If you had sat opposite me and my friends on the bus yesterday chances are you would not have had a clue there was anything wrong with me. When I shuddered, and my friends asked in hushed tones if I was cold, you would not have paid a second thought to it. In reality that shudder was my body trying desperately to twitch but failing due to the injections, my friends whispered question was simply because they know that the cold aggravates my Dystonia. I currently walk around Oxford like a human marshmallow, swaddled in layers, with my gloves, hat and scarf on. My joints are already painful most days. I compensate for this though, my bedroom generally feels like a sauna.
Winter is coming. For many Dystonia, EDS and other spoonies winter impacts their chronic illness, causing spasms, pain flares etc. Managing your symptoms gets harder and if you’re anything like me and run head first at every challenge your condition presents, then you’ll find that with winter you’ll crash and flare more often. Symptom diaries are a fantastic tool to keep. Learning what you can do to keep on top of your health is the best approach you can take.
I know that in winter If I go out with no gloves and only one pair of socks, I am going to spend the day apologizing to all the people I pass in the street as I’ll accidentally hit them when I twitch. It’s humiliating, and avoidable if I just remember to wrap up. If my room gets to cold I know I shall spend the night in agony with my body spasming. Again this is avoidable. I may not be able to prevent every single spasm, but I can definitely prevent the worst of them by taking sensible measures.
So please all you amazing spoonie warriors, wrap up this winter and don’t put yourself at risk!