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Chronic illness: wrecking all your plans

This is another one in my “the mental aspects of chronic illness” series, which, reminder: is me speaking for me. I don’t presume to speak for everyone with a chronic illness; some people have it worse; some people don’t have it as bad; some people’s disabilities intersect with other identities than mine; everyone’s different. People with disabilities are, first and foremost, people. We vary.

This is also part of NaNonFiWriMo, or my own interpretation thereof. In the spirit of NaNoWriMo, where it started, I’m trying not to edit as much as I might for a normal blog post. (Maybe that’s a terrible idea for something so personal, or maybe it’s the best idea. Time will tell.)

When I first thought of making this post, I was thinking less about social planning and more about project planning. I think I can address both, though.

Let’s talk about project planning first

The impetus for this post was my move across the country last year, followed early this year by a weird kind of triple move, consisting of getting my spouse from Alaska to Virginia, getting our stuff (and our car) from Alaska to Pittsburgh, and getting us/our pets/the stuff in Virginia to Pittsburgh. I’m a good project planner, great with logistics. I had backup plans for my backup plans. But I also had a chronic illness to contend with, and the one place where I should have known to build in extra leeway—the parts involving physical labor and the ability to sleep soundly in adverse conditions—were the parts where everything went sideways. And, oddly, they were the parts for which I’d done the least contingency planning.

Because here’s the thing about a lot of us with chronic illness: we drove ourselves really hard before we got ill. I don’t know if there’s really a higher percentage of driven, motivated people in the chronic illness camp than in the general population—I doubt anyone’s bothered taking count—but it’s certainly a theme I’ve noticed in blogs about autoimmune issues. Maybe I see it more because I blame myself for my illness. (That’s productive, right?) But if you think about it, it makes a certain sense: many chronic illnesses are brought on or exacerbated by stress, and a lot of stress, for many of us, is self-imposed.

a black box with white text that says 'you can't get much done in life if you only work on days when you feel good.'
A friend shared this on social media recently. It gave me feelings.

This is something I really struggle with, personally: knowing how far I can push myself without really bad repercussions. I used to be relentless, shorting myself on sleep, exercise, healthy food, and nearly everything else in the quest to do a better job at the things I deemed important. Mostly those things were school (specifically, grades), work, and this vague third thing that wasn’t work, because I wasn’t really getting paid for it (though it affected tenure in my academic job), but was something I cared very much about. I could call it “my profession,” or maybe “the culture of my profession”—trying to get new librarians’ voices heard, trying to get libraries to fix hiring practices, trying to get tech-adverse librarians to be more open to technology, trying to get both libtech and “pure” tech to be less evil to people who don’t fit the “cishet white able-bodied boy genius futurist rockstar” archetype, and also more mundane stuff like making sure the professional groups I care about are functioning. That third category, whatever you call it, can be a never-ending time sink, honestly, and I think my acknowledgment of that was part of why I was so sure I didn’t want another tenure-track job for so long. (Now I realize that I’m always going to be me; I’m always going to care about these things; and the key to finding balance will really be more about building things that are good for me into my life/priority list than it will be about removing any impetus to volunteer. Volunteering is rewarding for me even without tenure hanging over my head.)

The point is, I didn’t take good care of myself for years and years, and I let myself get so worked up about everything, and now I have a chronic illness. I suspect these things are related. I know my story is not unique.

I haven’t really gotten to the point where “I have a disability” or, more importantly, “I need to take good care of myself,” is a part of my self image. It isn’t that I forget, exactly (how could I? I have daily pain to remind me); it’s just that I have years and years of habits built up around driving myself to exhaustion, abusing caffeine, and continuing to drive myself until I have Done The Thing™ and I get to sleep—sometimes for weeks on end. Now, that isn’t an option. Now, when I haven’t taken at least some minimal amount of care of myself, I hit a wall of pain and/or exhaustion, and then I can’t do much of anything at all. I lose more time recovering than I would have lost just being more chill in my approach. But I never know how chill I need to be—if taking that day off or sleeping in that extra hour should be classified as “self care” or as “coddling” (or “laziness” or … pick your negative judgment). I haven’t figured out how hard I can safely push myself, or its inverse—how easy I need to go on myself—so I still feel like I bounce between “overdoing it” and “underdoing it.”

For instance, yeah, parts of the move were harrowing, and they wouldn’t have had to have been if I’d just realized “hey, I’m not going to be able to pack for days straight and then fill a truck in a day and then sleep without a proper mattress and then drive for five hours and then unpack a truck.” Just for instance. (That one should have been obvious.)

And even non-physical projects can suffer. If I forget that everything is going to move at 3/4 speed on the day after I take methotrexate, I can fall a little behind. If I don’t take into account (just for a recent example) that it’s fall, school is starting, people’s kids are sharing germs, and I’m going to catch everything anyone brings within my vicinity, again, I can fall a bit more behind. And if I forget that I need a full day to recover from a long trip, I can end up with a slow day modifier, pain, and an illness.

Besides not knowing how far I can safely push myself, I also haven’t learned what new multiplier to put on my project estimates, or how it varies by time of year, yet, and that frustrates me.

And now let’s talk about planning social things

I don’t have as much to say about this one. I run out of spoons sometimes. I have to pick and choose, and sometimes even when I pick and choose, I end up not being able to go to the thing I thought I’d saved spoons for. Really, Christine Miserandino (the author of that article) does a better job of explaining it than I can, except I feel like she doesn’t emphasize enough that a person with a chronic illness doesn’t really know how many spoons they get each day.

Maybe this is a silver lining, though: I can tell you with startling clarity what priorities I have for my free time. (I should say, if I skip your thing, don’t assume it’s because you aren’t a priority. Like I said, spoons run out, sometimes completely by surprise.)

I do worry, sometimes, that my having said “no” to too many things—or failed to make plans with people for too long, out of exhaustion or for fear of flaking—has lost me opportunities for fun at other times. I’m an extroverted introvert, or maybe the reverse of that; I need time alone, but I also need to get out of the house and to see people. So social plans, like project plans, end up being a hard line for me to balance.

My newest genius idea—spawned more because we have a new bird in the house, who’d rather we don’t spend the evening away, than because I was really thinking about how to meet my own needs—is to somehow set aside money to upgrade our TV (currently a 20″ monitor) and then invite friends over to watch “Arrow” and “The Flash” with us each week on Hulu. Let people bring their own food if they want. Get them used to a not-perfectly-clean house (while I often wish it were otherwise, an uncluttered house is not as high on my priority list as you’d think). And then it’s a way for me to hang out with folks that’s also low-stress/low-spoons.

But, like… this is what I’ve come to. I have to have “genius ideas” to make sure I get enough socializing to keep me sane, but not so much that I end up more tired and sick.

Being sick stinks.

Published indisabilityhealthon a personal note

One Comment

  1. Sparkly Librarian

    A lot of your points resonated with me — I’m dealing with a chronic illness, a couple of medical complications, and a hopefully-temporary-but-visible physical disability right now, and I skipped my friend’s Halloween bash because I didn’t feel up to navigating boisterous crowds on public transit with my cane and pain meds. Also the house is a wreck and I take twice as long to get anywhere as I’m used to (unless I spend a lot of money). So I’m trying to lower my self-expectations and take it easier so I can heal and manage the ongoing issues better. Bouncing between “overdoing” and “underdoing” is part of that learning curve.

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