Seriously? Nobody wishes they were sick. Well, maybe when you were a kid, and you just didn’t want to do something such as go to school. But now we’re all adults, and we don’t have to go to school if we don’t want to. So what’s going on here?
As I was waking up this morning, I moved around in bed to see if the vertigo was acting up. Yep. How about brain activity: present or absent? Present but minimal. Energy? Ha. Lost track of that months ago. Should I call the doctor? Ha. I could say something like, “I don’t want to go to school today.” And she’d say: “Get dressed and get out of here.”
Seriously. What is this? Is this what it feels like in the months leading up to a diagnosis of something serious? Or is this what it feels like to have one of those chronic things that never gets a name? If it’s the former, OK, great. At some point, I’ll get a diagnosis, and the amazing American medical machine will gear up to poke me and prod me and take images of me and schedule one appointment after another and rack up amazing bills, and maybe it will all work and I’ll get cured or at least get better.
But: if this is a chronic thing that never gets a name, then what? I could spend my own money trekking around town to various people with various titles (some they’ve bestowed on themselves) who want to sell me various products or procedures or tests that will give me ambiguous results but fail to give my condition a name or a cure. Or maybe they’ll give it a name, but not a cure, but I’ll convince myself I’m just enough better to justify spending yet more money on their tests, products, or procedures. Or maybe I’ll just settle in for the long haul.
Long Haul? Isn’t that one of the names given to people who caught Covid and failed to fully recover? Yes, Covid Long Haulers. Am I one? I don’t think so. I caught Covid in early August, got Paxlovid, and recovered quickly. Did I recover fully? Yeah, I think so. I don’t remember feeling like this, but we were traveling at the time. When we got home, I was tired from traveling, as usual. I didn’t have vertigo then. I’m not sure what it would feel like to have a fully functioning brain because I’m a bit scattered in the best of times, but I think I felt OK. I was still taking walks back then, so I had some amount of energy.
But then there was that Covid booster in mid-October. I’d had a bit of vertigo before that, but only as I was going to bed. It wasn’t interfering with anything. Then, the day after the booster, I was sicker than I can describe with the most intense vertigo ever. Better the next day, and the next. Then I saw a PT and got worse (yes, worse). ER, Rx for nausea, and it’s been on again/off again since. I had 48 gleeful symptom-free hours following a massage, but then it’s been on again/off again since. My walking stick is by the door for days like today when I don’t even want to walk to the elevator without it.
A friend with ME/CFS loaned me “The Invisible Kingdom: Reimagining Chronic Illness” by Meghan O’Rourke. Am I just trying on the experience of chronic illness which she so articulately describes? Oh, please, no. If so, I don’t want this role! Let me out of here! I’ve had other experiences that have taken months and months to right themselves (broken leg, broken foot). But they were so definitive: See this fracture here on this X-ray? We’re going to fix it! And yes, eventually, I was fixed.
Today, I’m wondering if this was how my father felt in the months before he was diagnosed with a form of chronic leukemia. Was there just a malaise that slowly settled over his life? Was there a pain that couldn’t be attributed to anything in particular? Was his brain less clever than it had always been? I wasn’t home then, so I don’t know what the prelude was like. But today I wonder.
I have a previously scheduled appointment with my primary care doc in two weeks. I’ll find out if the lung nodules that appeared in my ER X-ray have resolved. I’ll tell her that the physical therapist who specializes in vertigo has told me he has no new ideas to resolve my persistent vertigo. I’ll tell her that when my brain is working so hard to figure out where I am in space, it can’t seem to do anything else I want it to do. And I’ll tell her that I don’t want to be chronically ill. What ideas will she have for me? Anything useful, or just a shrug?