COVID didn’t take me, but it’s taken my life away from me

Sophie Wilson in healthier days, before ‘Long Covid’.
Sophie Wilson in healthier days, before ‘Long COVID’. Photo credit: Bryce Groves

Nearly nine long months after having contracted COVID-19, I still haven’t recovered. I haven’t felt well, or been able to live a ‘normal’ life, since I contracted the virus in April 2020. Every day since I’ve endured a constellation of symptoms: itchy red eyes, disturbed sleep, heart palpitations and ectopic beats, nausea, night sweats, body tremors, tingling limbs, short-term memory loss, inability to articulate words, diarrhoea, headaches, sore throats, screaming tinnitus and chronic fatigue. Some of these are unpleasant and difficult to live with; others are totally debilitating.

Until I caught COVID I had been someone who lived life to the full. I enjoyed using my body to run, swim, eat, touch, taste, breathe and bend. I regularly swam in the sea, canoed once a month and went on long walks and hikes, come rain or shine. I had a busy job running a business and lived on my own. Now my body feels like my enemy.

I had to call an ambulance in the middle of the night when I was struggling to breathe in the acute stage. Paramedics debated whether or not I should be taken into hospital: at the time, the guidance was to stay at home unless the patient’s lips were turning blue. I stayed at home, but the paramedics were concerned enough to ask a friend to call me every hour to check I was still breathing. That night was horrifying, but it’s been nothing compared to the mental and physical marathon of the intervening months.

Once I got through that night, I imagined that I would begin to start feeling better. When I’ve had viruses before, they’ve gone away within weeks. The message that we were hearing at the time was that either you died, if you were old or had underlying health conditions, or it was like a flu you quickly recovered from. I had been in full health so shouldn’t have had anything to worry about.

“I kept trying to get back to my life, but even the simplest of tasks left me exhausted.”

I kept trying to get back to my life, but even the simplest of tasks left me exhausted. My heart was doing scary things and I ended up admitted to hospital with a suspected heart attack, only to be told I had ‘anxiety’.

A couple of months later, when I was still unable to do basic tasks like change my sheets or do the washing, I took the difficult decision to leave my home and move back in with my parents.

Symptoms of differing severity come and go, making it very hard to plan anything, even something as simple as a Zoom call. I have never been someone who has taken time off sick. Now I’m having to accept that my body just won’t keep pace with my mind. Trying to have some kind of a life is like a razor’s edge. Some days I’ve woken up feeling a little better, but, in haste to catch up, I’ve set myself back. Relapses come out of nowhere when it’s impossible to do anything other than lie in a dark room.

Fatigue is crippling. I compare it to lying in a bath of concrete; my mind is willing, but my body won’t perform. On bad days, the energy required to have a shower would be too much. When I do, my hair comes out in handfuls.

One of the biggest frustrations is that there are still no answers. Despite tireless campaigning by many patient-led groups ‘Long COVID’ − as this long version of the illness has come to be known − is still not on the radar of some medical practitioners. Sufferers are being disbelieved by their family, friends and doctors. This is not helped by the fact that many didn’t have access to testing because it wasn’t available in the first wave.

This is in spite of calls from both the British Medical Journal and the All-Party Parliamentary Group (APPG) on Coronavirus to “formally recognise people living with ‘long covid’ and expand research on the long-term effects … to include those who were never hospitalised or tested”. 

Despite the promised funding for Long COVID clinics, anecdotal evidence and my own experience has shown that their existence is a postcode lottery and referrals are hard to get. Patients have concerns about their efficacy. Some have been prescribed graded exercise therapy which has caused relapse (and was controversially prescribed to patients with ME an illness that closely resembles Long COVID). Others received cognitive behavioural therapy, which reinforces the idea that patients are ‘anxious’ and symptoms are all in their head.

I wouldn’t wish Long COVID on my own worst enemy, but with Timothy Spectre’s Kings College app predicting that 1 in 20 people may go on to experience longer-term effects of the virus, it could be a looming public health crisis with serious economic ramifications as we now hit the second peak of the pandemic.

The All-Party Parliamentary Group on Coronavirus, supported by March for Change and backed by the British Medical Association, has called on the UK government to launch a compensation scheme for frontline and key workers who contracted COVID-19 while battling the pandemic and are now living with the debilitating effects long Covid.

In a letter signed by over 60 MPs and members of the House of Lords, the APPG has urged the prime minister to join Spain, France and Germany and the many other countries that have already recognised Covid-19 and therefore Long Covid as an occupational disease. The letter concludes: “The UK government needs to do the right thing and follow their lead in recognising the sacrifice made by so many frontline and key workers by supporting those living with the devastating effects of long Covid now and in the future.”

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