Tag Archives: Uhthoff’s phenomenon

The One Where MS Becomes Normal

memoryI was feeling very smug the other day in work.

We’re currently on an outside project and the sun was blazing.

I could feel myself getting hotter and hotter as the day went on, so I disappeared at carefully-staggered intervals into the shade and called my mum for a random chat or scrolled through Twitter or simply watched the sheep stroll past (It’s Wales, we were up a mountain).

Anyway, as we were wrapping up, I remarked, ‘Oi, boss, see! I’m not as red as I usually am! Result, eh?’

He glanced my way, burst out laughing and told me to look in a mirror. I did. Oh. Bright red, round face. But! I wasn’t lying stunned on the grass, flapping my arms like a hot-weather snow angel, felled by Herr Uhthoff, Master of Heat Intolerance. I was being proactive and mature (for once), taking time out to cool down before I collapsed in a soggy heap.

This made me think. Have a I finally grown up with regards to MS? Or am I just fed up shaking my fist at it, daring it to strike me down? Perhaps I am, and MS has fully integrated itself into my life, like some kind of tapeworm, but without the added advantage of rapid weight loss.

I decided to clock just how much I now regard as normal:

  • Tripping over the bath mat every single day. Also, doorstep, dustballs and the kitten.
  • Having to hold a cup of coffee with two hands and will myself to keep hold of it.
  • Dozing off at the good bit during telly programmes and dropping my bag of chocolate buttons.
  • Mixing up my words and making people laugh, when sometimes, I’m actually telling them something quite sad.
  • Forgetting simple words and using a lot of Italian gestures to make up the shortfall (quite a natty effect, I think).
  • Fumbling with buttons and zips (my own, tsk).

I’m also applying my new-found maturity to my studies. Before, I could sit for hours thinking about different ways to say the same thing in essays. Well. I now have a handy list. For example, if I want to give an example, I could say:

  • as an illustration
  • to demonstrate
  • specifically
  • for instance

Which means my essays are now full of lots of examples, but I need to find lots of examples to use the example phrases. Confused? Me too.

Anyway, it may have taken almost four years, but I think I’m now at the stage, largely through repetition, where what was once odd and disconcerting is now, well, normal life for me. I struggle to forget what life was like B4MS, not helped by my goldfish memory.

Did I tell you what happened in work the other day?

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Stumbling Back to Happiness

If you stumbleAfter almost three years of MS-and-self-imposed exile, I am slowly but surely reintroducing myself to polite society.

My cunning strategies seem to be working. Often it’s the small(ish) things.

Such as, I hate the heat and it hates me back with a blazing passion.

Now though, rather than worrying about my tomato face, I plan a set time outside, give myself one last blast of the air-con and pop on the sunglasses.

I can often be found lingering at the chest freezers in Iceland and worry they’ll ban me soon as I only ever buy eggs.

Who cares if I’m bright red? I’m out, it’s enough. And when my legs start to buckle I know it’s time to grab a Slush Puppie and head back to the car, mission accomplished. When I’m in work, the boss agrees to go easy on me as long as he can still laugh when I stumble. Who cares? We’re good friends going back years and I don’t want anyone to tip-toe around me (wish I could do that without losing my balance and falling over – sigh).

As regular readers are aware, I’ve also signed up with a personal trainer. Who’d have thought it even a few months ago? My Nike joggy bottoms didn’t arrive in time for my first session, but who cared that I turned up in jeans and an Andy Warhol t-shirt? Certainly not the trainer who still made me learn how to execute a perfect squat, which was surprisingly difficult. Ceiling to floor length mirrors didn’t make the job any easier. But I did it. And I’m going back next week.

Only problem is, I got a little bit carried away afterwards. The Teenager came home from school to find me saying, ‘hey, look, look at this! (squat) look what I can do! (squat)’ Naturally he was less than impressed and retreated backwards to his bedroom, on his phone, no doubt tweeting my sorry plight to his mates. I paid for it the next day though, barely being able to walk down the stairs. Pesky muscles screaming in shock at being used for the first time in years.

Anyway, I finally knew that I was officially ‘back’ on Saturday. I’d arranged to meet a good friend for dinner, meeting first at his place. Great. Did my hair, got dressed, fed the cat and left. I knocked on his door:

Him: Huh?

Me: Dinner? Arranged the other day? My kid’s away, your kids are away?

Him: (spluttering and looking back longingly at his Lord of The Rings dvd on pause) But, honestly, I really didn’t think you’d turn up. You’re always so tired. Was expecting a text from you to say you couldn’t come. As usual. You okay?

Me: I’m good. I’m great! I’ll wait, you get ready. Got any chocolate in the fridge?

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Flip Flop Flap

vampireVampire season is upon us once more.

We have a mini-heatwave. I have been following the weather forecasts avidly, inwardly rejoicing when I heard there will be showers next week (I live in Wales; by law it must rain at least every few days).

I’m not a kill-joy. I am sooo happy to see people trundling up to Asda’s and back again, cars stocked full of barbecue supplies.

I like to see everyone decked out in summer prints and of course, it’s always a delight to see a whole bunch of men ill-advisedly walking around topless. Eww.

I’ve been invited to a family do tomorrow. They’re well used to me by now – my mum called and said, ‘don’t worry dear, we’ll put you in that dark corner with the parasol over you’. I’ll just shout across the garden when I need more ice cubes to chuck down my t-shirt and let the kids run around squirting me with their water pistols.

I must sound really grumbly. I love the sun, I really do. At a distance. Through the window. Sadly, The Teenager has whipped my large floor fan upstairs as apparently he can’t study without it. Although he seems to study perfectly well at the same time as chatting to his friends on Skype in his impenetrable, grunty language. He’s also recently ‘discovered’ Duran Duran and my house now sounds like an Old Skool Disco.

Anyway, I’m not complaining. Even though I don’t wear flip flops any more – foot drop is a nightmare with them on and it’s not inconceivable that I could catch the front of them, flinging myself forward, face-down on to the nearest available pavement. I have bought some floaty tops and sunglasses. I will hopefully be rocking the chic Continental look; slightly bored and above these childish solar delights.

The good news is, there is the consolation that with MS heat intolerance, it is imperative to self-prescribe ice cream. Emergency Medication. Plus there is the added bonus of having a blast of lovely icy air whenever I open the freezer to admire my range of Ben & Jerry’s.

So this weekend, I will be lurking in dark corners, vampire-esquely. Except I won’t have a lovely pale vampire face. I’ll be the one shining like a bright red beacon, gripping a tub of Phish Food….

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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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The Return of The Angry Red Tomato-Face

angry red tomato faceMen in loud-patterned shorts and flip-flops are everywhere, I have a stack of special offer leaflets from supermarkets urging me to stock up on barbecue ingredients and the weather forecasters can barely contain their excitement.

We are having a spell of warm, sunny weather and I am not best pleased. In fact, I am downright grumpy. Two years ago I enjoyed the warm weather as much as anyone, but one day that all changed as my face morphed into an angry red blur, my limbs went weak and I felt faint with fatigue. Since then Uhthoff’s phenomenon, otherwise known as heat intolerance, has made my life a misery.

A tiny spot of sun will add a youthful, flushed glow to my face. Any more than that and I begin to scare small children. I often wish I was born 100 years ago so I could carry a parasol when outdoors and recline on a chaise-lounge, delicately fluttering a fan  and sipping peppermint tea when the heat gets too much. And a bonnet would be ideal for bad hair days.

It’s not just weather that does this – hot radiators in the winter, ‘atmospheric’ log fires in gastropubs and over-heated shops all take their toll. Opening the oven door is a tricky operation. Do it too quickly and I’ve got to lie down for five minutes, pizza sadly forgotten.

I fondly remember giving myself home-made facials by adding lavender to a bowl of boiling water and steaming my face over it. Nowadays that would probably be the best way to make me give up my PIN numbers and passwords.

I am now a semi-vampire, hiding in the house as much as I can and my super-size fan is my new best friend. I have become an expert at judging where any breeze is coming from. I rearrange chairs in cafes when a blast of sun comes through the window.

So this bank holiday weekend, I will mostly be at home. I will not be going to a barbecue – it’s insanity to cook in the heat. I will not be going to the beach. I will not be sitting outside a pub.  I will instead smile through gritted teeth when yet another person says, ‘oooh, lovely weather we’re having!’ Isn’t it just…

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