“Call Us If You Get Worse”: What Covid-19 can do to a “healthy” person.
“I am pretty sure I have it.”
I started saying this to colleagues and students around the 9th of March 2020. I had a strange, hot pain in my lungs. It was the shape of a horseshoe — it ran down the outside and along the bottom of my lungs. I could breathe fine. I was still able to deliver a two hour lecture, ride my bike, talk to people in meetings, walk to the supermarket; but I was a bit more tired at the end of the day. Then again, I thought to myself, I am always tired at this time of year. Winter was ending in the Netherlands, I was almost half way through what is the busiest time of my working year at the university.
I am a 43 year old woman with no pre-existing health conditions. I can go eighteen months without needing to talk to a doctor. This year, I had been to my GP once. At the end of February, I had had a low grade urinary tract infection that needed antibiotics. The five day course of medicine worked fine, but when that infection cleared up, I was still a bit run down. Or so I thought.
At this time, the Dutch government was advising us to stop shaking hands (the Dutch shake hands with everyone), to wash our hands regularly and to cover our mouths if we coughed. I was not really coughing — I would give a pathetic little single cough once or twice a day, and my chest was not feeling congested, there was no phlegm to be cleared. It just felt an electric blanket was running on the highest setting inside my chest. I had never felt anything like it.
My symptoms did not match the list on the National Institute for Public Health and Environment website that were considered warning signs of Covid-19: a fever over 38 degrees and shortness of breath were key things to look out for. But just to be on the safe side, I stopped meeting people in person, and went to the supermarket once a week. When I went, I wore latex gloves and kept my distance from other shoppers. I was not coughing, or sneezing or sniffing. I could still walk to the shop and carry my shopping home then, a twenty minute walk each way. By 16 March, The Netherlands was in ‘intelligent’ lockdown.
Once this happened, I was working from home. I was conducting my last few classes via Microsoft Teams, attending management meetings, and quickly trying to redesign my courses for online delivery. As the month progressed and the fire kept burning in my lungs, I was getting more tired. I would wake up around 7.30am after nine hours of rest feeling OK, but by 11.30 I needed to sleep. I was checking my temperature twice a day and it was fine. The most mundane work tasks that required focused concentration — writing emails, listening to other people talk in meetings — started to exhaust me. And I was hungry. I am of a slim build with a fast metabolism. I was eating four meals a day instead of my usual three. This is a good sign, I thought, my immune system is fighting.
“This thing wants control of my lungs.” I said to a friend over the phone in Australia as April drew near. By late March all I could do was lie in bed, nap, read and eat. I drank a lot of fresh ginger tea. I drank it all day. The fire in my lungs kept raging, I was only breathing into the very top of my lungs, I could not take a deep breath. I was not sleeping as well I usually do, and when I was very tired (usually in the afternoon) I had developed a spectacular case of tinnitus. I would lie in my bed listening to the phasing of the high pitched frequencies in my ears with curiosity and trepidation. When a friend would call to check how I was while he was on his evening walk, I would sometimes have to ask him to repeat what he was saying three times because I could not hear his deep voice over the screaming high notes in my head. I was worried. I had not occupied physical space with another human being for three weeks. And my body was getting very weak.
On the 28th March, after a particularly stressful night, I called my doctor and he agreed to send me to a respiratory clinic to have my lungs checked. There was a triage clinic in a gym at a high school two blocks from my house. I walked to the clinic very slowly. It was the first time I had left my house for two weeks. I sat alone in the gym for ten minutes, waiting to be seen. When the medic came to get me, she wore full PPE. She checked my temperature (normal), the oxygen saturation of my blood (also normal) and listened to my lungs. She could hear the infection there. “I think it is coronavirus,” she said. “But I cannot test you. You can still walk, and talk. Go home and rest and call us if it gets any worse.” The Dutch only started widespread testing in June, so to this day I have still not been tested for the virus.
When I spoke to my doctor the next day, he advised that one version of coronavirus seemed to be doing this — giving people a long running lung infection that could last up to six weeks.
“So you probably have another three weeks or so to go,” he suggested. “The good news is that from what we know now, if you have had the infection for three weeks or so, it is unlikely that you are going to get worse and end up in hospital. But you need to monitor your temperature and breathing. Get a lot of rest.”
I took sick leave from work and lay in bed with shortness of breath, burning lungs, ringing ears and total exhaustion for another three weeks. Time was a blur. I was not coughing. People would drop off groceries every few days. I could barely stand in my open door and have a conversation with them. I was just too tired. My lungs burned and burned. I read a lot. I napped. I ate.
Ten days after my visit to the clinic, still with burning lungs and shallow breathing, I called the emergency doctor. I described my symptoms. He looked at the notes from my visit to the respiratory clinic.
“They think I have Covid-19,” I said. It was 2am. I was awake in the middle of the night. I was scared.
“I am sure you do.” He responded. “Your symptoms are consistent with it. But you can speak in full sentences to me on the phone, so I am not too worried about you. Take some paracetamol and try to rest. Call us if you cannot walk to your toilet, or if your breathing gets worse, or if you have a fever for more than two days.”
My doctor’s prediction was right. I had burning lungs, exhaustion and shallow breathing for a total of six weeks. By the middle of April, the burning started to subside and was replaced by a tightness in my chest and a weight on my lungs. I started coughing; after walking up the stairs in my apartment too fast, or if I talked in an animated way to a friend on WhatsApp for too long. Sometimes I would cough in the shower, after breathing in the steam. But I was not coughing anything up. There was no real congestion. I was so weak I could not walk around the block. Breathing was hard work. On the 23rd of April, I was sent back to the respiratory clinic and checked again. No temperature. Oxygen saturation fine. This time, the medic could not hear evidence of an infection in my lungs when she listened to them.
“I hear no infection now,” she said thinking this would reassure me.
“So why can’t I breathe? Why am I coughing?” I asked her, crying with frustration.
“We don’t know. There may be some inflammation there. I will give you a steroid to inhale, that might help.”
I started inhaling a steroid twice a day that is prescribed to asthmatics. It is not given to treat asthma attacks, but provides long term support and treatment for the inflammation that causes asthma. I described my new symptoms to friends who are asthmatic and they sounded very familiar to them. Having never had any lung problems before, I was having to learn to control the anxiety that not breathing well can cause. I visited my doctor and he also listened to my lungs and confirmed they sounded “fine.” He sent me for a chest x-ray to see if my lungs were damaged. He said he thought I might have bronchial hyperactivity caused by my immune system continuing to fight in my lungs even though the virus was gone.
“Your lungs look perfect,” he said when he called with the x-ray results later that day.
“We think you can expect about a six-week recovery. You had the infection for six weeks, and the healing takes about the same amount of time. Get a lot of rest.”
After the burning pain was replaced by these new symptoms I spent May and the first half of June trying to regain some strength and giving in to my total exhaustion. My lungs would get tired and ache after walking for ten minutes, or talking for more than twenty minutes. I would fall off a cliff into total exhaustion with seemingly no warning and have to spend a day in bed. But slowly, with two steps forward and one and a half steps backward, I was able to regain enough strength that I could take a walk with a friend (at half my usual pace), and sit with them and talk. This part of my recovery seems consistent with recovery from pneumonia, but I was never diagnosed with pneumonia.
Around this time the media started reporting on “long haul” cases of the virus. It was reassuring to see that I was not alone. The medical profession started to consider whether people like me were actually patients that needed ongoing care.
As June progressed, my fitness continued to improve but my lungs were still aching, and my chest was still tight. I was back at work, and an hour long video consultation with a student would no longer send me to bed to sleep, but would leave me with sore lungs and the feeling that I had worked an eight hour day. Bone crushing fatigue was replaced by tiredness.
I realised I was doing something I came to think of as “covid breathing.” Short, shallow gasps. After six weeks of healing, and twelve weeks since the problems started, there was little real improvement in my lung strength. I talked it over with my doctor, who suggested I see physiotherapist who specialises in lung rehabilitation.
Two weeks ago, someone showed me how to breathe. It is a strange experience to have to relearn how to do a thing that you never had to learn in the first place. As July begins, I am almost able to breathe normally, but only when I give it my full attention. When I walk, sometimes I can breathe properly but sometimes I have to stop and “reset” my breathing. If I think too much while I walk, the shallow breathing returns. It requires all my attention on my body to breathe normally, no matter what I am doing. I am unable to talk and breathe properly, so any conversation leaves me tired and I have to limit the number of conversations I have each day, and how long they go for. I have to ask people to talk to me and not expect a response so I can sit and listen to them and breathe.
As I type these words for you I am shallow breathing.
My physiotherapist tells me I have to keep focusing on breathing to retrain my body. At some point, she thinks (and I hope) breathing normally will become a habit and I won’t have to concentrate too hard to do it.
I am writing this essay because none of my Australian friends and family know anyone else who has had coronavirus. It took so long for me to get consistent medical attention because I have been regarded as a ‘mild case’ while frontline medical professionals are busy managing an epidemic. I cannot describe my symptoms and their meaning to you as though they fit a profile. The last four months have taught me, over and over again, that we should believe the medical professionals when they tell us that they do not know or understand how this virus behaves, what impact it has on our bodies, and what we can do to treat it when we catch it. I am not part of a medical study because the medical researchers have been, understandably, busy trying to identify how this virus kills people.
I am writing to you because we are four months into the pandemic and we are all tired and some people are wondering, because they lack direct firsthand experience of anyone with the virus, whether there is really anything to worry about. You don’t know me, and I don’t know you, but I want you to know that this virus does not just kill people — it can give healthy people a chronic illness that lasts for months. I caught the virus very early, and I can’t tell you how long it takes to recover from it, because I have not recovered. I am telling you about my experience with Covid-19 so far to help you keep your strength during this period of uncertainty and restrictions. I don’t want to scare you, this situation is scary enough, and many of us are anxious or depressed. Some of us are bored. I want to tell you some of what happened to me to help you find the focus and energy to keep following the advice and measures put in place to help slow the spread of the virus. And I want you to know that a ‘mild case’ of this virus can turn a healthy person into a very unwell person with chronic health problems. I want you to know that if that happens to you, at the moment, there will be very little targeted support from health professionals. They will be kind to you, when they have time and if they are not exhausted from months of stress from working during a pandemic, but they will not be able to do much more than say: “Call us if you get worse” and “We don’t know what this virus does to your body.”
I have a long way to go, but after four months I think it might be possible that I will make a full recovery. Medical researchers have a long way to go too. The discipline and patience they are using to understand the virus is not that dissimilar to what I have to draw on now, and what you have to draw on as you continue to face restrictions to your personal freedoms, the worry that you might lose your job, the stress you feel that your postcode might be the next one where an outbreak of the virus occurs. Perhaps it would help us to recognise that we are all long haul cases.