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In this post Rachel Whitfield shares her inspiring long COVID recovery story, originally published on her own blog in November 2022.
In October 2022 I achieved something that a year before, I thought was impossible. I ran the London Marathon. (well, I ran half of it, limped a quarter of it and jogged the rest). After 26.2 miles I crossed the finish line and got my medal.
I did it to raise money for charity, I did it because it had been a dream for a long time and I did it to prove to myself that I could after believing that Covid had caused me to be exercise intolerant.
More importantly, I did it to publicly prove to others that it's totally possible to really recover from Long Covid and to go on and lead a full normal healthy life. Not one of remission or careful pacing but a full and healthy life complete with exercise again.
In order to do this, I had to cut through some serious bullshit advice that's out there and really examine my beliefs about the illness and what causes it.
As I crossed the line, I shed some tears. I shed tears for what could have been if I hadn't have worked out the truth. I shed tears for what should be for many if they could only find a way to get the right help and advice and not buy into the popular narrative of spoons and PEM and hypervigilant pacing and permanence. If they could only listen to those who had recovered rather than those who are still sick. If they would just get out of the "bad neighbourhoods'' as Dan Buglio calls them and they could only take the fear out of long covid and see it for what it is, rather than looking for a pill or some other medical intervention many others would find full recovery too.
I shed tears of anger and frustration for the truly dreadful advice out there. Well meaningful advice by the ME society, journalists, other patients, advocates of patients, researches and doctors.
In the end, recovery boils down to what you believe.
If you believe that you will recover, if you believe you have an influence, if you believe it's the nervous system and you just have to get out of permanent fight or flight then you will recover. If you believe it's biomedical the outcome is less hopeful.
In May 2021, I had the belief that I was exercise intolerant and that I had PEM (post exertional Malaise) I now know this simply wasn't true and I ponder how these beliefs came about as it seems crazy now.
Yes I triggered my nervous system post Covid by overloading it when it was still trying to fight the virus and a few weeks of rest would have been a great idea to allow myself to recover but how I got from this to the belief that months later I couldn't raise my HR above 100 or that I would crash if I cycled or ran or that I would never recover is beyond me.
I now realise that I believed all this because I read about ME/CFS, I read all the newspaper reports about Covid horror stories and I spoke to other sick people who were saying the same and fear then took over.
Once I got out of fear, I started to recover. I discovered the answers were already out there in the articles, books, podcasts and videos of Nicole Sachs, Dan Buglio, Jan Rothney, Paul Garner, Alan Gordon to name a few but it was only when I did the Lightning process that I truly understood the effect of these beliefs and how I was keeping myself stuck through hypervigilant pacing and the PEM narrative.
I thank my lucky stars everyday that I made that phone call and created a new set of beliefs which meant that I was able to fully recover.
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