Tag Archives: vampire

May 16 2014
8 Comments
Symptoms and Treatment

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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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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