Pre-covid, when I wasn’t at work, I was always outdoors doing something active. I was an avid runner and cyclist. I enjoyed yoga. I went on cycling holidays, ran marathons. I went on hiking holidays and planned to do more.
I worked full-time as a clinical scientist in a typical understaffed, outpatient department. You needed to run at 120%. Over 15 years I’d worked my way up the ladder, and in late 2019 started a new job which had seemed like the perfect fit for me. I was in my mid-30s. Early February 2020, I had what I believe was my first Covid-19 infection. I had never been so ill. It went on for a few weeks. I was in and out of work, off sick for a few days at a time, but this was before you could get tested unless you had been abroad. I ended up in a Walk-In Centre one weekend with suspected pleurisy and torn rib muscles from weeks of coughing.
Eventually I recovered enough to go back to work just as we had the first lockdown. I couldn’t exercise, had a constant headache and was so tired it was painful. I did slowly get back to exercising (and repeatedly tearing my rib muscles). The idea of post-viral fatigue crossed my mind, but I was able to function and I was improving, so I wasn’t too worried.
I had planned to do a long course weekend triathlon in the summer of 2021 (Ironman over 3 days). However, I tested positive at the beginning of January. I was meant to be on leave, but it was cancelled. I definitely caught it at work. I had contact with known Covid-19 patients and didn’t use public transport. I didn’t go anywhere but work, spent Christmas alone, and refused to meet up with friends who weren’t that worried about it. I presumed that like the rest of my colleagues that I’d recover quickly. 3 years and 10 months later I’ve never recovered.
After most of 2021 off sick I started to get back into work, after some pressure from managers, but I was overworked and deteriorated massively for a few months and had to try again. As well as fatigue, post-exertional malaise and headaches, I was left with constant nerve pain. I got back to reduced hours but without a reduced workload. It was not really sustainable.
After an operation on my spine (which was unsuccessful) and then being reinfected by someone I knew earlier this year, I’ve deteriorated again and been unable to get back into work. I tried, but my functional level is now so low I only leave the house to go to appointments and have to rest in bed every afternoon, if not the whole day. I had to move back in with family, for help with cooking and laundry. Knocking 40, this is hardly the life plan.
There have been occasional doctor’s appointments, but it’s been that typical story of long wait times, a struggle to be taken seriously, and a lack of real understanding of what the problem is. Nothing helpful has come from any of them. I meet the criteria for ME but without any effective testing, treatments or services I’m still ill.
There was occupational health input over the last few years, but it’s taken as advice only. I don’t feel I was ever really supported to recover and keep well. I have a friend who was more recently ill, not as affected, but has been well supported. The difference is crazy. All the right things can be done on paper, but in reality, you’re treated as a resource to be used to the maximum rather than as a human being. Pushed beyond the limit because staffing is short. I’ve been verbally criticised for effectively being a disabled person. The effort put in and the symptom exacerbation when not at work not seen. Any support to allow for possible recovery again is now lacking. I’ve been pushed to resign, probably to avoid the paperwork.
Some friends stopped keeping in touch altogether. I’ve had to cancel most of the sparse attempts to meet up outdoors, when the weather’s nice enough, and I feel I can manage it that day. Others occasionally still check in with promises to maybe meet up outdoors in another 6 months, with a promise to do a lateral flow test on the day.
In my previous life I was fit and healthy. I ate healthily, exercised, socialised and never had to consider my own physical limits. Anything can happen to us, but I had hoped that by looking after myself I would stay well for most of my life. I also believed that when you become ill there are services to support and hopefully treat the problems that arise.
I’m now waiting on ill health retirement. I still want to do ‘stuff’. I want to be well, go hiking, go for a run, and have the energy and functional ability to throw myself into work again. Unfortunately, that is all now impossible.
I still hope to one day get better, but it does seem like we were all treated as a disposable resource.