long covid and going nocturnal 🌙

Posted on Dec 6, 2021
tl;dr: long covid can trigger a delayed sleep phase disorder - so fuck long covid tbh

Sometimes I think, oh wait, I shouldn’t speak so openly about my health on the internet. My enemies will celebrate my bad luck; I might lose out on future jobs if people know I’m a little weakling nowadays! But I’ve found it really, really tough to follow along with any personal accounts of Long Covid and putting words onto the Internet might help others figure things out for themselves.

The words I want to put down today are about my sleeping pattern. I’ve gone fully nocturnal and it’s bizarre. Jsyk, I got sick January 2nd 2021. From the second week of active covid, I started noticing that after being glued to the couch all day, heavy and in pain, I was getting these strange waves of energy at night. Come 10pm or so, I’d have a boost of energy. I’d feel a little lighter. My head would clear up and I could think again. I started finding sleep unappealing because being awake late in that lighter state was such a massive relief.

And basically, ever since that 2nd week, it hasn’t stopped. Dead with fatigue in the daytime: a body made of metal, existing under its own special gravity. The dark would always set me free. So fucking weird. But all year, I’ve looked forward to the night, waiting for the better body feelings. I didn’t know what this meant. I called it my nighttime energy, and I knew it must be a Long Covid thing but whenever I searched for things, I couldn’t find an explanation. And I didn’t know if I needed one at that point - I was kinda just interested to know. Having labels can make it easier to explain the weirdness to other people, though. ‘Nighttime energy’ sounded kinda juvenile and vague.

When autumn arrived, I lost my patience with the daytime heaviness. I felt like I was starting to go mad always waiting for things to feel better when they would instantly be taken away from me… so I stopped setting alarms. I wanted to enjoy the night more, and then I thought maybe this could be an experiment and a moment to find where my natural body clock was sitting. I VERY QUICKLY got into a routine of going to sleep at 8am and waking up between 4-5pm. And in that quick, bizarre lifestyle change, I realised just how bad things had been.

In going nocturnal, I arrived at the good hours much faster, plus I had more good hours to play with in my new day. My appetite also returned. I honestly hadn’t realised just how bad it had been all year until that moment. In going nocturnal, my head became faster and clearer and my speech got better. Like, brain fog didn’t have such a hold over me - and I became less clumsy too. It was like my circadian rhythm had totally flipped, and that made it easier to google some things. I found the wikipedia page for Delayed Sleep Phase Disorders; I read that DSPDs can be triggered by viruses too, and it clicked. All year, I’ve been awake when I should have been asleep and I’ve been asleep when I should have been awake. No wonder I was slurring my words, having trouble thinking, walking, living. I was in a mad jet lag existence. I broke out of this nightmare (kind of) when I went nocturnal.

In going nocturnal, I have also had the deepest sleeps of my life. How crazy is that? I have never been a bad sleeper. I thought I slept well, but again, I never knew any different. In these first two months, I have slept like I’m dead, turned off, pure un-electric standby. It makes me think this tendency to DSPD has always been in me, waiting, and maybe Long Covid just pushed the piece into place. I don’t know. I have also noticed this gradual lifting and strengthening, like the longer I stay awake the better I feel. And sometimes I think I should just stay awake forever.

But yeah I felt like I had come back into my body, like I was really back. I accepted a big writing commission and I spent that first month nailing it because I could finally think. I was so excited to find a big, new way to take the edge off so many of my Long Covid symptoms. I was enjoying life for the first time in a while and feeling present. It’s been just over 2 months since I stopped setting an alarm now. I would love to say ‘yay, it’s going so well, I’m just going to live in the dark because it continues to feel great.’ But I can’t carry this on, lmao. When I read about DSPDs, depression was mentioned over and over again as being a long-term effect of this isolated state. I thought, nah, I will be fine. But that warning sign is flashing brighter and brighter and so I am backing away.

Reluctant, awkward, anxious too. I am going to try and go back to the daytime — if I even can. It’s been a really horrible decision to make, stuck between a rock and a hard place; the hard place being the zombie in pain who can’t speak properly but gets to see the sun and other people, and the rock being a kind of freedom that also means total detachment from the world to the point of lunacy (lol). I have loved being nocturnal because of the way it made my body feel but I’m also struggling to make doctors appointments and other daytime things that are also supposed to help me. More than that, I miss other people; my relationship feels suddenly long-distance and I hate it. I also miss knowing what day of the week it is (see, now that my days change in the middle, words like ‘today,’ ‘yesterday’ and ‘tomorrow’ mean nothing).

Everything I’ve read about trying to pull out of a DSPD rhythm says I will snap back to it in time. Maybe the way I live going forward is going to have to respond to that, going back and forth between the day and the night. I don’t know. I’ll follow up with the results here I guess. I hate Long Covid and I hate that this is what my life involves now, deciding whether to feel bad or worse, weighing shit to no end. But here we are. Might as well write about it.