Living with long COVID, 1 year on

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I caught the bus into the center of town. On all sides, I was surrounded by people using their phones, talking, and listening to music via headphones. Nobody was wearing a mask, and nobody was physically distancing.
The first lockdown hadn’t yet happened, and the only advice that people had received to prevent the spread of the new coronavirus was to wash their hands for 20 seconds each time. Otherwise, life continued as normal.
Through My Eyes
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Feeling exhausted already, I got off the bus and headed toward a busy shopping mall, where I met up with my co-workers. We made small talk. Someone asked how I was, and when I said I wasn’t feeling too good, they said, “It had better not be coronavirus!” We all laughed.
The first activity of the day was an escape room. In the reception area, my team chattered around me about the day ahead. I tried to focus, but my head felt swimmy. I remember wondering if the room was too hot or whether I was just nervous.
As a staff member explained how the escape room worked, I felt a wave of heat, nausea, and dizziness hit me. Before I knew what I was doing, I stood up and said I had to go. I didn’t know if I was going to faint or throw up, but I knew I had to get out of there.
I said goodbye and left. Outside, the air was cold, which was a relief. But despite standing out there and waiting for a taxi with no coat on, I didn’t cool down.
At home, I collapsed in bed and watched a movie to take my mind off things. I started feeling a little better, and I thought maybe I’d just had a “funny five minutes.” But then, a couple of days later, I was still exhausted, still feeling sick, and still experiencing headaches, feverish spells, and an upset stomach. It wasn’t long before my partner got the same illness.
Early guidelines didn’t recommend a test
I checked my symptoms against the National Health Service (NHS) list of COVID-19 symptoms — which, at the time, were a cough, shortness of breath, and a continuous fever — and felt relieved that I didn’t have any of them.
Back then, the guidelines were to get tested only if you had these symptoms. So, I thought I must have something else.
Still, though — this virus wasn’t like anything either of us had experienced before. The symptoms came and went in waves, improving and then coming back all over again. It was nothing like a cold, and its inconsistency was nothing like my previous experience of influenza, either.
After a week, my partner and I both started feeling better. But then, very quickly, my symptoms started to come back again.
The most debilitating fatigue I’ve ever had
First, I started feeling generally unwell. Then, I had dizziness and occasional ear pain. I thought I must have an ear infection following a seasonal virus, and my doctor felt the same. She recommended I wait it out.
Meanwhile, the United Kingdom descended into chaos. Panic-buying, travel bans, and the first nationwide lockdown. I started a new job from home, putting up with feeling under the weather in the hope that it would eventually go away.
But it didn’t — it got worse. Over the next 3 months, I developed pain in my throat and glands, migraine-like headaches that radiated down the side of my face, nausea and digestive issues, tiny red spots all over my arms, extreme fatigue, and a complete inability to exercise.
Even trying to go for short walks on days when I felt OK would land me back in bed, aching all over, for a couple of days.
In June 2020, I spent a week completely bed-bound by the most debilitating fatigue I’ve ever had. It was exhausting just to clean my teeth. I had to sit down in order to take a shower, and while sitting up, my heart rate would climb to 100 beats per minute. It felt like I was under a heavy weighted blanket, and the center of my chest ached.
Now, I know that people with long COVID can develop myocarditis, which could have been the cause. At the time, though, all I knew was that I was scared.
People may read this and wonder how I carried on working. But I don’t know what I would’ve done with myself if I couldn’t. I didn’t experience the classic long COVID “brain fog,” so I could still think relatively clearly. Work provided a form of distraction from what was happening. It was something I could do, even if I couldn’t do anything else.
Eventually, I began to believe that I hadn’t just had a seasonal virus back in March 2020.
I found an online support group for long COVID and found many other people with stories like mine. Finally, I had an answer, as well as hope. There were people out there who were making full recoveries from this illness.
However, I had no way to prove to a doctor that I’d ever had COVID-19. The antibody tests are not always reliable. All I had — and all I still have — is a list of symptoms. So, aside from some routine blood tests, I received no medical help.
Progress and reasons to be hopeful
Since spending most of 2020 stuck in my apartment, unable to go outside due to the six flights of stairs that stood between me and the rest of the world, I’ve made a lot of progress.
For example, I discovered that following a low histamine diet drastically reduces my symptoms, particularly the headaches and digestive issues.
After sticking with that for several months, I also started to see gradual improvements in my fatigue. I don’t know if the diet is responsible or whether I just needed time. Either way, I’m grateful.
Not that long ago, I had to ration the energy I used in a given day — to cook, to clean, to take a shower — in order to avoid a relapse. Now, I have the luxury of not having to think about it.
And it truly is a luxury. People who haven’t had chronic fatigue don’t understand the sheer freedom of being able to do basic daily tasks without worrying about being punished for it later — of being able to do things yourself instead of being dependent on someone else.
I may not be “back to normal,” but I’m hopeful that I will get close enough. With more research and support, I hope that others with long COVID can get there, too.
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