One thing I have noticed over the years is that as someone with Cerebral Palsy, I don’t do well in heat. And I suffer in cold.
My type of Cerebral Palsy is know as Right Hemiplegia. This means that my right side is affected and is prone to ache at random times in my life for unknown periods of time (I’ve had pain for three weeks at the time I am writing this post). However, it differs on the temperature front too.
This post is my experience with the changing temperatures with the seasons. Something I have not really seen talk about much in terms of disability.
Along with seasons, I would like to talk about my experience with temperature testing. Like you would do for a bath.
My CP and The Season
I’m quite lucky in one respect. I’m european, not only that, I live in the UK. This means that we don’t usually have extremes of weather (despite popular misconception and the last month or so). When we do get them, they are probably years in between.
If you asked me which season is worse I wouldn’t be able to tell you. They both affect me in different ways. Though, despite all the pain, I think I would rather have the effects of winter than summer.
The hot summer season just stops me. I’m not in pain, unlike winter, I am just very very tired. I feel sticky and yucky and I cannot move. The second I go outside and the temperatures are reaching for the mid 20 centigrade, I am already looking for somewhere to sit down. Immediately, I need a drink.
I know other people feel the intensity of the heat too but I doubt that they need a drink within seconds. That, I promise you is what it is like for me. I also cannot travel further than a few yards in this heat and it takes me a lot longer to do so—and I am not a fast walker as it is.
I also noticed that I am one of these people that get very crabby in the heat rather than when it is cold. So, I think if I was able bodied, I probably would have always hated the heat of summer and maybe the heat of the summer affects my left more than the right because the left has to carry the extra weight of my right side, it always does this but when the temperature is high, I can imagine this being more exhausting.
I went to Bakewell with dad and I enjoyed the day but there was a point I got so hot I started getting a bit grumpy. The museum we went to The Old House Museum only had water but I took it (I don’t really drink water – I was just desperate enough to drink half a bottle in one gulp).
Despite the heat, I enjoyed the day. The Old House Museum was lovely, a small Tudor house that was still being used up until the 20th century I think. Some lovely displays. And I had my very first Bakewell pudding! it was delicious. We bought some more and took it home with us – so pudding is sorted – though it will have been long gone once this post is published.
The winter affects me more with pain than it does in other ways. I mean, yes I hate the snow! My lack of balance control means that when it does snow I am more than likely going to fall on my bum than walk the 10 yards to the car before falling over. But for me, the biggest problem with the winter is the temperature.
The brittle cold affects my joints, makes them painful. My right arm will ache, my right leg will ache, I will struggle to get up in the morning just because of the sheer pain of my joints. I’ll need to have more baths around this season and would need to use my microwavable heat pads—a water bottle is great too if I have someone around that can help me fill it up.
In this season, I rarely go out because of the weather. Terrified it will snow, in too much pain to really do anything. So normally, I stay indoors until spring approaches or until I have to go out to get to class or buy my food.
But even though I hate how much the hot weather makes me grumpy. I also hate winter.
Please, just give me autumn and spring… please!
They are the only seasons that feel are safe in terms of my disability because they are not too hot and not too cold. But they seem shorter than the other seasons.
So my rest from pain is quickly replaced by a crabby me who is trying my best to not sit down every 2 minutes. Then my rest from the heat is shortly replaced by pain.
So, when thinking about this, I found it really interesting. I have one half of the body who hates winter and the other half that hates summer… no wonder autumn and spring are my favourites.
As I said earlier, baths help me with the pain of winter (along with walking too much or any joint pain I may get at random) but it is very hard for me to judge the temperature of a bath by myself. Usually, if I need a bath, my dad will test the temperature for me and let me know when it is safe to get into it.
This is because if I ran the bath by myself, I would have one side telling me that it is too cold and the other telling me it is too hot. Usually, I listen to my right side because my left can adjust better but this could lead to accidental scolding. Not a nice thought.
It’s the same with anything that has some sort of temperature related to it. I have to be careful and mindful of my right side as it will not know how to react with something that is not room temperature.
Over the last few weeks, because the UK has had some extreme weather this year, my right side has been confused as to whether to act as if it is winter and cause me great pain or act as if it is summer and make me tired. So it has decided to do both. Thankfully, autumn approaches and the weather is stabilising a bit, so the pain will stop for awhile, at least until late October.
I don’t know what people will make of it. I just thought it was interesting that not only am I battling a world made for the abled, but am battling two halves of my body as they fight for what they think is the best temperature and act differently to each season. I hope you enjoyed this post.
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