Tag Archives: sleep

Eyes Wide Open

googlyNow, this is strange.

Since MS, I’m quite used to falling asleep at the drop of a hat, dozing off mid-conversation and eyeing up anything remotely comfortable – in any location – as a possible bed.

If I’m in a home-furnishings shop I’ll prod and pummel cushions, checking for sleep-ability. Too small, too hard, too soft. Too … not right.

But until now, I’ve never fallen asleep sitting up.

It’s a recent development and quite bizarre. The first time it happened, I was flicking through How to Write a Killer Novel in Ten Days, studiously highlighting important points (I may as well have highlighted the entire book).

Suddenly, my eyes went ‘all googly’ (technical term). They rolled around my head. I fought back, urging myself to wake up. The googly eyes continued and I dozed off, but was still able to hear everything around me. Very odd and ever so slightly terrifying.

I knew I was aware of my surroundings as I could hear The Teenager thundering down the stairs and snapping his fingers in front of my face, yelling, ‘Aaaaaand, you’re back in the room. Can I have some toast?’

It was exactly like being hypnotised, but being hypnotised for no good reason, such as creating an aversion to crisps or having an inexplicable hatred of Kinder chocolate.

The second time it happened was last night. I was watching a very interesting programme on catch-up and was just getting to the good-bit, the unveiling of the villain, when, blam, googly-eyes started up again. I shook my head, snapped it back. To no avail. Boom, I was out for the count.

I was only revived when The Teenager shook my shoulder and told me it was past my bedtime and there was no milk in the house. Unfortunately, the side-effect of googly-eyes is a complete inability to walk in a straight line, such is the strength of the induced sleep. So I staggered around the kitchen and living room, turning off lights, replenishing the cat’s crunchy food bowl, filling the kettle, then weaved my way to bed, bidding goodnight to The Teenager and his seventeen school friends who were playing online with him.

I lay in bed, pondering this new symptom. I told myself to stay calm. It could pass. It may not. So, I can sleep anywhere if I lie down and now if I sit up.

What happens if I can sleep standing up?

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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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I’m Not Failing, I’m Sleeping…

sleep tightI had one of those earth-shattering, life-changing  moments of clarity the other day.

I closed my eyes at 10am, just to have a quick cat nap.

Two hours later, I woke up. I was incensed, maddened by the sheer waste of time and looked with dismay at my unaccomplished ‘To Do’ list.

As I stumbled into the kitchen to make a cup of strong coffee, tripping over the cat (she’s tiny but deadly), I stopped in my tracks. MS fatigue. I expect everyone else to take me seriously about how debilitating it can be, how much of a real symptom it is. And yet… I don’t.

Instead, I see it as a major inconvenience, something to be tolerated if I am to get through the day intact. It’s a distraction, holding me back from my real life. Or is it? I take my other MS symptoms seriously and factor them in, so why don’t I do the same with my most significant symptom, fatigue?

Over the last two years, I have railed against the pointlessness of all this sleep. I flounce to my sofa in anger, utterly fed up at yet another hour passing me by with absolutely nothing achieved. This had to change.

Rather than getting angry, I am now going to start respecting this fatigue, just as I accept that nerve pain, foot drop and stumbling are part of my life now. I can’t change it, so I will accord it the same respect. The fatigue is my body’s way of telling me to slow down, my brain needs a rest. I will view it as a valid symptom, not a major annoyance.

I tried out this new way of thinking yesterday. I had some things to do in the morning, and could feel the fatigue creeping up. Back home, my brain shut down. The To Do list was put to one side, I got my duvet out and fell asleep. I woke up feeling better, accepting that this is my life now. I can’t change it, but I can change how I approach it. I can absorb it into my life or I can go on forever feeling angry and a failure.

And you know what? I feel that in some way I have made peace with myself. I’m not failing any more.

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Any Time, Any Place

sleepIf they gave out medals for sleeping, I’d be top of the podium (after a quick nap).

I wake up tired, I go to bed tired. I yawn constantly. And not polite little yawns either. Massive, jaw-aching, cartoon-like yawns. ‘Am I boring you?’ is a phrase I hear an awful lot.

It’s exhausting (excuse the pun) being tired all the time. It’s a bit like MS in miniature – the feeling of being disconnected from society, in a little bubble all of my own.

Days are meticulously planned, pockets of time doled out like bargaining chips. Spontaneity is a thing of the past, or at least, I have to think about it very carefully. Which kind of defeats the object.

There is a famous spoon theory, to explain chronic tiredness to other people, about how you only have a set amount of energy in one day. I prefer to think of the Mallet Theory. Say you start the day with ten mallets. You have to give one up every time you feel you’ve been coshed over the head by MS fatigue. If you’ve got any left at the end of the day, it’s been a good one.

The thing about MS fatigue, like most other MS symptoms, is that it can be managed, not cured. I have loads of strategies – a handy duvet tucked behind the sofa, rushing around like a wild woman when I suddenly find myself with some precious energy, preparing food ready for later, a command table set up next to my sofa with everything to hand. In fact, it’s very similar to when The Teenager was a screaming cute little baby. The midwife would chastise me, ‘now dear, mummy must sleep when baby does, mummy must be guided by baby, baby won’t mind if you haven’t managed to dust the house.’ Baby won’t mind if I shut the door on you, then.

I’d like to say I feel better with all this sleep. I don’t. It’s not a luxury, it’s a necessity. It barely brings me back up to my baseline energy levels, and even that’s way below par. But as with everything else that MS throws at me, I’ve adapted to it. It’s kind of normal now. Only problem is, I keep running out of mallets. …

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An Unwanted Duvet Day

Just when I think I’m doing pretty well after the Campath (Alemtuzumab) treatment I had over the summer, along comes a day when it all comes crashing down.

I’ve been feeling more and more tired over the week, the numbness and tingling has increased, I’m stumbling more than usual and I’m not in complete control of my body. I haven’t had a week like this in months and I hate it.

Yesterday, I woke up, got dressed, saw The Teenager off to school, went to the shop for a paper and some yoghurt then went home and back to bed. And that’s it. This is as bad as the darkest days I had at the beginning of the whole MS business. Will it last? Is this just a blip? I can’t even begin to say the word ‘relapse’ out loud for fear of jinxing myself.

Everything is difficult. I lie for hours, knowing I need to get up and work, cook lunch, catch up on phone calls. But some inner force is pinning me to the sofa. My limbs are heavy, I feel like I’ve been run over and I’m getting worried. Lunch was hysterical. I only had pasta and a jar of pesto in the house and normally I could rustle that up in five minutes. Yesterday, it took me an hour. Set the water on the hob, go and lie down. It boils, I put pasta in, go lie down. Pasta boils over, turn heat down, go lie down. Pasta is cooked, I leave it in the pan for half an hour and go lie down. I drain the pasta, add the pesto and heat up. Leave on side, go lie down. Re-heat in microwave. Go lie down and fall asleep.

If this sounds incredibly boring, it is. It’s soul-destroying. And lonely. I dread seeing The Teenager’s face when he comes back from school. He will take one look at me and know. Mum’s tired. How depressing.

Fingers crossed this is temporary and it will be business as usual very soon. I will cook The Teenager a mouth-watering roast at the weekend, I will do the housework (even the ironing), I will dust away all the cobwebs I counted while I lay on the sofa. But for now, I’m off to the sofa for a quick lie down. Again.

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