Ehlers-Danlos Syndrome Awareness Month – My EDS Story

 

EDS awareness

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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