Long covid diary week 289

A full 289 weeks have passed since my covid infection began. Or, 2,023 days, if you prefer. Today is day 2,024, the first day of week 290.

I don’t know if I’ll actually post this, or just write it. But woke up today feeling awful and just felt like putting my thoughts into words.

This week has been pretty rubbish, physically.

It’s Friday today. For most people that probably means “Friday feeling”. Greeting people with “happy Friday!”. Asking about evening and weekend plans. That is a feeling I experience only rarely. Friday is usually a pretty poor day for me, as it comes after four days of work. By the end of the week I am usually completely smashed. Going out on a Friday evening feels like a long-distant memory.

Last weekend was a bit poor. Not the worst I’ve had, but I struggled. Was feeling pretty low, and didn’t have a ton of energy to do much. But, I tried my best. And achieved the most important thing for me every weekend: preparing a batch of soup to last the week so I don’t have to spend energy making lunch every day.

Making lunch is hard. You have to decide what you are having; plan out the steps; stand in the kitchen to make it. Try doing all that when you might not even have energy to stand in the kitchen by lunchtime. So: soup every day is a big energy saving, a big help.

Let’s summarise my week. Nothing on here is new or unfamiliar. This is a relatively normal week for me; below average certainly, but normal.

Monday #

Having not really recovered over the weekend, Monday was not ideal.

I did achieve some useful stuff at work, though only completed one of the two items that I planned when the day started.

In the afternoon we had our weekly team meeting. For me this is often more like a form of torture; my brain cannot hold so much information all in one go, so after about 20 minutes of people talking I begin to lose track of what is being said. It becomes physically painful. Like my brain is being slapped over and over and over. And people just keep talking and talking and I want to tell them to just shut up and stop please, please stop. But they don’t and it drags on and on. This week’s meeting was particularly hard. 45 minutes. I don’t really know what anybody talked about.

Half an hour or so after the meeting, my brain was really in pain. My cognitive ability massively reduced. Was struggling to write proper sentences using actual grammar, that kind of thing. Fortunately, I finished not long after, and rested in the evening.

Of course, the evening was very low quality and I didn’t actually do anything of any real value. The cost of being in that meeting. Managed to watch an hour of TV, but it was hard work concentrating, probably took me closer to an hour and a half to watch this much because of needing to take breaks to rest. Yes, watching TV is that difficult sometimes.

Tuesday #

Woke up feeling dizzy. Not like, the room spins when you move kind of dizzy. More like my sense of balance wasn’t working properly. Sitting down, even, just felt unstable in some kind of generalised way. Felt like my immune system was firing, felt a bit rough like when you’re unwell. Makes sense, given we’d had that team meeting that hammered my brain so badly. Ibuprofen helped, dizziness faded - but didn’t disappear entirely.

Afternoon much better than morning though and achieved some decent work and felt useful; that was good. I often feel pretty useless, so any time I feel like I contributed some sort of value to the world is a positive.

Evening was totally wrecked with exhaustion and in a significant amount of pain. Maybe one day I will write more about how this pain feels, it’s not like acute pain when you bash your arm on the door or whatever. All-over, generalised, and kind of deeper - like my soul is in pain or something. There’s a radio show I listen to Tuesday evening, the pain was so intense that I struggled to enjoy it properly, but it did help. Also probably took a bunch of ibuprofen again, I don’t know, but I imagine that helped. Again, an hour of TV; again, hard work and breaks required.

Before work, put food in the slow cooker; enough to last three evening meals. See previous comments about the benefits of not having to prepare meals every day. But that did help with the next few days, glad I invested the energy in doing that.

Wednesday #

Woke up feeling unwell. Nothing specific, low-level immune system firing rather than full illness. A bit under the weather, as we might say. Fortunately, no dizziness. So that was good.

Work was OK. Achieved some good stuff, finally managed to complete the second of the two items I began on Monday; Tuesday I focused on other stuff because I knew my brain could not process this particular task. It was heavy on investigation and writing it up to communicate with others. That kind of work requires holding a whole bunch of stuff in short term memory. Stuff like “what have I looked at”, “what have I done so far”, “what do I need to do next”. Plus the energy taken in actually doing each step. And keeping it all in short term memory in order to write it up effectively so that others can understand. But I got it done, and that felt pretty good.

Spoke to my dear friend Five, about whom I wrote a few words previously. She’s just got the most wonderful nature, truly never met anybody more special. Talking to her feels like a rainbow came out. So yeah. My Wednesday was much better than other days this week. Wonder if she’ll read this.

Thursday #

Well. Given how much cognitive burden I’d put on my brain with that work on Wednesday, it was no real surprise that Thursday was hard. Did not feel too bad on waking, but within half an hour of starting work my brain was so sore. Like barbed wire being pulled through it whenever I tried to think. Obviously, ibuprofen again. Day did improve as it went on, afternoon definitely better than morning. Achieved another important work task. And another regular radio show early evening that brightened my mood. Again, watching an hour of TV was hard work.

Friday #

Woke up today feeling pretty rough. Like, that feeling when you’re coming down with a cold (or, perhaps more precisely, with covid). Head felt inflamed, sore throat, sore nose, coughing. This is a regular thing for me, just a normal day. Immune system going berserk after having a hard few days. Don’t think I’m actually unwell, as in I don’t think I have covid. Feels like it, but no, think it’s just my immune system doing its usual thing of behaving as though I do and attacking me.

Did manage to get some food in the slow cooker again, so that will be ready by the time I finish work. Enough to cover four evening meals, so that will be good and help bring me some ease over the next few days. Especially on Sunday when I will be making a fresh batch of soup - needing to also make an evening meal after preparing soup in the morning is always a lot.

By lunchtime today I was feeling pretty terrible. Brain fog, mental exhaustion. Body shaking, reduced hand-eye coordination, some light muscle spasms. Ate and went to bed for half an hour. Actually, go to bed after lunch every day. It helps. Usually sleep, 10-15 minutes. Don’t think I slept today, so feeling very groggy in the afternoon. But resting wrapped in the duvet does help.

Positivity #

I always try my hardest to remain positive. Falling into negativity is so damaging in so many ways. But also, that spiral of negative thoughts - it takes so much energy. It’s so exhausting, and for me that has such a destructive impact on my quality of life.

So has there been anything good this week?

Five #

Yes, talking to my friend Five on Wednesday, absolutely wonderful. Talking to her would be the highlight of any week, regardless of my disability. But this week, wow. Was lovely, am still living off that.

Music #

Music really helps get me through. Lifts my spirits, calms my nerves. All stuff that reduce the amount of energy I expend. I can’t listen to it constantly like an able-bodied person might; I may be able to manage an hour before I begin to struggle with the energy requirement of listening.

Listen to a few radio shows regularly; the station plays about 50 minutes and then goes into ad breaks. That allows me to rest my brain. Suits me. The shows this week were good, though I was in a lot of pain for some so did not enjoy the time as much, but it helped.

Bought Paradise (2024), by Purple Disco Machine. Such a joyful, free album. Pure uplifting sounds, like 80s freestyle filtered through Daft Punk. Listened to it three times already, not a poor track on there. Also today been listening to a bit of Louie Vega’s Expansions In The NYC (2022) that I bought a few months ago. Some lovely, soulful deep house vibes; lots of musical talent on display here, by one of the masters.

Walking #

In early summer, there was a work project. Brutal for me. By the end I couldn’t leave my flat; the final two weeks I was trapped indoors except for one time going out for maybe ten minutes. I still haven’t fully recovered from that. But I have been out walking 2km every day for about two months now. It feels like a really big achievement, considering where I was in summer. This week there were a couple of days the sun was warm, managed to sit in it. Life is much easier when it is sunny.

Colleagues #

I have some really supportive colleagues, who really make a big difference to my quality of life. I don’t communicate this to them often enough, but I will try to do better.

Cover image #

Not enough spoons right now to pick one. I don’t like it being empty. Will try to fill it later.