Blog: My Long-Covid Journey

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.

“At the point of writing this I’m nearly 11 months on since my initial Covid symptoms and starting to feel that maybe, just maybe, long Covid might be on its way to being part of my past.  Rather than an ever-present part of my life. I feel like I am really lucky. It feels like I’ve got back my independence and am regaining my life. I know lots of people whose long Covid started around the same time as mine and who are still very unwell and limited in what they can do. For them, the lingering fear is that maybe they won’t recover. That’s a very hard fear to live with. People who were fit, active and healthy before getting Covid and whose lives now feel so limited and constrained. Many people talk of despair, of knowing that they are lucky to be alive when so many people have lost their lives to Covid, and yet are finding it hard to feel lucky when they are stuck in bed nearly a year later.

I’m getting stronger physically all the time and each week I can do more than I could the week before, but it might be some time before I fully trust that I am recovered. I know of lots of other people who had periods of feeling well before crashing back down again and there is still a risk that might happen to me.

It feels like there is part of me that is wary that I might jinx my recovery, that I might get complacent and so eager to resume my life that I overdo things. I still need to allow time to rest after each activity. I plan for a lie down each day once I have finished my work hours. It’s a different way to live from what I’m used to and it’s a tricky balance to tread. What is the right level of activity changes every week and I’m learning as I go. In this blog I’ll look at different parts of my attempts to balance my life and recovery and maybe some of the problems I hit along the way.

In the last month I started back at work on a phased return. I’m not a naturally patient person and my usual pattern is to try to fit far too much into my week including working way more than my official work hours. Realistically I can’t do that at the moment and it was probably never a sensible approach. For now, I’m increasing my work hours gradually (up to 3 days this week) and I’m being careful to switch off from work outside my work hours. I have to say ‘no’ to some work requests and I don’t like doing that. I need that downtime to do the other things that my continued recovery depends on – including sleep, rest and the forms of activity/gentle exercise that have been helping me to regain my strength.

I’ve set new rules for myself.

  1. If I’m not well enough to sit up I’m not well enough to work – yes I know that would be blindingly obvious to most people – but I have a stupid, stubborn streak and I did work mainly from bed for the first six months of my Covid journey before I became too unwell for that. I’m telling everyone about this new rule so that they can help me to stick to it and to listen to my body if I start to feel unwell again.
  2. Any work I do from home has to be done in my little box room with the computer and work phone left in there when I’m not working. It’s like going cold turkey on my habit of being available whenever needed. Because of the extent of my previous bad habits, I have to be really strict with myself about this, or I know I’d soon  find myself doing “just one more email check” well after the working day should be finished. In these times when so many of us are working from home we need to safeguard our non-work time more than ever. That downtime is what allows us to come back the next day with some functioning brain cells and in my case, hopefully without risking my ongoing recovery.”
Liverpool Waterfront