Post covid has been a nightmare for so many of us and in a variety of ways, with the severity of problems altering wildly from person to person Since I was diagnosed 6 months ago, my health nightmare has continued to unravel right up to last week, when I received a new diagnosis that I’d been previously brushing under the carpet.
Ehlers Danlos Syndrome (Hypermobile Type) is thought to affect as a many as one in every 5000 people and is described as a group of rare inherited conditions that affect the connective tissue. Now, while the symptoms vary from person to person, covid has had an effect on them for most who live with it. Saying that, the relationship between the two isn’t one of traditional cause and effect, in my case it was a mild condition that was made far worse by covid infection, which is what’s finally lead to my recent diagnosis. Until then I had no idea I was living with EDS.
Those with EDS often suffer multiple joint dislocations and sublimations in their lifetime as well as pain, stiffness, fatigue, thin velvety skin, infections, insomnia, and are often thought as being ‘double jointed’.
Until recently my symptoms were relatively mild. I was never a daredevil kid, I didn’t take risks that might cause dislocations or broken bones. However, my wrists, knees and ankles have always been problematic, i click like a typewriter whenever I move and I’ve torn muscles (especially in my running days) more times than I can remember. I’ve had stretch marks since I was 12 or 13, I’ve been labelled ‘double jointed’ as long as I can remember, my skin has always been incredibly stretchy and I have some awesome party tricks I can do with my hands! These days I tire easily, my skin gets infected and painful around my scar tissue and my joints, legs, arms and hands hurt within minutes of using them.
And it’s the latter comment I’m concerned with here. EDS is the root cause of my fatigue when I put pen to paper or type up my latest poem or story. I’d always brushed this pain off as being part of my general fatigue, but 2 short written paragraphs shouldn’t leave you stiff for the rest of the day. With EDS it does. Drawing for half an hour shouldn’t leave my fingers painfully sore. With EDS it does. Drafting a new idea in my notebook shouldn’t make my fingers burn after a few minutes. With EDS it does.
The impact of pain and fatigue on trying to be creative is genuinely huge, and I wish I’d looked into the problem closely sooner. If I’d known more it’s possible I’d have managed this downward spiral better and been able to continue my practice carefully instead of giving up after every 5 minutes and only coming back when the screaming stops.
I’m still learning about EDS, and there’s so much to it, but the way it affects me is (luckily) less severe than many others. The unfortunate problem that’s unique to my situation is how reliant I am on the joints that are effected. I’m lucky I can rest my legs most of the time, so my knee and hip based joint pain is minimal. However, as I write this now I’m reminded that just to create a post or draw a picture I have to suffer, and eventually find the point where I must give up. These are the only enjoyable elements of my life – I don’t go out, I don’t chat to mates, I don’t enjoy holidays, I don’t have shopping trips – these pastimes I used to enjoy aren’t part of my life now. So, I’m sure you can imagine, it’s frustrating as hell that my few remaining hobbies are being robbed from me because I can’t type or draw or text for more than 5 minutes.
This post has been revisited 6 times so far. A couple of years ago I’d have banged it out in one go, which makes me feel pathetic and kinda old.
If you think EDS might be effecting you, there are plenty of places to go to get help. First, obviously, speak to your GP for some proper advice and possibly a referral to the correct NHS department (usually rheumatology). EDS support U.K. have local leaders who are available to message through their website. I can tell you first hand that they seem to be really friendly, helpful and knowledgeable and their advice and support will be far better than anything I can write. You’ll find them here https://www.ehlers-danlos.org/. The Ehlers Danlos Society are very similar, offering support and advice online too. You can find them here https://www.ehlers-danlos.com/
EDS is a genetic disease, so you’ll be more likely to have it if one or both of your parents do too. If you’re curious, then a conversation with them might offer some answers (or possibly more questions!).
I can say from personal experience that the most important way of managing EDS when you’re still at the early stages of knowing what you’re dealing with is rest and safety. Don’t over do it because it’ll badger you more and more as time passes.
Get support, speak to your GP, ask questions, contact a supportive charity. All these things should provide some answers and help you keep doing the things you love safely.
Thanks for reading 
Creative Steph 