Joseph and I were in Indy for not quite a week shortly before he started school. It was busy, both because I tried make sure both sets of grandparents get as much kid time as they wanted and because this time I tried to at least touch base with people I don’t always have time to see. (I see my amazing friends Li and Michael because I usually stay with them.) So I went somewhere in addition to Mom’s pretty much every day, until the middle of the week. That day I woke up to find that if the wall hadn’t quite fallen on me, it was certainly shedding a few bricks in the vicinity of my head. Yeah, that wall. The one with “fibromyalgia” engraved on it. That really is a pretty good analogy for what it feels like when that sort of fatigue catches up with you.
A lot of the time when I’ve noticed that wall getting a bit shaky, I’ve just kept going. I am, as I may have observed previously, ridiculously stubborn, and besides I hate to miss anything. I just shove the loose brick out of my way and proceed to ignore it.
There’s just one problem with that. It doesn’t go away. If I don’t take the time to rest, bricks continue to tumble at an increasing rate until there are simply too many to shove aside, climb over (or out from under) or otherwise slog through. If I push it to that point, I’m pretty well useless.
If you look up fibro you’ll see “fatigue” as one of the primary characteristics, but that word isn’t strong enough. It’s not just being tired. It’s being unable to keep your eyes open. It’s knowing that you aren’t alert enough to drive safely. It’s feeling as if your thoughts are wrapped in batting, disappearing into softness when you try to pin them down. At its worst, it’s what a friend and I call “cat days”, when instead of being awake for about 16 hours in a day, that’s about how much you sleep.
So about the fourth day of the visit, when I found myself asleep by 10:00 and dragging at 8:00 the next morning, I didn’t fight it. I cancelled plans other than a late-afternoon expedition promised to my son and dinner with his godparents, and rested. When other adults were available, I went back to sleep. It worked – the following day I was fine, and we went on with our plans. But I hate calling and making those apologies, hate disappointing people, hate disappointing mysef. I look in the mirror, and the woman looking back at me doesn’t look like there’s a thing wrong with her other than her weight. It’s a good thing most of the people I know are aware I’m more likely to push myself too hard than to shrug off an obligation on a whim. As a society, we are not kind to those whose problems aren’t physically obvious. We are suspicious of any sort of weakness, often viewing it as a moral failing. It’s hard not to judge myself that way, even when I know I know it’s not valid, when I know the people whose opinion matters to me don’t judge me so.
I’m learning. I’m working out how to pace mysef. I’m learning to say no, to remember that if I have a lot to do, it’s far more likely to get done if I stretch it out over several days than try to get it all done at once. I’m learning to notice when those first few bricks start to shake loose, rather than going on until the whole thing lands on my head. I’m learning that not only do I not have the energy reserves of any two normal people, I no longer have the reserves of one. If I were battery operated, it wouldn’t be holding anything close to a full charge.
It’s aggravating (very), but really no more than that. It isn’t life threatening, and if I’ve finally had to acknowledge I’m not superwoman worse tragedies have occurred. I have a wonderful, loving, non-judgmental husband, who will point out to me when I’m the one being hard on myself. I have friends who will look at me and tell me it’s time to stop for the day if I start into the “just one more thing” script. I’ve never been particularly good about taking care of myself, but I have people around me who help with that, and will give me a metaphorical kick in the tochis if I’m disinclined to listen. And I’m finally learning to do it for myself. I would say that is a Good Thing.