“The Morphine’s Girl”, Santiago Rusinol, 1894.
I’ve spent the past month or so coping with deep, relentless fatigue. I wasn’t necessarily sleepy or sleep-deprived. My bones felt heavy, my body as if it were moving through thick mud, my head too light and wobbly. I tried resting. I tried napping. It would get a tiny bit better, and then it would get worse again. Nothing really helped.
A couple of weeks into it, I was diagnosed with a minor infection, and thought maybe that was the explanation. But clearing the infection didn’t resolve the fatigue. I already deal with a baseline amount of daily fatigue and have to ration my spoons carefully to get done the things I want and need to get done. But this took most of my remaining spoons away. A lot of things piled up. I tried not to feel guilty. I failed.
During this period, the disability rights activist Jessica Kellgren-Fozard released a video on pacing when you have conditions that limit your energy levels. Maybe I’m just not pacing myself enough, I thought. I need to rest more, build back that store of energy like she says. I tried. My tank remained nearly empty.
In late March, I went to a retreat that I’d been looking forward to for ages. Although there were opportunities to make art, write, and engage in gentle movement, I wasn’t up for any of it. I spent mealtimes trying to catch up with friends and fond acquaintances. Otherwise, I mostly laid in the narrow bed in my room and looked out the window at the back garden and trees.
At home, it was much the same. I spent the bulk of many days in bed, either writing, chatting with friends online, or watching TV shows and movies, watching the birds and butterflies and squirrels and bumblebees outside in the garden, wishing I had the energy to go for a walk or tend to the plants outside.
Even so, I managed to get a few things done. I finished a couple of sewing projects and filmed them, to make videos about the process. I picked away at a new draft of the book I’m writing, about San Francisco’s forgotten cemeteries. I researched potential publishers and started a book proposal. I wrote an article that I’ve been researching, off and on, for a few months, and I started research on a few other ideas. Maybe I should have rested more. But I also wanted to do things that make me happy, and these are things that make me happy.
Finally, I saw my doctor. I’d put it off because it’s so hard to pin down what causes fatigue, and I wasn’t sure it would be a good use of my limited resources to talk it over with him. We spoke on a video call. He wondered if maybe my sleep quality was worse, but conceded that I probably didn’t suddenly develop sleep apnea. He also wondered aloud whether it might be some kind of post-viral syndrome. I didn’t remember having any particular viruses before the onset of the fatigue, but I’m so well immunized against Covid that I might not notice if I was exposed to it again. Finally, he asked me to come in for a bunch of labwork, including tests for anemia and B-12 and Vitamin D deficiency.
Although those tests all came back normal, I learned in the interim that another medication I’m taking can cause poor absorption of B-12, and that lack of folate supplementation can also make things worse. As an experiment, I started taking extra B-12, folate and Vitamin D, as well as electrolytes daily. I’m beginning to feel better. Whether it’s because of the supplementation, because whatever was causing the fatigue has run its course, or something else, it’s impossible to say.
And it’s hard to trust that it will last. When this latest round of fatigue came on, I was just getting my energy back from the Covid-19 booster I got in early December. I’ve written about this before, but each vaccination has caused me some kind of flare that feels like my fibromyalgia kicking up for weeks at a time. This time, it lasted more than two months. Another doctor I’ve seen this year, one who works closely with fibromyalgia patients, confirmed that she’s seen this reaction pretty often. After all, she said, this virus is still new to our systems, and the vaccines kick up a pretty hefty immune response, especially in those of us who have aggressive immune systems to begin with.
One bright spot in all this: One of my favorite writers, Johanna Hedva, released a revised and updated version of their incredible essay, “Sick Woman Theory,” earlier this month. The earlier version created tidal waves of awareness when it came out in 2016, and gave me a lot of language I didn’t have before for my experiences of being in my body. It also seeks to answer the question: “How do you throw a brick through the window of a bank [in other words, engage in meaningful protest] if you can’t get out of bed?”
The revision is accompanied by a new essay, “Why It’s Taking So Long,” about Hedva’s experiences being asked to give talks and teach about Sick Woman Theory since the piece came out, and their struggles to create accessible spaces for those events. Hedva eventually hopes to publish a Sick Woman Theory book, but all of these shenanigans have gotten in the way. Seriously, why would a venue refuse to provide a sign-language translator or audio captions? Or not give a disabled writer enough lead time to deliver on a project? Or not compensate them adequately for their work and/or expenses? This is someone who must already ration their time and energy carefully. It’s a frustrating, and illuminating, read. I hope event organizers are paying attention.
So, here I am, hopefully feeling better. Maybe now is the time for pacing, now that I’ve got some energy to pace, to build back. But there are so many things I want to do.
Please don’t send me notes of pity or regret. This is part of life, and it’s something a lot of people go through. I know such messages mean well, but they have a way of reminding me that many don’t understand what it’s like, outside of the flu or recovering from surgery before bouncing back to full health. It’s a reminder that too many people see disabled life as inferior. It isn’t. It’s just different.