It is now 2 years and 2 months since I first started to feel unwell with what turned out to be Covid and then long Covid. Despite many moments over this time when I have contemplated writing about my experience this is the first time I have actually done it. Being honest, writing this has felt uncomfortable for me. I, like many, am really bored of Covid. I had hoped it would just bugger off but it hasn’t.
I had hoped I would recover very quickly and would be immune forever but I didn’t and I am not. Thankfully I am now mostly well and I have realised that my being able to get through this time, and talk about it, may help someone else who is enduring it right now.
I was one of the unlucky ones to get Covid pre-testing, pre-vaccines and before even the term ‘long Covid’ had been coined. In the acute stage I wasn’t ‘mildly ill’, I was really quite unwell for several weeks. There were trips to A&E, moments where I literally believed I wouldn’t wake up the next day and times where I wasn’t even sure I wanted to wake up the next day. It was really tough and tested me both physically and mentally to levels I had never experienced in my life before. At the start nobody knew anything about long Covid, and being very unwell for weeks (then months) with no help, knowledge or understanding was lonely and scary. Now, many more people know about long Covid. It is covered in the media more often and some people are (rightly) concerned about it. And so they should be, as quite frankly it’s fucking hellish.
Many friends have asked me to describe long Covid over this time. It’s really hard to do that but the best analogy I can think of in the early months (lasting about 4 months for me) was like the worst hangover you have ever had, all day, every day on repeat. Normal activity of any sort was impossible at this time, I was basically bed or sofa bound, unable to walk more than about 50 metres at a time. For me this included cardiac issues (myocarditis) and severe fatigue.
After that I moved into a second stage, lasting about 4 months, which was like early pregnancy (for those who know) and mild flu rolled into one. The most intense, unfathomable fatigue you have ever experienced day in, day out. Fatigue is not feeling a bit tired. For me it is extreme tiredness combined with all over body pain, fevers, joint ache and the inability to think, concentrate or at times even speak. At about the 8 month mark I began to see small improvements, I could walk a bit without heart pain, concentrate longer and participate in family life again.
As my recovery continued I moved into the ‘heavily pregnant’ stage as I have termed it. Disclaimer, I am not pregnant! In this third stage I required frequent naps, rests, slow walks, avoidance of any cardio, no alcohol (bummer) and a lot of early nights and lie-ins. If I ‘overdid’ it in any way the crippling fatigue symptoms would return with a vengeance. This phase also sucked but thankfully not as much as stage one and two.
I like to think I am now in stage four. It’s kind of uncharted territory, but now I am able to work (part time, short days), I can exercise (gently, no proper cardio), I can drive for up to an hour, I can do most things I need to and a lot of things I want to. I cannot walk for longer than about an hour. I cannot drink more than a glass of wine, I cannot socialise for ‘too long’. It’s kind of OK, I am used to it by now and able to live my life - but not in the way I once knew it. My tolerance level is much higher for 'activity' and I am aware of what tips my body too far and what activities still run the risk of causing an ‘energy crash’.
Those who know me personally will know that before Covid I was working 4 days a week and doing a Master’s degree on the side. At the weekend I would regularly run 10k on the hills. At home I have two young children and we’d just finished quite a stressful house extension. Before Covid I loved my life, I was happy, I was fit and I thought I was healthy. The good news is, I still love my life but I'd be lying if I said that I didn’t miss the capabilities of ‘old me’. For now she is on a sabbatical and I am at peace with that.
So how have I recovered? People in the throws of long Covid ask me this. I started a second Instagram account because I didn’t want all my ‘real life’ friends to be bored senseless by my Covid journey and ridiculous ‘achievements’ like being able to walk 1km again or cook a meal. Yes really, I couldn’t cook for about 6 months.
In essence I have given (and am still giving) myself time to heal. I knew pretty early this thing wasn’t linear like every other illness I had experienced before. I kept putting time limits on myself. By May I will be back running, by August I will be back at work full time, by Christmas I will be driving. And then one day I stopped with those timescales because I realised they were actually making me feel worse, when I failed to meet them again and again. In fact at that point I stopped doing everything I could stop. I am incredibly lucky to have a caring, supportive partner and family who have helped me in every way possible (and did all the hoovering) and allowed me this time ‘off’ from my old life. I was self-employed when I got ill so I chose to stop working completely for a long time. Not a decision I ever wanted to make and one that now seems unfortunate as I have realised twelve months of sick pay would have been rather helpful!
So, it’s been hard. But now I want to talk about the positives in this story. Before getting ill I was studying for a Master’s in Coaching & Mentoring. I loved it but sadly had to cease all one-to-one work and team work for a long while as well as my studies. Thankfully I had already qualified and I am back practising again (but not yet studying as well) and this brush with long term, chronic illness has given me a new outlook and focus on my life and career. I’ve met hundreds of men and women, just like me, suffering from long Covid and have reconnected with old colleagues and friends who are also enduring it. I have learnt more about myself and my capacity for remaining positive against setback after setback. I have developed empathy for others at deeper levels than I thought I was capable of. I have felt truly thankful to those who have both helped me and empathised (family, professionals and friends). I have also lost touch with some old friends and colleagues who don’t really understand what has happened to me and whom I could no longer meet the expectations of when I needed to cancel arrangements, phone calls and meetings because I was just too unwell to make them.
I had Covid again in April this year, thankfully a relatively short set back and I am back on track. As I write this I am at about 80-85% ‘recovered’ from long Covid. There is still a way to go but I am confident I will get there. I have received no treatment on the NHS and have healed myself through a range of self-funded therapies, courses and that old classic - time. You can read more about that on my instagram if it’s of interest. Mentally I am strong, physically I am not so strong but I am mending and very slowly improving. I am not convinced I will ever return to the fast lane of life I once frequented and I am not sure I want to. I am back working as a consultant on Marketing projects and with Coaching clients on a one to one basis. I’m training in various new therapeutic areas of interest including Neurolistic Programming, PTSD, Anxiety management and Mindset Coaching. I would never have found these new avenues had it not been for long Covid. I am not a fatalist but I am an opportunist. My Coaching supervisor called this stage my ‘re-emergence’ last week and I really liked that. My desire to make the most of my life and the ability I still have has never been greater.
So that’s what I am going to name stage five - my re-emergence!
If you want to learn more about my recovery follow me on Instagram @mycorona21
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