Officially, I’ve fought chronic pain for just over a decade. In my case, Ehlers-Danlos syndrome and fibromyalgia. And while this isn’t the time for an idle chat about what that scrap looks like, the effect of this fight on my life has been pretty intense.
To give you some idea, I spent four years unable to sit or stand. Naturally, my life fell apart in real-time during that period. These days, I am upright, which makes for a great start. But even last week, sitting and writing was too painful. It was even too uncomfortable to breathe, for goodness sake.
Of course, no one plans for their body to break down like this.
Chronic illness, like any other kind of affliction, isn’t the first thing we scribble down on our bucket lists. So, it’s hard to know what to do with it when it does arrive, like a dreaded relative who drops in for a never-ending house visit. You don’t even know how to refer to it with friends. You sense its presence reminds people of their own mortality, somehow. Underscoring their insignificance and the fact that none of us are in control.
Plus, well, it’s a little depressing. There are only so many times you can tell a friend that the latest treatment hasn’t worked. Or make light of the fact that things are getting worse. Before long, it’s a conversation neither of you wants to have.
‘Don’t keep giving me problems,’ I remember my beleaguered old boss once telling me. ‘Just give me solutions…’
Regarding the pain, there are many different ways to cope. Some treatment methods work better than others, and some work differently for others, too. Unfortunately, there is no magic cure. I’ll link to the best resources if anyone wants any more information. But I’m writing about my health today because of its recent effects on me. And how this situation might be about to change.
To put it simply, I’ve had no choice. For the last eighteen months, I’ve had to push myself into the red.
Thankfully, hope is on the horizon. After a few miscalibrations and false starts, it looks like I’ve found an experimental new medication that supplements what I already take.
It’s important to say that this new drug doesn’t remove the pain. But it does help me live with it better. And – crucially – it gives me an alternative way of coping. Because, let’s face it, you can’t keep taking opioids 24/7.
Naturally, such news is a real boost for me and my family. But we pray it also helps me do more as a writer because way too many days have been lost in recent months.
It’s early days, but my hope is this new medication helps me get ‘back to black’, so to speak. If it does, I’ll explain more and spread the word. No doubt, chronic pain will always be present in some form or another. But the early signs are I’ve got a new weapon to help me win some battles, if not the war. We live in hope.
If you suspect you have Ehlers-Danlos syndrome – or know anyone with it – then The Ehlers-Danlos Society is a great digital resource for official information. If you’re looking for tips, exercises, and a community to help with the condition, The Zebra Club is essential. You can learn more about fibromyalgia at www.fibroactive.co.uk.