It’s been nearly six months since I tested positive to COVID-19. I am still ill.
I’ve grown increasingly frustrated with my inability to shake it off, and equally with the understandable misconceptions many people have about the condition, so I have written this account both as a personal record and to shed some light on what is often an invisible illness.
I contracted COVID-19 in January 2021, most likely through my work in healthcare. My initial lateral flow test was negative despite my suspicions, however a PCR test 24 hours later proved positive and this was confirmed by a subsequent LFT.
I was one of the luckier ones and only had mild symptoms. By mild, I mean I was brought low with a fever and a cough for a few days but for the most part I was able to work through it (from home). It still felt pretty awful at the time, but my breathing was never impacted hugely. As I self-isolated through the worst of it, I was never active enough to exercise and test my respiratory system at its most diseased and I’ve still yet to do anything particularly strenuous.
I recovered from the acute infection within a fortnight, but it was only then that the more insidious symptoms became apparent. I would become exhausted, often for little or no reason. Episodes would often be preceded by a tingling in my hands and feet. I discovered headaches the likes of which I’ve never experienced before; aggressive and debilitating. My ability to concentrate would ebb away, with entire trains of thought evaporating mid-articulation. I started to worry I was a stroke risk.
When I was able, I would try to follow the ever-changing understanding of what was officially labelled post-acute COVID-19 syndrome, but is more commonly referred to as ‘long covid’. The science seems far from settled but there were some encouraging hypotheses that certainly rang true for my case.
Two key underlying causes seemed to be gaining traction: microcirculation issues and autoimmune reactions. The microcirculation possibility didn’t make me feel any better about the stroke risk angle, but my GP had already advised me to stop self-medicating with aspirin and I hadn’t deteriorated or had any FAST-positive symptoms, so I was happy to put that one to one side for my own sanity.
The idea that aberrant autoimmune behaviour was behind my symptoms made a lot of sense to me. Studies had indicated a higher prevalence of long covid in people with pre-existing autoimmune conditions like hayfever, asthma, and eczema. I have suffered from all of those when I was younger and still suffer from a stupidly aggressive immune response to some kind of pollen.
Weeks passed and there seemed to be little change to my symptoms. They wouldn’t be present all the time, but they were frequent enough to render me relatively ineffective. I remained sick from work and was of limited effectiveness around the home. I learned to manage my ‘energy envelope’ in a way I’d witnessed my late mother do with her lifelong struggle with Myalgic Encephalomyelitis (ME).
This enforced inactivity comes with its own problems. Over recent years, I have faced metabolic syndrome, high cholesterol, non-alcoholic fatty liver syndrome and a host of potential inherited conditions. Both my parents died in their 60s so I had gone to great lengths to address any potential health issues through diet, activity and healthy living. I had managed to reduce my weight from 17st 4lbs (110kg) in 2017 to under 15st (95kg) in 2018, where I had remained within an acceptable BMI range until contracting covid. My improved health had had a positive impact on all of the previously mentioned health concerns.
Further, my good health had empowered me to be able to manage a host of challenges through a difficult period in my life. I had been able to maintain my healthcare career while supporting my wife who had herself been suffering from a debilitating and career-affecting vestibular disease, and I was able to provide palliative support to my dying nephew.
But now my long covid symptoms have undone all that effort and removed that capability. My weight has increased to over 16st (102kg), the tests required for referral to the long covid clinic have indicated that my fatty liver syndrome has returned, and my persistent long covid symptoms makes any return to good health all the more challenging. Unless I can overcome this, moving forward I accept that my physical and mental symptoms may be attributable to causes beyond a wayward immune response. But it’s worth remembering that it was covid that sabotaged my carefully curated homeostasis.
To be clear, not every moment of every day is a haze of fatigue and headaches. I have relatively asymptomatic periods of hours, sometimes days, during which I can be productive. When well (or only mildly wiped out), I still walk the dog and take the kids to school. I’ve cut the grass once this year. But the symptoms always return and I am still not clear if activity triggers symptoms. However, I have reached the point where avoiding activity for fear of a relapse has greater risks to my health than doing what I can when the opportunity allows.
One ray of hope for me lies in the vaccine. In mid-April I had my first dose of the Oxford-AstraZeneca vaccine and in contrast to most people’s experiences, it made me feel much better. For about a week, the brain-fog cleared, the fatigue stayed at bay and I felt well enough to return to work, so I started to make plans along those lines. Frustratingly the symptoms returned soon after and have remained my constant companion since. My second vaccine dose is tomorrow, I am hoping for a similar, but more permanent effect.
In conclusion, I am absolutely committed to overcoming the long covid challenge, and would ask that those who have not experienced it at least recognise its existence and its impact. This isn’t something that can be ‘walked off’. Nor is this a hoax or a conspiracy. A great number of my healthcare colleagues have also suffered similar symptoms or worse. Some have died. This remains a very real and persistent health concern for everyone, and it’s absolutely not ‘just the flu’.
Thanks for reading and take care of yourselves. I’ll update how things go with my second jab and beyond when I can.