I’m not tired, I’m….

I’m avatar200not tired, I’m…what? When I need my down-time, when I need to back out of something I’ve committed to, when I turn down an invitation, I usually say I’m too tired. People seem to accept that – sure, everyone knows that people with MS are often tired. And people understand what “tired” is. Everyone has been tired. “Yeah, I’m tired too.” After a day of hard activity, any kind of physical work or play, we all get that kind of tired. Or after a night of little or no or restless sleep, everyone knows that kind of tired. So when I say I’m tired, everyone nods knowingly, “Yeah, I get it. I’m tired too.” But I’m not tired. So what am I?

MS “tired” is an entirely unique beast. The kind of tired that multiple sclerosis delivers is difficult, at best, to explain. It’s a frame of reference thing. I often liken it to the experience of pregnancy. As compassionate and empathetic as I might have been when my Wife was was pregnant, the experience of pregnancy is something I will never understand. I simply can’t. Yeah, I passed a kidney stone once, and it hurt like hell, and I’ve heard the pain of a kidney stone a bit like the pain of childbirth. But I doubt there is a whole lot of similarity. (My Wife was in labor with our first child for 24 hours. My stone had me writhing for maybe 3 or 4. Of course, when she was done, she had a baby. When I was done, I had a little tiny rock.) So I’ll never be able to understand the experience of childbirth. There are plenty of things like that, things that can only be fully appreciated by them that experience them.

But to say I am tired doesn’t even really mean anything. There needs to be a word for it. “Fatigue” is good, people might know what that is and being fatigued is more that just sleepy. I can say to my Wife that I’m all out of spoons, and she knows what I’m talking about. But Spoon Theory is not well known among muggles (my term for the non-disabled). Weary? “Lacking strength, energy, or freshness because of a need for rest or sleep.” Closer, but sleep doesn’t hardly dent it. Frazzled? Spent? Done? Empty?

The best word I’ve found is “lassitude,” an MS-specific fatigue. MS lassitude can come on without warning. It can appear even after a solid night of sleep (whatever that is). It can make an appearance in the middle of dinner or a party or a pleasant outing. I’ve missed the second half of movies to lassitude. It’s worse in the heat and/or late in the day. Lassitude can dissipate just as quickly and inexplicably as it appears. It doesn’t even have much to do with being tired. A good word. But I’m not sure if anyone knows the definition of lassitude. I didn’t. And how do I use it? “I’m feeling lassy,” people think I’m molesting a collie dog. I’m not ignoring you, I’m just lassy. I’m not bored, or angry, and I don’t mean to be rude. I’m just … lassy. No, not “gassy,” (though I might also be gassy.) Just … lassy. Hmmm.

Maybe, like the famous Rain Chant from Woodstock, if we all just keep saying it, it’ll catch on. But I gotta wrap this up. I’m feeling kinda lassy.


4 thoughts on “I’m not tired, I’m….

  1. Here is my take on fatigue in poetic form:

    Climbing Uphill Always?

    A bag of rocks slung
    over my weary shoulder
    while climbing uphill.

    My breath is labored.
    I stumble on the rough trail.
    No relief in sight.

    Ordinary walk
    made extraordinary.
    That’s my daily life.

  2. Chronic fatigue can be so debilitating, I don’t think people realise how much it can effect your life. Thinking of you and sending hugs x

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