I have to admit I had no idea about the difference between clinical fatigue and normal (even extreme) tiredness before getting sick last summer.
Hey, I had a baby. I had those early months of never getting more than a few hours sleep at a time. I walked around in a fog like every new mom does. And truthfully, I couldn't imagine that there was something that people could have that involved being even more tired than I was then.
Now I know.
But I have trouble trying to explain it to people.
"Maybe you're sleeping too much," some people say.
"It's because you're so inactive -- you need to get some exercise and then you won't be so tired," others say.
"I'm really tired too. My kid was up all night being sick, and I didn't get any sleep at all. I know exactly how you feel."
Well, not really. (Although I have great sympathy for parents up all night with sick kids! It is exhausting, no question.)
Clinical fatigue is more of a bone-deep exhaustion that lasts for weeks, months or years. I need about 12 hours sleep a day just to function at a bare minimum. But when I wake up, I feel as tired as though I haven't slept at all for weeks or months. (I've tested it -- it is worse if I sleep less.) It's a complete lack of energy that no amount of caffeine will cure. (Although I've given up caffeine, I have tested to see if it helps. It doesn't.)
It's a feeling that I don't think you can really understand unless you've been there yourself. And I sincerely hope that my friends and family don't have to find out firsthand. (My mom, who has myasthenia gravis, already knows.)
But I'm grateful that I've found others, mostly online, who have been there/done that because it helps me feel a little less isolated, a little less alone on this illness frontier.
But I still find myself at a loss of words when I try to explain to normal, healthy people what I'm going through and why it's not just a matter of bucking up and powering through as many people have implied or out-and-out suggested.
And it's not that I'm lazy. Or simply that I'm out of shape from inactivity due to the length of my illness.
It's a symptom of the illness itself, that undefined, undiagnosed illness that I fear will be chronic and not temporary, although I haven't given up hope yet that something will happen and I'll find myself feeling better, slowly and surely.
I'm not sure if that means I'm in denial. Or if I'm just trying to hold onto the power of positive thinking.
1 week ago