We’d like to share a story of a physiotherapist's personal experience dealing with Long COVID. Darren Brown is a Physiotherapist specialising in rehabilitation for people living with HIV. You can find out more about Darren and his work here.
Unfortunately Darren contracted Covid-19 in March and is now struggling with Long COVID. He wrote a series of tweets detailing how the last 6 months have been for him, and what management techniques have been useful. Many of these overlap with what can be useful for people with ME too.
Darren has given us permission to share his tweet series below. We wish him well and will continue to follow his story.
“I am living with Long COVID. I am experiencing multi-dimensional and episodic disability, across all dimensions of disability. My primary symptom is fatigue & post-exertion malaise, along with other symptoms. I want to describe the nature & extent of disability I experience.
I have used the WHO International Classification of Functioning Disability and Health to describe the nature of my disability living with Long COVID.
Yesterday I measured the extent of disability I experience living with Long COVID over the past 30 days, using WHO World Health Organization Disability Assessment Schedule. My complex sum score = 68.75% (0=no disability, 100=full disability)
I was sick with acute Covid 19 in March 2020 with finger-prick and blood tests confirming immune response in June. After 2 weeks off sick in March, I returned to work and was redeployed, including intensive care.
I returned to work for 6 months. I had ongoing symptoms including fatigue, shortness of breath and difficulty with coordination on stairs. The fatigue was unpredictable, episodic, self limiting, 24hrs in duration every 1-2 weeks. I was able to exercise at that time.
Five weeks ago I did too much. A long walk, a cycle, and a busy day at work. I crashed. I couldn’t function. And I’ve now been signed off work for 1 month with Long COVID.
In the last 4 weeks I’ve been bed bound and housebound with Long COVID fatigue and post exertional malaise. I’ve started to improve, but much slower than I expected or hoped. I remain dependent on help for cooking and food shopping. My GP has signed me off for longer.
The post exertional malaise is brought on by physical, cognitive and emotional exertion. If I do too much, 24-48 hours later I won’t be able to do much more than go from bed to sofa for a few days. I wish I had known and had precautions of this risk with Long COVID.
The information from Physios for ME has helped me so much to cope and manage more living with Long COVID. Particularly pacing, rest, heart rate monitoring, and symptom recording.
I have also found that Heart Rate monitoring has helped reduce the physically induced post exertion malaise (PEM) but not with cognitively induced PEM. I’m still learning to navigate that part.
Pacing has been the most useful technique to manage the fatigue living with Long COVID. The Three Ps (Pacing, Planning, Prioritising) is useful. I’ve added my own 4th P (Precaution) because of post-exertion malaise.
My new essential living with Long COVID is a height adjustable folding stick with a seat (and carry bag). It helps me pace. With social distancing, everywhere has a queue now, for example the shop opposite my flat & the toilet in the supermarket.
I am using Bearable App and it’s been so useful to monitor my Long COVID symptoms, mood, diet, contributing factors & more.
I wanted to share this info about living with Long COVID, as part of my own rehabilitation. I’m proud I’ve been able to do it. I hope it’s useful. This last month, I wouldn’t have coped without my partner & family. I hope they know how grateful I am and how much I love them."
For anybody interested in the WHO Disability Assessment Scale you can find out more on the following links:
https://www.sciencedirect.com/science/article/pii/S1836955320300199?via%3Dihub https://www.nhivna.org/file/5f6201c20c35d/HIV-Nursing-20-3-CPD-article.pdf
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