The last six months have probably been some of the toughest I’ve experienced, certainly from a pain perspective.
When I found out in early 2023, that my two Covid infections had left me with POST COVID syndrome, I assumed that most of the answers to my health problems would suddenly become clear. However, not everything that I was experiencing could be explained by POST COVID syndrome and, at the time, researchers were still trying to understand what it meant to have the condition.
During the course of investigations with specialists in chronic pain and Covid infections, it was uncovered that I’ve had a lifelong condition called Ehlers-Danlos syndrome (EDS).
Having EDS finally means that much more of my health is understood, but learning to live with it has actually been more difficult. I now understand why my joints click, why my fingers dislocate, why my coccyx pops out of place EVERY morning, and why I experience skin infections and joint swelling on a regular basis (especially after periods of stress or anxiety).
But even though I have answers, and even though there is a wealth of information available to me online, coming to terms with having a genetic disorder that was likely passed on by my father (who was also highly symptomatic, but never discussed this health) has been difficult. Part of the process of accepting my diagnosis is understanding what happened, where it came from, and how I manage it. But with my parents now passed away and specialists still unlocking the relationship between Post Covid syndrome, EDS, autonomic dysfunction, and PoTs, there’s still a lot of gaps in my knowledge, and so the problems with my health continue.
For example, last Saturday something in my back clicked or snapped or twanged or something, and ever since I’ve had pain in my legs, middle back, shoulders and a headache that could make me cry. I’m already on the Lamborghini level of prescribed pain relief, so speaking to my GP, and waiting hours on the telephone to get through, doesn’t feel like a worthwhile use of their time or mine. Unfortunately that means I’m in a ‘grin and bear it’ situation and that limits the things I can do, even when it’s acceptable for me to just rest.
Back in the days when I worked, and I daydreamed about a day off, one of the first things I’d imagine is being curled up under a blanket and watching a crap movie. But when rest is prescribed, and you can’t find a position to lie in or sit in doesn’t provoke more pain, adding a movie to the equation is almost impossible. I like to keep busy, I enjoy learning, reading and obviously writing, but this blog post is being written by dictation software. I’m speaking, but the typing is being done for me and it’s all because of ongoing pain in my wrists and fingers. Frankly it doesn’t feel like I’m doing the job properly. It doesn’t feel like I’m even resting properly. In fact, since knowing that I have EDS, and since being told some of the precautions I have to take in order to keep my joints as safe as I can, it doesn’t feel like I’m even doing life properly.
Yes, pain is a pain in the arse, but add sleeplessness to the pile and eventually you start to feel miserable. With barely a couple of hours proper rest each night, the impact on my mental health has been growing day by day. I feel empty, miserable, and anhedonic (unable to find pleasure, even in things that I usually enjoy) almost every day. Obviously there are breaks in the misery and moments where I get to laugh or I feel like a good mum or I’m happy with something positive that’s happened. I guess it just feels imbalanced. More than anything I wish I had the answers that would help me tip the balance back.
Being afraid of my health conditions affecting me in public is part of the reason I’ve been indoors for nearly 3 years. I’d assumed this diagnosis would get me closer to the outside world again, but instead it feels like I’m even more stuck.
There is hope though. Here, in the south east, we have an EDS centre of excellence and I have an appointment (virtual) in the next few weeks. I have to believe that they can help, otherwise I’m not sure what’s left.
As always, I will keep you informed. Thanks for reading.
Creative Steph 