Tag Archives: sun

Jul 20 2013
10 Comments
Symptoms and Treatment

It’s Sunny, So What?

ice creamThe weather forecaster on telly, wearing a short-sleeved shirt and stupid grin, could barely contain his excitement. ‘You’ll be pleased to hear this lovely sunshine will be continuing right into next week, folks, so get those barbecues fired up!’

I chucked another toffee wrapper at the screen and shifted the bag of frozen peas perched precariously on my head.

Then the forecaster turned on his sad face and sighed, ‘but it’s not all fun in the sun (dramatic pause), children, elderly people and those with chronic illnesses, take extra care!’ It feels strange to be in that category now, a bit like when you move up a section on the ‘tick your age bracket’ question on forms.

The country’s gone mad. I pass the time of day peering through my window, counting all the men who really should know better than to parade their naked, tattooed bellies to an unsuspecting public. Newspapers eagerly tell us we’re hotter than Spain, France, Morocco. Shops have been stripped bare of ice lollies, burger buns and cider. £5 paddling pools are changing hands for £50 on Ebay.

Which is all well and good, but we just don’t do hot weather in this country. Same as we don’t do snow. Our European cousins would frown upon our fondness for frolicking around in garish ‘summer clothes’, gnarled feet shoved into plastic flip-flops, downing lager like there’s no tomorrow. They’re the ones who coolly sip an espresso in a shady cafe, clad in perfectly coordinated outfits, chic neck-scarf tied in the way only Europeans can manage.

Frankly, us Brits embarrass ourselves. So, I am going to turn MS heat intolerance to my advantage. I will cultivate a Euro-chic demeanor. I will re-name my afternoon MS fatigue sleep a siesta. I will stay out of the midday sun and embrace my Celtic paleness. If I venture out at night for a drink , I will walk primly past the sunburned  sun-worshipers. I won’t be hosting a barbecue, but will instead sit in an dark, arty bar talking about arty things and existentialism.

So all you MS peeps with heat intolerance, join me in my one-woman mission. If I can just get that knot right on my neck-scarf, I’ll be right with you.

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Jun 10 2013
29 Comments
Symptoms and Treatment

The Venerable Order of the Uhthoff Vampires

vampire teethUhthoff’s Phenomenon (try saying that without sounding like a muppet singing ‘Mahna Mahna’) is a serious problem for lots of us with MS, where heat can worsen our neurological symptoms.

I am therefore establishing ‘The Venerable Order of the Uhthoff Vampires’ and anyone who’s familiar with the following scenarios is cordially invited to claim free membership:

  • When that big shiny yellow thing in the sky appears, you shake a fist at it before slinking back into the shadows.
  • You have bought (and discarded) numerous hand-held fans but feel a bit daft using one in public.
  • When a friend suggests a bit of sun-bathing at the beach, you’re sorely tempted to whack them over the head with their flip-flops.
  • The very thought of having a sauna is torture and you’d rather pull out your eyelashes one by one.
  • You quite fancy a nice holiday in Iceland or the Antarctic.
  • You’re idea of bliss is to open your freezer and stick your head inside.

For the uninitiated, heat intolerance is like pouring hot oil over already-damaged brain circuits. MS means your nerves don’t fire messages properly, but with a bit of luck, they’ll eventually get through. Add a dose of heat on top of this and you get serious meltdown. My body collapses in on itself, my struggling brain shuts up shop and I go a peculiar shade of pillar-box red.

In the summer, my days are topsy-turvey. I get up around 5 am and stumble around doing as much as possible before the dreaded sun starts shining. Then I lurk at home, fan at full blast until early evening when I suddenly come alive again. Or not, if MS fatigue decides to join forces with Evil Uhthoff and create a lethal combination.

I spend hours peering through my windows watching carefree sun-worshippers stroll past, taunting me with their tans, their bright summer clothes and languid chatter. When people visit my tiny haven of a backyard, they admire the plants and hand-made pottery toadstools then remark, ‘shame you don’t get much sunlight here though.’ Um, exactly?’

So join me in the shadows. Don’t lurk alone. Vampires are bang on-trend. Just look at Edward Cullen and his Twilight buddies (I do, a lot, much to The Teenager’s eternal embarrassment).

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