Adventures in Multiple Sclerosis

Most people with MS have to deal with the crushing fatigue that comes along with it. I like to code-name this fatigue, “the special kind of tired” because it’s really hard to explain it to someone who doesn’t have MS. Everyone gets fatigued–but this is totally different than regular exhaustion that can be attributed to over-exertion or temporary illness like the flu.

You simply wake up with it one morning and then for the rest of the day, you feel as if you’re walking around with weights attached to your limbs. You can get out of breath just bending over to tie your shoes. Holding up your head takes conscious effort. Walking feels like forcing your legs against an ocean current. Standing up from a seated position can make you light headed, as if you’re experiencing vertigo or about to black out. This is especially fun when it happens in a public bathroom stall. Not the kind of place you want to lose your balance, for sure. And, yeah, fatigue makes you feel helpless and depressed. Sometimes I get so tired and frustrated that it’s hard to fight the urge to cry.

So, as you may have guessed, I’m experiencing the special kind of tired today. As I put it in a tweet a few moments ago, I feel like a droopy balloon.

I’ve of course had MS fatigue LOTS over the course of the nearly 3 years since my diagnosis (and probably before then), but I’ve never bothered to look up what it is. So I Googled, and discovered that beyond the fatigue caused by the daily physical challenges of MS, there’s another element to it called “lassitude.”  This is how the National MS Society defines the characteristics of this particular brand of fatigue:

• Generally occurs on a daily basis
• May occur early in the morning, even after a restful night’s sleep
• Tends to worsen as the day progresses
• Tends to be aggravated by heat and humidity
• Comes on easily and suddenly
• Is generally more severe than normal fatigue
• Is more likely to interfere with daily responsibilities

While I don’t have lassitude (I learned a new word!) on a daily basis, the rest of that list definitely applies to me. Especially the part about how it’s aggravated by heat and humidity, which, for me, can sometimes explain why it comes on so suddenly. Also, some foods, like sugar or wheat, can make my fatigue worse. But I still eat them (pizza! BLTs! yum!).

Of course, like with MS itself, the causes of fatigue are unknown. And treating it is as much of a crap-shoot as treating the rest of this stupid disease. And for anyone who wonders if this is something you can sleep off, the answer is no. Or maybe. Or who knows? The only thing I can be certain about is that MS fatigue is definitely a major drag.

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