On strength – My first year with fibromyalgia
This is the extended version of the message I posted on Instagram last Thursday. Read more on how I spent my last year dealing with a diagnosis of fibromyalgia.
The sixth of June was a very special day to me. A year ago that day I realised I wasn’t doing well; I was exhausted and nearly burnt out. I also had vague physical symptoms, ultimately rendering me completely immobile, not capable of anything but sit and stare. I couldn’t even speak… That was the most terrified I have ever been in my entire life. Needless to say I had to stop working.
After a couple of months at home, my energy did not return and my physical complaints got worse. What started as a nagging pain in my hip, started to appear in my entire body. I consulted a rheumatism specialist, since the symptoms sounded like something on that spectrum. After various misdiagnoses and pretty strong drugs, in the end I got a diagnosis that fitted. Turns out I have fibromyalgia; a chronic illness which causes pain and extreme fatigue.
Since there is no treatment, I basically went away with the message “good luck finding out what works for you”. Most of their tips were rather alternative. They had in common that I had to do it all by myself. Apart from these few tips, they explained very little about the part after you get a diagnosis. So I started searching the web. Bad idea. According to all the websites the outlook was grim.
I tried some things here and there, but soon realised that I couldn’t do this alone. It’s incredibly difficult to have discipline when even getting out of bed is a challenge. There was one option left; to go to a rehabilitation centre where they could help me get my strength back and learn to deal with the pain.
By now I was home for at least six months and the walls were closing in. I get a lot of my self worth and sense of belonging from my job, so mentally, things were pretty bad. I did see a psychiatrist from the first month I was at home. Our conversations helped getting peace with everything that happend, but he didn’t specialise in pain management. The weather started turning and the cold and rain brought more pain with them, so I wanted more support in that department.
Luckily I could start the rehabilitation programme pretty soon after my intake in November. That was the best decision I made in a long time. Slowly but surely, I got my energy back and began to come to terms with the pain. Why the hospital doesn’t advise you from the start to do this is a mystery to me.
Back to work
In March I started going back to work, which, while exciting, cost me a lot of energy. I realised that even though the programme finished, my own rehabilitation is far from over. But with the support of my colleagues and a very understanding employer, I could increase my workload pretty steadily.
A year has passed since that first moment of realisation and on the sixth of June I finished my first whole, full time, 36 hour, week of work. Yes, I am still in pain. And yes, I’m still tired all the time. But, I have never felt better all the same.
I am a different person, I’d go as far to say a better person, because now I can see what’s important in life. Words can’t describe how very grateful I am to everyone who supported me. I have not been through this alone and would never have gotten this far without all the support. ‘Thank you’ doesn’t cover it, so I hope I can repay the favour by being there when my friends and family need me most.
My journey is far from over, but neither is my life. I’m convinced that I can still live the life I want. There may be bumps and curves in the roads, but what fun is a straight line? I’m not used to saying it, but dang it; I’m proud of myself 💪🏻
Want to know more on fibromyalgia? Visit these sites: https://www.nhs.uk/conditions/fibromyalgia/