Oh, how I missed my life. Previously a fit and busy writer, poet and teacher, I was in my second year of recovery from Long Covid. My symptoms included breathlessness, heart palpitations, debilitating brain fog, persistent fatigue and post-exertional malaise (PEM). The early months were spent in disbelief. Was this real? Was I making it up? How could I not stand up while the kettle boiled?
A PEM crash is like flu: full body aches, light and sound intolerance and an inability to get up for days, weeks for some. It’s triggered by “overdoing it”. For me, then, that was walking up a slope, carrying shopping bags or having an intense conversation. The only thing for it is to lie low and rest, rest deeply until it lifts. If you push it ... it pushes back.
It’s a very dull illness. Some days my husband left me up breakfast, lunch and a flask before heading to work as I couldn’t get downstairs. Looking out, I’d try not to be too envious of our octogenarian neighbour, walking his dog three times a day.
The World Health Organisation defines Long Covid as symptoms, otherwise unexplained, persisting three months after an initial Covid infection. It estimates for every 100 infections, 10 people develop one or more of a constellation of 200 symptoms, although persistent fatigue seems to be a constant. Some recover within months, for others it takes years. The underlying mechanism is still unknown but researchers are investigating viral persistence, micro clotting and endothelial damage, and immune and inflammatory responses.
The statistics are mind boggling. There are 400 million sufferers globally, a quarter to a half million people in Ireland have had symptoms, 2.2 per cent of the adult population symptomatic for over a year. UK immunologist Danny Altman estimates the future medical caseload will be equivalent to that of heart disease.
Like many with Long Covid I’d do virtually anything to get well. I read about people so desperate they had their blood siphoned out and “cleaned” in Cyprus – definitely not one I’d try. I did find myself in the basement of Bandon Town Hall, getting Hyperbaric Oxygen Therapy (HBOT), one of few suggested and contested therapies – one consultant suggested that I try the treatment as there was some evidence that it could be beneficial, while another consultant was very dismissive of it.
“Have a good flight!” The metal door clanged as a volunteer sealed us into the “dive tank”. We settled in with magazines, masks hooked up to the hissing oxygen supply. My ears went as we dropped the equivalent of 13 metres “underwater”, breathing pure oxygen, our inhalations and exhalations loudly audible. Six sessions in, I could stand and walk longer than I had in a year. I gladly took this 10 per cent improvement.
From my experience of dealing with depression, I realised early on I’d have to find some way to manage this, devise a rehab programme and find support. Acupuncture set me on a slow upward spiral, while deep breathing, meditation, (beditation really, as I couldn’t sit up) and gentle stretching eased symptoms, giving me micro doses of energy.
[ Long Covid: ‘I feel alone and lost . . . it is difficult to see an end to this’Opens in new window ]
Days were spent resting, punctuated by small pockets of activity. I wasn’t doing any sustained writing as the cognitive effort caused crashes (teaching wasn’t even on the horizon), but I began a painting course, something I’d long wanted to do. It seemed to use a different part of me, reawakening vitality, becoming a crucial part of cognitive and physical recovery. It also turned out I wasn’t bad and I’ve started to exhibit.
Eight months in I attended a private Long Covid clinic which prescribed Low Dose Naltrexone. A GP put me on HRT. My sister-in-law, a sports journalist, told me about wearable micro current devices she’d read might help, “It sounds mad ... but ... they developed these for race horses. They don’t take risks with those lads!” I wore it daily, a flashing ankle tag, which seemed apt given, as a friend pointed out, I was under effective house arrest.
[ Long Covid must be treated as the serious threat it is to public healthOpens in new window ]
Each intervention boosted me five or 10 per cent, but morale is hard to sustain when life is a round of snakes and ladders. After a Covid reinfection I slid right back down.
If HBOT was the most dramatic of the things I tried, the most fun were Scottish Opera’s breath cycle and Derry Well Woman Centre’s Long Covid yoga classes, run by occupational therapist Orla O’Brien, herself in recovery. Both free and online, they got me through a tough winter and beyond. Hope, resilience and community are needed for this process. It’s a relief to be in a space where no explanations are needed, tips shared and many laughs are had.
'I go up the stairs on all fours to conserve energy' - Ireland's ignored health crisis
“We’re going to try a wee bit of bee breathing. Great for toning the vagal nerves, calming the autonomic system and helping your recovery.” There were 20 of us logged in, many from bed. “My recovery?” The words landed, I held them tight. We were all at home buzzing away.
The power of recognition and need for support cannot be overestimated. There is an uncanny silence around Long Covid, no recognised recovery pathway, and for myself, mostly, a lack of meaningful medical support (not an uncommon experience, I was to learn).
Fatigue management sessions with Orla were a lifeline. Learning about pacing was a revelation after years spent “pushing through”. Imagine resting before you get too tired! Initially working within available energy meant using a shower stool, resting after getting dressed, breaking up tasks, so: veg prep in the morning, 10 minutes spent writing followed by 20 minutes of deep relaxation. It confirmed I was on the right track with breath work, recumbent stretches and saving limited energy for things I loved.
The lack of general understanding and of consistent, meaningful public health support causes great stress and unnecessary suffering, leaving people much sicker, for much longer than necessary
Another valuable resource I found was Suzy Bolt’s 360mindbodysoul, with classes, recovery stories, interviews with medics and a similar emphasis on the autonomic nervous system and community. I know I’m one of the lucky ones; I’ve no underlying damage, a supportive partner, a home, a strong network of friends and family. I’ve health cover and some savings which allow me to access treatments. Returning to full-time work has been slow but being selected for the Basic Income for the Arts pilot was a game changer. It meant I focused on building up time at the desk from 20 minutes to five hours most days and am back doing readings and workshops.
When I regularly express frustration at the lack of urgency or basic knowledge about Long Covid, recurring phrases from the medical community include: “It’ll burn itself out”; “There’s no proven treatment”, or “You see – it’s all so new”.
However, most viruses have a long tail and chronic fatigue is nothing new (ask anyone with ME). Learning about the aftermath of the Spanish Flu was a revelation. British schoolteachers reported on pupils’ lassitude. In Tanzania, survivors were too fatigued to sow subsistence crops and the 1920 “Famine of Corms” resulted. New Zealand and South African agricultural output also dropped dramatically.
Historians unearthed many descriptions of post-flu “loss of muscular energy” and periods of “apathy and depression ... sleeplessness”. One sufferer recalled: “We were leaden-footed for weeks ... each step meant a determined effort. It was very difficult to remember any simple thing, even for five minutes.” Oddly I found comfort knowing I was part of a contemporary “mass disabling event”. It helped dispel lingering shame around the condition.
I had to work out a lot of this for myself. The lack of general understanding and of consistent, meaningful public health support causes great stress and unnecessary suffering, leaving people much sicker, for much longer than necessary. GPs need training, while large numbers of multidisciplinary teams – including neurologists and cardiologists – are required. Long Covid Advocacy Ireland do heroic work bringing this to policymakers and highlighting continuing risks with successive Covid waves.
[ Irish scientists discover why people with long Covid can suffer ‘brain fog’Opens in new window ]
But there is hope. Many people are recovering and some research progress is being made. Three years on from that mild Covid infection, I’m getting back to a normal life. A turning point came last year when, despite everything I was doing (and carefully not doing) progress remained painfully slow. Despairing, I tried two new interventions which made a noticeable difference: I got back into sea swimming (cold water can be beneficial for inflammation and other symptoms) and discovered the Perrin Technique.
This therapy, which is recognised by the British NHS, posits that the primary cause of Long Covid (and chronic fatigue syndrome, or ME/CFS) is lymphatic and glymphatic system blockage. Some of it can be done at home following YouTube clips; it’s safe and at worst relaxing. I began gentle, daily self-massage routines for head, chest and back, immediately feeling tiny improvements; I was standing longer, breathing easier and sleeping deeper. I attended the Republic’s only Perrin practitioner, a physiotherapist, and slow, sustained progress followed. I’m now 80 per cent recovered – it’s not a quick fix but, crucially, a recent reinfection didn’t set me back.
Nowadays, I’m at the desk after a cold shower, with two new books due out. Because the free resources I accessed were all UK/NI based, I wanted to develop something here and am running online Long Covid poetry workshops for Riverbank Arts Centre’s First Fortnight programme. Recovering from this illness is a long haul but I’m delighted to be on the “right side” of it, due in no small part to generous support received, with new friendships made and skills learned.
After a little rest, I’m off to seek out that last, elusive 20 per cent of recovery.
Nell Regan is a poet and non-fiction writer. Her debut children’s book, Just Jump, is due out with WonderHouse Books next year. To book online her Long Covid poetry classes go to firstfortnight.com
