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.

 

 

Let’s Talk: Mental Health

May is a busy month when it comes to spreading awareness. On top of it being Ehlers-Danlos Syndrome awareness month, it is also mental health awareness month. May 2018 marks a decade of me suddenly plummeting into a world whereby I am all to aware about mental health and mental illness. and I’ll be honest, I have been dreading it.

In May 2008, a very close friend committed suicide. I’ve spoken about the suicide of Nicola and another friend in another blog post, but given that it’s mental health awareness month and a decade on from Nicola’s death, I wanted to touch on it again.

Nicola and I met at nursery, she was confident, sassy and clever. She took me under her wing and made me feel better about being forced to learn French and German and having to eat quiche for lunch. Her sassiness only grew as she got older, she stood up for what she believed was right and was fiercely loyal and caring to everyone in her life.

I found out that Nicola had died shortly before leaving for school, when I was in year 10. It didn’t seem real, I can remember telling my friend, who I was walking to school with, and there was a level of disbelief from both of us: considering the news that I had just received, I was incredibly calm, stating that Nicola had died as though I was announcing that the sky was blue. My day carried on as normal for a few hours, before I crumpled and the news really hit. It seemed impossible that my sassy and fiery friend was no longer alive.

Nicola hadn’t said anything to anyone in her life which would have given us a clue of how low she was feeling. This remains that hardest thing for me, ten years one, I maintain that I should have seen something, I should have picked up that she wasn’t happy.  I spent weeks and months analysing our saved conversations on instant messenger to see if there was something I had missed. It reached the point where I made myself ill analysing these messages and I convinced myself that I was an awful person for not picking up on subtle changes on Nicola’s behaviour in the weeks leading up to her death.

Prior to Nicola’s death, I am not ashamed to say that I was fairly oblivious to mental illnesses. Yet, all of a sudden, I was thrown into a world where suicide, depression, anxiety and self harm became every day language.

This is where I am going to be really honest. I’m struggling at the moment and in the interests of transparency, I’m admitting that, although I find it hard to. I am open and honest about my mental health: I talk to my GP, therapist and physiotherapist about it and I talk to friends and family. But I normally do the talking after the blip/crisis has passed, not during the moments of feeling rubbish.

A lot of this is probably circumstantial. On top of the on-going issues relating to EDS, gastroparesis etc, I am normal person sick. It’s not the end of world, but it has made things considerably harder and physically, I have felt crap.  Lying in bed with all the time in the world has given more too much time to think. Turns out that being malnourished adds a lot of time to the whole recovery from illness thing. Who knew?

I just feel sad. And it’s okay that I feel sad. I am allowed to feel sad. Three years post-EDS diagnosis and I have more or less got my head around the genetic monster that has invaded my body. It’s still hard, sometimes it’s really hard but I’m used to it. It’s my normal and I am used to dealing with that normal. Throw in gastroparesis to the mix and yet again I am feeling like I have been chewed up by life, vomited back up, chucked around a bit and chewed up again.

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Illness has changed me as a person. I don’t mean that in a philosophical way, I mean it in a literal way. Before I became ill, I was punctual, social, confident and fairly carefree. Now that I am ill the best way that I can describe myself is flaky. I cancel plans more often than following them through, leaving the house alone makes me so anxious because I don’t trust my body and it feels like a military operation if I do manage to walk out of the front door.

I cancel plans because I’m sick, not because I don’t care or value my friends. I hope that my friends understand this, cancelling plans isn’t easy and I will often need to psych myself up to send that text because I hate letting my friends down or making them sad, annoyed or whatever. We are currently half way through May and this year I have missed birthdays, theatre shows, meet ups, planned days out, events and meetings all because I am too sick to leave the house, or I am exhausted, overly anxious or simply without the mental willpower to actual deal with adulting.

I have had enough. I have had enough of this life. I didn’t ask for this. No one asks to be ill but right now, I am struggling with huge and unexpected lifestyle changes that I’m having to go through. I feel so so isolated, more than I can put into words. Which is obviously going to impact on how I’m feeling.

I’m an anxious, sad, tired mess and I want to run away and escape for a while. Although the irony of that is that I’m not well enough to do that. Eye roll. I think the fact that the weather is improving is another factor which makes things harder.   I want to be outside, drinking gin in a pub garden, going for walks by the river, having day trips to the beach or enjoying the countryside around where I live. None of that is possible.

Much like chronic illnesses, you can’t see mental illnesses but it is something becoming more and more prevalent in society, however that isn’t something which is reflected by the government’s mental health strategy.

When given the choice between being right or being kind: choose kind.

R.J. Palacio, Wonder

My message here is simple: be kind to people because not being able to see their suffering does not mean that they are okay. Give your friends a hug because they might really need it. Ask your friends and family how they are and give them the time and space to talk. Text a friend who you haven’t heard from, for a while. Reach out, care and be kind.

 

 

EDS Awareness Month: Stupid Injuries

EDS awareness

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

EDS awareness

 

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

 

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“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

 

Ehlers-Danlos Syndrome Awareness Month – My EDS Story

 

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In May 2015, I was diagnosed with Ehlers-Danlos Syndrome and fibromyalgia, then in February 2016, I was diagnosed with reactive arthritis. Whilst the majority of my diagnoses have been over the past few years, I started to become symptomatic in terms of EDS when I was around the age of 13, but I was passed off as clumsy by my school and healthcare professionals. EDS doesn’t run in the family, so no one was looking out for it: I have wonky genes along with wonky joints and that’s taken quite a lot of adjustment to get used to. Throughout my secondary school years, I had a catalogue of bizarre injuries including my finger being dislocated and the main tendons being snapped when my friend held my hand in a French lesson, dislocating my knee by standing up (yes, really!), numerous broken bones, dislocating my shoulder doing a press up…I could continue! People found it funny, I had a reputation of being clumsy and often resembling Bambi on ice and the school matron was sick of the sight of my face. My mum raised how abnormal my injuries were to medical staff and was dismissed: they also thought that I was just a clumsy teenager.

In short, EDS is a connective tissue disorder: my joints dislocate really easily, my immune system is pretty rubbish and I’m in constant pain all the time. More recently, I’ve been experiencing issues with the tissues in my digestive system and it’s likely that I have gastroparesis. This has been a hard blow and adjusting to the latest symptoms has made the past few months tough. Dealing with being malnourished makes life a lot harder and I’ve had to give up a lot of things because physically and mentally, it was just too much.

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As a teenager, despite my various illnesses, I had a really active life. I was dancing numerous times a week and performing in dance shows. I was also on a county trampolining team and competing frequently. I loved playing netball and hockey and was on the school teams for both. I still love all of those things and it makes me sad that I’m unable to do most of them now. When I was in 6th form, my health declined at quite a dramatic rate: I literally woke up one day and was unable to walk. Months of investigations later and I was told that I had torn the cartilage in my right hip. I went from being independent to being reliant on my mum and staff at my school to help me get around: I couldn’t walk and was frequently on crutches and I was scared and in so much pain. My two 6th form years are a bit of a blur, thanks of the medication cocktail that I was on to try and reduce the pain that I was on. The stress of A-Levels and my health combined turned me into a bit of an emotional wreck and all I can really remember is how often I ended up sobbing at my year head – a wonderful lady who never gave up on me, even when I gave her hell.

The summer before I moved to university, I had major surgery on my hip to repair the tear. It was initially a success, however the cartilage re-tore under two years later and I had major surgery on the same hip again in the summer before my final year at university. Even at this point, I hadn’t been diagnosed with EDS: I was being treated as a medical anomaly, with medical professionals doing a lot of head scratching about my symptoms.

Like I said above, the past few months have been especially tough, with the suspected gastroparesis. In January I was offered my dream job, working with the early intervention team in children’s social services. However, I had to decline the job due to how unwell I’ve been. I was also at college part time, doing a counselling course and I’ve had to defer from the course due to low attendance. My hope is that in time, I will be well enough to work again, but I know that working full time just isn’t possible. That realisation is hard, I so desperately want to be working full time like the majority of my friends, instead I’m battling the universal credit system and being made to feel like an utter burden to society because I’m too unwell to work.

Going back to being diagnosed, I need to thank my incredible physiotherapist for putting all the puzzle pieces together and telling me about Ehlers-Danlos Syndrome. She went through the Beighton Scale with me and told me that I scored eight out of nine, with only my left thumb not showing signs of hypermobility. In general, my right side tends to be more symptomatic, with most of the dislocations being on that side. In the time since being formally diagnosed, I have had major surgery on my right shoulder to prevent it from dislocating and having the joint reconstructed. It hasn’t stopped the dislocations completely but the joint is now stronger. I’m going to need surgery on my right knee and my right wrist is really starting to struggle from general wear and tear but it’s being managed fairly well through physiotherapy treatment and splinting the joints.

My flare ups tend to follow the pattern of being down my right side. The joints most affected are my hip, knee, wrist and ribs. I had an unfortunate rib dislocation incident when I went to see Russell Howard live and laughed so hard that my top right rib popped out. Flares are unpredictable, there doesn’t seem to be a particular trigger for me going into a flare, although being unwell goes hand in hand with a flare. The length varies as well, if I catch the flare early and am able to see my physiotherapist, that can reduce the severity, but normally I just need to ride it out and sleep a lot. I’ve learnt how to control flares, as much as possible: I know that I’ll need to sleep twelve plus hours to try and combat the fatigue, the hot water bottles are in regular use and I have emergency morphine for the worst days, when tramadol isn’t enough to ease pain levels. I try not to take anti-inflammatory medication because it can cause additional digestive problems, which is the last thing I currently need!

Remembering to take all my medication is becoming more of a struggle, as more and more medication is being added to the regime to try and keep my body functioning. I’m on regular pain relief, anti-sickness medication, medication to try and speed up digestion, vitamin and electrolyte supplements and medication to try and keep my mental health balanced. I don’t like being so reliant on medication but I know that the alternatives are much worse.

Over time, I have learnt that I need to be honest with myself and other people; it isn’t always evidently visible when I’m struggling due to the invisible nature of EDS. Some people aren’t going to understand, you can try and educate them, but if they aren’t willing to learn, that is a reflection on them, not you. You learn who your true friends are when you have chronic illnesses and they are the people who stick by you and don’t give up on you when you’re at your most unwell. Losing friends because of your health issues is a horrible experience, but the flip side is that you meet other people who similar conditions, who understand on a whole other level. I’m truly grateful for my spoonie friends, I can’t imagine doing life without them!

Whilst being unwell has resulted on me having to stop working and defer from college, it has also meant that I have so much time, allowing me to focus on writing and raising awareness.  Educating people on chronic and mental illnesses is something that I’m really passionate about, so in some ways, I’m grateful that I’m able to write about them and even more grateful that people are interested in what I have to say. And I can watch day time TV without any guilt about needing to do something more productive!

Staying positive can be so flipping tough at times. There are days when I want to stay in bed and cry about everything that I have to deal with, but deep down, I know that isn’t going to make me feel any better, if anything, I’ll feel worse. I’m not averse to having a good cry but I also try and focus on the fact that things could be so much worse (yep, cliched I know). For the most part, I have a fantastic support system, preventing me from spiralling out of control and I owe it to them to keep on swimming.

My biggest hope for the future is that EDS won’t be classed as a rare disease. That isn’t me saying that I want more people to be diagnosed with it because it is hell, but I want more people who be aware about it. I don’t want it to be such a medical mystery in the medical world. Things are slowly changing, there’s evidence that younger medical professionals are more EDS-aware and I hope that continues. In the mean time, these hooves will keep on running.

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