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!
When I received my miracle unconditional offer from Oxford Brookes this year my mother and I ended up have numerous discussions on how I would manage on my own at uni. These talks mainly focused around the idea of having carers, 3 or 4 times a week, to help me with basic household tasks that some days are just too much for me to manage. At the time I was insistent on doings myself and put my foot down. I was determined to be an independent, strong, young woman who could manage all aspects of life without any help. Numerous other adults alongside my mother, pointed out that my mum would be right, university would be a reality shock, not only with an increase in work load but also with a huge increase in social life.
Needless to say I listened to what everyone had to say, I took it on board, and promptly carried on with my own plans. Not only did I want to be independent but I was also worried about the judgement I may face from my peers at needing care. My bedroom is rather large, which is great for days when I rely on my wheelchair, but I can easily overdo it by cleaning without realising it. I tried for two weeks before I resorted to carers. Giving in and saying “Yes, I need help!” was honestly the best decision I have made since being here. My fears of being judged and avoided like the plague where unfounded. There have been no drawbacks, just pure relief. I have more time and energy to put towards tasks that need doing for uni without having to worry about little things like hoovering.
My next task to tackle is pacing. For 3 years I have listened to my neurologist tell me to pace my life and stress the importance of it; and for three years I have simply nodded my head and carried on charging on. I have always been focused on the next achievement. It’s not taken me long to realise that tactic will not work for me here. Running on full steam will leave me having a flare-up frequently, which I simply cannot afford to be doing. It’s time to get my act together and learn the mysterious art of pacing…
Today was the first time I have had to give in and use my wheelchair at uni. I had anticipated that today would be harder than usual as I had traveled to London yesterday for my routine injections. My body always reacts badly to them for the first 24 to 48 hours, normally this leaves me in a lot of a pain and with an increase in spasms, which with a mix of painkillers and muscle relaxants I can manage. I therefore had not expected to fall over when getting out of bed this morning. My back and neck had gone into a hideous spasm and my brain had functionally paralysed both legs and my left arm. I spent half an hour lying on the floor like this, debating what to do. I gave myself an hour in which if I managed to get dressed I would venture to uni in my wheelchair and braces, and if I was still on the floor I would ring the Wardens.
I felt extremely proud of myself that it only took half an hour to get dressed this morning despite my brain fighting me, this must be a new personal best. I admit that as I braced the majority of my body I was extremely nervous. My peers are aware that I am ill, but they have never seen me like this, I had no idea how they or my lecturers would react. Within minutes of being in uni my nerves were swept away. Not only did no-one bat an eyelid, but people helped me when I needed it without me even asking.
Part of me had strongly wanted to not go in to uni today. I was worried of what others would think, and how I would physically cope, I had already had several draining days and was concerned that this on top would be too much. I am extremely glad that I took the leap, and forced myself to go. It will help keep my mind at rest the next time my brain decides that a day of alternating between spasms and paralysis would be fun.