Tag Archives: heat intolerance

Why Is MS So Difficult To Describe?

MS CartoonAs if going through the MS diagnostic process isn’t difficult enough, trying to describe MS symptoms to the uninitiated is even harder.

Take the MS hug. Cute name, excruciatingly painful. The first time this happened to me, I was in the office.

The pain came out of the blue, and as I held my ribs in breathless agony, my colleague politely asked why I was rocking in my chair, making funny gasping noises. After I’d told her it felt like a boa constrictor had wrapped itself round my body, she gave me a curious look and continued typing.

Or the exotically named L’hermitte’s sign. Electric shocks in the neck? Maybe it’s all in my head. Uhthoff’s Phenomenon? Try explaining the torture of frying from the inside out, the complete inability to do anything in the heat. The sadness as you watch the world go by from your window, life happening elsewhere, make-up sliding slowly southwards. Or the tragic look I got from my son the other day when he came home from school to find me with a bag of frozen peas balanced on my head.

Tell anyone else you’re heat intolerant (and it’s even got a fancy name) and you’ll get a barrage of ‘Oooooh, me too! Can’t stand the heat!’ I bore myself silly trying to make them understand it’s not just a case of sitting in the shade with a sunhat on, sipping an icy-cold Pimm’s. It keeps you locked in the house, limbs trembling, industrial-sized fan on full blast. With our current heatwave, even my head is trembling so much I look like a nodding dog. Or a weeble-wobble.

What about neuropathic pain? The constant buzzing, tingling, throbbing, burning in my feet and legs. It’s like having mobile phones strapped to my feet, set to vibrate, with a bit of pincushion-y pain mixed in. Or there’s other days when I can’t feel my feet at all.

But the biggie, as we all know, is the teeth-gnashing frustration of describing MS fatigue. No matter how you explain it to other people, there will always, always be someone who says, ‘Oh, I get tired too. I know exactly what you mean.’ Um, no, you don’t. Now, please run into my fist. I’m too tired to punch you.

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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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Party Pooper

you are invitedI have two family gatherings in the next couple of days. I love my family to pieces and adore spending time with them. That’s not the problem. It’s the uninvited guest who always tags along with me that’s giving me palpitations.

MS hisses in my ear, ‘you can’t go, you’ll be too tired, too hot, too tingly, too boring – why don’t you just go back to your sofa, have a nice lie down.’

I am an awkward guest now, like the Mad Aunt everyone knows they have to invite but aren’t quite sure what to do with. Chairs and parasols are rearranged in the garden thanks to heat intolerance, guests look away politely as I spill my drink thanks to dodgy hands and my jokes fall flat as I suddenly can’t remember all-important punchlines thanks to cog fog.

Don’t get me wrong, my family are wonderful, it’s just that MS has driven an invisible wedge between us. Sitting in a dark, shady corner watching everyone else bask in the sun is a metaphor for life with MS.

So, I have some pre-prepared answers ready to lessen the awkwardness and make me appear slightly less tragic:

‘You keep yawning, are we keeping you up?’

– ‘Hell no, was out last night dancing on the tables, fabulous time, wasn’t back til 2 am’

‘Hey, come out into the sun!!’

– ‘S’ok, Vogue said pale is the new tan’

‘Whoops, careful’

– ‘No worries, it takes skill you know, to trip over a flat surface and I’m the champion’

Good plan, no? My family all know I have MS but I don’t really want to belabour the point, and as most of us with MS know, trying to describe the symptoms is not for party-talk, it’s a full-blown maudlin evening over wine, Pringles, low-burning candles and Edith Piaf in the background. And anyway, I feel awkward enough without wanting everyone else to feel the same way too.

So I will try my hardest. I will take part in pass-the-new-baby-around, but perhaps pass him on a little quicker than the others. I will grip my wine glass with two hands, as if I am drinking from a chalice. I will pinch some ice cubes and surreptitiously pop them down my top. Above all, I will attempt to leave my uninvited guest at the door, just for a while….

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MS – A Life Of Opposites

pick-n-mixMS is a bizarre illness – there are hundreds of combinations of symptoms and no one person’s MS is the same as another’s. It’s like an MS pick-n-mix, except MS does the choosing. We just weigh and pay.

What’s most frustrating though is the sheer contradiction in symptoms. One day I’ll have all the windows open, the fan going at full blast, an arctic wind whipping round my feet. The next, I’m chilled to the bone, wrapped in my duvet clutching my hot water bottle.

Or there’s the foot-drop – the days when my feet decide to do an Irish jig and every pavement becomes a minefield, in sharp contrast to other days when my legs are rigid and I walk like a wound-up robot.

On top of that is my old nemesis, MS fatigue, the bane of my life. Striking at any time, it drives me to my sofa, everything else on hold until normal service resumes. So why do I also have periods of extreme insomnia? Nights when I sit downstairs listening to the shipping forecast and World Service into the wee small hours.

It’s not just the physical symptoms – my emotions swing from one extreme to the other too. On Sunday I was feeling on top of the world but on Monday I had one of my gloomy days. Nothing had happened to explain it. Perhaps it is the daily pressure of trying to maintain a normal life while coping with the whole MS thing, who knows?

I’m off to the Hay-on-Wye book festival with friends today, a trip I’ve been looking forward to for months. Apart from the haematoma on my leg which is still as painful as ever, I’m praying that the fatigue also takes a day trip, in the opposite direction. I’m hoping it won’t be a day when I just want to go back to bed, pull my duvet over me and shut out the world.

MS can be a very unsociable illness and not knowing from one day to the next just what it’ll throw at you makes life even more difficult to plan, but for today, I am going out whether MS likes it or not. So if you’re in Hay-on-Wye today and see a chubby-faced woman fast asleep on a deckchair, that’ll be me.

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Tripping All Over The Place

Did you know twice as many people die in trips and falls at home than in car crashes? No, me neither until I read the cheery news over breakfast yesterday. Now I have another thing to add to my list of worries that keep me awake in the wee small hours.

Foot drop is the bane of my life. I trip over flat surfaces, the cat, pavements, dust balls and just about anything else in my way.

At Christmas I tripped up the stairs, then fell backwards, smashing into my bookcase and landing like a squashed spider on the floor, books raining down on me. The bruising was spectacular, but I did find a book I’d given up as lost.

There’s no way of knowing when foot drop will strike. One day it leaves you in peace, the next it’s shoving you around the high street with abandon. People give me a wide berth, as hey, I could be drunk. At 9.30 am. Kerbs taunt me, potholes are a logistical nightmare when crossing the road and cobble-stones are pure evil.

Sorry Shakespeare, but I am never, ever going to Stratford-upon-Avon ever again. A lovely little day trip turned into a day from hell when I got out the car and saw cobble-stones stretched out in every direction. I clung to my friend for dear life and quite possibly looked as if I was being taken out from a secure unit for the weekend as I muttered, ‘evil, evil things, I hate you’ under my breath every few minutes as he dragged me up the road.

Then there was the Gastro Pub Incident, when a friend took me out for dinner. A short stumble to the bathroom led to disaster as I cartwheeled across the floor in front of six bemused diners, ending up halfway under their table. To compound my misery, my friend hadn’t even noticed as he was too busy scrolling through his phone. I limped back to our table, face burning, sniveling with pain and embarrassment.

Anyway, the good news is, the sixth most common way to die at home is by drowning in the bath. Thank you, MS heat intolerance for making baths a thing of the past. At least you’re good for something…

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