Tag Archives: heat intolerance

Rugby Mum…..And MS

Rugby MumI like The Teenager playing rugby. He won’t mind me saying he was pretty dire to start with, a couple of years ago, but he’s nothing if not determined. Now, he’s got real promise and has offered to buy me a luxury penthouse granny flat if he becomes famous.  Only problem is, I don’t understand the game at all.

Before MS, I would duly stand on the sidelines, muffled in a couple of layers of jumpers, wellie boots on and teeth chattering. I took my cue from the screaming crowd, and cheered along when something happened. Sometimes for the wrong team, but never mind. I schlepped to every game, took him to every training session and washed a pile of muddy clothes twice a week.

We even went ‘on tour’ last year, aka an excuse for the parents to let the kids run wild while we got blind, steaming drunk. So drunk, that I was nominated to go first on the karaoke, where I sang ‘Gold’ atrociously and still got applauded. And we had to wear silly hats all evening.  This was right before my first major relapse and there was an inkling there was something wrong when I went bright red in the face after a leisurely stroll and my legs turned to jelly.

So now, post-MS, the rugby routine is a little different. I still take him training and I still wash his kit but there’s no way I can go to every game. I can’t stand up for long, I’m normally tired beyond belief and my legs get too weak. If there’s an away game, I have to ask for The Teenager to have a lift as I don’t drive too far – my foot cramps up. Which is awkward, as every time I see one of the rugby parents, they scrutinise me closely, look me up and down and say, ‘But you look so…well?’  A code phrase for, ‘lazy cow, any excuse, eh?’

Yesterday, the game was cancelled as the pitch is saturated with rain. Am I unhappy? What do you think……

 

 

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Firewalking. Seriously?

imagesCAARAXK5I had an email yesterday, an update about ways to get involved in raising money for charity. Fundraising is admirable, worthy, makes you feel good inside and funding multiple sclerosis societies and their research is vital.

So when they knocked around a few ideas of how to raise this money, WHO came up with the idea of firewalking?

If one of the most common and distressing symptoms of MS is heat intolerance, it seems a bit of a strange and slightly cruel choice. How about upping the ante and have people fire-eating and firewalking simultaneously?

A lot of regional societies organise these events and apparently you walk 20 feet across burning embers, with the coals reaching 1200 degrees fahrenheit ( a crematorium burns at around 1400 degrees). In the information section, the guidelines state you must be able to lift your feet and take a minimum of 8 steps at fast pace. Hmm. Beginning to sound like a Disability Living Allowance assessment – at least we’re on familiar territory. In addition, ‘you may use walking sticks or mobility aids but please be aware that these may suffer fire damage’. Hey, that sounds great fun, where do I sign up?

Instead, how about choosing something us MS’ers are good at? A sofa-thon? Who can stay on their sofa the longest (me, me!). Or MS Snap? Give people some cards, get them to write down all their symptoms, shuffle them around and play a couple of games. For the uninitiated, MS has a vast amount of symptoms, so these games could run and run. Sometimes the old ways are the best though, so if you see a sad figure forlornly rattling a collection tin, pop some money in. It could be me,..

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my make-up hates me

No, really, it does. Not content with forcing me in to flat shoes, MS has also decided to rummage around in my make-up bag and make a mess of my face. If  it is a hot day, I carefully apply minimal make-up for work and when I check the mirror before I leave the house, I look just fine. Ok, you can see I’m wearing make-up and it’s pretty hard to get that ‘au natural’ look in your late 30’s anyhow. In the car, the air conditioning is primed to blast on cool. Park the car. Walk 30-odd metres to the door at work and blam – heat – bright red face. Really, really red, burning and hot. Heat intolerance! Not everyone with MS gets it, but I know it is one of the most annoying and inhibiting symptoms. We become vampires, staying indoors and only venturing outside after dark.

So, there I am, in work, trying to look professional, with a throbbing face, make-up sliding slowly south. I never understood what open pores were until my foundation popped out of them and mushed all over my face. As if this weren’t enough, MS has also decided to have a laugh with applying make-up. One of my last relapses involved my hands not working properly and shaking involuntarily – you can see where I’m going with this. So, rewind, it’s a cool day, I’m celebrating. I’m putting my make-up on for work, reaching for the eyeliner, start lining and I’m drawing on my eyeball. Wipe it off, try again. Beautiful line, just about done….go for the final flick…sheez. End up looking like the end of a very long night on the wine. Ok, try the lipstick. One side of lip done, and the other, yup, you’ve guessed it, all over my face. Scrub this off and repeat.

And finally, if it is a hot day and my hands don’t work – well,  Coco the Clown has nothing on me.

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Singing in the rain

I spend a lot of time lying down. Fatigue in multiple sclerosis is no joke, although my friends think it’s a pretty cushy side effect. I have bought a new sofa, hung the flatscreen on the wall so I can see it better and worked out how to put the phone on silent. So I like the rain. A lot.

Why? Two reasons. First, I can’t stand any heat at all now and will very quickly look like a hot, red, angry tomato if I am out in the sun for any length of time. Second, and most important, the rain keeps people indoors, lying down, watching telly. Just like me. Now I don’t feel quite so guilty that I am not outdoors, doing lovely sporty things or sunbathing or walking…in the sun.

So, my sofa is ready. The cushions are soft, the throws casually draped over the arms. Pile of magazines to one side, stack of books on the other. Bar of chocolate hidden from The Teenager under a bank statement. Let it rain…

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