It’s over, I thought! It was the beginning of May, after the weirdest seven weeks of illness I had ever had, a roller coaster of exhaustion, pain everywhere, tinnitus, headaches, and fog: I felt remarkably well, almost high. The aches had gone, my mind was alive, the sun was out. I wrote in an earlier opinion piece: “And today the disease has lifted.”
I missed my dynamic yoga community. What better way to kick start my recovery than by joining an online class. Sunday was a HIIT session. Weights, mat, sweat towel and iPad propped up with Blu Tack. Fantastic. First workout for six long weeks. I learnt a new exercise too, a burpee combined with down-dog up-dog: I thought, soon I will be back to my proper daily workout routines. I could exercise myself out of this state of lethargy.
I was so wrong. After twelve hours, I was completely floored. I was more exhausted than ever and could not get out of bed for three days. The sweats came back. The tinnitus. The foggy head. The headaches. “I am sick of you high-performing medics,” a friend and specialist in rehabilitation said to me. “Don’t expect to be able to do what you did before.” I listened. After being confined to the house for seven days, I went for my first gentle walk. It was effortless, and the sun was shining. I extended it a little further than I had intended, a total of 2 miles. What a mistake. The next day, the covid-19 fatigue was back with a vengeance, and I was in bed for two days.
“Beware the apparition”, a friend said to me. I have had post-viral fatigue in the past with dengue and it just slowed me down, but this was somehow different. “Boom and bust”—you feel great, do a little bit more than usual and come crashing down the next day. I felt aggrieved as I had not done much at all. “You don’t understand pacing”, the ME Association adviser Charles Shepherd told me. He explained that this “post-exertional symptom exacerbation” is a good signal for people with the chronic fatigue syndrome/ME. The difference is with covid-19, the fatigue is happening at the same time as other dangerous complications.
I looked at the Facebook self-help groups, many were describing “relapses.” On quizzing many had the “apparition.” They thought they were better and had taken the opportunity to clean the house top to bottom or go out on a long bike ride. I went back to my diary and on day 3, when I felt vaguely unwell, I had done 20 minutes of yoga. I hadn’t enjoyed it and the next day was floored like I have never felt before. So maybe this activity induced fatigue was there from right at the beginning of the illness, and covid-19 just fast tracks us to a state of health that CFS/ME sufferers recognise.
I have stopped going out this week, and maybe next week will start with 500 metres. I do little work now and stop before the brain fog sets in. I have learnt that I am OK mid-morning and later in the afternoon, and rest in between. I have stopped watching online streaming and TV, changed the playlists from trance to dreamy vibes. I am reading materials about pacing and CFS/ME and listening to the CFS/ME community. I am taken aback that doctors have been so dismissive of what these patients have been saying for so long. I talk to my sister. Her personal experience of ME really helps, and she coaches with practical management of chronic fatigue.
This “covid-19 fatigue” for me started early in the illness. I am still not clear if it is “viral” or “post viral” but for sure it can occur alongside covid-19 effects on lungs, heart, and clotting system-effects that can kills us. I am slowly restarting my activities after these false dawns and am vigilant of overdoing both mental and physical tasks. To my fellow sufferers at home: say good-bye to kick starting the system. Make sure families and friends understand what we are going through. We all need kindness at these times, and employers need to understand, be sympathetic, and allow their staff time to convalesce.
My guess is that there are a lot of us out there, and none of us know how long this recovery will take.
Paul Garner is 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
Competing interests: None declared