Recovery Norway does not make any claims about how many can get well from strategies like the ones our members have used, although we do think they are evidence that it is possible. We do acknowledge stories of people who have experienced worsening symptoms after such strategies too, and we think this is one reason for doing more research.
I was diagnosed with M.E, which was terrifying, but I knew my body had had enough. It had been overreacting to chemicals, food and viruses for a very long time, living in high arousal and dealing with a long term difficult situation.
An ancient survival system
Having lectured in Health and Social Care, and been trained in behaviour therapy, counselling skills and stress management, I knew that my body had been thrown out of kilter, not just by the viruses but by living in challenging conditions, and my ancient survival system had shut me down for my own protection.
My ancient survival system had shut me down for my own protection
I realised I had to stay calm and train this ancient system that it wasn’t needed after I had time to convalesce. I knew how the immune system, gut and autonomic system are so interlinked, one affecting the other. My gut and immune system were over-reacting, and the autonomic system had been thrown out of balance, causing a malfunction whereby this ancient survival system had taken over, dominating control of all the automatic responses in my body; the heart rate, breaking, thyroid, thermostat, energy, sugar levels and metabolic functions were affected and creating symptoms of shut down or overarousal.
Retraining the body
I was caught in an endless sickness loop with the most ancient system, the reptilian system, causing a circuit break, literally shutting me down, and “chimp” system causing awful states of overarousal. (I learnt years later, after a relapse that it is actually recognised as a malfunctioning neurological condition by the NICE guidelines in Britain.) The body would only heal when it got the signals that it is a safe place in which to recover.
I had to let it know that there are no tigers and that I could take charge during recovery
To turn off this malfunctioning system that was “ stuck in the On position”, I had to retrain the body that it is safe to recover, that I didn’t need protecting or to be put into survival mode. I had to let it know that there are no tigers and that I could take charge during recovery.
The opposite of normal
I had to do the complete opposite of being normal. It is normal to be terrified of being immobilised or thrown into such carnal instincts where all the senses and muscles are primed for predators, but I knew it isn’t useful. I had to decide that every movement, no matter how small, was a sign of recovery, a massive success- even if I then crashed. Crawling to the toilet was a eureka moment “ I am out of bed! Yes!!”, even though I then pretty much passed out for days.
Being able to get down stairs for the first time was a massive achievement
Nothing was a threat, I didn’t need to be put into fight and flight or freeze, with all the symptoms of pain, being wired, nauseous, hypersensitive or bedridden as a result. I turned everything on its head so being able to get down stairs for the first time was a massive achievement and being unable to get back was okay; everything was okay. As I slept at the body of the stairs, I rejoiced that I had made it downstairs and then, when I rested, I would try again, one step at a time.
Every day, every moment was a battle of the brains, but over many months, my world gradually became bigger and over time, with lots of crashes in between, I did fully recover.
The book – and a new way of doing life
A relapse years later made me determined to write a book because experts and support groups were then telling me I would never recover and couldn’t access any support until I accepted I had to learn to live with it, be happy with a life having chronic fatigue syndrome and manage my energy.
It was heading for a third relapse in 2008 that made me put my health above all else
Thankfully, as I write in my book, I did recover, with support from private practitioners who reminded me I could. But, I didn’t change anything about my lifestyle or how I did life, and it was heading for a third relapse in 2008 that made me put my health above all else. This is why Part Two of the book is about how we make our conditions more favourable to thrive in and teaches how to build up human survival skills, so that the ancient animal survival modes are never used, unless there actually is a tiger.
Jan Rothney has written the book Breaking Free – A Guide to Recovering from Chronic Fatigue Syndrome and Long Covid Symptoms.