Writing my first ever blog with a tinge of discomfiture. I’ve been told for years that having a blog is good for getting traffic to websites but this never felt enough of a compelling argument to spur me on and attempt it in the past. I am finally endeavouring to overcome my self consciousness, that nagging voice that says “what have you got to say and who’s going to be interested” Given all the horrors in the world right now, the appalling atrocities being committed, environmental collapse, fear of AI taking over…. I could go on (and on).. The presumption of someone wittering on, navel gazing (there’s that voice again) about her recovery from an illness that some people deny is even real and very few understand, including most of the medical establishment… For heaven’s sake, it’s not cancer is it? But what long covid and other related illnesses are, is life debilitating and even life destroying. For me and for a great many, our lives stopped entirely and reduced down to simply lying in bed, mostly in silence.
So why write it now? I think it’s the compulsion of someone who has recovered having a deep urge to share with those still in the depths of it. When I was ill and eventually found stories of people who had made full recoveries, the sense of optimism and hope I got was stupendous.
I probably need to rewind a bit and give a little background.
Before getting ill I was what I suppose you could describe as an energetic person, I was hugely active and my days were full to the brim and kind of relentless. They began with an early sea swim then a long dog walk, I worked long hours in my studio and had created and managed a large vegetable garden, I also did a lot of environmental activism. I pushed myself beyond my capacity as a matter of course, daily. In my life I had always had mysterious illnesses that doctors could find no diagnosis for, extreme fatigue, body aches, nausea, upset stomach, which would floor me for a few days then I’d be well again, only for the illness to return a month or so later. I now understand this is a very common pattern for people who get LC or ME.
I got flu in December of 2022, I’d spent a sleepless night up a poplar tree that a group of us were occupying to save it from being cut down unnecessarily (we did save it, which is a wonderful thing I’m very proud to have been a part of), the next day I had to go and sign in at a police station in London for a misdemeanour I and others had committed against the oil industry. We were unexpectedly put in cells for hours that they kept deliberately cold and when they eventually let us out very late at night, I knew I was coming down with something. I had flu over Christmas and then just didn’t really get well.. post viral fatigue. But in February there was an action to shut down an airport solely used by private jets. It was on Valentine’s Day and I made 2 huge heart costumes which myself and a friend wore as we blocked the entrance standing on a boat. (This sort of thing was commonplace for me 🤪🤓) I wasn’t well but was needed for the action and I simply couldn’t say no and put myself and my health first. Coincidentally (or not) my partner in crime was/is an ME sufferer of over 25 years. Later that week on another protest I shared my sandwich with someone who had covid (she was unaware) and that was that. I’d had covid before and this time was perhaps worse but not terrible, like a bad flu. And then I just didn’t get well, days turned into weeks, turned into months which obviously eventually turned into years. I started writing a journal and simply couldn’t believe I was writing the dates as the time simultaneously dragged and flew - flew in the sense that time was inexorably slipping through my fingers like running water, it blew my mind that I just wasn’t getting better.
There is so much to say about the illness and the recovery and I’m hoping to share that in manageable bites in subsequent blogs.
There is a part of me that feels something of a fraud, I was ill for 2 1/2 years, feel like I was properly well after 3. That is objectively both a long time and a smidgen compared to the length of time many have lived and continue to live with chronic illnesses of this kind. So in writing my experience and insights I do very much hope not to be insensitive, and cause offence to those still in the trenches. I am an expert only in my own journey and my own recovery. I hope that by sharing these I may offer some optimism and some signposts to the things that helped and the things that absolutely didn’t.
Last part of this post (which is already longer than I’d anticipated) is the first signpost that really was the beginning of my journey back to health. A fellow LC sufferer told me about Raelen Agle, an American YouTuber who having recovered from 15 years of ME had started interviewing other people who had also recovered, initially from ME and fibromyalgia and then LC when Covid came along. These stories were incredible for me to watch and listen to. People who had been chronically ill for sometimes years and even decades got well in months and sometimes weeks! Of course those probably were the exception, most recoveries were more long winded and far from linear. But lordy those miraculous recoveries… they had me hooked. I watched obsessively, some stories resonating more than others. Common threads of life experiences and personalities gave lots of aha moments.
I’ll leave it there for now.. but wanted to share this.. if you or someone you know suffers from ME, LC or fibromyalgia you/they could do a lot worse than hopping over to YouTube and finding Raelen Agle and her hundreds of videos.