Tag Archives: insomnia

In The Wee Small Hours

insomniaMS is a pain.

It nudges me awake at night then makes me sleep through the day.

I have a good few days off work and the bliss of sleeping in the afternoon cannot be understated.

For example, today, I made myself a lovely tuna sandwich complete with mashed capers. Perfect. Thought I’d nod off for a little while before The Essay. I woke up THREE hours later, just in time to gather myself to welcome The Teenager back home from school.

But. In the ye olden days, i.e. before MS, I used to sleep like a log. Straight through. Now, I wake at 2am, 3am, etc. Anything can wake me – a cramp, a weird hand fixed into something gruesome (ewwww) or the cat lying on my face. It has been known.

In short, sleep has become the bane of my life. I hate it and I love it. To me, it is a complete waste of valuable time. To MS, it is a necessity. So I gather my blankie around me and do my time.

I try to fight it but I always lose. Sleep is a drug when you have MS and now I can’t take Amantadine (sniff) any more, sleep is more important than ever.

I did manage to make it to my lecture last night and stayed awake. But I scratched a lot. Is that an MS symptom?

Anyway, sleep, or lack of is becoming far too much of a problem. I will not and can not, sleep my life away.

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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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