An old friend of mine and I were catching up recently- she is a neonatologist raising three children of her own; i am currently a Long Covid loaf- and she asked me “so! how are you spending all your time these days?” I’ve been trying to think about how to answer that. Like it’s clear this woman, who is just this side of a superhero herself, has never in her life had as many hours of “free” time as I have right now and really was struggling to even imagine what I do with myself. I understand her confusion because even I find myself wondering where all the time goes even as I do almost nothing to fill it. So let’s just take a look at how my day went today.
I woke up around 9:30am? I think? I took an ibuprofen PM for that sweet benedryl sleep support around midnight last night so I’ve slept around 9 hours. I pull on a shirt- it’s a shirt I’ve worn probably 4 out of the last 6 days around the house and it’s covered in stains. I stumble my way downstairs and sit down on my designated spot on the couch. My backpack is tucked in between the end of the couch and the bookshelf; it’s where I keep my books, journal, meds, and all the stuff I need daily. The backpack follows me around the house. I doodle around on my phone playing many many rounds of Two Dots and firing off a few tweets- suddenly it’s 11am.
By 11:30am, I’ve placed an order of junk food through DoorDash- I left the house yesterday and I have to leave the house tomorrow so there’s no chance I’m leaving it today as I need to save up my energy. I cracked open my book- The Selected Works of Audre Lorde- and read around 40 pages. That’s a lot for me to read in one sitting and I could tell I had overexerted trying to concentrate on her beautiful words because my face had flushed bright red and body pain was creeping in everywhere.
Around 1:30pm-ish (awareness of time slides away faster than you’d expect), I packed my backpack with my book and my junk food and hauled it upstairs and set it next to my bed where I laid down. I brought my computer up thinking I might try to write a little but ultimately couldn’t focus and really just needed to rest. Late afternoons tend to be my most symptomatic parts of the day. I floated between daydream and sleep until about 4:30pm, waking with a startle to the sunset in our west-facing bedroom window.
It’s 5:42pm as I’m writing this now. I ate a little more junk food when I woke up. It’s dark outside now. I have a second block of mental capacity now after resting for a few hours- just enough to fire off this post. I’ll probably haul my backpack back downstairs to my designated spot on the couch for the evening. I’ll eat a sandwich; I’m not hungry exactly but all I’ve eaten today are Cheezits. I’ll smoke weed, scroll my phone, listen to music, or maybe get into something on Netflix for the rest of the night.
I’ll haul myself back up to bed probably around 11pm tonight. I’ll likely struggle to fall asleep, especially if I don’t take the benedryl. Tomorrow I’ll likely wake up around 9:30 or 10am and repeat much of the same routine as I had today.
The monotony wears on me. My brain and spirit often have dreams and hopes and ideas that my body cannot support and it feels like such a lifeless way to exist. The thing about exertion intolerance is that if you really are careful with yourself and don’t think too much, don’t do too much, don’t emote too much, you can kind of feel ok. I didn’t have any major symptoms, I didn’t have a significant crash today, it was just… an average day. Thus it’s a dance between protecting what little energy you can store up and fighting off the moody doldrums that come with such a deeply rationed life.
As I said to my friend, “it often feels like I’m just killing time”.
Post-exertional malaise, systemic exertion intolerance, profound post-viral fatigue, and the flattening effects of Long Covid are all very hard to explain to people who have not experienced them. Here is ME Action’s MEpedia page about post-exertional malaise.
Random reader says
Why are you just eating junk food? Send Jobi out to get some real food. No wonder you have no energy and money. You better start trying to get your act together. Friends and family are not going to pay for you to loaf forever.
rachelisthinkingoutloud says
The familiarity of this post suggests you know me personally but are still too cowardly to post this with your name on it.