pain worse.

Dislocation count: Two

What: Thumb and toe

How: Picking up a box and walking

 

Thursday

Blood test this morning, to check my inflammation markers, as my last blood tests, run by my GP, showed that my C-reactive protein (CRP) was raised. I think a full blood count will also be checked; I normally have a full blood test every three to four months. As usual, there was a slight issue in finding a vein, I’m 99.9% sure my veins know when they’re able to be stabbed and go into hiding. I’m grateful that the nurses at my GP surgery know me well and remember that I’m a bit of a bleeder.

My aim had been to have a rest day today but that ended up not happening.

Dislocation count: One full and one partial

What: Shoulder and jaw

How: Taking a jumper off and yawning

 

Friday

Back again at my GP surgery, this time for an appointment with my GP. We talked through the medical side of my gastroparesis diagnosis – my consultant wants me to try some different medication, so my GP prescribed that today.

I feel really really tired today, partly because it is so warm at the moment. Not working does have a few benefits though and one of them is being able to sit in the garden and enjoy the rarity that is the sun in Great Britain. Lots of people have asked me how I keep myself entertained as I’m not working. The answer is simple: reading! When I don’t have the concentration levels of read an actual physical book, I listen to audiobooks.

Dislocation count: One

What: Shoulder

How: Taking a jumper off

 

Saturday and Sunday

Very hot again over the weekend. Hot weather is a blessing and a curse when it comes to having a chronic illness, my joints much prefer warmer weather to cold weather but POTS, vasovagal syncope and asthma are not huge fans and I need to be careful that I don’t become dehydrated. Having POTS and vasovagal syncope means that my blood vessels are a bit rubbish when it comes to doing what they should be doing. In simple terms, they are too relaxed and slow at contradicting and dilating, so blood pools in my frets and hands, meaning that my brain doesn’t get enough blood, which makes me feel dizzy and unwell.

On the EDS side of things, whilst my joints are less stiff and painful in warmer weather, I end up swelling up and this causes pressure on joints around my body. I have no idea why this happens, or if this is a common EDS thing…but basically whatever the weather and my body isn’t happy. Eye roll.

The hot weather has also played havoc with my sleep, so I’ll probably be spending next week catching up on my missed sleep over this weekend. People with EDS are likely to have adrenaline issues and that makes it really hard for us to fall asleep and stay asleep. And when we do fall asleep, we are prone to having crazy vivid dreams which feel like reality to us, combine that with being on medication which can cause vivid dreams and nighttime can be an odd time for me! I’ve also struggled with painsomnia over the past few nights. This is insomnia but with added extreme pain, meaning that I am in too much pain to sleep. Great fun.

Dislocation count: Three

What: Jaw (x2) and ribs

Doing what: Being sick

 

I hope this has given you an insight into what life is like with EDS. As I said, this has been a fairly average week for me, if you’ve seen out out and about, I won’t have looked sick, but lots of stuff has been happening that isn’t necessarily visible or obvious unless you know me well. Remember: you don’t have to look a certain way to be unwell!

 

 

EDS Awareness Month: What We Want You to Know

EDS awareness

In case you missed it or it wasn’t overly obvious by the title of this post, May is Ehlers-Danlos Awareness month – a month when all of us zebras come together and celebrate our wonkiness and rareness, whilst spreading the word about what EDS actually is.

Throughout April, I asked people for their help in putting together an awareness article about what EDS actually is, how we felt when we were diagnosed, whether that diagnosis was easy to come by and what we would like people to know. I would like to say a huge thank you to everyone who has contributed to this, quite simply, it wouldn’t have been possible without you.

Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.

The different types of EDS are caused by faults in certain genes that make connective tissue weaker. EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling. Some of the rare severe types can be life-threatening.

In total, there are 13 types of EDS:

So that’s the technical side out of the way, this is what we would like you to know about life with EDS.

“When I was diagnosed with EDS, I was overwhelmed and felt this weird combination of relief and disbelief. Here was a legitimate answer to problems I had been having since I was a baby, they weren’t all in my head. It was real. I am a textbook EDS case, but no one had caught it. This showed me how little medical professionals actually knew about my genetic disease. I also couldn’t believe that EDS doesn’t have a cure or a specific treatment. I was overwhelmed with the fact that I would be dealing with these things for forever. I was fifteen when a doctor told me I had EDS, but my definitive diagnosis came when I was sixteen. I became wheelchair bound exactly a year before my definitive diagnosis came, but the word EDS was never even mentioned to me until 8 months after I became dependent on the chair with every doctor telling me that nothing was really wrong. If I had known about this underlying condition, I would have avoided tearing out my joints at such a young age. The major damage came after I was misdiagnosed with conversion disorder by a hospital who refused to do testing or examination and insisted I was crazy. I was put through 6 hours of intensive physical therapy everyday for a month, and left the facility answerless and in a wheelchair, which I have been confined to ever since. 

What I want people to know about EDS is that it may not always be visible, but it’s real. It’s not anything you choose and not your fault. It’s not just a joint problem; it’s an entire body problem with co-morbidities and constant pain. Your life doesn’t have to always revolve around your sickness; you can have friends and family and hobbies. Your illness will affect your life, sure, maybe even every aspect of it. Find doctors that empower you, are knowledgeable about your condition, and are committed to helping you feel better.” Ella

“When I received my diagnosis from my geneticist, he talked for an hour about all the other health issues that can go along with EDS, such as gastrointestinal issues, dysautonomia, heart problems etc. He ended the appointment saying that I was going to be getting care to benefit my quality of life, not curative care. It was crushing to hear that I would deal with this forever. I was SO overwhelmed.

EDS affects everyone differently. It can be severe for some and not for others. Keep in mind that everyone with EDS struggles with different things.” Emma

eds

“The one word that comes to mind about receiving my EDS diagnosis is relief. I was so relieved to finally know what was going on with my body, and I was happy to have proved so many doctors wrong because it wasn’t “all in my head.” At the same time, I was scared because my diagnosis meant I had a progressive, lifelong illness. From the start of my prominent symptoms, it only took me a year to be diagnosed. I am very lucky. However, I have had some symptoms since as long as I can remember because you are born with EDS so technically a diagnosis took 15 years. If I could tell the world anything about EDS, I would say that it’s not just EDS. Stereotypically, EDS affects the skin and joints, but the truth is, our faulty connective tissue is everywhere, and it affects everything. Many of us have debilitating comorbidities. I, for example, have several allergic reactions a day and I get violent shaking from a lack of proper blood flow. And that’s just skimming the surface.” Allie

“As a child, I was always very flexible and my joints cracked a lot but most of my symptoms started three years ago: pain subluxations, strokes, tachycardia, malaise, sleep disorders plus more. If was a relief for me to have a name. Five months laters and it’s a little harder to say that this will be my life.” Ophie.

“I was lucky that I was diagnosed when I was 10. As I was so young the diagnosis didn’t really mean much to me. It meant a lot to my parents though. Before my diagnosis I had been accused of attention seeking, my mum had been accused of having Munchausens   and making me ill. My parents had also been accused of physical abuse because I was always injured. I was then told that I possibly had leukaemia and bone cancer so actually getting a final answer meant the world. A diagnosis also meant that I could finally get some help for the constant pain I was in.

I wish people took EDS more seriously. Just because I look healthy doesn’t mean I am not in agony. I’m also not lazy, my body just won’t let me do certain things” Beth

“When I first got diagnosed with Ehlers Danlos Syndrome I felt so happy that I cried. That may seem strange to some but for the first time ever my symptoms weren’t “all in my head” and my doctor had an idea of what could help me instead of the usual “I don’t know what else to do” answer. I was diagnosed at the age of 25 but I had many symptoms my whole life that were worsening. I would like people to know that EDS effects more than just joints. It can effect the organs to make them not work properly and can worsen in time if not taken care of.” Amber

“When I was diagnosed, I was so relieved. I finally felt like I wasn’t faking it. It took 16 years to get a diagnosis, I had symptoms as a baby and it just got worse, until I was diagnosed at the age of 16. I would just like people to know that EDS exists. It’s hard to get the people who love you to accept it as a real thing.” Anon

“I started getting symptoms when I was 11 and hit puberty…over 10 years I became more and more unwell with other symptoms, as well as EDS. I was bedridden for months and housebound for years, with the NHS telling me that it was chronic fatigue and fibromyalgia. I had various forms of intervention but nothing worked. 

When I was officially diagnosed, I was super relieved just to have a name to what was going on. Having a diagnosis allowed me to create a health plan and feel more positive about things. 

I think that it’s important to raise awareness about EDS and how hard and vague the diagnosis process is. Most of my doctors hadn’t heard of EDS, so I had to educate myself.” Alice

 

dazzle-definition

 

“When I first got diagnosed with Ehlers Danlos Syndrome I felt so happy that I cried. That may seem strange to some but for the first time ever my symptoms weren’t “all in my head” and my doctor had an idea of what could help me instead of the usual “I don’t know what else to do” answer. I felt heard and my symptoms made sense. I was diagnosed in Oct 2017 at the age of 25 but I had many symptoms my whole life that were worsening. I would like people to know that EDS effects more than just joints. It can effect the organs to make them not work properly and can worsen in time if not taken care of” Amber

“Being told that I have EDS was life changing. Before that, I was constantly accused of pretending to be injured and as a family, we went through a few months of my parents being accused of hurting me. No one believed me when I said that I didn’t know how I was injured. People still find my situation hard to understand but I don’t worry as much now. I want people to know that EDS is real.” Jack

“I was symptomatic for about 3 years before I got hEDS diagnosed. It took 2 more years to find a good team of doctors to treat it and get various other things with it diagnosed. I got really symptomatic at age 18/19 and got diagnosed at age 22. I’ve been symptomatic my entire life though. All I felt was relief and frustration that it was missed for so long. I want people to know that well-managed EDS and co. Isn’t a death sentence. I often barely notice it unless I’m in a flare-I have done a lot of work to get this far. Keep working with your doctors to get a good treatment plan, you can live a good life if it’s well-managed. Also don’t be afraid to get new doctors if you don’t agree with how they are treating you-long term it paid off greatly. You got this!” Kathryn