Content note: talks about death, disability, chronic illness, exercise and fitness
I thought I would write a blog post about my experience with Long Covid, which is still debilitating and significantly affecting my life 8 months after infection. I *think* I am still gradually and slowly improving, though it may also have reached a plateau I will never improve from, there isn’t enough change month-to-month to tell. In December, I was wondering whether it was realistic to think I might be able to swim by the end of the summer, at the moment, I don’t think it’s likely I will swim this summer.
It’s a fluctuating condition, and I have it worse than most people think I do, because most people only see me at the better side of things. At my best, I can half-participate in a martial arts class, go for a slower run with walking breaks, cycle at medium speed and do little bits of bit of parkour. At my worst, I can’t concentrate on something for more than five minutes, have to go slowly up stairs, and can’t even walk at my normal speed. A couple of friends who visited in December saw this side of me, walking up stairs in a tube station at the speed which might be expected of a normal person or going slowly up the stairs in my flat on my hands and knees.
I don’t have it as badly as some people have it – if I don’t exercise or do anything that might cross my limit, I can walk around normally. I still remember sometime in my second month after Covid when I realised I could walk a lap of my nearby park at normal speed.
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I’m another of the stories of someone who was quite a fit young adult and hit by Long Covid. I got infected in April 2022, 2 years after the pandemic first hit the UK and about 6 months after my third booster shot. I was lucky in the earlier stages of the pandemic (we are still in a pandemic!) that I got a vaccine quite early on in the rollout because I did some work with vulnerable young people at the time.
I caught the virus from someone at a friend’s birthday party. If he had been more responsible – ie, not turning up when ill – then I would be better off. (Tip: if you are ill with anything, even if negative on lateral flows, I think you should stay home; I should have avoided this guy.) He wasn’t particularly careless; I think about half of people would have done the same as him, it’s only a handful of my friends who will stay home if they are showing any signs of illness. On the day of the party, he was coughing a lot, spoke about being unwell, and had a nap. When we asked him whether it might be Covid, he said he was sure it wasn’t because he had had it before and it felt different this time, and he had done a lateral flow test the day before and it was negative. (Lateral flow tests are maybe only about 50% actually useful, and it seems most people don’t realise that they are not a source of truth, just an additional data point with limitations.)
The acute infection was moderate. Not mild, but not terrible. I never struggled for breath, I was feverish for less than 24 hours, and while I was quite fatigued, I was able to stand for about a minute at a time and so could feed myself okay. The acute infection lasted a total of three days of whole body effect. After it felt like my overall body was recovering, I then lost my taste for about four days.
The fatigue, and other effects which came from Covid, never left. To this day I still have a handful of PACS (Post-Acute Covid Syndrome, another term for Long Covid) symptoms, which I now know the names of from reading through lists of PACS symptoms: headaches, Postural orthostatic Tachycardia Syndrome (PoTS, when you stand up and move from being still and can’t adjust to the change), fatigue, cognitive impairment and post-exertional malaise.
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Many have described the ‘brain fog’ of Long Covid (and other conditions), but some months ago, I saw a twitter thread about how we describe our symptoms and how ‘fatigue’ and ‘brain fog’ sound relatively normal. ‘Exhaustion’ and ‘cognitive impairment’ were suggested instead, which convey the severity better: my brain is not working properly.
My memory is affected, I often can’t recall words, facts, things about people. I know that I know them, but they do not appear in my conscious mind, sometimes appearing a couple of hours later. This is a normal feature of memory of course, it just happens a lot more.
If I have to concentrate intensely on something, like reading something difficult or a conversation, my brain hits a wall at some point. Never before have I needed to nap due to reading. Reading an academic text, I can do about half an hour before needing a short break, and after about two hours (which is about 70 minutes of reading), I need to wait about three hours before I can read again. I now have a ‘morning chunk’ and ‘afternoon chunk’ for any brain-involved work (menial labour is fine). If I have a flare-up, it’s worse, and I can’t do anything for more than about 5 minutes.
I also still get headaches after exertion, but for the first few months, I had them probably more than half of my awake time. I also now sleep for longer – 8.5-9 hours, up from 8 hours each night when well rested.
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In some ways, my life has massively changed: instead of trying to exercise every day and pushing myself when I do, on the occasions I do some exercise I have to hold myself back, and often still end up doing too much. When it flares up, I can’t exercise for a day, and my brain stops working properly, often having to take a day off work as a sick day.
In other ways, my life has not changed: I am actually currently doing a PhD, so while I still say to myself “today is a sick day”, most of the time I’m not actually cancelling on any work anyone else expects of me. I already had a chronic fluctuating health condition, which occasionally meant I had to cancel plans or be unable to work, and I was already living as a chronically ill person who would manage their condition by thinking about plans and tasks based on how much I have to do them and only doing those I had enough capacity for that day. Yet whereas my other condition would flare up once or twice a month, now it’s about five times that I have a day of it being flared up.
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It’s both incredible and totally everyday that there is still not that much public knowledge about Covid-19. A year after the pandemic started, even the official advice still ignored the fact it spread primarily through aerosols, not touch, with a nonsense belief that being 2m apart from someone would magically protect you, and it was widely considered to primarily be a respiratory condition.
Covid-19 is a multi-system condition. The respiratory effects 10-20 days after acute infection might be what killed people most obviously, but it can also cause damage to other organs, including the heart, the vascular system, the brain, and other organs – people can die from organ failure some months after acute infection. For me, circulation and brain are the main things I can notice being affected.
When we change our rate of exertion, there is a usual response in our body to adapt to this. My body does not do this very well. Someone who goes from walking to sprinting for the bus will end up out of breath, panting with lactic acid in their muscles; a few moments after they start running for the bus, their body will shift gear and work to support the changed exertion. Mine… does not do that so much. When I’ve tried explaining this to people, at least twice someone has said “That’s just being unfit!”. It’s different (and an unhelpful comment) because I wouldn’t end up panting because my body never adjusted properly, there would be some limit with blood flow.
In the earlier days, if I wanted to get up from my desk, I would half-rise, lean on something, wait a minute, then start walking slowly. To go up the stairs, I would wait another minute before going up. The change from being still to standing and walking upstairs is too much.
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That’s covered the symptoms, some of you might we interested in my current exercise data and how that has changed.
I used to be quite fit, I think a ‘casual athlete’ is a fair description. I would do proper exercise about three times per week, not including cycling to get places. I could run 5k in 23 minutes (4’ 40” per km) and 10k in 50 minutes. I could cycle 20km in an hour for a commute no problem, and twice in the previous year I cycled 100km in 6 hours. I did parkour, went bouldering, swimming, and did martial arts classes. I didn’t do any strength training, but I had decent strength, able to do a set of 8 pull-ups or 4 muscle-ups in one go.
Now, when I go for a run, I run for 3 or 4 minutes, then walk for 1-1.5 minutes, on repeat. Actually, at the start of the run I do 1 min run, 1 min walk, 1.5 min run, 1 min walk, and build up to it. For the running interval, I run at a 6’ to 6’20” pace, about 30% slower than I used to. Then I walk for a minute. Including the walking, my best 5k run now takes 33 minutes, about 45% longer. When I cycle, I cruise at 15km/h instead of 20km/h.
There has been an improvement. At the start of October (that’s 5 months since infection), I was doing an interval run that was half run half walk. My average pace was 6 km/h – only 1 km/h faster than my walking pace. In September, I tried cycling a half-hour commute to coach parkour. I could do it, but at 75% of the usual speed, and it tired me out the next day. So, I can do more than I used to be able to.
As I said earlier, it’s the change in exertion that is a problem. Cycling and running are relatively consistent – if one is able to do it for an hour continuously, as I could with running, it’s a sustainable rate of activity. Other activities, based on more intense bursts, are not like this. Climbing and parkour, for example, you would usually do a movement for 10-60 seconds. I still cannot safely climb anywhere near my strength limit.
I have still gone bouldering sometimes, but I have to really hold myself back, and at least half the sessions I have done have caused a crash the next day. The last time I went, I limited myself to a grade below my previous comfortable grade (I used to climb almost all the V3s in the centre and could do a few V4s; I only climbed V2s last session) and had to take 5m breaks between every two climbs. Even then, that was only just okay.
I’ve also tried to still attend martial arts classes and just take back in a scaled back way. In one, I was keeping part in a technical drill which wasn’t too taxing, with occasional breathers. We then switched to a faster paced drill, applying the technique we had gone through in more real-time. It was great fun and more useful to actually acquire the skill, but after about 30 seconds, I realised I had crossed my threshold. As is often the case, it was too late. 30 seconds later, I was slumped down on the floor.
Part of the difficulty of this condition is that I don’t feel the limit. I have to stop before I ‘feel’ tired. The limit isn’t a shortness of breath, and there is a lag in the vascular effects. Our muscles only feel tired if either they use up all the stored energy in a short burst or they don’t get replenished quickly enough; by the time mine aren’t replenished enough, it is too late. I have to really hold myself back, before I get any sort of physical warning I have done too much.
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I started training as an athlete when I was 12. I did sprint training, long distance and strength training. I played rugby, I did parkour, I trained martial arts. Mentally and physically, I am able and used to pushing hard when I train. That said, my training in the last few years has not been about pushing myself – I have a more balanced relationship with it. Sometimes I would go for a run just to enjoy it and go at a comfortable speed, other times I would think, today I’m going to go fast and push myself. But the point is: I am mentally tough and my normal way to train is to push myself. Always another set, always another go at the exercise. If I was sparring in martial arts and got tired, I would keep going because being able to fight when tired is often when it matters most.
Now, I have to not only not push myself, but hold myself from even getting near the limit. It’s kind of like, if I notice any amount of physical limit during exercise, that’s too much.
I can do light parkour training, but parkour is about short burst of intense exertion – not intense by normal limits, but in terms of, you can’t keep each bit for all that long. Those who have seen me at Sunday parkour jams will think I can do little bits, just nothing too big in one go, and not too much. But sadly, after about half of the times I have turned up, I have crashed hard the next day. The other half, it’s been alright.
Ideally, I should do one light-moderate activity on a day, then have a full day of rest. But it’s easier said than done. One day I went for a run – an interval run at a slower pace with walking breaks. I only felt mild fatigue afterwards, which was exciting. The next morning, I decided to start my day with a walk around the park, about ten minutes after getting out of bed. I marched a lap, walking with intensity, taking about 15 minutes. When I got back to my flat, I felt exhausted and collapsed on the stairs. That day was mostly a write-off.
The condition has also massively affected my motivation to train. Exercise is no longer a fun release which gives me endorphins but a psychodrama of constantly questioning myself.
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A flare-up also affects my mood, I forgot to mention earlier. Our mind and body are not separate. A different physical ability affects how we feel, the fatigue affects my mood, making me feel more depressed and less confident. It is like my mind-body knowing that I can’t just get up and run also means that I can’t just get up and do good things.
The loss of the ability to exercise sucks too. If I was feeling low, or stressed, or bored, I could at least go for a run, or go to a bouldering gym, have an outlet and get a good dose of exercise. No longer. Now I do it because I think I would be good for my body, but I often don’t get the enjoyment because I’m not actually physically challenging myself. It’s a grey activity, not one filled with colour. I used to get around the city by cycling, feel free as the air brushed passed me and I whizzed around the streets.
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Going from being healthy and able to not being as healthy and able can be a big shock to someone. It happens a lot to athletes when they get injured that they get unhappy and depressed. A source of joy, and a sense of who you are, is lost.
Thankfully, in some way, this isn’t my first experience of disability or chronic health condition. I got a couple of fractures in my spine (over time, not from any incident or impact) and had to have surgery when I was a teenager, which meant no sport for a year and a six-month post-surgery recovery. I picked up some knee damage in 2020, and was worried I might never be able to run again; thankfully, it stabilised, and while I can’t do everything I used to, I can do enough. My experience of depression reduced my brain energy and motivation, and at some point during the pandemic, I got a fairly intense chronic fatigue in my brain – I could still exercise normally, but the only books I could read for a couple of months were child fiction. The irritable bowel syndrome which appeared in 2019 gave me a very tough couple of months and occasional flare-ups which wipe me out for a day or two.
So, I am already used to adjusting to my capabilities. Bend with the wind, roll with the punches, flow with the water, that sorta thing. It’s a totally different pace of live and way of living to the normal way.
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That said, it’s also too much. Last year, I remember thinking, I’m close to my limit already with managing conditions. Doing physio exercises for three different parts of my body plus exercising four times per week plus all of the usual domestic or reproductive labour – like cooking and cleaning – plus trying to have a social life, all of that is already more than can be fitted around a 35 hour work-week.
Then I picked up one more condition. On its own it would cause enough difficulty to manage, but it’s just another thing to deal with. I haven’t done physio exercises much – I can do a light version of them sometimes, but the point is meant to be that you work the muscles to make them stronger – and now my knee has got a bit worse and my back hurts more. I do less work than I used to.
I’m scared about the future. Well, more scared, I was already scared of a few different things. I might never be able to run fully. I might not be able to really train parkour again. I might have to live the rest of my life being careful not to exceed an exercise threshold so that I don’t crash the next day.
I’m also scared about whether I will be well enough to do a PhD, which was already something I worried about before getting long covid. If I do get funding for it, that is – if I don’t, then I’ll have to drop out. Then I have a bigger problem: earning enough money to live off.
Were I to get a full-time job, in my current state, I am straightforwardly not able to do as much work as I used to. If I have to take days off with no notice due to a flare-up, it’s not like you can magically make up for that work some other time. Many workplaces don’t like people taking time off, and even if they are supportive and actually adapt to a chronic health condition, they tend not to like the fact you can’t do as much work. Understandable. Maybe I find a part-time flexible job, but that would likely not pay enough money to live off. For the year and a half before I started the PhD I had two part-time jobs, but both of them only paid if I actually did the work – neither had sick pay.
What happens to me if I can’t earn enough to live off? Honestly, what happens?
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