Monthly Archives: May 2013

What Not To Say To Someone With MS

Cardiff-20130530-00192When I was going through the whole MS diagnostic process, people said the strangest (and hurtful) things to me.

It was hard enough coming to terms with MS, far less finding smart replies to insensitive comments. Everyone has an opinion and they can’t wait to give it to you.

Even after diagnosis, the comments still keep coming, perhaps because MS is, for now, a mostly invisible illness for me and trying to convey the symptoms to other people is as difficult as counting brain lesions without an MRI.

So here’s my handy print-out-and-keep list of what not to say to someone with MS. Give it to all your newly-diagnosed friends to prepare them for the onslaught and before long, they’ll have ticked every one, several times over:

  • You need to stay positive.
  • You’ll be fine, they can do wonders these days.
  • My auntie/friend/great-uncle Billy had that, and they’re great now.
  • When are you giving up work?
  • I’ve heard Diet Coke and chewing gum can give you MS. 
  • You get to sleep a lot? Wow, great symptom, wish I had that. 
  • Hey, it could be worse. 
  • But you look so good!
  • If you get a blue badge, can I borrow it?
  • Have you tried (insert any number of miracle cures here…)?
  • You’re so brave.
  • You’re cancelling our evening out…AGAIN??
  • At least you don’t actually look disabled. 
  • You’re not using that old MS excuse again, are you?

So what should they say? Best piece of advice is not to presume things, just ask me questions. Ask what it means to me and my life. Everyone’s MS is different.

And if you don’t know what to say, say nothing. Just give me a hug and crack open the chocolate….

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Mixing With The Literati…

booksWith Bill Clinton once describing it as the ‘Woodstock of the mind’, I was over-excited to visit the Hay-on-Wye Book Festival on Tuesday.

Months ago, a friend and I had booked tickets for our kids to see one of their favourite authors and so we headed up through the damp Welsh countryside to the London literary outpost for a day of intellectual thought, musings and trying to grab the last seat in the cafe as we sheltered from the thundering rain.

The Teenager was suitably impressed that his talk would be held in the Google-sponsored tent (result) and at home later told me in reverential, hushed tones that the author had been ‘mint’ and had inspired him to read more (another result).

Anyway, we wandered around and settled down in the tented area for a picnic lunch, eschewing the over-priced venison burgers and alfalfa salad. I was dismayed to note that almost everyone, and I really do mean everyone, was in Hunter wellies and green wax jackets. My own boots were letting in water and squelched every time I walked.

Children with long, wild hair were happily munching on celery sticks and holding onto their crowns, made in the kids craft tent. Our kids, on the other hand, made a nuisance of themselves by pilfering the free cheese samples, going back again and again, claiming they needed yet another freebie for various fictional elderly relatives.

With two of our kids safely offloaded into the Google tent, we had a coffee, having sneaked into the ‘Friends’ tent. Apparently if you pay £25, you get priority booking and have a special ‘Friends’ queue at each event, a kind of highbrow ‘Fast-Track’ ticket you can buy at amusement parks. ‘Friends’ proudly displayed their special ID badges and elbowed past us at high speed.

It’s suitably apt that Hay is twinned with Timbuktu. It really was an out of the world, strange experience. Apparently the late singer-songwriter Ian Dury rewrote the lyrics to ‘Hit Me With Your Rhythm Stick’ at Hay in one of his last concerts – the famous line reading, ‘From the gardens of Babylon, all the way to lovely Hay.’ We ended our great day with chips from the chippy made  famous by the DJ Chris Evans, who marveled at the fact they use a spray gun to slather the chips in vinegar. Who says we ain’t highbrow?

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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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Definitely Not Britain’s Next Top Model

next top modelI hate having my photograph taken. I’m always the one at social gatherings who pulls funny faces or hides behind the nearest pillar (see my classic  fish-face, left<-).

So it was a strange experience to be photographed on the steps of the Welsh Assembly building on a sunny Bank Holiday Saturday, being gawped at by hordes of passers-by.

The MS Society is writing up my experiences in work for their magazine and unfortunately they want my mug-shot next to the article. There was no escaping it. The best thing about the day was the photographer, Eiona, a Twitter friend I hadn’t yet met in the real world. The worst thing was my round face. The Teenager doesn’t call me The Chubster for nothing. Personally, I blame the steroids.

Anyway, we had lunch and a natter first plus a cheeky glass of wine to steady the nerves. I badgered  Eiona to pull out every Photoshop trick in the book – make me drop two three stone, sculpt some cheekbones, add eyeliner (dodgy hands won’t let me anywhere near the stuff) and generally make me into a passable Kate Moss lookalike.

There was no putting it off any longer. Luckily I only had to stand on the steps, looking into the distance. Thinking serious thoughts (how can I get rid of the slugs in my garden?) I struck a pose. People stared. They were no doubt thinking, ‘who on earth is that chubby-faced woman being photographed – didn’t she play a corpse in Casualty?’

It actually went very well. I had chosen my Sara Lund jumper to wear, hoping to channel some Nordic gloominess and before long. it was a wrap and I was back home, making the most of the peace and quiet as The Teenager was away. After dinner, I noticed my exercise kettlebell staring at me accusingly. It does make a lovely door stop, but maybe I should pick the thing up now and again…

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Transformation. Complete?

When your world is turned upside downTomorrow it will be exactly a year since I was unceremoniously ushered out of the MS Limboland waiting room and into a whole new world of clinically definite multiple sclerosis.

MS has had an impact upon every area of my life. Everything has been transformed and I’m not the same person I was last May, but for my MS anniversary, I am going to concentrate on the positive changes.

I’ve done my grieving, I’ve cried myself hoarse. I could either live out a sad, bitter life, railing against the injustice of it all or seize this opportunity to change my life for the better.

I’m full of gratitude for the support network I have – the family and friends who stuck by me through the dark times. The ones who made a swift exit? Probably for the best, eh? I’m indebted to all the healthcare staff who pulled me through and who continue to support me and I’ve made a whole new circle of brilliant friends.

Being bullied at work and subsequently sacked simply for having MS showed me that when I’m pushed into a corner, I can still come out fighting. Ironically, as my colleagues were trying to crush my spirit, the whole experience made me stronger, braver and has restored my self-esteem.

Probably the biggest transformation though, is within my own character. I’m no longer willing to live a life according to what is ‘normal’ or what is expected of me. I am choosing my own path. For far too long I have gone through life reacting to the whims and actions of other people, forgetting in all the chaos that in fact, I had a choice all along.

It took something far bigger than those people to turn my world upside down and to put into perspective just how fleeting and how beautiful life is. MS is here to stay, for now, and as long as it does, we have to learn to get along. It’s part of me, so I can’t hate it. I have to keep learning to adapt, take the good days with the bad. Is the transformation complete? You betcha. Phase One at least….

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