i don’t want to spoil the party

it is sort of ironic that as i sit here, trying to write about MS fatigue, i find myself staring out the window and fading away into the distance. it is hard to collect my thoughts coherently – or perhaps it is just going from the thoughts to the writing of them that is, this afternoon, such a tough hurdle. it is no wonder that fatigue is the primary cause for people with MS to leave the workforce. it’s not just tiredness, although that is a big part of it. people with MS maybe be dealing with sleep disturbances, caused by a number of issues, or the  simple fact that for many people with MS, simple daily activity requires more energy to accomplish.

MS fatigue can come out of no where, and can occur at any time, even early in the day after a solid night of sleep. it can come on easily and suddenly, when we least expect it. and it is hard to describe or explain. to  say “i’m just tired,” doesn’t quite cut it. it has also been called “lassitude,” meaning a deep lethargy, a feeling of weakness and lack of interest or vitality. some of you might know of the spoon theory, (and in re-reading it myself just now, i was reminded that it applies to other conditions, like lupis, and not just MS.). MS (or lupis) fatigue can just mean that we’ve run out of spoons.

perhaps my main beef with so many of the symptoms of MS that i deal with is how they affect those around me. the fact that i am in a wheelchair makes it difficult to be spontaneous in choosing a restaurant or other venue – coming face to face with a set of steps can be a real buzz-kill (although it can often be improvised around). it also means that whatever vehicle we go in has to accommodate my chair. fatigue does this too. i often don’t see it coming, and in the middle of a party, or dinner out with friends, or seeing a concert, all of a sudden i feel blank and spent, what my friend john called “done, just done.” it looks to other people like i’m bored, that i can’t wait to leave, and that the fun for all of us is over. none of those is necessarily true.  i’m not being rude, i’m not annoyed, i’m not being dismissive, and i’m trying my best not to ignore you. chances are i’m having a good time – i can be a wallflower, enjoying the conversation or the music, but not participating in it very much.

i don’t mean to play the MS card – oh, poor me, you should all feel sorry for me. and i don’t want people to feel they have to accommodate my “special” needs. (although people tend to be remarkably willing to assist when they see the need.) that is my job. i write this not as any sort of excuse – no more than i make an excuse for my being in a wheelchair. it is an explanation, the same as if someone were to ask why i have such trouble climbing stairs.  but in answer to the question, “is everything OK?”, if i were to answer, “yeah, i’m just all out of spoons,” very few people would know what i was talking about. the usual answer is that i’m tired. which doesn’t really answer the question.

and when i tell the other people i’m with that the party can go on despite my being tired, i am not being a martyr. i mean it. there is no need for everyone to go home or for the party to end on my account. i’m a grown-up, and though it might not look like it at times, i can generally take care of myself.  i might wander off seeking a quiet corner (which also often appears to be rude) to steady myself and try to regroup. i appreciate your concerns, as always, but when i say i’m ok – even though it looks quite the contrary – i’m ok.

as i believe everyone is, all the time, i am doing my best.

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3 thoughts on “i don’t want to spoil the party

  1. Fatigue forced me to retire at 37 from my career in the corporate world. I had no visible symptoms from MS so it was always a shocker when I would tell someone that was my diagnosis. My symptoms are now visible. My fatigue is the same, but I have learned to manage it through supplements which, perhaps specific to me, have helped me. I also have learned to take my frequent five-minute naps which allow me to go on like the whirling dervish I have always been. I also know what it is like to have energy vanish in an instant. I have learned not to fight those moments and just give in … if I can. Yes, you are doing the best you can. And that has to be good enough.

  2. You knock my socks off Stephen. Wish I could write like you. It’s honest and from the heart, qualities lacking for so many writers these days. Keep writing, for our sakes. I also want to know more about the pudding you love…

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