The other morning I dreamt my editors here at the Catholic Channel had me to dinner, then put on masks and pulled out fake guns (brief moment of wondering: Um, those are fake, right?) and told me to blog something about my life. It was more amusing and complex a dream than just that, but for blogging purposes, that was the essence of it.
The reason for my recent absence from the internet is simple: Normal weekly absence for teaching, have a cold, Thanksgiving, have a cold, can’t remember what, have a cold . . . the days start to add up. Nothing serious. No drama. Just day after day of having to decide where the priorities are, and deciding that my kids come first.
So I wanted to talk about what it is to be hit by the tiredness of chronic illness, because it’s not like people think.
1. I almost never talk about it. It’s boring and complicated and I have a hard time explaining it. Also, when I talk to you, I feel great. Maybe light-headed and exhausted, but seeing you or hearing what you have to say is one of the best things that happened to me all day. So yeah, I’m doing great at that particular moment, because you the person asking me “How’s it going?” have just made it so.
2. Stamina is different from peak performance. Back when I was a middling competitive cyclist, if I wanted to place well in a race I had to sit in the pack most of the time, because over the course of the race there was no way I could ride as fast, cumulatively, as the best riders out there. But at any given moment, sure, I could break into a sprint, or a semi-sprint that didn’t even look like I was trying that hard. What you can do for a minute is different than what you can do for an hour.
What chronic illness looks like is racing on a micro scale. Physical exertion, the kind that gets you moving and your blood pumping and your body out into the world, is fun stuff. Exhilarating. It isn’t necessarily a slog. You step out, work it a bit, have a great time, then go rest and recover.
What this means to those of us living the micro-race is that we look perfectly normal when people see us, because we’re enjoying our sprint-minutes, or our brisk-walk-on-bright-morning minutes.
Maybe people who’ve never taken pleasure in physical exertion can’t understand this. But those of you who have, you can.
3. Tired takes you by surprise. Everyone gets tired. You stayed up too late, or you worked hard, or you had a difficult week, or you’re getting over that cold, or you have toddlers: You’re tired. You can point to the thing that’s making you tired, and know that you’ll recover and be back to normal.
Tired with chronic illness comes on in one of those guises, because there’s always something in your life you can point to as a possible explanation, but then one day you realize that it’s not normal-tired.
Normal people don’t store a sleeping bag in their car so they can nap during the kids’ ball game. Normal people don’t dread the exhaustion of sitting for a couple hours at an enjoyable theater performance, make themselves go anyway, and halfway through start looking around for someplace to lie down. Normal people don’t have to make rules like only running one load of laundry a day, because they don’t have a history of running one-and-a-half loads and then just not being able to pull off getting that second load moved in and out of the dryer and the shirts hung up.
Tired World Confuses Outsiders Because it Confuses the Person Inside It, TooOne of the nearly universal characteristics of chronic illness is that it isn’t steady-state. Just when you think you’ve pegged the new-normal, normal changes. Better or worse, both happen. You think to yourself, “Oh, that’s going to just exhaust me but I have to do it,” and then it turns out nope, actually conditions conspired in your favor and it all went very well and you feel just fine. (For you, anyway.) Or you make some commitment that is entirely within your normal scope of abilities, and it inexplicably fails.
Things fall apart, or fall together, in strange ways. Suddenly you’re getting exhausted every day at 3pm, and since you work at home you can take a nap and you’re good. If you live a scheduled life, this means that things that happen at 1pm and 5 pm hold together fine, but anything that normally occurred at the new witching hour are just gone. You the inhabitant of tired world are left scratching your head, wondering why you manage x & z just fine, but y’s out the window and you aren’t sure when you lost it or how.
The types of tired betray you, too. There’s a difference, we all know, between tired of filling out tax forms and the tired of jogging around the neighborhood. Both of them will induce genuine fatigue even in people who enjoy those activities. (Such people exist. I kid you not.) You can be too tired for one and raring to go on the other.
Part of the maze of traveling through tired-world is discovering something that was never really a problem before now just owns you. Lately I can go all day without coughing, then something makes me cough, and the effort of it leaves me so tired I have to lay down for a while.* And then I’m fine.
I don’t know why it’s so tiring. No symptoms of an actual pulmonary illness (and yes, that’s a pulmonologist-verified claim). Just another interesting day in tired world.
*For something amusing, visit TV Tropes on the Incurable Cough of Death. Note that visiting this Wiki will lead you into link after entertaining link, which could end up costing you a lot of time. If you’re a writer, it’s an excellent education. The site includes a number of morally-problematic tropes, so proceed with caution.
Artwork: Henry Meynell Rheam [Public domain], via Wikimedia Commons