Getting lukewarm

At the beginning of June, I was enjoying basking in the garden like an overgrown cat.

I’m still enjoying it but as the summer heats up I am having to manage Uhthoff’s Phenomenon, something common to many people with multiple sclerosis where a rise in body temperature leads to a worsening in symptoms. For a long time, immersion in a hot bath was a diagnostic tool – if the symptom of optic neuritis was worsened by doing this it was considered an indication of MS.

I don’t have optic neuritis, but my other symptoms are worsened by heat. I’ve long found that I needed a lie down after having a bath (and I like my baths hot, despite the effect it has on me). After exercise, or even a moderate walk, my limbs go rubbery and out of control. The plus side is that after about 20 minutes rest and cooling down my symptoms improve to their normal level, but not when the weather is warm.

This all seems a bit unfair when my preferred ambient temperature is one of a sauna, something I think I’ve inherited from my Bermudian mum. It obviously would have been better to get the cold resistance gene from my Northern Irish dad, but I seem not to have the constitution for cold. In fact both extremes of temperature make my MS hard to manage, I seem to have difficulty maintaining a normal temperature when it’s cold, meaning I shiver abnormally violently when the climate is normal for a British October and my limbs get painfully stiff.

I’ve learned I need to ensure that I constantly hover around ‘lukewarm’, and avoid the extremes of the thermometer. There are cooling scarves and vests to wear, but I’m afraid that they will make me too cold. Instead I’ve taken to keeping a bottle of cool (not too cold) water with me, and sipping it to try and ward off the worst of the heat. Going into work early when it hasn’t warmed up too much is also helpful, and means I can leave a bit early and avoid the main rush hour (when the crush of people seems to push the temperatures on the tube up even more). And going against my usual Grandma-like tendency to always wear my coat when going out ‘just in case’ and wearing less layers than I normally would helps greatly.

In doing all of that, I am still going to allow myself to feel the warmth of summer and enjoy it even if it makes me feel tired and wobbly. After all it’s only likely to last another couple of months, and the 8 or so months a year when it’s mainly grey and depressing are so much worse to me. Basking seems like a good idea while I can!

Photo by rawpixel.com from Pexels

2 thoughts on “Getting lukewarm”

  1. Wow, I’ve just read some of your blog and it’s so inspiring that you made me cry. Thankyou so much.

    I was diagnosed with PROGRESSIVE MS in 2018 and it took me 9 months to accept it. I am doing the the 10k walk for MS in London on 22nd September and your blog has inspired me so thankyou

    Aaron sloper.

    Like

    1. Hi Aaron,

      Thank you so much for your kind comments, I’m really happy that you found my blog inspiring! (Though not that you cried!)

      Rachel

      Like

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