As shared in episode #109 of the Long Covid Podcast
Hear the episode in full HERE (transcript also available)
What follows is Julie's story, written by herself, and posted gratefully with permission on the podcast website recovery blog
Written August 2023.
We’ve all heard the stories of gaslighting and being told long covid is ‘all in the head’. Well, turns out that it is! But not in the way that phrase implies. All pain and symptoms, and pretty much everything we feel physically, is created in the brain. This is of course our unconscious brain (which accounts for 95% of what our brain does). So we have absolutely no awareness of these processes going on. Using a broken ankle bone as an example: The brain detects there is a problem in the bone, and in response it sends signals to the nerves around the broken bone to produce pain symptoms (e.g. via tension, heat or other mechanisms). We feel the pain in the ankle and as result we avoid putting weight on it, and it is allowed to heal. As the bone heals, the brain detects that there is less damage and gradually sends less and less of these ‘pain instruction’ signals. This is all normal and healthy and is our brain just doing it’s job. This process is how all pain and symptoms in the body are created. So in a way, long covid really is ‘all in our head’ just like any other illness is! After all, it is what is in our head (the brain) that controls everything we do and feel physically.
This understanding is how I fully recovered from Long Covid.
I tested positive for Covid in July 2022. Within a few weeks it was clear that I was not recovering normally; I had recovered from the acute illness, but kept developing other symptoms after that. By mid-August I was completely bedbound, could barely crawl to the bathroom, and this remained the case for months. I was breathless at slightest exertion, got very lightheaded just standing up, heart rate shot up when sitting or standing and with slightest exertion, could barely focus on anything or understand what was being said to me or happening around me, tingly hands and toes, feeling like something crawling inside all the time, insomnia (didn’t sleep a wink for weeks then barely an hour a night after that), whoosh feeling in head, felt heavy like was underwater, ears popping, pounding heartbeat I could feel even at rest, hot sweats and couldn’t regulate temperature, hurt to swallow, very reactive to lots of food and had to follow strict low-histamine diet, couldn’t cope with noise or visual stimulation (couldn’t read, watch TV, listen to music), blocked sinuses, fluey feeling constantly, panic attacks, just felt very ill in a way that’s difficult to describe. I had extreme fatigue at the beginning (could barely lift my arm it felt so heavy and like being dragged through concrete) but that didn’t persist.
I was diagnosed with dysautonomia including borderline POTS, disordered breathing, and had a venous blood oxygen count of just above 30, less than half the value it should be. My pulse oxygen went down to low 80’s on sitting up, into 70’s (occasionally was in the 60’s which was terrifying) just getting to the bathroom. One doctor suspected microclots but couldn’t find enough evidence to provide treatment for this; X-rays, CT scans and VQA scans all came up clear. My GP on the other hand told me it was ‘just anxiety’ and I needed to get active again (which we all know makes us worse, especially at the early stages and if not done in the right way).
I spent all my time either trying to rest and not worry, or when cognitively able enough, searching the scientific literature and wider internet for answers and treatment options. In parallel I was obsessively tracking my heart rate and body stress/HRV stats alongside symptoms.
About three months in, I joined a yoga for Long Covid recovery programme; it offered breathing exercises and meditation, and yoga at a level suitable for those who are very ill. After a few weeks of this my symptoms very slowly started to ease but I was still very ill, and could barely get out of bed.
I noticed fairly early on that, in Facebook pages relating to Long Covid there seemed to be a sub-set of Long Covid peers who were recovering really well using what I’ll call a mind-body approach. However, at first I completely dismissed these, thinking they weren’t relevant to me. I had a fundamental misunderstanding of what these people were trying to say; I thought that their posts were all saying, in different ways, that the illness was not physically real. I knew that my symptoms were real and had objective evidence of this from my doctor and smartwatch stats.
After a while though I started to notice that there were more and more of these stories appearing and my attention started to be drawn in. I started researching various programmes that were mentioned in these posts, such as the Lightning Process, Gupta programme, Fern programme, that all have a common theme of changing the way our brain is perceiving signals and creating symptoms. The premise is that our brain doesn’t realise that the dangerous virus has now gone. As a result, it is completely over-reacting to everything and directing our bodies to produce physical symptoms that are no longer needed or useful. And sometimes, to further compound this, the pain and symptoms themselves can be interpreted by the brain as danger, compounding the situation and causing it to further over-react. Crucially though, there are things we can do to disrupt this cycle and change the pattern.
A real breakthrough in my understanding was when I listened to the audiobook of The Way Out by Alan Gordon (which focuses on chronic pain, but I simply replaced the word ‘pain’ with ‘symptoms’ while listening). Once I understood all this, I fully committed to using a mind-body approach to convince my brain that I was in fact no longer in danger, and that it is safe for it to allow me to recover and heal. It’s important to say here that this was probably the most difficult thing I have ever done in my life. I used an app called Curable which is designed for chronic pain (and has Alan Gordon as one of it’s scientific advisors). One of the testimonials on Curable is a lady who used it to recover from ME after being very ill for around 14 years, and this further convinced me that this approach would work. I was supported along the journey by a fabulous charity here in Scotland called the Thistle Foundation, who provided some 1-1 coaching which really complemented all the work I was doing through the Curable app. Alongside continuing with daily yoga, meditation and breathwork to create a calmer system that would be easier to work with, I threw myself into the Curable app spending hours each day working through it and repeating the exercises.
After a few months or so of persistent daily application of all of this to myself, I was at a point where my only persistent remaining symptoms were anxiety and tinnitus. Although I was of course unfit (cognitively and physically), I was able to build up in a sensible way without making myself ill. I kept up yoga, meditation and breathwork, and continued to use the resources around anxiety from the Curable app. After another few months the anxiety was minimal and I was reasonably fit, back at work full-time, and doing whatever I wanted; walking up hills, long rides with my horse, socialising, etc.
There are so many other resources out there that can help understand, and apply, this kind of approach and I think recovery stories (like this one!) are a great place to start. Part of this whole approach is focussing on health rather than illness, even though at first that is really difficult as there is very little that you can do to focus on, and for me anyway there were very few moments where I felt anything other than horrendous. But I grasped onto any small moment of feeling OK and any tiny thing that I could do, and focussed on those while doing all of the stuff I’ve described above. Below are some of the resources that I found invaluable.
I now am fully recovered, and feel better than I have done in years, thanks to all that have gone before me and shown me the way.
https://mylongcovidjourney.wordpress.com/
https://www.youtube.com/playlist?list=PL9zfBmoyUda_Ui5voRFdAKaZeXyVjDycm
https://www.recoverynorway.org/
https://www.audible.co.uk/pd/The-Way-Out-Audiobook/B09KYBHNSD?&source_code=PS1PP30DTRIAL4530419230036&gclid=CjwKCAjw6eWnBhAKEiwADpnw9otIov-VsRJZhiNWh9FsS48gBWdzDTbJIyjXnaYXUbtenlAK8foEIRoCXYMQAvD_BwE&gclsrc=aw.ds
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