I was invited to join an MS Fatigue Management course, which started yesterday. The aim is to discuss strategies for coping with fatigue, the impact it can have and to meet people in a similar situation. Our little gang is now proud to be launching a new campaign – to redefine MS fatigue/tiredness/exhaustion as ‘Clinical Fatigue’, in the hope that we will be taken more seriously.
Let me explain. Fatigue is one of the most common symptoms in MS and around 80% of us have it. There is a medical reason for it – the demyelination in the central nervous system and is the result of the disease process of MS. Ok, technical bit over, now the day-to-day reality. MS fatigue is like being run over by a big lorry of tiredness and squashed flat. It can strike out of nowhere. It can seriously get in the way of life and is similar to how you would feel if you were awake for 48 hours non-stop.
So why the song and dance? Well, it’s just so darned difficult to convey to friends, family, work, random strangers that this is extreme tiredness. Off the scale in intensity. Typical conversation:
Them: How are you today (looking me up and down). You look good?
Me: Oh, I’m cream-crackered. Exhausted.
Them: Yeah, know just how you feel. I was pooped last night.
Me: No, I mean really, really tired.
Them: God, yeah. That’s like me every day. But you look so well!
Me: I’m off to bed…ta ra.
It’s frustrating. I would bang my head against the wall in frustration if it didn’t make me so tired, and anyhow, there’s enough damage in my brain already.
The course was excellent and I met some brilliant people. It’s refreshing to hear that I’m not making it up, the tiredness is not me being lazy, or me going mad. This is why we want to campaign to redefine MS fatigue, give it a proper, medical name. So from now on, we will be referring to it as ‘Clinical Fatigue’, to give it the gravitas it deserves.
I would go out with a placard and march up and down the street, but I am exhausted and I’m going to squeeze in a quick nap before The Teenager gets back from school…