Paul Garner and colleagues describe how a self-help pacing group has helped them manage their long covid
Being ill is a lonely business, and worse with covid-19. Locked away from friends, no collegial coffee breaks, no face to face medical consultations, and a television full of Orwellian government briefings. Add symptoms that your friends don’t quite believe; fatigue that doctors have framed as psychosomatic; and the poison of post-exertional malaise with no advice on NHS or NICE websites. The isolation is complete.
With little formal support, many of us turned to social media. This helps, but has a limit. There are only so many times you can read long stories about other people’s illness, or miracle cures from histamine free diets. Four of us, all struggling with random, vicious symptoms, and finding it difficult to pace alongside family, life, and work commitments, decided to work together. We set up our own self-help pacing group twelve weeks ago: a community of practice to swap stories, share experiences, and provide mutual support.
We all experienced different parts of the spectrum: Iulia had persistent shortness of breath and constant headaches; Linn had fatigue and cardiac symptoms that limited her ability to carry out simple daily tasks; Helen had gastrointestinal symptoms, brain fog, and fatigue; and Paul had fatigue and brain fog. We agreed to meet weekly, online, for 20 minutes, and message as needed in between.
This self-help pacing group has been a game changer for managing our long covid. Given the variety of our symptoms, we were all astounded that the management approaches that worked were so similar. We were all getting relapses; we jointly concluded that if we overdid it, these relapses were guaranteed, but the items of expenditure were different. The boy in the group could not work out why he was relapsing, so passed around the extensive daily records with heart rate, screen times, and length of sleep. Iulia asserted firmly that five hours working and five kilometres walking each day was too much, and he was put under close watch. Yet the discussion around how much to exercise was important: two members realised that they were frightened to go out, and then started gentle walking outside, sometimes just a few hundred metres a day, building up gradually over time, and this was pivotal in their recovery; whereas one member, disabled with heart symptoms, went for short walks to the beach to seek out the joy of the sound of the waves while watching the sunset.
Managing pacing helps us prioritise our health. Two of us with children always put the children first, pushing through the fatigue. One runs her own business and needed to keep doing enough to protect her employees and not let down clients. Realising we had to be healthy to look after others assuaged the guilt of being less attentive to the children at home or placing heavier burdens on colleagues at work. For now we have all had to step away from a lot in our work lives: you cannot keep going if you make yourself unwell, so simply say “no”, and negotiate or design adjustments in what you expect of yourself. Learning to recover, learning to potter, learning to relax, was a new experience to us all.
The group helps us practically. We discussed sleep: critical to how we felt the next day, we shared practical approaches such as wind down music, no late screen time, weighted blankets, and routines to help you return to sleep, such as counting down from 1,000. We all decided to use Garmin Body Battery as a form of managing our energy levels by watching the battery levels during the day and resting if the battery seemed to drain quickly.
We all thought we were going to get better soon, but gradually became open to the probability that it might take much longer, perhaps twelve months. This was an important step and helped us make realistic goals, relieving the anxiety around the slow speed of recovery.
We are mindful of each other: one person went off grid for 24 hours, and the group did not settle until we had a message that they were fine. It was as if we felt held by the group, it was a safe space. At times we felt inhibited to tell those around us that we still feel ill; we felt guilty, we think they won’t believe us, or we end up looking after them to stop them worrying about us. But in the group, we can moan about our headache or malaise, it is a safe space to talk about this, to vent our frustration.
Most of all, the group gives us hope. One of us was very unwell when the group started and living alone. It really helped to hear from someone else in the group that she was just the same a month prior. All of us fear this illness might last for ever, but just saying it helps you feel better. We also witness each other improve, and are able to point this out, which gives a tremendous boost to our collective mood.
As we learn to recover, we are not so lonely with our illness. We are healing, thanks to a little help from our friends.
Iulia Hammond, General Practice Trainee, Greater Manchester. Twitter: @iuls
Linn Järte, Anaesthetic Trainee, Swansea. Twitter: @LinnJarte
Helen Calder, Director, Gingerhead. Twitter: @gingerheadhelen
Paul Garner, Professor at the Liverpool School of Tropical Medicine. He is Director of the Centre for Evidence Synthesis in Global Health and Co-ordinating Editor of the Cochrane Infectious Diseases Group. Twitter: @PaulGarnerWoof
Competing interests: None declared.