Tag Archives: symptom

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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An electric feeling

One of the many symptoms of MS I had yet to experience has struck with full force. Those electric shock sensations, also known as l’Hermittes sign or Barber Chair Phenomenon, had up until now only fleetingly bothered me, lasting no more than a couple of seconds each time.

I was helping a friend strip wallpaper over the weekend (I know, the excitement!), when they started up. A bit like labour pains, there was some time between each to start with, but they slowly increased until it was an almost continuous pain. I won’t bore you with the details, but the sensation was so odd and so bizarrely painful, I laid down my tools, got in the car and slowly drove home, a journey made more difficult as I couldn’t move my head and a tractor had broken down in the middle of the road.

And there’s the nub. Just when you think you have MS under control, it decides to stick a hand in its big bag of symptoms and chuck another one at you. It’s amazing what you can come to regard as normal – the tiredness, the dodgy walking, the balance problems, the twitching, the numb hands, the overwhelming desire to stuff my face with chocolate – and you adjust your life accordingly. Everything is as good as it can be, until something like this knocks you back to square one again.

I have been wondering though, how did MS’ers describe the pain before electricity was invented?

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