In her second guest blog for us Jo discusses MS fatigue and how it can creep up on you unexpectedly...
For those of us with MS, planning becomes second nature. As we only have a limited amount of energy available we know there is only so much we can do before symptoms flare up or we run out of batteries. So if there is a particularly big event approaching I
try to plan a rest day either side to compensate. Simple.
However, I have now discovered a new phenomenon which I like to call ‘the day after, the day after, the night before’. It appears that often the day after a big event or a busy day I actually don’t feel too bad. (Just to clarify a ‘big event’ or ‘busy day’ could be a football match or night out, but equally could be ‘did some housework’ or ‘went to the shops’!) However the day after that? I often feel dreadful! I’m exhausted, the pain is back or my legs are wobbly and I struggle to function.
A recent example of this, was I went to see a band I had always wanted to see. It was ambitious I admit. I rested the day before and on the day itself, got a lift to and from the concert and had an amazing time (it made a change to have my ears ringing for another reason rather than the usual tinnitus!) And the next day? I didn’t feel too bad. Tired from the late night and the extra standing and walking, but pretty OK. ‘Got away with that’ I thought. I was pleasantly surprised and as it turns out lulled into a completely false sense of security, because the day after? I felt awful! Pain, nausea, crippling fatigue…all the usual suspects.
So why is this happening? I have absolutely no idea, but it’s really annoying and makes that whole planning thing a whole lot harder! I now have to try and allow two days rest after a particularly busy day, which isn’t always practical. And if I have a run of a few days with commitments and appointments it means I have to cut everything else right back to have any chance of doing them. It means no washing will be done, meals will be chosen by their ease of preparation (hello egg and chips) and socialising will be cut right back, because these mundane daily activities use valuable energy that isn’t going spare.
And that’s OK. If that’s what it takes to ensure I have the best chance of doing the things I have to and want to do, then so be it. Sadly my hangover days are long behind me (hard enough to stay on my feet and find my words sober!) so the traditional day after the night before is not a problem…but the day after, the day after, the night before? That’s a whole different kind of challenge that hair of the dog or a fry up just won’t fix!
You can download our Choices leaflets on fatigue, and MS symptoms from the MS-UK website.