Tag Archives: heat intolerance

Mar 23 2013
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Symptoms and Treatment

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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Mar 09 2013
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Daily Life

Nice Face, Shame About the Makeup

bad make upI sat down to write my list of things I must do, hugely inspired by comments from the last blog post, completely forgetting that I had actually attempted something for the first time ever last week.

Don’t laugh. I went for a make-up consultation. Yes, I entered the Glossy Hall of Terror and lived to tell the tale, albeit with a slightly bruised ego. I had done my research, knew which counter I wanted and marched with purpose towards it, then stumbled past the perfume-sprayers, the ladies who lunch and the gaggle of make-up ladies, in whose über-manicured hands my fate now rested.

At the counter, I nonchalantly pretended to examine the nail varnish until an assistant (Hi! I’m Carly!) with thickly-troweled-on make-up, surprised brows and a blowfish smile wobbled over to me in her 6 inch heels (jealous, much?). Out came my sorry tale, the heat intolerance, the cold intolerance, my poor, ravaged complexion, my battered soul. She nodded sympathetically, head cocked to one side as I pretty much flung myself at her feet, begging for help.

‘Now, do you want the ‘no-make up, make up look, just like I’m wearing?’

‘Oh, um’ (a quick glance at her face confirming my worst suspicions) ‘Well, I was hoping to , er…..’

‘Don’t you worry pet, my auntie had cancer, awful it was, so I know just what you’re looking for. You want something to help you fight back, face the world, feel strong and feminine again!’

‘Well, honestly, I’m just looking to, um, freshen things up a little.’

‘Super duper. Now, here’s our colours, our brushes, our pots, our testers, our dvd, our loyalty card, our massively overpriced eye cream. And what we do, what’s really special, is that I will call you next week, see how you’re getting on with your new make up. Isn’t that lovely? A nice little phone call. Should cheer you right up!’

Desperate to leave, I selected the make-up I wanted, chucked in a moisturiser and a primer and wangled some microscopic free samples, then diligently wrote down my telephone number and fled.

It was nice and girly to do something different, and some compensation for having such a limited range of shoes to choose from. Sadly, I still haven’t got the hang of blusher quite yet – less English Rose and more Spanish Beach Holiday Mahogany. And I’m still waiting for that special phone call from Carly…

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Jan 04 2013
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Symptoms and Treatment

A Pow Wow and a Lobster

It all started yesterday when my boss found me slumped against the plasterboard, eyes glazed. We had a quick pow wow and we’ve agreed I just can’t work two days in a row. It’s too much and far too physically demanding when I’m trying to cope with the MS symptoms.

He was brilliant and we now have a new plan. I will work single days with him, with time off for rest in between and if I’m just not up to it, he will let me loose on updating his website from home. Excellent. I could have cried in gratitude but my eyes were all gritty with brick dust.

I got back home a happy bunny. Exhausted but happy. So there was nothing I wanted more in the world than a nice, hot, steaming, bubbly bath. Mr Matey was lined up, the cat was out and I had the house to myself. Bliss. Just one thing I forgot – since having MS, I can’t have hot baths any more.

This is a sneaky symptom of MS. I am completely heat intolerant – Uhthoff’s phenomenon to give it it’s posh name. My last ever bath (hey, I do shower!), was a disaster. I had a slight inkling before and would have shorter and shorter baths without realising quite what was going on. But this final time, I ran a lovely bath, eased myself into it, let out a long sigh and lay back.

Wonderful. Except it wasn’t. As if a switch had gone off, I was suddenly completely drained of energy, my limbs wouldn’t move properly and my whole body was throbbing and tingling in pain. When I finally managed to clamber out, I looked like a demented lobster. My face was bright red and I looked ill. I staggered downstairs and lay on the sofa for an hour or so until I recovered.

So, sadly, I am resigned to a life of showers. It’s just not the same, is it? Nobody relaxes in a shower. Unless it’s one of those hi-tec ones with an in-built telly and water jets firing at you from every direction, massaging you into submission. And where can you keep a rubber duck in a shower?

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Nov 15 2012
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Symptoms and Treatment

MS’s Little Joke

MS can make you heat intolerant. The slightest ray of sunshine can render you weak, trembling and vampire-like, seeking out dark, shady places. Now, I was slowly getting to grips with this. Until recently. It seems you can also be cold intolerant. MS, you crafty little joker, you.

The heat intolerance crept up on me, slowly dropping hints. I would feel unusually tired, unsteady on my feet and stressed when I was out in the sun. One day, though, it decided to clobber me over the head. I was sitting in the sun for about five minutes when a friend came rushing over, her face a picture of horror. ‘What the hell’s  happened to you?’ she yelled, dragging me out my chair. Huh? She was gesturing at my face and thrusting a little mirror into my hands.

I grabbed it and looked. In place of my normal face, there was a huge, throbbing bright red mess. My make up was sliding south, I looked like a hyped-up tomato and I suddenly wanted to lie down, then and there. From that moment on, any heat was a nightmare. It would leave me weak and sapped of energy and I had to carry little mini-fans at all times. I also invested in a huge fan for my house, which got me so hot and bothered putting it together that I had to lie down in front of it for an hour to recover.

So, when the cold season approached, I was ecstatic. At last, I could do normal things again. Go for long walks, sit at an outdoor cafe people-watching, do a bit of gardening. But that’s when the chills started. I began trembling with the cold, my teeth would chatter and I could barely function. How?? My central heating doesn’t know if it’s coming or going. I put it on to get rid of the bone-numbing cold, then whack it off again and open all the doors when it gets too hot. I checked with the MS nurse, and yup, it’s true – you can be heat and cold intolerant.

I’ve spent the last three hours huddled on the sofa, freezing cold to my very core, the heating up full. Now I’m getting too hot again. The heating’s going off and I’m going to find some gin to add to the ice cubes I found in the freezer…

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Nov 06 2012
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Emotions

Long, Dark Nights

I love autumn, the crisp, bright days, the leaves, the bonfires, but it passes all too quickly. Winter? I’m undecided as yet. I’m turning the lights on earlier and earlier and soon it will be dark by 4.30.

I am torn. On the upside, it’s not hot, so no bright red face, sudden weakness or behaving like a demented vampire. I can now stay outdoors for longer than an hour without melting. And when I get tired, there’s no shame in curling up on the sofa with a good book and the remote control come 6pm, as it’s just what most of us do in the winter. I am glad the summer nights are over. It’s unspeakably sad to watch the world go by with your nose pressed against the window.

The flip side though, is being the only adult in the house. The evenings are endless. The clock slows down. I flit from one thing to another, unable to settle properly. It’s astounding how dark it is outside. Darkness does strange things to the mind. Small problems are magnified and big problems seem insurmountable. Old fears seep out like vapour.

Perhaps I have too much time on my hands to think about everything and nothing. I am in an odd limbo-land; still working for two months for the company that sacked me (for having MS). I want to celebrate, feel free, take a deep breath and thank God I am no longer there. But that’s on hold right now until just before Christmas.

Mind you, I used to live in a Nordic country, where it was dark by 3pm in the winter, wasn’t light the next morning until 10 and alcohol was shockingly expensive. Now, that really was grim.

 

 

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