Hi, I am Jennifer and developed longCovid November 2021. I live in the Netherlands. The insights I now use I got thanks to my small group of wonderful fellow sufferers. The five of us are in our own Whatsapp group. Through them I came across the Dutch book 'Je vermoeidheid te lijf' [Fighting your fatigue] by Annemarieke Fleming, the book 'The way out' by Alan Gordon, the podcast 'Tell me about your pain' and the Curable app. The insights are reflected in my story.
My stress response system kicked in when I got sick and didn't turn off again. Your stress response system includes your immune system, your pain system, your emotional system, and your energy system. My brain and body tried to protect me by turning- and keeping the stress response system on. Only it lasted too long. So long that I became more and more tired and created neural pathways that gave a pain reflex and a fatigue reflex. My brain kept giving me signals to slow down. That pain reflex and fatigue reflex kept coming up even though it was no longer necessary.
I unconsciously kept the stress response system 'on' myself, because I was strongly focused on my body, did my best to get better, and feared relapses. As it were, I gave messages to my brain: 'If I do too much, I get such a bad relapse', 'My legs hurt, you see that walking is not good, something is wrong in my muscles', 'I have such a headache, while I hardly did anything and just kept calm, maybe that virus got into my brain', and many more thoughts like this.
How do you turn off the stress response system? At the beginning of June 2022 I started a treatment with a physiotherapist who started treating my lymph nodes. This way all the adrenaline and cortisol that was in my body could be drained. She gave me a lot of confidence to start moving again. "Now that you're with me, you won't relapse," she'd said on my first appointment, and I decided to believe her. And that is how it went. She took fear away from me. She encouraged to do fun things. And she told me not to do things that I dread or find annoying. “Don't cycle fast to get to that appointment in 20 minutes. But feel free to cycle for 20 minutes, that's good for you!”.
Within 3 weeks I was able to do several activities in one day. That's how I got rid of the fatigue reflex. Do move, but also give your body rest to build up an energy buffer again. But at fixed times, not as a 'reward' for the brain when it gives a fatigue signal.
She hesitated on my complaints concerning my 'brain fog', saying some patients recover as soon as their fatigue reflex is gone, for others it takes longer. I remained insecure on that part, and so the brain fog remained...
The next step was in August 2022. One fellow sufferer sent a WhatsApp message with info (article, book titles, podcast and FB message) about the mind-body approach. I first listened to the podcast of Nicole Sachs interviewing Lieke, episode 122. I remember my first reaction was feeling angry: ‘How so do I do this to myself! I haven’t done anything but trying to heal! I don’t feel any fear! This is bullshit…’. It took me four days of being angry before I decided to read more, just short paragraphs because I still got bad headaches from reading.
I than read an article by Howard Schubiner ‘Explaining the Unexplainable: Chronic Fatigue Syndrome’. In this he explains that the fatigue marathon runners experience, known as ‘hitting the wall’ (pain in whole body, all energy gone) is not due to energy depletion, but actually is a warning by the brain just as the light on a car’s gas gauge that lets us know the car will eventually run out of gas. Professional marathon runners know this, keep going, and all pain and lack of energy disappear. This insight gave me the little push to read further. Next was reading ‘The way out’ by Alan Gordon.
And now I understood! With the advice from the book I started developing new neural pathways in my brain. Pathways for an alternative response instead of the headache and woolly feeling when I want to concentrate. By consciously relaxing when I read or watch television, and actively realizing that it is not dangerous and telling my brain that I can handle the stimuli just fine. By gaining successful experiences. By responding with more self-compassion when things still don't work out. And by giving myself time.
The steps are there. Not always as big as I'd like, but I realize I'm breaking habits I had for years. Now, as part of developing the message to my brain that the pain isn't necessary because there's nothing wrong with me, I'm also learning to relax more physically. My body still reacts to mental pressure and physical tension with pain reflexes, but at this point, January 2023, only once a week maybe for no more than a few minutes. Then I attend to it with a Curable exercise and all is well again. I take a 20 minute break every day to lie down (love doing yoga nidra!) and am happy with these new habits, hoping to keep them for years!