I know I’m not the only one who struggles during the hot and humid months of Spring going into Summer.  How many of my fellow Spoonies have a hard time when the weather seems to just suck out all your energy and make your conditions worse?

When I was 6 months old started having convulsions, the first one being in a car journey from the South East of England to the Highlands of Scotland.  Thankfully we had just driven past Edinburgh Royal Infirmary so rather than spending a week in my family’s new time share, my Grandpa turned the car around and headed to the hospital instead.  I had countless tests to find out what was going on: a brain scan, 2 lumbar punctures and goodness knows what else and the conclusion was that my body was utterly crap at regulating my temperature.  Whenever I got too hot, i would start fitting because my body couldn’t cope.  I grew out of the fitting, but I still struggle to regulate my body temperature now at the age of nearly 40.

Now, I know that problems regulating body temperature is something that can and does effect those of us with Fibromyalgia, but I’m not sure how much of what i struggle with is Fibro and how much is a throwback to my childhood.  What I do know is that I run at a constant temperature that feels like the heat of a thousand suns.  It’s why I adore the Late Autumn and all the Winter months – I seldom overheat and if I do, all i have to do is open a window and take off my jumper.

The Summer however, is a very different story altogether.

Once the temperature reaches around 20 celsius, I’m in trouble. I will then spend the next 6 months being overheated and miserable, watching from an air-conditioned room whilst everyone else is outside in the sun having a grand old-time.  I often get called a killjoy during the summer months and I suppose they’d be right to an extent.  I can’t get enthused about the Summer when I feel like I’m about to either faint or start having a fit.  The heat also makes my Fibromyalgia MUCH worse and I can literally feel my energy draining away every second.  My limbs feel like lead, my brain fuzzy and I struggle to stay awake at certain points during the day.  I have to work twice as hard as everyone else to concentrate, I sweat non-stop and the only thing I can think about is getting home, filling up my bath with cold water and ice and then sitting in it for the rest of the night.  I can’t sleep, my appetite all but disappears and my depression spikes. Add to all that really bad hayfever and COPD that I struggle to cope with in the humidity and you can probably picture how low I feel.  It’s essentially the complete opposite of literally everyone else.  The way you feel during the Winter, depressed, sluggish and sad?  That’s how I feel during the Summer.  It fucking sucks.

So I would just like to politely say to those who make fun of me and my hatred of Summer: there are some of us who truly suffer in the heat.  We’re not being miserable just to be different or because we don’t want to ‘join in’, we would absolutely LOVE to enjoy the Summer as much as you do, we really would.  And we do try to enjoy it, but for some of us it can literally mean either staying indoors or a stay in hospital.

Please don’t judge those of us who seem miserable during the Summer.  We’re simply trying to live as ‘normal’ a life as we can without putting our health at risk.