For the first 5-6 years of my MS “journey” (I hate that word, it’s such a millennial thing to say) I was completely unaffected by the weather. In fact, I found foreign holidays in warm climates helpful in many ways. That all changed when I started Ocrevus, a third line DMT which was sold to me as the holy grail of treatment… what a crock of shit that was. Anyway, almost immediately I became intolerant of high temperatures and when I say “high” it’s nothing really, just anything north of about 24°C. So actually just “warm” and if humidity is involved then I’m fucked.

Finally, after about eight months of solid rain, the UK has actually seen summer arrive! And while I have been rooting for it just like every other person in the UK, it has brought with it the expected results. I am even more useless than usual 🙄 For me personally I get slower, everything feels heavier, fatigue is off the scale, numbness in my hands gets worse and it’s generally just a joyful time! I’m also one of the lucky ones that is affected equally badly by the cold, but that’s not an issue right now so we forget about that until about November!

To an extent, everybody is affected by high temperatures, no matter whether they are affected by a chronic illness or not. The human nervous system requires an optimal temperature to function at its best. Temperatures can only vary by around 0.5°C without detrimental effect. I’m sure you’ve probably noticed that when it’s particularly hot or humid (or both) that you feel more sluggish, everything feels a little bit more of an effort and that is because the messages travelling through your nervous system are slowed down by heavy, high temperatures. For a person with MS, this is kind of a double whammy because our nerves are already damaged.

Keeping cool is number one priority during the summer and unfortunately for me that means staying inside. The complete opposite of what I want to do when I look outside and they see a beautiful sunny day. What I want to do is sit in a beer garden with a lovely cold pint and enjoy the weather. But no such fucking luck. Thankfully, I have a dog who also cannot go outside when it’s hot and we all know misery loves company! Everyone in the UK knows that we have a different kind of heat in the summer to the rest of Europe, or the rest of the world, our heat is sweaty, sticky and horrid so we always have humidity to go with our sunny days. Oh goody. So my days at the moment consist of sitting indoors with the blinds closed and all the windows and doors open, drinking cold drinks and doing not a lot of any physical activity. Not exactly the most interesting of days. The evening time as the temp tends to drop is the most pleasant, and I can actually go outside and stop pretending to be a bloody vampire!

Around 60 to 80% of people with MS suffer with heat sensitivity. There are lots  of things you can buy (of course) cooling bandannas and wristbands, even cooling vests but they are very bulky, we have an air-conditioning unit but with the price of electricity I tend to avoid it if I can as it’s pretty juicy!! If I get desperate, I can always sit in the car with the Aircon on 🤣 For now I’ll stick to cold drinks, ice creams (bollocks to the calories for the time being) and sitting in the dark!