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.
My condition was a bit up and down, and I continued working for a while before my body gave up completely and I was bedridden. There was not a moment’s grace except when I managed to sleep a bit. I felt unwell all the time, totally exhausted. It was hard to breathe. Often I could only walk a few metres because of lactic acid and weakness in my legs, and I was rarely out of the house.
It felt like I had a temperature, my eyesight was blurred, I couldn’t stand any sound, my joints and muscles ached, I had heart palpitations and major sleep problems. I had extreme brain fog and when I felt particularly ill, I couldn’t even speak. It felt like my brain was full of cotton wool. My body kept vibrating – it never relaxed, was never at peace. The symptoms varied from week to week, sometimes from day to day.
Conclusion: No residual working capacity
For a few periods during these years I felt a bit better. Not really well, but the improvement gave me hope that recovery was round the corner. But every time I felt a little better, I then got worse again. That was probably the worst of it all, to have that wonderful whiff of energy – and then have it vanish. Nearly three years ago I felt a great improvement for the first time, and I thought that now I will soon be well! I nagged NAV to give me a work assessment and was full of optimism when I arrived on the first day to have my work ability tested out. But I couldn’t handle anything at all, whether it was a physical task or something which only required concentration. I collapsed like a wet rag after ten or fifteen minutes! Rather than being declared fit for work, I was declared 100 per cent unable to work. No residual working capacity.
The fear came sneaking that perhaps I would never recover
Instead of feeling better than I had for years, I now felt worse than ever. It felt like my life was over. On advice from my doctor and the ME association, I applied for disability aids. They gave me a shower stool, a work stool for the kitchen and a wheelchair. I was also given noise-reducing earplugs because I couldn’t take much sound. I thought I had to do what I could to avoid further deterioration. The fear came sneaking that perhaps I would never recover, never enjoy going for walks, being social and doing things with my friends and family. And not least – work! I felt so exhausted and paralysed that I didn’t even have the energy to cry. I tried to keep my spirits up, but thought to myself that I did not want to live my life like this. Another forty years of ME? No, thank you!
Advised against LP
The ME association advised against Lightning Process (LP) courses, and I believed they knew what they were talking about. I was also part of a couple of ME groups on Facebook and was influenced by their negative focus on LP. They claimed that if you had ME, you would definitely feel worse after exerting yourself on an LP course. If you did get better, you had never suffered from “genuine” ME, but were burnt out, had a mental disorder or some other type of exhaustion that wasn’t ME. I, however, had the real ME, according to the stringent Canadian Consensus Criteria (!), so I kept well away from LP. I didn’t consider it an option at all.
They claimed that if you had ME, you would definitely feel worse after exerting yourself on an LP course
Then one day I read about Recovery Norway. It annoyed me, but also made me a little curious. I looked up the page on Facebook and read some stories about people who had recovered from ME. They had written down their own stories. I believed them – how could I not? Surely no one lies about having been that ill, and then lies about becoming well again?! I don’t have that little trust in people. I read the book “Wake me when it’s over” and realised that the author had been just as ill as I was! AND she had recovered.
It is a process you have to learn, and you need to work on it every day, even after the course, in order to succeed
Having spoken to the LP-practitioner by phone, my partner and I decided that we wanted to take the chance and test this out. We had nothing to lose, we felt. Last November we attended a Lightning Process course. I learnt about the connection between the brain and the body; that one can “train” the brain to alter sickness patterns that have got stuck; that one can get out of ME! I know this is hard to understand – I found it hard, too. It is a process you have to learn, and you need to work on it every day, even after the course, in order to succeed. I did. It wasn’t easy, but I had made up my mind to do anything to succeed. It is awfully demanding when you are seriously ill, but it is well worth the effort!
I thought: if others can recover from ME, I will jolly well do so, too! And I did. Now I am totally well! I do everything I want to do, and I have even started working out. It feels so fantastic that it is difficult to describe in words. Earlier I felt that my life was over, but now my life is there to do what I like with! At the age of 43 I am going back to school this autumn, and I am SO looking forward to it. It is never too late:)
It is a pity that I lost seven years of my life, but now I just want to be happy that I have recovered. I will enjoy every second that is ahead! It is marvellous to feel well, and I am not worried about falling ill again.
I am so grateful that Recovery Norway exists, and grateful to the people who took the time to share their stories. It is largely because of them that I dared to try Lightning Process and finally recovered my health. I am now sharing my story, hoping I can help someone else allow themselves to try LP. What if you have a chance of getting well, but don’t make use of it?
This story was first published on Recovery Norway’s Facebook page in 2018.