Diary of a Long Covid patient

The new normal

So, I am a patient of what they are calling Long-Covid, I’m a long-hauler. If you follow some of my social media, this will not come as a surprise, but I haven’t been posting too much about my condition lately other than to provide a status check that I am still alive, mostly because there are hundreds of thousands of people who are having a worse time than me without being at the hospital.  Nonetheless, I have been thinking about writing a full account of what I’ve been through, but while I was still quite sick I was stupidly afraid that it would be my last blog post, sort of the 2020 way of fate deciding to have a final joke at my expense by letting me write a coronavirus post and then killing me off.

So I’ve decided to go ahead and write my experience for a couple of reasons. Firstly, I’m now well enough that I hope I won’t drop dead in the next week. Secondly, I’ve been concerned with the level of the public debate right now with regards to Covid-19. While there’s growing recognition that there are hundreds of thousands of people still suffering months after contracting it (around 10% according to some statistics), there’s still an emphasis on the death rate, so the perception for many people is that you either die if you’re old, or you fully recover in two to three weeks. The reality is that this disease could leave 10% of those who were infected with lasting organ damage, so we should really start thinking about this as a health crisis that is more like polio. So it becomes important that people like me speak out to warn others about what’s happening.

What do you mean by Long covid?

Before I begin with my story, some background. The overwhelming narrative regarding SARS-Cov-2 has been that it is a respiratory infectious disease that can be fatal if you’re old or suffer from a number of co-morbidities that include diabetes, acute respiratory diseases, obesity, and heart problems. Covid-19 is highly contagious, and once it got into your lungs, it would either make you sick or you could be asymptomatic. If you got sick, the initial medical advice indicated that if you were under 65 and healthy you would be likely to survive, and it would be more like a bad flu that would knock you out for a few days and then you’d recover, but those with a risk factor could get really sick with untreatable pneumonia, and could eventually die.

A few things started to emerge that changed the picture. Covid wasn’t just killing people from respiratory failure, but it started attacking other organs, people developed heart problems, blood clots, kidney failure, severe gastrointestinal symptoms, and neurological symptoms. It became clear that this virus attacked whatever it could. (Edit: there’s growing evidence that this is a vascular disease).

For most of those who survived the onslaught, the virus went away, but for a minority of people the symptoms persisted. The range of symptoms for those who survived is astounding, and include extreme fatigue, tachycardia, palpitations, gastrointestinal symptoms, headaches, shortness of breath, kidney problems, liver damage, brain fog, loss of smell, eyesight problems, rashes, and muscle pain, just to name a few.

There are no figures as to how many people are suffering, but it seems like at least in the UK there may be 300k of us. There’s certainly tens of thousands of us online using social media to discuss the ongoing disease.

There are a few theories of what is Long Covid, some think that there may be some leftover virus in our system (like herpes), others think that it could be relapse/reinfection, others argue that there could be remnants that trigger a reaction from the immune system, and others think that it may create some sort of post-viral auto-immune disease.

Contracting the disease

For the avoidance of doubt, I’m the one on the right.

So a little bit about me before I contracted the disease. I’d like to think that I was in pretty good health, other than a cold at the end of October, I had been enjoying one of the best spells of health in recent years. During 2019 I had been hiking in the Scottish Highlands and in Peru, and had spent a holiday in Costa Rica in December. When news started spreading about this new coronavirus, I didn’t think anything of it until about the end of February, when it became clear that this disease was spreading faster than many had anticipated. I was in none of the risk categories, so I didn’t worry too much, but I was careful to wash my hands, and I was carrying hand sanitiser with me all the time.

By the beginning of March I was still teaching, but there was certainly a feeling that this thing was going to disrupt a lot of plans. I was supposed to go to Madrid for a conference on March 11, but the event got cancelled, and people were already cancelling events and plans left and right. I decided to travel to Paris on the 10th to spend time with my wife, there were talks of an impending lockdown in France, and I wanted to help her carry stuff to spend the lockdown in the UK, as our flat in Hove is much larger. Looking at that trip, it’s almost certain that I got infected en route, either in the Eurostar or in the Paris metro, which was packed and filled with people coughing. I remember the very second someone coughed next to me without covering their face, and I thought “ugh, this is not good”.

We made it out of France on Saturday 14th, and that same day I started feeling a bit funky, just a small irritation in my throat and a tiny cough. I was worried. Monday 16th I had a bit of muscle pain, but I wasn’t feeling bad at all. It was Tuesday 17th the day that I became certain I was sick, I had a fever, muscle pain, a persistent dry cough, and most importantly, I had a weird tightness in my chest that I had never had before. At this point I’ll mention that my wife also became sick, and also had long-covid, but is now almost recovered, and I won’t be discussing her illness, although we shared a lot of symptoms.

The first two weeks

So by Tuesday March 17th we were certain that we were completely sick, and we did what every academic would do in this situation, we started to research the heck out of this disease. At the beginning everyone was still treating this as something that you could mostly ignore if you were under 65 and were not in a group at risk. The assumption was that we would feel badly for a few days, and then feel better, so my memory from those first two weeks is one of being constantly sick, but in retrospective it was not too bad. I actually tweeted that I was sick, and started documenting my symptoms for the first weeks.

So I’m almost certainly infected, I’ve had a persistent dry cough since Saturday, which has gotten worse since Tuesday night. A bit of tightness in the chest, and I feel a bit tired, but no fever yet. Strict isolation, we have plenty of supplies, still working.

— Andres Guadamuz (@technollama) March 19, 2020

I remember how long those first two weeks felt, time seemed to stop, and we were living in a universe of coughing, tiredness, and learning that the virus was migrating around the body. I lost my sense of smell, I felt good one morning and then I could not get out of bed, and it felt like it was something that we had to endure hour by hour. The nights were terrifying and full of fevers, the days were spent wishing that it would all stop. At the same time I documented those first days on Twitter, fever, cough, tight chest, minor shortness of breath, tiredness, etc. The lovely response from so many people kept me going. There was the inevitable idiot who told me that I just had the flu (immediately blocked), but everyone else was really nice. We had lots of lovely offers for people to bring us food, and thankfully we didn’t need as we had stocked up in preparation for lockdown, and also the Brexit stockpiling had helped.

At some point it looked like the disease wasn’t getting any worse, and looking at the statistics it seemed like we were out of the woods, so by April 1st I declared victory over the virus and left the house for the first time (after the mandatory 14 days of isolation).

While horrible, it looked like the worse of the symptoms were over [Narrator: it was not over].

Recovery … and hospital

By the third week I was sure that I was on the mend. The cough and the fever were gone, I was regaining my sense of smell, and my gastrointestinal symptoms had been short-lived, so I assumed that my body had defeated the virus. Remember, at the time those were the only symptoms, but some people were reporting problems with blood clotting, and we started reading about people experiencing other weird symptoms.

It was around April 2nd that I started experiencing the first round of weird symptoms, I became extremely dehydrated and started peeing all the time, so I had to drink lots of water. I started salivating like mad, my eyes were bloodshot, and I developed a weird smell. On Friday 3rd I had a sudden drop in temperature down to 34.9 C. and started shivering uncontrollably. I called the doctor and they told me that I was fine, that these symptoms had nothing to do with Covid, and told me to just rest. On Saturday 4th April it seemed like he was right, I woke up feeling fully recovered, the nightmare was finally over! We celebrated by having a picnic in our front porch stairs.

On Sunday April 5th I was still feeling great, so we decided to go out for a walk around the block to get some exercise. After coming back home, I knew something was not right. I had a horrible pain in my thorax, like lightning going up and down my sternum. It felt like there was an alien walking around my lungs. After some rest, I started getting a horrible shortness of breath. We called 111, and they told me to call 999 immediately. They told me that they were sending an ambulance, they got to the house, and at first the paramedics didn’t think anything was wrong, I was clearly breathing heavily, but my oxygen levels were fine. They did an ECG, and for the first time she looked worried. She looked at me and told me “there are some irregularities in your readings, so we’re going to take you to the hospital”.

So for the first time in my life I got to ride an ambulance, and I was taken to the Red Zone with all the other Covid patients. It wasn’t too busy, but there was a feeling of crisis, all the nurses were polite, and the doctors efficient. Blood tests indicated that I wasn’t having a heart attack, and everything else was fine. My ECG was taken again, and it was compared with a 2014 one, taken when I broke a rib after falling at home. My X-ray was inconclusive for Covid, meaning that my lungs were cloudy but I didn’t have pneumonia, and they didn’t test me as I had already been sick for 3 weeks, and the doctors assumed that the test would be negative, and they didn’t have enough tests back then. I was released, and I couldn’t shake the feeling that I had wasted everyone’s time, I wasn’t dying.

In retrospect, all the pain was probably due to the inflammation that is now understood to be a hallmark of long covid sufferers, and the shortness of breath could have been caused by all sorts of things, including an inflamed vagus nerve.

The Long Dark Teatime of the Soul

The month of April was tough. I was sure that I was not sick and not dying, all the tests were good or inconclusive. But I felt terrible, and I was getting tired all the time. The days started to go both quickly and very slowly, days became weeks, and then poof, a whole month had gone by.

The constant in this period was the recycling of symptoms, but the most worrying was that my heart rate was quite high. I also developed high blood pressure and low oxygen from time to time, I would get tired with any small effort, and I would get palpitations, my heart felt like it was going to explode out of my chest. But because I had already been to the hospital, I just managed it at home.

What I remember the most were the nights, bad nights would bring about a cold terror, the certainty that I would not wake up. It was a time filled with nightmares and anxiety dreams. And I would still not get better.

We continued our research, and the first sign that we were not alone started in French Twitter, where we found the hashtag #ApresJ20, which was trying to bust the myth that Covid-19 was over in 20 days. We also found the Body Politic Slack group, and eventually the Long-Covid FB group. We also learned that these groups were filled with young and healthy people, swimmers, runners, hikers, and bikers who now can barely walk down the road to the shops.

The questions were the same for everyone in those forums and social media. Why aren’t we getting any better? Was this supposed to last this long? What are your symptoms? Why are the doctors not taking us seriously? Am I still contagious? We started exchanging symptoms, and patterns emerged, things we didn’t know were symptoms until other people reported the same thing. So we learned about hair loss, bad eyesight, nerve pains, covid toes, rashes, the covid buzz… But everyone agreed on the one symptom, the fatigue.

Day 20 turned to Day 30, then 40, then 60, then 120…

The Lost Summer

Besides the fatigue, dizziness, and hoarse voice, the main thing that I experienced during the summer was the pervasive brain fog. It’s hard to explain, it’s a difficulty concentrating, a feeling of unease, mixing words, forgetting words, forgetting what you were doing, and generally not being able to string together even a few sentences. I heard someone describe it as a months-long hangover, but not quite. This would come and go, but it would stay with me until late July.

Life became a routine of feeling better some hours or days and feeling terrible the next, with the crippling fatigue always in the background. I took to gaming as the only activity that I could perform, even reading was problematic.

Physical activity was difficult, I started to try to walk more and more, but every effort would bring back a relapse, even if it was just walking down the road. By the end of July I had a relapse of the cough, and my eyesight on my left eye became really bad, as well as having a weird numb sensation on the left side of my face. I saw another doctor, all my tests came out fine.

I started being able to walk longer distances, but no more than one km at most once or twice a week, but I would still be paying for it the next days. The brain fog was finally receding, and I started feeling more like myself again, and I could look in horror at what was happening in the world outside. So many covidiots!

By August I managed to get an inhaler prescription, which has helped immensely. My breathing is better, the cough is almost gone, my lungs feel better, although I seem to have developed some sort of asthma. My neurological symptoms have subsided, my eye is back to normal, and the strange sensation in my face has almost disappeared. I am horribly unfit after so many months of inactivity, but I am finally able to start walking more and exercising again.

I still hope that there’s no permanent damage to my internal organs, all the blood tests have come out positive, and most of the weird pain is gone. I still get tired some days and I need to rest, but for the most part things appear to be moving in the right direction. Thanks to the forums we have been eating well and getting lots of supplements (not sure if they help, but hey…)

Conclusion

This has been a humbling time for us. I have a mixed feeling of relief, fear, and anger right now. I’m still alive, and during some dark nights during the Spring I didn’t think that I would live to see this day, I know that those feelings were partially caused by anxiety, but when your heart rate is through the roof and you’re lying in bed, you can’t stop but wonder if you’ll ever be healthy again.

I still don’t know if I will have some sort of permanent damage, I’m still a bit worried about my lungs, but I can now exercise more regularly without feeling out of breath. I still have bad days, but the good days are more often.

But I have a strange feeling of anger, and I don’t know where to place it. The anger is against the disease, which is stupid because the virus doesn’t care, it’s just a mindless collection of self-replicating RNA. I’m angry at the hoaxers, antivaxxers, anti-maskers, denialists, and other conspiracy theorists that are making things more difficult. I’m angry that people don’t understand how serious this can get, all you need to do is to pick the losing ticket in the Covid lottery to join the other 10% unlucky ones.

So I leave you with this thought. The day I got infected nobody was wearing masks in the train, except a few Asian people. If everyone on that train had been wearing a mask, I would not have gotten sick that day. Maybe I would have been unlucky another day, but maybe the viral load would not have been that high.

So please wear a mask, the science is unequivocal. Think of the 1% who may die, but also think that you could be infecting someone who will go on to suffer what I have for up to six months, and I wouldn’t even wish this on anyone.