Originally posted 5 November 2020
Hey everyone. It’s been a year since I posted publicly for the first time about my journey with Complex Regional Pain Syndrome. That makes it 3 years since this all started for me. For those who don’t know, Complex Regional Pain Syndrome (CRPS) is a disorder that occurs when the nervous system and immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain.
Now it’s #Nervember again, and I thought I’d post again. It’s been a rollercoaster ride – in that there have been steep ups and downs and many twists and turns. The first year I just took everything that was prescribed, and tried to deal with the fallout. That was tough. The medication made my throat dry and sore, led me to suicidal thoughts, and one of them – a patch – left scarring all over my legs.
The second year I went cold turkey on some of those medications – that was tough too. I ended up in bed for around 3 weeks, unable to function, had a profound vitamin D deficiency, and was generally desperate for pain relief options that didn’t have side effects worse than the “cure”. I found a GP that was open minded and helped me through the worst times, with medications that were less invasive and kept the pain at a reasonable level.
That brings me to this year. This year has been tough for all of us. Covid has not made anything easier for anyone. I started the year fairly strong – taking almost entirely natural medicines, keeping the pain not quite at bay, but tolerable most days. Not so tolerable at night, but I’ve been lucky enough to be able to use sleep as a remedy. But, winter was so difficult, so much pain, really struggling to keep it together, coping with all the change that Covid brought, as well as a new job and various personal struggles. My family has been through a lot, their own things and also watching me going through my thing.
It’s reinforced for me that we could all be kinder, judge less, love more, hate less. I’m pretty sure that very few people know how low I’ve been at times, and that makes me think – how many people around me are going through bad times, and I just don’t know. I really try now to give everyone the benefit of the doubt in every circumstance – just in case they are invisibly struggling.
The last 3 months or so have been particularly challenging – no escape from the pain, and therefore no time for me to build up resilience for the bad times. I’m a member of a private CRPS group, and some of those people have seen me in pretty dire straits. They and my family have gotten me through these bad times. I decided to take some positive and concrete steps to change my situation, as far as that’s possible.
I tried to get back with a pain specialist (didn’t work, haven’t given up), changed to a vegetarian diet (anti-inflammatory, hopefully relieves burning pain at night) and tried an alternative therapy that I’m not ready to talk about in detail yet. I also built up the “happiest playlist on earth” and listen to it as much as possible.
If you’re still reading, well done! I wanted to end this by saying that I’ve taken strength from so many of you over the years and you don’t even know it. Lots of my FB friends support many causes, and even though I haven’t reached out to you, I’ve taken hope from the thought that I could reach out to you if I really needed to, and you would be there. I’ll leave it there for now. If anyone is triggered, concerned, made anxious by my post, I’m sorry, and please don’t be. I find it therapeutic to be open with everyone, but only once a year
And one last thing – I’m there for you too. Reach out if you’re struggling, don’t go it alone.