Thursday 8 August 2013

all talk of circadian rhythm...

Of all the symptoms of my multiple sclerosis, the one that I find hardest to predict is fatigue.  Like many of the other symptoms of MS, it is entirely invisible to the outside world.  For all the various numbness, pins & needles, muscle weakness, vision problems and other things that I experience almost every day, fatigue is by far the most debilitating: of all of those things, it is the only one that will actively stop me from doing something.

For me, it's different every day.  Some days, I'll feel very little at all; other days I might feel a general sense of lethargy.  On occasion though, my body will just completely run out of gas and I will barely have the energy left to drag myself off to bed.  On days like that, I feel as though my muscles are gripped with tiredness to the extent that I can barely lift my arms above my head; I seem to slowly lose the power of speech and it feels as though my body is shutting down bit-by-bit and it's a race to get myself somewhere where I can just close down completely.   It's horrible.

It's also pretty unpredictable.  I can say with some certainty that the morning after I have done my weekly injection is likely to see me waking up and feeling as though I am being gently pushed into the mattress of my bed, and simply getting up seems to be harder than on any other day.  That happens most weeks, but it doesn't happen every week.  Some weeks, I can push through that and get on with my day, but other weeks the fatigue seems to escalate as the day goes on.

Exercise doesn't seem to fatigue me in that sort of way, and weirdly, taking exercise can often help me shake off some lethargy.  My body seems to get more tired when I break my normal routine; if I do something slightly out of the ordinary.  This week, I went on that trip to Exeter.  It wasn't that big a deal and it probably wasn't all that physically strenuous, but it was a long day and the travelling really seems to have taken it's toll.  I travelled on Tuesday, went for a 4 mile run at lunchtime on Wednesday and injected that evening, and today I am bone weary and have been since the moment I woke up after a good night's sleep.

I seem to have a daily allocation of energy, and if I overspend it, my body will extract a penalty.  Perhaps I'm excessively stoical, but on the whole, I consider myself very lucky in how relatively little MS has affected me. I've been bothered by a few more little things over the last few months, but that fatigue has been one symptom that has been a fairly consistent threat.... albeit a mostly unpredictable one.

My approach?  Well, I do have a prescription for a drug that is apparently supposed to pick me up when I feel fatigued.  I used it once or twice, but I didn't really feel that it made a difference and I don't really like the idea of chemically modifying myself like that.  I'm on enough drugs as it is without voluntarily taking more.  I still have some kicking about, but I never use it.  I try to be sensible and not overdo things, but by the same token, unless my body is actually in the process of shutting down, I don't want to let the fear of what might happen stop me from living my life... whether that means going out for a run, staying in and watching tv and reading a book or, like tonight, getting myself out to Trent Bridge to watch the quarter final of the Twenty:20.

Before you die, live.  That's what I say.


  1. nice post (although your maddening stoicism is a constant thorn in my somewhat-more-mardy side...!) - i tried one of those anti-fatigue drugs (amantadine, i think) and it made me feel very 'speedy' and psychotic.

    like you i try to keep the drugs i take down to a minimum - although i feel i'm slowly being sucked into the FADDY MS DIET vortex - help me...

  2. Amantadine is the one I have, Steve. I've taken it occasionally, but only one at any time and I can honestly say that I've never noticed any difference. That being so, I tend not to take it at all.
    Faddy MS diet? Oh dear. Sounds appalling.