Long Covid is mentally and physically very painful. It kicks back very hard if you misjudge it

Sarah Hawksworth, 46, from Kent, UK

caught Covid in early April whilst isolating in a lockdown bubble with my husband and teenage daughter. We are both key workers and own our own professional practice. We set up our staff to work from home and cracked on with it. Masks were only muted as a possibility at that time and I found myself waiting for a prescription in a pharmacy near my office alongside a very young and scared shop worker who was trying to write off the cough and fever as a new hayfever symptom.

The Covid descent was swift and dramatic and over the next few weeks I was blue-lighted into A&E several times due to breathing and heart complications. It was very early days of lockdown and the tiredness and dogged determination from the staff and wide eyed fear from patients within the red zone was palpable. Here were dedicated medical professionals who were used to knowing how to treat every ailment presented to them and who were now flying blind, with insufficient PPE and zero tests available, even for themselves. I could not wait to get out of their way and return home to recover. 

Covid was bedded in and rampaging in battle with my immune system with my body simply the passive bystander, getting caught in the crossfire. For me it all simply continued on for weeks and weeks, peaking as a stable of symptoms with a hefty side order of pain every five to seven days

Sometimes it was focussed around my heart and lungs, sometimes my gut, or it featured my kidneys or head or swelled up glands that closed my throat, preventing me from being able to breathe lying down. The fatigue was and is unlike anything I have ever experienced, and has become a grim momento of those early months that still dictates my days. That and the ever present tachycardia, which I have eventually seen a Cardiologist for and am awaiting results of tests. 

My Covid morphed into Long Covid without any apparent bump in recovery.  It wasn’t called Long Covid back then, it was just a puzzle for doctors and paramedics who were told to expect two weeks and then back to full health. The worst and most tired told me it was caused by ‘stress’. I politely told one A&E doctor to look again, to try harder. He hung his head and I felt bad for telling him off like some nagging aunty. He looked again and found significantly degraded kidney function. He couldn’t account for the rib and chest pain or odd oxygen readings.

The stable of symptoms cycling round my body now, at 6 months, do not hit as hard but they are still able to knock me back into bed for a few days. Back then, for the first four months, I was having an excellent day if I was able to sit up for more than one hour in total. My body was ravaged and pain free days were few and treasured.

Mentally, I realised that I had form in dealing with this kind of thing. I have spent the last four years recovering useful sight in one eye after a failed operation nearly wrote it off. After many procedures which entailed physically rebuilding the eye from the inside out, there was no guarantee or comparative cases that indicated that my eyesight would recover nearly as well as it eventually did. The advantage of this experience was that I – with the unquavering support of my family -  became used to living with the great uncertainty of a relatively unchartered medical condition.  So when Long Covid came along, I had already developed the mental tools from years of fighting for sight that helped me to deal with this new life challenge. Being a typical type A type professional working Mum, I needed these tools. I am not naturally good at accepting the shit that just is.

Additionally, I learnt through the eyeball experience to trust in the body’s innate ability to heal and not be phased when trusted medical experts say ‘I don’t know’ when asked about the prognosis. 

This was to serve me well when I reached out to doctors, trying to understand what was ongoing on behind my ongoing debilitating symptoms. There is no established medical roadmap for recovery for Long Covid yet and doctors cannot act off licence, they cannot simply have a try and prescribe you something to see if it helps without risking being struck off. It is important that we find our own way until they do, and to be frank, we are not used to having to do this. 

One of the most illuminating conversations I had was with a Hospital Doctor who had been working with long covid patients around three months in. He explained that in the West it’s reasonably expected by patients to recover within weeks from flu type virus’ whereas in the East, where SARS and other new virus’ had been experienced over recent years it is more accepted that it will take six months plus for a full recovery from something new, as our bodies learn to deal with it for the first time.

In other words, do not compare yourself to your fitness and ability pre Covid for the near future. My previous lung capacity from being a keen swimmer was not likely to return any time soon. Learn patience in recovery.

I found this honesty comforting. It removed the urgency of recovery from my intention and helped me to better accept my abilities and physical restrictions, to learn to work within them on a day by day basis and not expect progress to be linear or fast

For me, it continues to be a very shallow gradient of recovery. My husband, family and good friends point out my wins, however small, and remind me where I have come from when I cannot see progress. This is monumentally important.

Living with Long Covid over months and months is a process of letting go. I eventually realised that to move forward is about allowing all the balls I used to juggle with to simply drop to the floor. Having not yet recovered to anything approximating my previous strength, I am still staring at them long and hard before deciding which ones I will pick up again. 

Long covid is mentally and physically very painful. It flattens you if you do not respect it. Pacing and rest are key and finding the base line of your physical ability every day is tricky at first and hard to accept. But learning to do so is crucial: Long Covid kicks back very hard if you misjudge it. 

It is important to move past the devastation to your life and the physical pain and incapacity and do what you can to remain mentally focussed on how you are now, day by day. Celebrate every win, however small. I believe that it is possible to pull out of the tendrils of what amounts to the worst medical hangover ever, but that it takes mental strength and this takes daily practice. The most important lesson I have learnt is to be kind to yourself. Oh and rest! Rest like your life depends on it. 

It’s important to remember to scream from time to time – in your head or at the sky – because no matter what mental tools we may have at our disposal this whole thing is not okay. With close support and the wider online support community of Long Covid sufferers (or Long Haulers, as we initially called ourselves) we will help each other climb up the ladder of recovery by sharing and listening to each others experiences

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