Long Covid – When a mild case is not so mild after all

16 March 2020

Covid still seems far away, only few cases reported in the news, Germany is already speaking about lockdown, in the UK it is still business as usual. I wake up with a sore throat and feeling a little bit strange. By afternoon I start coughing. It seems like a weird kind of cold, because normally I first get a runny nose and stuffed sinuses. None of that this time. I start making jokes about Covid, but of course I am not taking it seriously. Nonetheless, I cancel all tutoring sessions and meeting with friends and start self-isolating at home – just to be safe.

I am on a deadline for articles, so for the first few days I simply continue working. I always work when slightly ill, as a freelancer I don’t allow myself the luxury of taking a break. It’s just a cold, and I am young and healthy anyway, so Covid shouldn’t be an issue.

21 March 2020

All articles done and nothing urgent to do to keep me going, I finally crash. I am so tired I don’t want to get up anymore, the cough has gotten increasingly worse, my lungs burn and for the first time I experience what I now call “the bear hug”, the feeling as if a giant bear has put his claws around my chest and back and gives a good long squeeze. I don’t have any fever, so it can’t be that bad, right? Just a mild case.

The next couple of days are a bit of a blur. What do you do when you are sick and on your own? A bit of reading, Netflix, sleeping, the sun is out so I sit on my balcony and message friends about getting a tan thanks to what I by now think is Covid… I think I will be fine. This should be the worst of it.

28 March 2020, day 12 of Covid

It’s dark outside and I am scared. I can’t breathe. Every breath is followed by coughing, I gasp for air, interrupted by another coughing fit. I have to throw up from coughing.

I feel drunk, everything is blurry and confusing.

I need to use the bathroom, I half walk along the walls, half crawl. Walking hurts.

My lips have turned blue, my fingers as well. I am too stubborn to call for help. Ambulances are just for the worst cases, right? I will be fine.

I call a friend, instead, ask him to stay on the phone just in case. I can’t speak, but I can listen. Breathing is hard. We hang up after two hours, the coughing has eased a little, it starts again later that evening.

The last time I look at my phone it’s eleven, I don’t think I can sleep… I can’t sleep like this…

Nothing. What happened after? I can’t remember… I must have blacked out, either from lack of oxygen or from tiredness.

Maybe I should not have been alone that night.

29 March 2020

My alarm is ringing at 10 am. My lungs are on fire, and I don’t think I can get up, but at least I am alive…

It’s 12pm and I have two online students booked in until 2pm. I put on some make-up and a brave face. Both students are just seven years old, and they don’t need to know. We play language games, I am still coughing, but I pretend everything is fine. Covid is not scary at all!

2pm. I hang up and shut down my computer. How to get from my desk to my bed? It’s not that far… kitchen floor is fine, too. Just a few minutes, then I can walk the rest. Maybe 30 minutes? 30 minutes on the floor sounds reasonable… I forget time. I sleep. On the floor, in my bed. Sleeping and coughing. And repeat. The day passes, another night. Another day. All the same. It is just a mild case, I will be fine.

End of March/ Early April 2020

I am. I am fine. I slowly recover, still tired, still in pain. But I am slowly getting better. 21 days after the first symptoms I finally leave my flat again. The first two days I only go up to the roof garden, still avoiding people. I start taking walks, but only manage short rounds to the park and back, my legs are wobbly and I am still dizzy. I blame the three weeks of doing nothing and maybe confess to myself, that Covid hit me a little harder than expected. It is a weird time. I went into self-isolation still in winter and come out of it in spring. Everything seems brighter, the colours more intense, the scent of flowers following me on my walks. I lie in the grass in Florence Park and can’t get enough of the sunshine and people’s voices in the distance. I’m in love with the world.

End of April I start cycling. I normally hate cycling in Oxford, because of the traffic, now it is quiet and barely any cars are on the road. For the first time, I cycle all the way into the city centre, the High Street is empty, and the sandstone walls reflect the warm orange light of an early spring sunset. I could do this every day. And indeed, I do it a second day in a row. The third I can’t get on my bike. My head is spinning. Too much too soon, I think.

May – July 2020

April turns into May and I am getting worse. I can’t walk through the park without breathlessness. I blame the hayfever, I never had it that bad, though. Someone recommends an oximeter, it takes a while to get one, because they are sold-out everywhere. I feel dizzy again. This time I check my blood oxygen levels. 84%. I don’t know what that means and have to look it up online. The NHS advice is to call 999 and or go to the nearest A&E if “your blood oxygen levels are 92% or less”, I pretend I didn’t read that and take a nap instead. At some point in 2020 I start joking that they might just leave the ambulance parked in front of my house. Whenever I attempt the slightest bit of exercise – a walk around the park, some light yoga, some days even simple household tasks like cleaning the kitchen – my blood oxygen levels start dropping. The low-90s are a normal by now, on bad occasions it drops lower. 79% feels like being drunk and on a rocking boat at the same time. The world is turning upside down.

Other weird symptoms follow. I instinctively blame the back pain on my desk job, but then my legs and feet start hurting, too, my ankles are swelling up. I have bruises on my legs, after a walk my veins look like a watercolour painting, streaks of blood evaporating into the surrounding tissue like paint on water-soaked paper. My brain is no longer working properly. My keys, where are my keys? I can’t find them. And why is there an herb jar in my fridge and not in the usual drawer? I am making flat breads in the pan and completely forget about them until the fire alarm goes off. I’ve become so used to the smell of burning, I’ve started to ignore it. Phantom smells, they happen a lot by now. Most times it’s burned plastic, on other occasions it’s rotten fruit.

I can’t write. Sentences are muddled, grammar incorrect, nothing makes sense… I can’t write. I can’t live without writing. I sit at my computer and cry. This has never happened before. I can’t find the right words, neither in English, nor in German and I often mix both languages. It even happens when speaking with friends. I am tired and want to reply to a question, but the words don’t come. I stare for a while and then say something else.

By accident I learn on Twitter that others are complaining about lingering symptoms as well, one of the accounts I’ve been following because of their historic research recommends a Slack group. I am not crazy! I am not making it up! What a relieve…

In July I finally have an in-person appointment with my GP. She doesn’t know what to do: there is no research, no treatment. She is prescribing an inhaler to take whenever I get what she thinks is Covid-related asthma. The bruises on my legs? They will fade over time, she says. They are still there. Two years later. One on my ankle, one on my shin.

July – September 2020

The height of summer. I am less confused now. Rest helps. I can occasionally cycle to the river, walk a little bit more. The inhaler helps with the constant breathlessness and coughing fits. I find a strange rhythm that sometimes works, but more often doesn’t. I am not used to taking it lightly, I am not used to having to rest. Walking or lying in the sunshine a little too long are causing fevers now, my body is not able to regulate its temperature. I start Yoga again, mostly breathing exercises and light stretches, and start meditating against the constant state of panic.

People ask me to go out, do things, be active, and I want to. We go for walks and have days out, barbecues on the roof and swimming sessions in the river, the heights of an adventure followed by nights waking up crying. Why am I crying? Only fully awake I realise that the pain in my body has creeped into my dreams and that muscle spasms in the legs and back have woken me up. The bear is back, he is an unwelcome old friend by now. My dreams are more vivid, too, and more often than not, they are nightmares about past hurts and pains I’d rather forget. I do no longer like the nights, neither the dreams, not the restless turning and twisting, trying to find a position that does not hurt.

September 2020 – January 2021

I’ve been accepted into a Covid study, they are checking for organ damage and for the first time I am put into an MRI and find it strangely relaxing. It takes months for the results to come back, all the while Long Covid has found a new playground: my heart. Oh, the joy of trying to work while the resting heartrate fluctuates between 120 and 140. I feel like I am in a constant state of alertness, in flight mode by doing nothing. Sometimes, though, my heart decides to go the opposite direction and the resting heart rate drops into the low 40s, also not great.

One night in autumn, I think I’ve been working too much again the day before, I wake up at 3am, my head hurts and I feel nauseous. The left side of my body is in pain and again I am short of breath. I get the oximeter. Maybe the oxygen levels are too low again, the inhaler will help with that. Oxygen at 98%. Perfect. My heartrate, though, slightly freaks me out. It can’t be right! I adjust the oximeter, try again. Again, with the same result: my heartrate is jumping up and down, 43 to 128 to 46 to 142 to low 40s again – each time within 20-30 seconds. I stare at the monitor and don’t know what to do. I message two friends, asking them to call me in the morning. I am not sure I will be ok. I am not ok. Fuck. I do yoga breathing and try to calm myself. Maybe this is just panic or anxiety… maybe… I stop monitoring the heartrate. I don’t want to know. I want to sleep. Shit, I don’t want to sleep. If I sleep, I might not wake up. The world is spinning, I feel free and light and… it is morning and my friend knocks on my door. She tried to call, but I did not pick up. I am so tired. Please let me sleep.

It happened again, once. This time I am less afraid, I’ve been there. I’ve survived once, I can do so again. In January my MRI results come back. No heart damage, blood still shows heightened inflammation, though.

Neck pain. My head is too heavy. I can’t stand or sit. I spend a month solely working from my bed with pillows propped up behind me. My head shouldn’t feel like it weighs a ton, but it does, and my neck can’t carry it…

February and March 2021

I learn to say “no” and take it easier. Another lockdown helps, nobody wants to do anything anyway and I can finally rest. I find a rhythm that works and for the first time in months I feel that I am actually improving. I am happy. I’ve been for a while. I’ve never been this calm, relaxed and at ease with myself in all my life. I feel like me again, just a slightly new version. When I was a girl, I wanted to be an Elf or Rohirrim in Lord of the Rings, now I just want to be a Hobbit, eat good food, tend to my garden – and paint. Are there any Hobbits who paint?

April – July 2021

Fantastic. Covid has moved on again, causing havoc in the next part of my body. Bladder and kidney, apparently. In April I get a bad bladder infection that also affects my kidneys, I am put on the first dose of antibiotics. During a check-up it also turns out that months of constant coughing has completely wracked my pelvic floor muscles and slightly dislocated my bladder. Months of physio follow to strengthen the muscles, but the dislocated bladder is sadly for life. Awesome. Something I really needed. Yes, sarcasm helps!

By May I am on my second bladder infection, this time the antibiotics do not work and I am carrying it around with me in a more or less severe state until I give in and call my GP again. Another course of antibiotics, this time against resistant strains, to finally get rid of the infection. I also start taking D-Mannose, recommended by a friend, which apparently has proven quite effective against recurrent bladder infections. I am still taking it daily and it does seem to do the trick.

This spring I start eating meat again for the first time in years – not entirely by choice. I need to change my diet. I can’t eat any lactose or Gluten, something that still continues until today, even though the Gluten sensitivity seems to have eased a little and one slice of bread is no longer causing days of stomach, kidney and back pains. I have also developed some new food allergies: pears cause a runny nose and pecan nuts a skin rash. I am still not sure how much Covid is to blame for this and how much repeated high doses of antibiotics over a couple of months.

August 2021 to Today

Long Covid is still not gone, I think I am just normally better in handling it. I had to learn my limits and develop more discipline. Most days I feel half-normal again. Some things are different though: I get ill easily and if I catch something I will be seriously sick. A simple stomach bug I shared with my friends over Christmas had me bed-ridden with a high fever for a week, a cold causes asthmatic coughs and again low-oxygen levels, which are also often triggered by cold winter air. Coming back from a walk can easily find me lying on the floor of my living room like a fish out of water… I still struggle to stick to my own rhythm and forget that overdoing it will have consequences: days in bed, coughing and a visit from my old friend, the bear. I have learned some warning signs though: waking up with shaking hands in the morning, twitching muscles and deep-seated pain between my shoulder blades, which is often the first indicator that my lungs are getting inflamed and sore.

Many people think Long Covid is mainly fatigue or brain fog and while that has been part of my Long Covid journey it has also never been the determining factor. Long Covid is not fatigue, Long Covid is pain. I recently sprained my ankle and the doctor at the hospital insisted I’d take some Paracetamol. I didn’t. Yes, it did hurt and for a couple of days I couldn’t walk at all, but it was nothing compared to Long Covid. At least with a sprained ankle you can avoid the pain by not stepping on it… Long Covid is not that kind.