Pause. Press Play.

Pause. Press Play.After more than three weeks off work with a lumpy haematoma on my leg, I am finally off my sofa and raring to go.

When I tell people I work for my builder friend, they raise an eyebrow, look me up and down and say, ‘Oh, really?’ They might have visions of me driving a large white van, chucking plasterboard around and fitting worktops in my spare time.

Years ago when I helped my friend set up his company, this was probably true. He taught me how to use a drill and I became an excellent tiler. Those days are long gone, although I can still tile if I sit on a bench and the boss applies the adhesive for me first. It’s a bit like mosaic craft work. Until the tiles fall off.

My boss is the Patron Saint of Hopeless Causes and reluctantly agreed to let me work with him after I was sacked from my job. I begged, cajoled and consented to listening to commercial radio all day long. Obviously MS has put paid to most of the things I used to do, so we have ‘adapted and overcome’. Well, I have. The boss may well disagree.

So now, my duties consist of – making tea and coffee, putting the radio on, tidying up the boss’s toolbox (not very well, as you can see from my picture), sweeping things in to little piles everywhere, gossiping, yelling out a countdown to lunchtime, making more tea and coffee and spending hours nattering to the owners of whichever house we are working on (or ‘skiving’, as the boss calls it). I call it good PR. If there’s a job where my presence is more of a hindrance, I work from home, writing up quotes, sourcing materials and helping him with his website, so I’m not completely useless.

When I asked the boss if he had missed me when I was off, he looked bemused and paused mid-way through drilling. ‘Missed what?’ I flounced (limped and stumbled) off, but he has a point, I suppose. He rattled off the facts – ‘you keep dropping the nails, you trip over everything, I find you dozing off in quiet corners, you can’t lift anything heavier than a hammer, and you talk non-stop. What’s to miss?’

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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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