Tag Archives: tiredness

A Tiresome Inconvenience

sleepI’m just back from a mini-mini break, to Nottingham.

I tagged along with the Boss as he was taking his son back to Uni and what better way to ignore my looming Dissertation Deadline than to hitch a lift 150 miles away from my laptop?

I’d packed my little case, issued a stream of instructions to The Teenager (keep cat alive, lock door, don’t lose your key, etc) and had an hour to spare before I was to be picked up.

Then.

Aw, really?

That awful, prickling, niggling sensation. The one where you can almost physically feel the shutters roll down, one by one. MS fatigue. Out of the blue. It smacked me on the head so hard I felt sick. I had to sleep. I couldn’t move, so dozed sitting upright with Jeremy Kyle on pause (just when I was getting to the paternity test bit). I managed to bank enough minutes to look semi-decent for the journey, although my hair was a bit wild and my eyes were drooping.

When we hit the M50, I fell asleep. We stopped for coffee half-way and I was too tired to eat more than a bite of my KFC. Back in the car. More sleep.

Nottingham, took student out for a burger, then back to his accommodation. This morning, after a long sleep and a four-shot coffee, I promptly fell asleep in the car again and pretty much slept til Wales.

What can I say? Nottingham seems nice. But I’m still, after five years, struggling to accept this tiredness as a symptom in its own right. My walking was all over the place, I can take that. I can also accept the need to grasp my coffee cup extra tightly. I will probably have to get my boots re-soled again after all the tripping. But sleep? That’s the tricky one. It just seems such a waste.

As I drifted off outside Worcester, I tried to argue with my exhausted brain. Sleep would make me feel better. It’s MS-normal. It’s ok. But I’m not convincing myself.

I guess it’s the randomness of it – like all the other MS symptoms – but this one is so absolute. You completely remove yourself from life and that scares me. If you have foot-drop, you can still get out, albeit in a more comical fashion. If you drop a cup or bang around in the kitchen, you can make a joke out of it. But sleep is an alternate state and there’s nothing I can do about it.

For someone who has to stay in control, bring up a child, run a house and all that goes with it, to have to absent yourself from life and, in effect, become unconscious against your will, that’s a lot to take on board.

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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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