It’s half past eight on a Saturday night and I’m in bed. Nothing wildly unusual in that. However, I came to bed at midday, and barring a brief return to the lounge, I’ve been here ever since.
Being quiet, alone and in the dark is exactly where I need to be right now as my body’s going through something of a crash.
I don’t seem to be able to manage much without a disproportionate reaction. And, as much as that payback is a symptom of ME/CFS, it’s really taken me aback how much the crash which began before Christmas is lasting for.
The other morning a short coffee with a friend finished me off for the day. Today, a stroll into town and breakfast with my fiancé then led to my legs beginning to wobble under me on the short walk home, followed by a sense of complete exhaustion as I slumped onto the sofa.
This past couple of weeks the pain which accompanies the suite of symptoms has dialled up and feels like a shape-shifter moving from one part of my body to another.
No painkillers are even touching it so I gave in and saw the doctor. I now understand why those painkillers aren’t working. This is neuropathic pain because my brain is sending out the wrong signals. It explains why light touches feel like agony. When the doctor was pressing a cotton wool ball on my arm it felt like a needle shooting into me. I’ve been given some medication to dial down this misfiring pain-gating response – I’ll let you know how it goes.
Why am I writing this?
Well as I’m blogging from time to time it seemed relevant enough to share with you. But, primarily, it’s to share with you how useful I’ve found going over my old posts to read the advice I’d previously dispensed for the benefit of others.
It’s reminded me that I need to regularly ‘check in’ with that stuff as it’s easy to forget. While good intentions are one thing, turning them into instinctive habits is quite another.
Not worrying. Banishing guilty thoughts. Truly resting. Finding simple ways to relax. Breathing in the day around me. Remembering I’m not ‘old me’ and that attempting to live like I used to is not only counterproductive, it is also simply not possible.
So here we are. Me laid on the bed in the dark, typing this on my iPhone. And apologies for any typos!
If you’re struggling with fatigue and pain and brain fog and blurry vision and generally feel wiped out and a bit fed up of it all… you have my sympathy. Cut yourself some slack. Give yourself a break. Stop what you’re doing. And on that note, that’s exactly what I’m going to do.