Recovering after Coronavirus: A personal reflection written by Eleanor

“We must start taking a proactive approach to treating post-COVID fatigue as an urgent matter of public health. The consequences of this long disease for sufferers is profound.”

As the world began to lockdown, I fell ill in the first week of April, hit with a huge wave of extreme exhaustion. I spent five weeks barely leaving my bed with fluctuating symptoms: breathing issues and muscle pains, sore throats, and headaches, all underpinned by constant severe fatigue. Community testing was not available, and there was no chance to see a doctor in person. The symptoms weren’t what was being described as classic COVID-19, but as time went on, there seemed to be little other explanation.

At around six weeks, I rallied a little and expected to get better. I started to take on some work and household tasks. Feeling stronger, I did some aerobic exercise, a short burst of skipping, and this led to a major relapse. I could no longer rely on my body. On good days I worked, leaving myself feeling dizzy, weak, and mentally exhausted. On bad days I lay in bed or on the sofa and hoped no one would try to contact me. I was in what I can now see was a classic ‘boom and bust’ pattern.

Seeking help for post viral exhaustion

I’d been in touch with my GP surgery several times. They had suggested that more rest was required, as the virus was tricky to get over. I should ring back in a week, or two weeks, if I still hadn’t recovered. I saw people I knew with classic symptoms recovering quickly and felt that something was different in my case.

I started to read the growing number of articles that talked about long term sufferers of COVID-19 and it was a huge relief to see that I wasn’t alone. But none of these articles talked about a way out through to recovery. After nine weeks of feeling unwell a close friend of mine, a doctor, started talking to me about post viral fatigue. My initial reaction was to push this away – I couldn’t cope with the level of engagement that this diagnosis might require of me. The idea that I might have something like Chronic Fatigue Syndrome or ME was terrifying – the path to recovery seemed so long. But when I felt I had no options left to turn to, it seemed worth a try.

Post viral fatigue and exercise

My friend sent me an NHS booklet on recovering from post viral fatigue which set out how to work with Graded Exercise Therapy. From this guidance, I started my own basic programme. I immediately learnt that sleep does not cure the fatigue of post viral fatigue. I stopped sleeping or resting in bed during the day and took up meditation to try and get through drowsy periods. The urge to sleep during the day receded surprisingly quickly. I didn’t feel worse – though I didn’t feel that much better either. But at least I didn’t have to contend with the post-nap fogginess that had been another drain on my mental faculties.  I also learnt that the muscle pain I was feeling in my legs, though uncomfortable, was not dangerous, and started to try and sit normally rather than only sitting with my legs fully elevated. It was a really small start – but it was something.

I returned to live with my mum, cutting back all the daily tasks that had been overwhelming me. I started a baseline exercise programme of 10 minutes walking a day, which I thought I could achieve, and since that first week, I have been doing a weekly increase of 20%. I kept on doing some daily Pilates and yoga stretches and started to do some basic work in very short bursts.

Finding the fatigue & post viral expertise of Vitality360

Two weeks into my own made-up programme I found Vitality360 and was so grateful to see that there were specialist clinicians who are experienced working with post viral fatigue clients. Whilst we don’t know that much about COVID-19, we do know about fatigue conditions that have been triggered by other coronaviruses.  

“Just talking to someone who understood what I was experiencing and had detailed advice to offer was a huge relief after weeks of feeling as though I was facing this alone.”

Working with my Vitality360 clinician to refine and improve my approach, I am now on my fifth week of my own programme. I am walking for 22 minutes each day, have a programme of daily stretches and have increased my standing tolerance. My clinician encouraged me to look at all my activities and ensure I was following a plan that was sustainable. I am now working for 45 minutes three times a day and continuing to meditate regularly. I’m back living at home and engaging, gently, with daily life. There’s a long way to go but I now feel there’s a path back to my usual daily activities.

The major health crisis - of post COVID-19 recovery

I feel frustrated that I have had to do all this work myself. We are in the midst of a major health crisis. Hundreds of thousands have been infected with this disease in the UK and initial studies appear to show about 10% of those infected go on to suffer from long term symptoms. This is a huge public health issue. I feel angry that primary healthcare support hasn’t been galvanised into action to think of ways to treat the long-term fatigue effects of this virus. The often-repeated advice from GPs – to continue to rest and slowly recover – is not sufficient. The impact of bed rest on a body is profound. Extending best rest after the initial acute phase of the virus will decondition the body further, with enormous impacts on recovery time, muscle deconditioning and mental health. 

As my programme has started to show benefits, friends have been in touch with me with stories of their acquaintances’ post-COVID-19 fatigue issues. Many are still in bed every day and have seen no improvement over 14-plus weeks, leaving them feeling utterly hopeless. Hearing about my improvement, I’ve been asked to share the programme I am following. Advice is not getting where it is needed, and people are suffering at home as a result.

I am still unwell, and my recovery will take many weeks. But when I look back to where I was four weeks ago, I have made huge gains. To hear of people still lying in bed every day, week after week, getting no specialist advice, is upsetting.

Graded exercise was and still is an important component of my rehabilitation programme – it may not be right for everyone – but we must start taking a proactive approach to treating post-COVID fatigue as an urgent matter of public health.

The consequences of this long disease for sufferers is profound.