My one year anniversary of Long Covid

Avoiding catching Covid-19 was exhausting, but not as exhausting as living with Long Covid.

A year with Long Covid

Merely days after the 4th anniversary of COVID-19, just after the 4th Long Covid Awareness Day, I caught COVID-19. After 4 years of being careful, masking up, avoiding events, staying out of shops occupied by unmasked men and internally screaming at the lack of empathy in the world I tested positive. external screaming

The days I spent testing positive were “fine”. I had been vaccinated, and thanks to my Autism Spectrum Disorder I had been boosted more often than most. When the test finally said negative I felt relieved. COVID, for me, was not too bad. My fears of being devastated by the virus were unfounded and I relaxed. If I ever caught it again I needn’t worry. Unfortunately, I developed a complication, that one year later I am only starting to understand. I possibly developed Long Covid or ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome).

I say possibly developed because there aren’t any real tests that can be done. My doctor suspects Long Covid but as the clinics are winding down the most they can offer me is a “There there” pat on the back. The doctor has referred me for a ME/CFS diagnosis because there is decades more understanding of that condition and maybe more help.

Life now is exhausting. Actually exhausting, not "Long day. I'm exhausted." The only time I had previously felt this way was after running 15 miles during marathon training. That's how a casual walk can feel now. I feel the weight of my cat when I struggle to pick her up. I'm dizzy every time I stand. My camera sometimes shakes in my hand if held for too long. Internally I've aged 40 years.

A diagnosis of ME/CFS would mean my active is over. My mum had it around the same age and it ended her career, destroyed her and she died mid-50s. I can’t have that. At 46 I’m still just getting started with my personal life and career. My recent ASD and ADHD diagnosis have given me a better foundation to build a life on, along with an understanding of being non-binary. I know the kind of photography work I want to be doing and to find that now I won’t have the energy to do it is heartbreaking. In 2024 I struggled to earn 1/3 of minimum wage. Is that the future? Struggling to fail?

My #YearlyTheme for 2025 is to keep pushing. I ended 2024 by running two 10km runs, for fun and to remind myself that I can keep pushing. I looked forward to 2025 after that, knowing that if I put my mind to it I could achieve the things I wanted to. Unfortunately, I became exhausted a lot more often. After reading about how exercise is bad for you when you have Long Covid, I stopped and rested. When I don’t have a commission I’m resting, and resting and resting.

My mum rested. Eventually, stairs became too much for her, and then walking and then living. That can’t be my future. For some people Long Covid starts to fade after a year. I hope I am one of them. For now, keep pushing... when I can.

Photos from my COVID-19 photo diary.

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