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MS and Summer: When The Living Isn’t Easy

Getty Images/Marcus Lindstrom

Summertime is not a breeze for those living with Uhthoff’s Phenomenon.

There’s a new sound in the air and it’s haunting me. It’s the buzz of lawnmowers, the sizzling of barbecues and the whoosh of tarpaulin covers being hauled from hibernating garden tables and chairs. In short, it’s the sound of summer.

The weather forecasters can barely contain their glee as they breathlessly announce that (for one day only!) our temperatures are hotter than Barcelona or Madrid.

Newspaper and magazine articles are urging me to unsheathe my winter legs and get them summer-ready – and why not fit in a pedicure while I’m at it? Carefully-curated selections of this season’s must-have summer dresses are everywhere.

No. Just no. Not all of us welcome the rising temperatures with open, sun-worshipping arms. Some of us, especially those of us who experience MS heat intolerance, embrace the colder months with a joy akin to having a whole box of chocolates to ourselves at Christmas without a worry about the weight gain.

Coping with Uhthoff’s Phenomenon

Heat intolerance, or ‘Uhthoff’s Phenomenon’ to give it it’s proper name, is the bane of my life. The first time I realised I had a serious problem was during a village fair. I was manning a stall, and slumping further and further down into my chair and passers-by cast me worried glances. It wasn’t until an honest friend dropped by and asked me why my face was beetroot-red. I stood up and immediately collapsed. It was weird. This was before my diagnosis, so I just put it down to the stress of having sold six hundred raffle tickets before noon.

Now I know better.

Last year we had an extended heatwave in the UK and it was dreadful. At work, a job which is more often than not outdoors, my boss became used to my ‘Red-Shade Scale’ and would send me off for regular cooling-down breaks. I bought a cool vest, a cool towel and iced tea by the bucket-load. At home I was unable to go outside to my garden until after 7pm because the heat was so intense.

The heat literally (and believe me, I do not use the word ‘literally’ lightly) made my entire body crumple from within. Remember those ‘magic’ fortune-telling fish you’d get in party bags as a kid, alongside the squashed birthday cake? You’d hold it in the palm of your hand and watched it curl up? (Didn’t you find that they always curled up?) ‘You will be happy and successful’ the note on the packet would say. Well, that’s what I’m like in the heat. Just not very happy nor successful unfortunately.

A Victorian vampire

In the summer, I am a lurker. At family get-togethers I lurk on the side-lines, my relatives automatically assigning me the seat in the dark corner of the patio, the place where the sun never shines and all the damp-loving ferns grow. They look at me with pity as they throw off their cardigans and settle in the sun. When the clouds inevitably roll over, I would be the last one left outside, soaking up the delicious coolness of the shadows.

I sometimes feel like a kill-joy, some sort of summer vampire. I turn down invitations, I cry off garden parties. I never wear a sundress. I’m as pale as a Victorian heroine, but without the alluring demeanour.

On a positive note

However, there are, believe it or not, upsides: I have fewer wrinkles than my solar-loving friends, which is always a bonus as I speed through my 40s. I never have to invest in a skin-baring summer wardrobe. My heating bills are quite low – even in winter.

This year, I am determined to fight summer at its own game. I’ve bought a humongous parasol for my outdoor table – this baddie will protect me from the sun no matter what, it’s that big. My car is now air-conditioned. I have two large fans for the house, plus, I will bravely give in and eat ice-cream without caring about carbs or calories.

So while I’m loving the longer evenings, there’s an underlying panic within that I’m trying hard to quell. If it all gets too much, I’ll remind myself that the Summer Equinox is in June…

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