Exercise is not a Cure: Long COVID and Physical Activity

I didn’t take the time to recover properly from COVID, so I might never recover from COVID.

I’m not writing this post because it’s one I particularly want to write. I know that waiting to feel inspired is a fool’s game, and that the best inspiration comes about by creating it yourself, but out of all my writing, blog posts are what I write in a frenzy. I write them when I feel possessed by an idea and need to get it out. It’s the best feeling. It feels like making art.

Not this though. This post doesn’t feel inspired, but it does feel necessary. I wanted to take some time to briefly tell you about my experience of getting long COVID and its interactions with my exercise regime. I’ll level with you – a lot of what I’m talking about is unconfirmed – for reasons I’ll explain below. I’m going to ask you to listen to your doctors, your personal trainers and the experts, rather than taking what I have to say at face value. I have made an effort to include reliable sources, but I’m not qualified to interpret medical literature. I can only speak my truth.

I want to tell you my story on the off chance it will help just one of my readers, because I care about you a lot. I have even included a TL;DR if you want to skip to the main points!

I’m not sure people have been taking me seriously, or listening to what I have to say. It feels like people try and minimise the impact of COVID in general, and say it’s not that bad. I know it might be difficult to admit, BUT IT CAN BE THAT BAD. Minimizing the reality of COVID is a shoddy defence mechanism, because it will not protect you from it.

Even if it feels like people don’t listen to me, I know that people do take my blog seriously. So rather than continuing to put it out in tweets, or text people, or PLEAD with them down the phone, I thought I’d get it down here.

The Initial Illness

In winter 2020-21, I got COVID-19. I’m not sure of the date because the symptoms I got were not listed on the government website, and they were advising to test sparingly at that point. Rather than the expected cough with a fever and flu-like symptoms, I experienced a lot of strange ailments that I struggled to put together.

• A severe, persistent headache that didn’t subside with pain relief
• Intermittent difficulty breathing
• Chest pains
• Extreme muscle aches
• Fatigue
• Brain fog
• An unexplained decline in mental health (leading to a relapse)
• Loss of taste (food, not aesthetic)

I didn’t know I had COVID because of a variety of factors. One of the reasons was that the symptoms hadn’t yet been recognized by the official bodies, and reports of the headache/fatigue variant were largely anecdotal. The more personally distressing reason is that due to my neurodivergence, I find it difficult to identify and understand my feelings, and therefore it’s tricky to tell whether I am physically or mentally ill. As someone with chronic mental health conditions, I am used to fatigue, brain fog and some degree of pain as being caused by mental illness. Physical symptoms of mental illness are real and valid, but require different treatment. Telling the difference between illness caused by pathology, and symptoms of mental illness is always confusing – but in this case it was dangerous. I had been experiencing a period of relative stability before I began to get these symptoms, which led to a relapse in my temporary sobriety (that I had maintained for 6 months prior). I didn’t know what was making my mental health to deteriorate so rapidly; I think being physically ill for an extended period of time depleted the resources I used to stay sane, especially because I was not resting. I had no idea what was going on. I used to disassociate a lot when I was in pain or distress, so that didn’t help either. There’s a lot around that time that I just can’t remember. I don’t know when I was viral.  As mentioned above, I was never tested. I checked in with my doctor once a week, over the course of a month, confused about my symptoms, and they told me it was probably just a different virus. Eventually, the guidance regarding COVID symptoms was updated, and I was advised it probably had been COVID all along, and I was suffering with post-viral fatigue. I’ve been post-viral for over a year, and it’s still happening.

Due to this, I can’t tell you what it was like to have COVID in the ten days I was viral. I can’t remember feeling very unwell, but perhaps that’s the disassociation. I remember thinking I was going crazy. I remember having very vivid dreams and hallucinating birds after I woke up most mornings.  I probably spiralled a lot. Other than that, I just got on with it; as someone who has a history of chronic illness, I’m used to ignoring the signals my body sends me in order to function. It kills me that I didn’t know I had it. Luckily, I was following the rules. Luckily, no one in my support bubble got seriously ill. It kills me that even though I was reading the news and checking the rules, I put people in danger. Thank fuck it wasn’t worse.

My Long COVID Symptoms

I will never be able to tell you what having COVID is like, but I can tell you what having long COVID is like. The most intense period of my symptoms lasted for around 2 – 3 months, and I’m still suffering with it, though, thankfully, my symptoms are relatively minor. Below are the symptoms I have. The ones highlighted in yellow are symptoms I am certain are caused by long COVID, the ones underlined in blue are issues I have struggled with in the past, but are definitely triggered by a long COVID episode.  As well as the below symptoms, during episodes, I have extremely vivid dreams, insomnia, night sweats and dry eyes. I also suffer with bladder issues, which in some literature, has been linked with long COVID – but that could very well be a separate and unconnected chronic illness and may be related to my PTSD.

It’s very hard to tell things apart, which is why it’s so important to be extremely careful.

I’m lucky that my symptoms don’t occur all the time. I’m lucky that they’re largely manageable, but when they occur, they tend to attack ALL AT ONCE, and it can take days to recover. I can’t know for certain, but what I’ve deduced is that they’re connected with physical activity.

My Long Covid and Exercise

A couple of years ago, I started mirtazapine to treat my mental illness. Its side effects include extreme appetite and fatigue. To combat these side effects, I started a nutrition and exercise regime and had been enjoying my new lifestyle for at least half a year before I got COVID. I ran most days of the week (sometimes up to 8K in one session) and when social distancing began, I started lifting weights in my apartment.

I can’t remember when it started, but during winter last year I started to get awful headaches that refused to go away, even with strong painkillers. It was a constant pressure around my temples, and even a light touch made them hurt even more. My workouts started to feel absolutely awful – my muscles never stopped hurting, and exercise made my headaches worse.  I couldn’t recover. I got pains in my chest, and it felt heavy all the time. I thought perhaps that I was pushing myself a bit too much – exercise can be hard, right? I just carried on until eventually I couldn’t do anything any more.

It got to the point where I could no longer run, and I struggled even to complete short walks. I had to stop to catch my breath. Sometimes, I’d be sitting on the sofa, watching Netflix, and suddenly find it difficult to breathe. For months, not a day went by that I didn’t have a headache.

There was lots of advice about recovering from COVID, much of it advising a gradual return to physical activity. Exercise is prescribed to treat a lot of conditions, and that’s fucking dangerous. What benefitted me most was listening to my friend who has chronic fatigue syndrome. She told me to ‘rest more than you think’, to only increase my physical activity a little each day, and to rest if the increase made me feel worse. She told me that physical activity means ANY AND ALL physical activity – not just exercise. I had to be careful with everything I did – even things like cooking, cleaning, and sitting at my desk.

It was only by stopping my fitness regime and staying in bed that I was able to eventually recover. I rested most was when I was post-viral: because I hadn’t rested during my viral phase, I had to repay the debt ten-fold.

Thankfully, the vaccines have been a big help: I’d had a headache every day for months and after my first dose, it went away, and it only returns when I trigger an episode. I still can’t do certain types of exercise: if my heart rate elevates to a certain point, I feel the headache coming on, and if I work through that and my heart rate raises too much, then I can trigger an episode of symptoms that flair up intensely for days and linger for weeks.

18/03/2022 Edit: The benefits of the vaccines have since vanished. I now find it difficult to take long walks. I do not exercise at all.

I think what gave me long COVID, was the fact I didn’t know I had COVID and continued exercising, which prevented me from healing.

Badly Worded Advice

The NHS guidance regarding returning to physical activity after COVID, is not the worst. It suggests monitoring your fitness levels during short walks and increasing your activity over time  – which is sensible. What I disagree with, though, is the focus and tone of the advice. It feels as if fitness is emphasized rather than rest, when rest should be at the centre of the guidance. I often wonder if I had properly rested during my illness, and in its aftermath, if I would be in a better state than I am in now.

Let’s take a look at the NHS COVID recovery website:

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Recently, I can walk a long way without a struggle most of the time. I have even managed a light jog, but it doesn’t feel healthy, or possible for me to attempt to obtain the level of cardio fitness I reached before when one tough training session can floor me for a week. Walking is still a little more difficult than usual during an episode and often, I don’t risk it. I rest.

I was going to highlight the above section, but there is so much I disagree with that I’ll address this section point by point:

1. As someone who has done cardio exercise very frequently, I can tell you without a doubt that COVID breathlessness is not the same as breathlessness due to exercise. It feels different. It feels damaging.
2. You CANNOT do things that are important to you when you have triggered a long COVID episode, because you might not be able to focus, or even get out of bed.
3. Maybe physical activity will help your joints, or maybe it will make your muscles SCREAM for DAYS.
4. No amount of sleep will be enough if your physical activity triggers fatigue.
5. You know what else can help manage chronic conditions – rest!
6. This is a terrible, terrible sentence. Physical activity does not cure everything and can sometimes make things worse!

Good Advice

What I’ve found useful is looking at the BMJ which contains discourse pertaining to the ongoing debate surrounding exercise and recovery. This is linked with the controversy surrounding advised treatment for chronic fatigue. I’ll link all the articles below, but here are the parts that I found particularly useful:

Long covid: doctors must assess and investigate patients properly:

Returning to physical activity after covid-19

18/03/2022 Edit: Many of the above services are not yet available.

The TL;DR

We are getting fucked over by the fact that fitness is touted as a moral imperative. This is nothing new. Chronically ill and disabled people aren’t always believed, and fat people are often refused treatment until they lose weight (which happened to me a few years ago, even though my pain was contributing to my low activity levels). The prescription of exercise is par for the course in the UK healthcare system, suggested not always for the benefit of the patient, but to ease the burden of a system which should be supported by more adequate funding, rather than propped up by longing people off.

Rant aside, here are the things I’ve learned that I have been begging people to listen to:

• You can be young fit, healthy and eat a ‘good’ diet and still get seriously ill from COVID.
• Take note of your activity levels, remember that ALL activity counts as physical activity, not just what is generally classified as exercise.
• DO NOT work through the pain, please listen to it.
• Look for research a little beyond what the NHS or your doctor give you. They’re not always up to date with the latest developments, and sometimes the services they’d like to offer are just not available.
• Let your fitness and physical activity serve what is in your best interest. It is not a cure for everything and can make things worse. When you have depleted resources, you need to prioritise.
• Please rest more than you think! When you feel better – rest again!

I’ve written this not because I wanted to write it, but because I don’t want what happened to me to happen to you. I used to love running, and it changed my life. I don’t run any more.

Thank you to the friends who have supported me and gave my advice during my continuing illness. This post is dedicated to Ting Ting, in particular <3!

Thanks to my support bubble (Doug and Ollie) who were very understanding about my situation.

Thank you also to my lovely readers – I know this isn’t the kind of content you usually get from me.

To anyone struggling with long COVID – if you feel comfortable, then I’m super curious to know about your experiences and whether we share any similarities. Please do tweet me, or post a comment down below.

If you’d like to support my work, you can find links here.

03/2022 Edit: I tried going back to weight lifting after writing this post, did too much and made myself worse! I read an article that says sometimes increasing activity levels may make patients feel better, but it’s temporary. If I find the article, I’ll link it.

So please be careful.

Useful Resources:

How to manage post-viral fatigue after COVID-19 – 18/03 update. This is a much better guide sent to me by my fabulous Doctor! Go here if you need clear advice for recovery.

Long covid has resurfaced tensions over treatment of chronic fatigue syndrome

Long covid: doctors must assess and investigate patients properly

Returning to physical activity after covid-19

Why Vaccines May Be Helping Some With Long COVID

Long COVID and COVID-19-associated cystitis (CAC)