Yesterday, both my husband and I took two naps (different times & places—get your minds out of the gutter, folks).
We didn’t want to. It wasn’t like a relaxed day after Christmas when you get up, eat, doze, eat, doze, eat, repeat. We both just could no longer do what we needed and wanted to do: for me, write, prep for my online poetry workshop, submit work, etc; for him, remote aeronautical engineer work (don’t ask—I don’t ever really get it). Our bodies were just so tired that our brains weren’t functioning.
Yeah, I’m not the only semi-invalid in our house. For me, it’s ME/CFS, and for him, it’s long COVID. He got COVID in December 2021, and save for a couple of miraculous weeks on two different occasions, he’s been so exhausted that he gets out of breath walking from the bedroom to our home office, or taking a shower, or cleaning out the litterbox (which he insists on doing because the dogs are my domain, and the cats his). It’s harder for him than for me, I think, because I’ve had ME/CFS for over thirty years, which is a lot of time to get used to it. He’s still hoping to suddenly recover, like some folks with long COVID seem to do.
Me, I don’t have any hope for recovery. I’ve been considerably worse for the past 3.5 years, enough so that I put myself through the merry-go-round of doctors again, only to be told that it’s not rheumatological or neurological. I’m beginning to really appreciate the first doctor who diagnosed me (and my mother and sister) in 1990; he considered CFS a real disease, and tried different treatments to help. One was an intramuscular injection I gave myself in the thigh, which shows just how much I wanted to get better. But most doctors then, and a lot of doctors now, still think ME/CFS is “just depression” because nobody knows much about it, including how to make a patient feel any better.
I’m reading an absolutely brilliant book about this disease called American Breakdown: Our Ailing Nation, My Body's Revolt, and the Nineteenth-Century Woman Who Brought Me Back to Life by Jennifer Lunden. I’m only about a third of the way through, but I can’t even express how much I love it. Lunden weaves her own experiences with a lot of fascinating, detailed research that brings together the America of 150 years ago and the America of today, exploring potential causes, treatments, and attitudes that span multiple generations. So far, my favorite quote is this: “It was during this time, when I was delivering those speeches [to grad school classmates about multiple chemical sensitivity] and learning about the interconnections between people and systems, that I first began to understand that my illness was not just about me, my weakness, my infirmity. My illness was about us, about what we’re doing wrong, about what we are being called to rectify.” Hell yes! Preach, sister!
Honestly, over the years I tried so hard to write about my own illness experience. Sometimes I read over what I’d written and threw it out, deeming it “whiny.” Sometimes I got a paragraph in and simply stopped, unable to analyze or even admit the effects of this illness on my life. Luckily, Lunden has written the book I never could have, because I didn’t have the mind for research, the tenacity in tracking down information that’s spread out across centuries. I just wanted to be a poet and college professor and forget about my illness when I could.
I believe it takes courage to live with any chronic illness or physical difference. Human nature makes us want to fit in, to be able to do what others do, to look like those we hold up as ideals. But as the Ozempic I’m taking melts off the pounds—11 in the two months I’ve been on it—I find myself remembering what I’ve read in so many papers about weight: people who lose weight are not happier for it. They expected to be, and everyone else expects them to be, but they’re not. It becomes just a difference, not a gift.
My stomach still hurts most of the time, though not as acutely as it did in the first week I was on a 1 mg dose of Ozempic. There are days I contemplate just stopping Ozempic, gaining the weight back, and not worrying about it anymore. But then I remember I’d likely have to go on a medication to control my blood sugar, another to control my cholesterol, and another for my blood pressure. I’m going to keep trying for a while longer, and see if the side effects diminish.
But I do want you to remember that no matter what your body is like—healthy or not, large or small—you’re still part of us, affected by the systems we’re all living in. That idea continues to be a revelation to me, opening doors to new understanding of the fraught experience of living in a body in the 21st century.
Thanks for the book recommendation! I'll definitely be ordering that.