With the excitement of the Covid vaccine’s arrival, it may be easy to forget and ignore those of us with “long Covid”, who are struggling to reclaim our previous, pre-viral lives and continue to live with debilitating symptoms. Even when the NHS has managed the herculean task of vaccinating the nation, Covid-19 and the new mutant variants of the virus will continue to circulate, leaving more people at risk of long Covid. Data from a King’s College London study in September suggested as many as 60,000 people in the UK could be affected, but the latest statistics from the Office for National Statistics suggest it could be much higher.

I was acutely ill in March, though – like many people with long Covid – mine was defined as a “mild” case not requiring admission to hospital. Nine months on, I am seriously debilitated, with crashing post-exertional fatigue, often associated with chest pains. On bad days, my brain feels like it doesn’t want to function, even a conversation can be too much. I have no risk factors, I’m in my 50s, and have always been fit, but remain too unwell to work – ironically as a consultant in infectious diseases. Watching the pandemic unfold from the sidelines when I should have been working in the thick of it has only added to the frustration of my protracted illness.

My acute symptoms were over within 12 days, and I presumed I’d be back at work the following week. How wrong I was. In the following weeks I developed dramatic hair loss (similar to that post pregnancy) and continued to feel fatigued, usually falling asleep in the afternoon. I tried to steadily increase the amount I was exercising – but suddenly in mid-June I started to experience severe post-exertional fatigue. It could happen on a short walk or it could be while cooking dinner. It was completely unpredictable. When I felt really terrible, I would get chest pains, which I’d not had during my initial illness, and my body seems to need intense rest – and a lot of it. Graded exercise, an approach that has been used to manage patients with other post-viral fatigue, wasn’t working; in fact it seemed to be detrimental and could leave me floored for days. The one thing I realised early on was that pacing was vital.

For months it seemed there was no recognition of what was happening to so many of us, with numerous anecdotal reports of people being dismissed as anxious, depressed or histrionic. It felt as if we had been left in limbo, not followed up because we weren’t ill enough initially to be treated in hospital, but most without appropriate medical care and support for the duration of their illness. I am fortunate to have an excellent GP who has been extremely supportive throughout, but I could hear her frustration at the lack of anything concrete to offer or refer me to.

Image Credit:   Alamy

Post by Amanda Scott, NA CEO.  Follow her on twitter @tantriclens

Thanks to Heinz V. Hoenen.  Follow him on twitter: @HeinzVHoenen

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