My Experience of Long Covid

Nancy Barnes is an Assistant Psychologist within the Keeping Well NCL Hub. Nancy shares her own experience of living with long Covid while working in the NHS as well as her experience of making a full recovery.

I am an Assistant Psychologist working part time for the Keeping Well NCL Wellbeing Hub. For the other part of my week I work for a Children and Adolescent Mental Health Disability Service. I have decided to speak a little bit about my own journey of contracting and living with both Covid symptoms and Covid complications for about a year.

Firstly, if you have come across this podcast because you yourself have had or are experiencing long Covid then I hope that by sharing my experience can validate that you’re not alone with your struggles but ultimately I hope it can serve as a useful insight into someone else’s experience of recovery. There were definitely times when I questioned whether I’d make a full recovery but I am so happy to say that It may have taken me a while but I am now back to full health. If you have joined this podcast and haven’t experienced long Covid I hope this can shed some light on what it is like to live through it. Of course this is only one experience of long Covid and I can’t speak for others, but I believe the more that people share their experiences the more broad and in depth our understanding can be and ultimately the more compassionate we can be to those who are struggling with their health.

Back in February 2020 I fell ill with what I thought was ‘Flu’. I was at work delivering training and I suddenly felt really hot. I asked if anyone else was hot and I realised everyone else was in thick winter coats. I took a moment to cool down outside and found that I was struggling to catch my breath. I remember telling my manager that I was feeling ‘weird’ as I struggled to find the words to express how my body was feeling as it was like nothing I’d experienced before.

I spent the next two weeks in bed sleeping and being barely able to make it to the loo without having a break to catch my breath. Despite how I was feeling I decided that I should go back to work as surely the ‘flu’ would go soon. However when I sat down at my desk I realised I couldn’t really see the computer screen, I felt sick and like I was going to lose consciousness. I needed to go home and rest. I left the office for the second time feeling confused, disorientated and had this strange feeling that I was underwater.

I repeated this pattern of going off work and then pushing myself back to work a couple more times before I was told I needed to improve my attendance at work. I was so scared of losing my job that I pretended I was ok and told myself that I would no longer be sick. On reflection it was very naive to think that my mind had the power to tell my body how to behave. Nonetheless, that April I went back to full time work with the aim of staying well.

April 2020 was a time when the world was changing fast. The pandemic had hit us. Services in the NHS were stretched, meaning staff members were stressed. These six months were like hell. I had extreme fatigue, headaches, breathlessness, brain fog and I was always hot, I fell asleep as soon as I’d finished work and I’d sleep on the weekends. I didn’t want to complain as I felt that my sickness was a nuisance and in the context of the pandemic, I felt I needed to do my part to support people through the crisis. I actually reflect back on this time and feel a bit heartbroken for myself. I feel a deep sadness that I didn’t feel I could express how unwell I felt and I feel sad that I felt misunderstood by the systems which employed me. I wish there was something in place at work, or in society that had told me that it was ok to take time to heal, that I wasn’t letting anyone down and that I wasn’t a failure needing to stop. But before my mind had time to realise what I was doing to myself my body took control and in July 2020 I had a horrendous relapse where I was bed bound for weeks.

I went back to the doctor again, this time they said that in light of the symptoms that I had had for the last 5 months they felt that the flu I had had in February must have been covid. They apologised that they knew nothing about it at these early stages and just told me to rest and signed me off work for a month. This was a scary time as the baseline of what I could achieve physically and mentally was barely 1% of what I could do before. I felt 98 years old, but I was still 28. However this time going off work felt different. I had an explanation for my symptoms which made me feel a little bit more in control of what was going on and I realised that I needed to take my recovery seriously if I wanted to avoid another relapse. The first thing this required was for me to admit to myself how unwell I was. Then I gave up all caffeine, processed sugars and alcohol, took up an anti-inflammatory diet, did meditation twice a day, slept and napped as much as I needed, and did light yoga for people with chronic fatigue.

I have to admit that the recovery was really slow and sometimes frustrating. There were definitely times when I had come to terms with the fact that I would be this slow and weak person forever or at least a few years. I think in a way part of this acceptance of my new life (as a 90 year old) and really leaning into it and almost enjoying my new routine was part of what helped me to start properly healing.

I took the time pressure off myself and hoped that one day I would make a recovery. Three months later I started to notice the brain fog lifting a little, weirdly at the same time I started to feel a bit better my heart started doing strange things (which was scary at times). However I held onto the fact that I was feeling less tired which had to be a good things.  I told myself that it was all part of the healing and by January 2021 I started to feel like myself again. I felt intense joy when I started to feel my breath come back, when my head didn’t throb and when I realised I wasn’t dragging my feet when I walked.

To be honest I can’t say what it was that healed me as I tried so many different things. But I do really think that my biggest learning is that healing can take a really long time, and that although I wouldn’t wish it on anyone I have learnt some amazing things from my experience- so it hasn’t all been negative. I’ve learnt how to slow down and how to recognise signs in my body that I’m overdoing it.  It was also extremely hard to juggle work while trying to get better so it has also strengthened my passion for supporting staff wellbeing and I am so happy to be writing this as a healthy member of staff within the new Keeping well NCL Wellbeing hub.



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