I left the house today. I’ve been itching for a thrift store trip but just haven’t had the energy. I only have enough energy for a few hours out of the house every few days. Last week, I spent two hours in line for an oil change on Monday and crashed hard when I got home. I didn’t leave the house again until Saturday when we had lunch with my parents at their house. Crashed pretty hard pretty quickly there too; we left after less than 2 hours. The week before I left for a grocery store run and to see our parents for the holidays.
I used to be someone who was out of the house for long hours every day. In my 20s, I usually worked a second job and had dinner at a restaurant with friends multiple evenings a week. I’ve worked a lot of community-based jobs where my car is also my office and my alone time between client meetings and I *loved* it. I loved driving; I loved packing for the whole day so I could efficiently travel from one place to the next; I loved singing to the radio alone on the road. I loved being out in the community. In my youth, I loved spending a Saturday riding the 21 from Uptown to buy myself lunch at the Midtown Global Market with just my thoughts, headphones, and a camera. Or driving around photographing the city. My partner and I used to do weekend warrior day trips down country roads and spend the whole day driving, purposely taking the scenic routes. I explored abandoned buildings, attended protests, got arrested at some of those protests, saw theater, worked at homeless shelters, road my bike for dozens of miles at a time. I worked in community mental health and made a solid effort at photographing every single building in St. Louis that caught my eye while I lived there. I love(d) being in the city; taking the world in. I love(d) street art and public murals and working class people and architectural photography and trying as many great restaurants as I could.
And now- now I hate to leave the house. Leaving the house requires me to activate my nervous system in a way that feels unsafe because I have an exertion-based illness that can get bad very quickly when I’m out in the world. Leaving the house means, as Leah Lakshmi Piepzna-Samarasinha put it, “massaging our limits” or something like that. Like I can’t actually *afford* the exertion of leaving the house and almost never do- certainly not for something that isn’t essential- but I can sort of stretch my limit from time to time. It means that since I left the house today, I’ll expect to feel horrible tonight and tomorrow and probably the day after that even though I only finally stopped feeling horrible today for the first time in days. Today I did the thing I’m increasingly averse to doing so I could go browse the local thrift stores and buy myself melatonin from the Walgreens. Just for a little tiny taste of my old life when I was out in the world more than I was home. Largely, though, I prefer to be home.
I know we live in the strangest iteration of pandemic conditions we’ve seen so far so I know many people are still home a lot more than usual- even if they aren’t literally housebound by their illness or impairment- but “home a lot” and “housebound” are really different things. I’ve been feeling closer to housebound than merely Really Well-Suited for pandemic life for months now. Last week, when I got the oil changed, I started crash so hard and so quickly at the end of the two-hour errand that I forgot how to get home. I had to pull up the map when I realized I had been driving in the wrong direction way past a turn I had missed and ended up in Spring Lake Park instead of North Minneapolis where I live. It’s not like I was in an unfamiliar part of town, it’s that my body and brain had over-exerted and were just shutting down everything and fast. My brain could no longer figure out how to navigate home.
It’s also not just cognitive decline that happens in a crash though in those moments, I feel like I have early Alzheimer’s (something that is already documented in the covid research literature). It becomes hard to talk and my speech gets jumbled. I lose fine motor control, my legs start wobbling and struggle to maintain my balance, and, on more than two occasions, I’ve had urgent, side-of-the-road diarrhea. Welcome to the Undignified Covid Things club.
This is how post-exertional malaise (common in Long Covid and also the hallmark feature of ME/CFS) can take a completely mundane thing like an oil change and suddenly turn it into something very disorienting and briefly terrifying. For me, this happens after about two hours; three on a good day like today. Two to four hours out of the house results in two to four days of recovery time: I won’t be able to change out of my sweatpants, shower, cook, wash dishes, focus on anything, or socialize. I’ll only be able to do things like watch mediocre television, play low-attention cell phone games, and nap. I find that the experience of post-exertional malaise to be extremely difficult to imagine unless you’ve experienced it yourself. It is so much more profound and more debilitating than “chronic fatigue” could ever convey.
So I don’t leave the house much anymore because it’s bad for my health but I did today because it’s good for my health, too.
[…] couple afternoons. It feels harder to make my brain do certain kinds of thinking- I mentioned in my last post how I had a panicked moment where I couldn’t remember how to get home. Even here at […]