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!
I spend 99% of my time shut up in my room due to Dystonia. Throughout the months leading up to this summer I was concerned as to how my body was going to react as bright light triggers my eye spasms (I am unable to currently wear my sunglasses or glasses as it causes a facial spasm) and I have to be careful in the sunlight as my antibiotics for suspected Lyme Disease causes light sensitivity. I had been thinking for a while now that I was just going to have accept that I would be having to spend the whole of the summer indoors.
It turns out I need not have been so pessimistic. This week I have been out in the garden several times with my family, family friends and had two BBQ’s. I was overjoyed to be out socializing with our family friends. We made sure I was in the shade so that both my body and eyes were protected. It was perfect and I had such a great time.
This achievement has left me thrilled as it has reassured me that I can enjoy this summer and the summers to come without worry. I only have to be a bit careful and that’s not much of an issue. Being out in the warmth and socializing has really lifted my spirits and left me feeling overjoyed and calm.
I look forward to seeing what the rest of the summer has in store.
So it is getting to the time of year I love! The trees are turning beautiful colours, the air is getting cooler which always makes me start hoping for snow, and the shops start displaying amazing Christmas decorations. Just going out and about at this time of year puts a giant smile on my face. However my Dystonia alien has decided that he hates the cold! Every time we venture out into the cold, my Dystonia alien acts up, causing my right arm to spasm and shake violently.
I am therefore putting my foot down. The Dystonia alien may have control of the majority of my body but it shall not take control over my favourite time of year! I want to be able to go out in the snow! When out shopping today with my mum, we invested in some warm/fluffy mittens, and a lovely warm blanket to cover me up with when I am out in my wheelchair. My theory is if I wear loads of layers and cover myself up as much as possible then my body should hopefully not go into spasm.
It shall be another experiment, which hopefully turn out to be just as positive as the last.