Julie's story of recovery from long covid

Our guest blogger this month is Julie Black, who writes about her recovery from long covid using a neuroplastic (or ‘mind-body’) approach. Please be aware that this blog refers to suicidal ideation in response to chronic symptoms. 

Introduction

We’ve all heard the stories of gaslighting and being told long covid is ‘all in the head’. Well, of course that’s not true and our symptoms are very very real. But that doesn’t mean that our brain doesn’t have a role to play in creating them. 

All pain and symptoms, and pretty much everything we feel physically, are created in the brain. I am referring here, of course, to our unconscious brain (which accounts for ninety-five percent of what our brain does), therefore we have absolutely no awareness of these processes. 

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 a 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 fewer and fewer of these ‘pain instruction’ signals. This is all normal and healthy and is our brain just doing its job: protecting us from danger.

The above process is how all pain and symptoms in the body are created. But sometimes, the signalling gets stuck in a loop of symptom/danger/symptom and the brain just hasn’t caught on that the danger has passed. 

This understanding of the role of the brain in generating symptoms is how I fully recovered from long covid. 

How my long covid journey began 

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. 

I had extreme fatigue at the beginning (could barely lift my arm it felt so heavy and like being dragged through concrete). By mid-August I was completely bedbound, could barely crawl to the bathroom, and this remained the case for months. 

My long covid symptoms

I was breathless at the slightest exertion; got very lightheaded just standing up and my heart rate shot up when sitting or standing and with very little activity. I experienced chest pains that felt like a heart attack and could barely focus on anything or understand what was being said to me or happening around me. I had tingly hands and toes, a feeling like something crawling inside all the time, insomnia (I didn’t sleep a wink for weeks then barely an hour a night after that) and a whooshing feeling in my head. I felt heavy like I was underwater, my ears popping, heart pounding. Even when resting, I experienced hot sweats and couldn’t regulate my temperature. It hurt to swallow and I was very reactive to lots of food. I had to follow a strict low-histamine diet. I couldn’t cope with noise or visual stimulation (couldn’t read, watch TV, listen to music), had blocked sinuses, a ‘flu-like’ feeling constantly and panic attacks. I just felt very ill in a way that’s difficult to describe. 

The diagnoses I received 

I was diagnosed with dysautonomia including POTS (Postural Orthostatic Tachycardia Syndrome) and disordered breathing. I had a venous blood oxygen count of just above thirty, less than half the value it should be. My pulse oxygen went down to low eighties  on sitting up, and into the seventies (occasionally the sixties, which was terrifying) just getting to the bathroom. One doctor suspected micro bloodclots but couldn’t find enough evidence to provide treatment for this; my x-rays, CT scans and VQA (lung) 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 can worsen the situation if not done in the right [safety-minded] way, especially at the early stages). 

My early efforts to recover

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/heart-rate-variability stats alongside symptoms. 

From the beginning, I’d started some simple meditation courses on the Headspace app, as a way to cope with what was happening to me. I still felt super worried and at one point, very suicidal, so it’s difficult to know how helpful this was. About three months in, I joined a ‘yoga for long covid’ recovery programme; it offered breathing exercises, meditation and yoga at a level suitable for those who are very ill (done in bed, barely moving). After a few weeks of this, my symptoms very slowly started to ease slightly but I was still very ill, and could barely get out of bed although I am confident these practices alone would have led to further improvements over time. 

My earliest introduction to mind-body healing 

I noticed fairly early on that, on Facebook pages relating to long covid there seemed to be a sub-set of my peers who were recovering very well using what I’ll call a mind-body approach. However, at first, I completely dismissed these cases, 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 wonder if there was more to the mind-body approach and to think about why these people were recovering so well, and what could I learn from them. I started researching various brain retraining programmes that were mentioned in these posts, and found that they all had a common theme of changing the way the brain was perceiving signals from the body and creating symptoms. ​​

A new way of viewing my symptoms 

The premise of brain retraining 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 (of symptoms-fear-symptoms) and change the pattern. Reaching out to some of the people who had recovered using a mind-body approach gradually helped me understand how both of the following statements can be true at the same time: ‘the brain creates your symptoms’ and ‘the symptoms are physically very real’. 

A further breakthrough

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 mentally replaced the word ‘pain’ with ‘symptoms’ while listening). Once I understood the science described in this book, 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 was 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. However, because I was so very ill, I felt I had nothing to lose and so was able to throw myself into it 100% and fully commit. 

How I implemented the mind-body approach

I used an app called Curable, which is designed for treating chronic pain (Alan Gordon, author of The Way Out, is one of the scientific advisors at Curable Health). One of the testimonials for Curable was from a lady who used the app to recover from ME after being very ill for around fourteen 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 one-to-one coaching (on mindset, working towards goals and nervous-system functioning) which 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, including journalling, brain re-training, mindfulness practices and neuroscience lessons. 

After a few months or so of persistent daily application of the mind-body approach, and with some help from my Thistle Foundation coach to maintain a helpful mindset for recovery, I was at a point where my only persistent remaining symptoms were anxiety and tinnitus. 

Although I was, of course, unfit (cognitively and physically) at this stage, I was able to build up my activities 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. 

Julie getting back to life and loved activities as she recovered

activities as she recovered

Achieving recovery

By August 2023, I was fully recovered, and felt better than I had in years, thanks to all the recoverees that had gone before me and shown me the way. 

As of today, I remain fully recovered and living an active life. I have been back at work since March 2023 (phased return) and have recently started a new job with lots of responsibility. I had covid again at least once and whilst I was very ill for a few days, I recovered normally. 

I continue to experience moments of anxiety but these are just part of life. The only difference now is that I am more aware of what is going on in my body, mind and emotions, and how they are connected. When anxiety arises, I remind myself of everything I have learned and am able to let the feelings pass and get on with my life. For the most part, I continue to feel better than I ever have and live the life I want to at work and home, including being very active with my horses. ​

My recommendations for anyone embarking on a mind-body healing journey  

There are so many other resources out there that can help you understand and apply the mind-body approach and I think recovery stories (like this one!) are a great place to start. 

Part of this whole approach is focusing on health rather than illness, even though at first this can be very difficult as there might be very little ‘health’ to focus on. Initially, there were very few moments when I felt anything other than horrendous; but I grasped onto any small moment of feeling OK and any tiny activity that I could do, and focused on those while continuing the mind-body work described above. ​ 

For me, the crucial piece was understanding how the brain is involved in symptoms. Once I had this understanding, I was able to fully believe that none of my symptoms meant I was ‘broken’ in any fundamental way, and I could just let them pass without attaching any meaning to them. The goal in the moment is not actually to make the symptoms stop, but rather to understand that they don’t mean anything, and are just ‘there’, and to not respond by sending signals of danger back to your brain. By being consistent about this, it’s possible to start expanding activity without making symptoms worse, and over time symptoms reduce and eventually disappear (some more quickly than others!). 

Below are some of the resources that I found invaluable. 

• Recovery stories as found on Rachel Whitfield's  blog, on Suzy Bolt's youtube channel and on the 'Recovery Norge' website

• Alan Gordon’s book, The Way Out, which is based on Pain Reprocessing Therapy (an evidence-based treatment approach for training the brain away from chronic symptoms) 

• The Thistle Foundation which supports people in Scotland with long-term health conditions and disabilities to live a rewarding life

Julie enjoying an active life today with her beloved horses