Tag Archives: symptoms

Groundhog Day

groundhog dayI was away at the weekend with The Teenager and a friend, who came with me only on the condition that he could watch Formula 1 (yawn).

To pass the ho-hum time away, I read the newspapers and amused myself by reading bits out to him as he tried to concentrate on men in leather onesies going round and round and round in little cars.

– ‘I didn’t know Richard Pryor had MS, did you?’

– ‘Nope. Shhh. They’re on the 27th lap.

– ‘Bored.’

– ‘Shhh. Anyway, you’ve got MS, what’s the big deal?’

Of course. I completely forgot I had MS. Weird. I’d like to say it’s because I’m in rude health, but it’s probably more likely that all my symptoms have now been fully assimilated into my life and it’s just…normal?

This happens most days and it’s like a short, sharp shock every single time I remember. A bit like mornings when The Teenager was a newborn and it’d dawn on me that I was A Mother. I’d lie there, waiting for him to start yelling (never took long) and wonder why on earth the maternity unit actually let me leave the hospital with him. When they told me I was free to leave, I looked at the baby then back at them, asking, ‘seriously? He’s so….um, so, kind of small?’ ‘Yes love, babies generally are. Now, be a dear and shut the door behind you.’

Will this groundhog day ever end? Of course I know I have MS. My legs, arms and brain tell me. Or is this actually a good thing? Have I come to a point of quiet acceptance? I mean, I still chuckle when I realise I’m a mother to a teenager. Me? Really? I feel like I was one myself only a few years ago.

Or as The Teenager says, ‘mum, if you say ‘totes’ one more time and keep reading Heat magazine, I’ll get you a subscription to Women’s Weekly for your Christmas.’

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MS Society To The Rescue…

downloadMy last post about how hard it is to describe MS to other people struck a chord with lots of you and a huge thanks to everyone who retweeted it and posted it on Facebook.

Well, those lovely peeps at the MS Society have just given their introductory guide to MS a makeover. The guide – What is MS? – is for anyone interested in the condition and can be useful to give to your friends, family and colleagues. (click here to have a look at it)

It’s still going to be hard to describe what MS is like, but this is a great starting point. This compact edition has only seven sections, compared to 14 in the last one:

  • What is MS?
  • What causes MS?
  • What are the symptoms of MS?
  • How is MS diagnosed?
  • Are there different types of MS?
  • Can MS be treated?
  • How can the MS Society help?

Feedback on the previous edition now means that the booklet is A5 rather than A4, has a photographic cover to make it more visually appealing and the amount of text has been reduced. There’s also lots more graphics so the information is easier to read and take in.

This new guide is a lot more upbeat and fresh (even The Teenager gave it a thumbs up). Have a read, download it and hand out to everyone you know. The MS Society is always on the ball with information and leaflets covering every aspect of life with MS. I’ve got a whole bunch of them at home that I picked up at last year’s MS Life in Manchester. So spread the word – knowledge is power.

p.s. MS Life 2014 will be 26th – 27th April. Click HERE for more details.

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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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I Have a new job…Almost

Woo hoo! I’m swinging my pants and hanging out the bunting. I have a new job, the job of my dreams, the job I would construct from fantasy and make real. Regular readers who can cast their minds back far enough will remember I went for a job interview at a company I really wanted to work for and I had everything crossed.

So why the glum face? Well, I had a phone call yesterday from the company that started with the words, ‘I’m afraid it’s bad news’. Never a good indication.  Luckily I was sitting in my car at the time and was able to rest (thump) my head on the steering wheel. The chirpy woman explained that the new  location I was due to be placed in at the beginning of January was now not going ahead, but there may be an opening for me a few months down the line in a different site. Apparently my job is secure, just not right now. Perhaps in the spring.

I now have a problem. My current job (with the Evil Bosses who sacked me for having MS) ends just before Christmas, after I negotiated two months grace. From then on, I will be unemployed.

But, never fear, my Super Friend has come to the rescue, yet again. He has very sweetly registered himself as an employer with the tax office, waded through mountains of paperwork and has offered me a job to tide me over until my new one starts. Phew! That was a close shave. Why, then am I ever so slightly apprehensive about starting work with him, during the cold, bleak, dark winter months?

Don’t laugh. He’s a builder and I will be his builder’s mate. Honestly. With my dodgy balance, weak left arm and tingly hands and feet, he’s still prepared to take me on, probably for the comedic factor, but hey, it’s a job. I have to start reading The Sun (skipping swiftly over Page 3) and work out the difference between an architect and an architrave. I will need to begin enjoying burgers bought from vans, strong tea and listening to commercial radio all day long.

On reflection, I am incredibly lucky. The alternative is too awful to contemplate. And maybe doing such physical work for a couple of months will a) tone me up and b) make me so, so grateful to get back into the warmth again in my proper new job. So, if anyone wants a kitchen fitted or an outside wall rebuilt, I’m your (wo)man…..

To read about my interview – click here.

To read more about Super Friend – click here.

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