Has it really been that long?I have that feeling I got in high school when I turned up for a class and hadn't done the homework. You know the feeling of, 'I might be in trouble here'? It's been a while since I updated my blog, over a year in fact. Are you still there? Sorry about the delay.
FatigueIf I was asked to put all the symptoms of MS on front of me and asked to pick the one I was most conscious of, it would be fatigue more often than not. Yes, from time to time there are acute symptoms which obscure normal life and absorb pretty well all of my attention for a month or two, but overall, fatigue is the one that forces me to take note of it again and again. Daily, actually.
Let me explain: imagine you're sitting at your TV, PS3 or your computer and there is a power cut. The room goes dark and all our electronic devices die on us and worst of all, there is no Internet - the router is down - our twenty-first century life blood has stopped flowing. Suddenly, nothing. That is the closest I can get to describe the fatigue that comes with MS. It might be a just a few hours after waking in the morning - but, it's as if someone just switched off the power and it's game over - at least for a few hours. It can be as quick as that. There's no 'beginning to feel tired', just a sudden absence of energy and with that goes the ability to concentrate and process thoughts - at least to some extent. This explains why I don't drive in the afternoons if I can possibly avoid it and why I prefer to do everything in the morning - there's no guarantee of anything after early afternoon. So, fatigue is my number one enemy! It wins every time and there's nothing I can do about it other than arrange my life around it. Once I came to realise that life went on at what I term the 'new' normal.
It wasn't so bad in the early days of MS, but, it got worse. I phoned a friend's sister in Switzerland who has had MS for many years and she gave me the best advice that I alluded to above. She told me the days of seeing how much you could achieve each day were over: plan your rest times first and prioritise those things which must have your energy over others - be ruthless and learn to say 'no'! It meant a reappraisal of life in general and many things more specific, but, it's a way to survive. I am surprised sometimes by how much I manage to achieve, but, life had to become workable. The clutter that had surrounded me for years had to go. I had to keep up with the admin - you know, paperwork and such like, because, if there was anything gnawing at me for attention my energies were divided and I achieved little. I like to write and arrange music in a small way, but, if my desk was a mess or there was paperwork lying there that should have been attended to last week, or maybe the week before, then I couldn't just sit down and do an hour's music, I would have to clear my desk first in order to be able to work. So, keeping organised became a key part of managing fatigue, that means, when I feel creative I can sit right down and start working. Keeping my feet clear of distractions has become quite a discipline.
I suppose it's not surprising that fatigue is such a common symptom of MS. If something is going on in your brain that isn't supposed to then it makes sense that some of the collateral damage would manifest itself as fatigue and lack of energy. It makes sense, but it doesn't necessarily make it any easier to live with.