Blog: My Long Covid Journey – March

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Sarah Thwaites fell ill last March, just days before the first English lockdown began. Mysterious symptoms, extreme fatigue and the end of her daily routine became the norm. A short while later it became clear that Sarah was suffering from Covid-19. As Sarah now attempts to rebuild her life and her strength, she has agreed to write a monthly blog for us, chronicling her recovery and experiences of long Covid.

“I am – in usual times – extremely physically active. That wasn’t always the case, as a child I was uncoordinated and clumsy, the last to be chosen for the school sports team and I still have a dislike of team sports. But as I’ve aged, I realised that much as I don’t enjoy ‘sport’, I love being physically active. I tend to have a lot of physical energy that I need to use up and that serves as a counterbalance to spending long hours in meetings or behind a computer. Pre-Covid I spent as much of my non-work times as I could outdoors – hill walking, year-round outdoor swimming and taking care of the allotment I’ve had for over 25 years. I didn’t own a car and didn’t need one – anywhere I couldn’t walk to – I would cycle to instead, arriving at my work meetings in hi-vis and a cycle helmet.

When Covid-19 hit I dialled that back a bit. I thought I was taking things gently, but I found that in the week and months following my infection,n my body didn’t respond to activity in its usual way.  A short cycle ride to the riverside in April when I thought I should be recovered, aggravated my breathing problems enough to lead to an A&E visit a couple of days later. As I continued to decline  by the summer I reluctantly had to accept that I wasn’t fit enough to leave my street. By that point my earlier lung issues had started to ease, but I was struggling badly with heart-rate issues whenever I wasn’t lying down – my heart rate soared and the effort of doing any activity felt like a marathon -with the addition of a strange range of symptoms the following day. These varied over time – for a while a key one was going back to the intense chills and shivering I had experienced in the first weeks of my Covid infection – even in the height of the summer heat – alongside chest pain and breathlessness. At other times, it was a headache and nausea, at others a light sensitivity so bad that I only felt comfortable with my eyes closed, had my laptop set to minimum screen brightness and used blue light blocking glasses. The strangest symptom was possibly the feeling of an electric shock under my skin – there were days when I had that constantly – day and night. As I learnt over time this bizarre cocktail of ever-changing symptoms was Post Exertional Malaise and anything that took more energy out of my body than it was equipped for, led to days on increased illness. Because the activity it took to cause this became so little that additional symptoms ran into each other making it hard to know what had caused what.

And so in an attempt to reduce the symptoms I cut out more and more activity. I passed my allotment key to my adult son so that I wouldn’t be tempted to try to get there despite it being just around the corner from my house.

I bought a shower stool too but even with that I had to keep showers infrequent, very short and I needed to lie down afterwards  to allow my heart rate to subside before I could dry and dress myself.

Sarah’s shower stool and kitchen perching stool

I also bought a perching stool for the kitchen, so that my heart rate soared less when I needed to cook myself some food or wash up. My meals became simpler so that they took less effort – a few things thrown in a pan to make a stew and reheated for days – a far cry from my usually gluttonous and rather random experimental approach to food. Even with those adaptations I still sometimes found myself too tired after making food to eat it. The effort of sitting up and lifting a fork to my mouth was sometimes just too much.

When I stopped being able to manage the stairs even once a day to get to the kitchen I had to move in with family to be cared for while I lay motionless in bed. By September I was spending my time in bed. It was difficult to accept that I’d become so weak that I needed my food cooked for me and brought to me, but that was how it was. My body felt fried and on edge. I couldn’t listen to music, read a book, keep my eyes open for more than a few minutes at a time. I was doing everything I could to try to restore some calm to my body. During those months, the idea of returning to exercise seemed a remote possibility and my memories of cycling, swimming and the hills I’ve climbed, felt like something from another life-time. 

Sarah’s lap tray for painting

For some time, even the most minor movement was the equivalent of exercise for me. Returning to activity needed to start very small and slow, first with lifting my arms in the air once an hour and circling my toes in bed. From then I could gently bring back in household activity starting small with getting myself a cup of tea, or washing a few dishes, while sitting down. Each new activity needed to be increased slowly and with more rest time planned in, each time I was taking on a new task.  Even now I need to balance everything I do with the appropriate amount of rest and recovery time. I’ll talk more next time about regaining some of my strength, but for now the good news is that I managed to eat my breakfast downstairs the other day for the first time in 9 months. Mornings have been my worst time and until now I needed to avoid using the stairs until later in the day. Also in the last couple of weeks I’ve stopped needing my shower and kitchen stool. I just noticed myself standing up to wash up and shower and feeling no need for the stools. Unlike before, my legs weren’t feeling weak, my heart wasn’t pounding and I didn’t feel like I’d fall over if I didn’t sit down. I now cook the food I want to eat, not just what will take the least energy. I’ve even found myself singing to myself cheerfully as I do. It feels like another step back towards my normal life.”