Category Archives: Symptoms and Treatment

An electric feeling

One of the many symptoms of MS I had yet to experience has struck with full force. Those electric shock sensations, also known as l’Hermittes sign or Barber Chair Phenomenon, had up until now only fleetingly bothered me, lasting no more than a couple of seconds each time.

I was helping a friend strip wallpaper over the weekend (I know, the excitement!), when they started up. A bit like labour pains, there was some time between each to start with, but they slowly increased until it was an almost continuous pain. I won’t bore you with the details, but the sensation was so odd and so bizarrely painful, I laid down my tools, got in the car and slowly drove home, a journey made more difficult as I couldn’t move my head and a tractor had broken down in the middle of the road.

And there’s the nub. Just when you think you have MS under control, it decides to stick a hand in its big bag of symptoms and chuck another one at you. It’s amazing what you can come to regard as normal – the tiredness, the dodgy walking, the balance problems, the twitching, the numb hands, the overwhelming desire to stuff my face with chocolate – and you adjust your life accordingly. Everything is as good as it can be, until something like this knocks you back to square one again.

I have been wondering though, how did MS’ers describe the pain before electricity was invented?

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Firewalking. Seriously?

I 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

Stumbling In Flats – living with multiple sclerosisNo, 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

Stumbling In Flats – living with multiple sclerosis

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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