Long COVID: 1 Year Anniversary

I was in denial for months of the severity of my condition. Any emotional, physical or mental exertion can cause me to deteriorate. In the first month or so, I was able to kid myself that every bad spell would be the last, but once those hopes were swiftly dashed I began to despair.

Long COVID: 1 Year Anniversary

I became infected with COVID in March 2020. It was Friday the 13th. Words like lockdown and quarantine hadn’t yet entered our daily vernacular. I wasn’t aware of the short-term let alone longer term repercussions of this mysterious illness, as it was still dubbed “no worse than the flu.”

I woke up with a very sore throat, cough, fever, exhaustion and a headache unlike anything I’d ever experienced. With no tests at that time, I quarantined for two weeks and mainly slept. I would still say that my case of COVID was mild compared to the more sinister stories I'd read online.

I took three days off work and seemed to recover after a couple of weeks apart from one residual symptom: every few days I got a sharp pain in my chest for a few seconds. I wasn’t too alarmed, until it didn’t go away months later. I scheduled a doctors appointment where I explained the peculiar pain and was told by a doctor that it was most likely heartburn. I was dubious, but didn't press him. Aside from this minor discomfort I felt more or less normal.

Long COVID Can Kick in Months Later

In May, I started to develop a rash all over my back that looked as if my skin was completely discolouring. I now know this was likely a sign of an autoimmune response to the virus. In October, I started to really deteriorate. I got home after a workout and started to feel faint. The following day, the sharp in my chest became constant and much more severe. It felt as if someone was pressing bricks into my chest. After four days, the pain had increased to the point where I was completely immobile with a sharp stabbing pain in the centre of my chest. I struggled to breathe normally and was bedbound for four days. Every night I went to bed wondering if I would wake up. After any exertion (from picking up a bag to going up the stairs) my heart would race to 130-160 bpm. I now know this to be called dysautomonia and post exertional malaise. Terms I have unfortunately become intimately acquainted with. As I felt myself continue to deteriorate, I called 111, spoke to a clinician and was urged to go directly to A&E.

Rash that I developed a few months after getting COVID


At A&E my oxygen levels were checked and seemed normal. I also did an ECG to check my heart and that also came back normal. I was urged to go home and take paracetamol. Even then I knew nothing I was experiencing was "normal."

Dismissal of Symptoms

For a very long time, doctors were very dismissive of my symptoms. On the two occasions I was incapacitated to the point of not being able to stand up, I went to A&E and doctors asked me if I was a happy person. I responded that I was happy when I didn't have chronic pain. I mentioned the possibility of catching COVID in March and the intermittent chest pains I got every few days since then. When the doctor repeated my symptoms back to me he asked, “so you caught a cold in March?"

I was told I had costochondritis, which is a catch-all term for miscellaneous chest inflammation. I was put first on naproxen to deal with the inflammation and that worsened my breathlessness. I took it for a couple of weeks and then was told it was not safe to take longer term. I was then put on amitriptiline for nerve pain, which was a welcome improvement. Painkillers have made my life more more bearable, but unfortunately I'm still waiting for a plan to treat the underlying issue.

The Mental Health Toll

Three months later I could feel no meaningful improvement. I was no longer able to work, as after trying to push through the symptoms I made myself sicker. Seeing other people my age and much older, get COVID and swiftly recover, made me feel that I should be able to push through this. I was in denial for months of the severity of my condition. Stress or anxiety made my condition that much worse. Any emotional, physical or mental exertion can cause me to deteriorate. In the first month or so, I was able to kid myself that every bad spell would be the last, but once those hopes were swiftly dashed I began to despair.

I was bed bound a lot of the time and unable to adapt to the dramatic change of pace that my body demanded. Any attempts to increase physical activity with a twenty minute walk or even going up the stairs a little too quickly on a “good day” would increase my incapacitation a few days or hours later. The uncertainty surrounding my condition and the unwillingness for doctors to diagnose me with long COVID until a third trip to A&E in late January made it very difficult to keep going.

My third visit to A&E heeded different results. After seven days of sharp chest pain, I was urged to go back to A&E and for the first time my condition was acknowledged. The doctor said that he wished I was the only person he had encountered with these symptoms. He said what I was experiencing was most likely long COVID. I almost burst into tears as it was the first time my fears had been confirmed by a doctor. It felt bittersweet, but with a diagnosis I could try and find some answers online.


In between two bad spells, I spent a week or so trying to find anything that could help. I even paid to see a private doctor. Sadly I was told that the variety of symptoms I was experiencing were most likely the result of an autoimmune response to my infection with COVID in March. Even if I did a variety of tests that I would have to pay for myself and could cost thousands, it was quite likely that there would not be an easy treatment plan that I desperately sought. I googled autoimmune on my way home, "a condition in which your immune system mistakenly attacks your body." And that is exactly what it felt like: like my body had given up on me.

My Life Before

Prior to October, I was very active. Working out at least five times a week for most of my life. I used to be a competitive swimmer and I even did a triathlon in 2019.  This has made adapting to this new life even more disconcerting, as sometimes even standing up can be too much for my body to handle.

At Blenheim Palace Triathlon in 2019 

My Life Now

The lack of any meaningful sign that I'm recovering is disconcerting. Over time I've concluded that my condition is cyclical in nature, with episodes of sharp chest pain, migraine, fatigue and breathlessness that can last between three and ten days. This is followed by milder symptoms for a few days or a week (if I'm lucky) until I relapse again. The pain builds throughout the day and increases the more I exert myself. On bad days, I struggle to walk three metres to go to the toilet and sometimes I'm unable to stand up. I spend the day in bed taking deep breaths and trying to distract myself from the pain. I've had several days where I wake up and immediately cry when I remember that I cannot count on my body in the way that I used to. On a good day, I can manage a fifteen minute walk, have a phone call and read. The hardest part is that on less difficult days, I can kid myself that I have recovered until that hope plummets a couple of days later. Even on good days, the mental struggle is ever present and there is a little voice asking "how long can you keep going like this?"

I try to take every day as it comes. Some days that’s easier than others. I’ve been part of long COVID support groups since January and have been able to scour the resources channel to find an array of vitamins that have been known to help others: quercetin, niacin, vitamin b, vitamin b12 and vitamin d. I test out one vitamin before moving onto another. I’m testing out a low histamine diet (to flush out any inflammation) to see if that helps. I have to hope that if I keep it up, something will change. Sometimes I worry that this will be the rest of my life.

I am thankful to the people in my life that have supported me and I don't know where I would be without them. By summer there could be over a million people in the UK suffering with long COVID in some form. This has been by far the most difficult and isolating period of my life. If you are going through this too, know that there are others out there also looking for answers.

Resources

Support group: https://www.wearebodypolitic.com/covid19

Best article I've found on how to support someone with long COVID: https://www.huffingtonpost.co.uk/entry/support-loved-one-long-haul-covid_l_6037eceac5b60f03d9b320d9

Why I'm trying a low histamine diet: https://static1.squarespace.com/static/5a4269f28c56a85fe95206ea/t/5fdbcd3932dbdf6e63fdace7/1608240486599/DrTinaPeers-LongCovid-17Dec2020.pdf