A life, horizontal

The view from my bed

Photo by Bruno van der Kraan on Unsplash

One of the biggest changes in my life over the past three years since I first realized I was experiencing severe Long Covid (LC) symptoms was the geospatial orientation in which I now experience a lot of my life.

I’m writing this post in bed, my head propped up by two pillows, lying down on my side with my laptop balancing precariously at an angle on my knee, utterly exhausted.

I stare at the blue walls in my room. I didn’t choose this color. There’s art on the walls that isn’t mine and I don’t like it, but I’m too exhausted to change it. I’d like to spend my limited energy elsewhere. There’s so much stuff crammed into this room - all of the things I brought home when I unexpectedly moved back home - but it can hardly fit. I stare at my closet from across the room. Full of beautiful dresses I may never wear again. What’s the use? I don’t go out, I don’t eat out at restaurants, I am too tired to go anywhere, anyways.

I’m living at home - in my childhood home - after having had to move back a few years ago when I developed LC and could no longer sustain or support myself financially. I don’t want to be here (home) and don’t want to be here (my bed).

While the chronic fatigue that has plagued a lot of my LC experience has been improving over the past three years thanks to time, acupuncture, patience, panchakarma, diet, and god knows what else, it still wreaks havoc on my day to day, when I least expect it and when I least want it to.

It’s not just that it saps all the energy I have to want to do things, but it leaves me with a feeling of utter anhedonia. I am not suicidal, but it’s hard to know what’s worth living for when I feel like I can no longer accomplish most things I want to do.

When I have time off from work, I have such little energy or motivation, I spend hours watching Netflix. I feel my brain rotting in real time (on top of the brain damage from multiple Covid cases), and I don’t want to live like this, but the energy it would take for me to identify other activities and begin said activities often feels too out of reach.

I want to spend time with friends, but the thought of reaching out, coordinating plans, and ensuring Covid-safety (since most of my friends do not take Covid precautions) feels too daunting. Most people no longer reach out to me.

I want to create and produce music like I used to. But I can’t even bring myself to open my music software.

I want to go to sports classes at the gym down my street, but I don’t have the energy to last a full yoga class, and I was always the only one that masked when I used to go. People thought I was unfriendly and gave me weird looks, but I was really only trying to prevent my health from getting worse.

Last year, I did a 10 week course of cognitive behavioral therapy for insomnia (Covid/Long Covid can lead to sleep disturbances, including insomnia). I learned that I should only use the bed for sleep and sex (lol…as if that were happening in my life as a CC person), and nothing else. So actually, most times when I have to be horizontal, I go to the floor. It’s uncomfortable, but I want to keep my bed psychologically pristine, since I already have so much trouble sleeping.

Sometimes I watch tv in bed on my laptop, and I sometimes eat in bed because I can’t unmask in the other shared spaces in my house, I listen to music in bed, I call friends from bed, I read in bed, I scroll through social media in bed, I write Substack posts in bed. I feel bad doing all these things in bed since I’m not saving it for sleep like I was taught, but sometimes the floor is just too much.

I’m doing all the things I shouldn’t be doing, and I know it’s all probably making my sleep worse because I’m forming subconscious associations with my bed that are stimulating rather than relaxing. But, it’s even more depressing to have to lie on the floor.

My life is horizontal now. Not every day and not always. But I feel a bit trapped. I’ve come to sometimes loathe my bed, even though it’s spacious and comfortable and soft and supportive. It’s hard to want to go to sleep at night when you’ve already spent hours of your day horizontal on the same surface.

I’m resentful that I have to spend so much of my time being horizontal. I want to have the energy to do things again, but also the will and drive and excitement to, but I’ve lost all those.

I spend hours in bed but don’t feel rested. I don’t feel like I’m doing anything, but I’m still exhausted. The fatigue almost becomes emotionally draining too.

I’m scared that once I am finally recovered from Long Covid and the associated chronic fatigue that I will be so used to being alone and in my room, that I won’t know how to socialize anymore, and I’ll be more comfortable on my own than with others. I can already feel it happening.

I’m scared that my mind and body will continue atrophying and one day I’ll lose both the ability and will to be upright. I miss living a vertical life.

Note: Most of what I write is stream of consciousness, mostly because I’m too tired and brainfogged with my LC and ME/CFS, but also because it’s a nice experiment to be (mostly) unfiltered. Thanks in advance for excusing any typos, spelling mistakes, etc.