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 lost many things that I hold dear in my life: my job, my education, physical exercise and other day-to-day things. I had home care. At 24 years of age, I was granted full disability benefits, and the starting point of the disease was dated back to 2008 when I was 19 years old. I had a handicap proof in my car, shower stool, concessionary card, transport service card and carer certificate.
I got a lot of help from family and friends to assist me in the simplest of things, like grocery shopping and cooking, they helped me with the housework and gave me a ride when I could not drive a car. My quality of life went down spiral when my health got worse and I got more isolated.
I really thought that those who recovered after the Lightning Process had psychological problems and did not have “real ME”.
I have always been an optimistic person and expected that I would recover, and I was quite active in periods of time – but the ME always came back. I had heard about LP through the The Norwegian ME Association, but they were warning people not to attend the course, and some of the bloggers said it had made them worse. I belived LP to be a course in positive thinking – and I myself and the people around me thought it would not help me – because I generally am a happy person. I really thought that those who recovered after the Lightning Process had psychological problems and did not have “real ME”.
A crucial book recommendation
One day my friend recommended the book “Wake me when it´s over”. First, I was criticizing my friend for even recommending the book and started explaining to her about how “physical ME really is”. I was afraid that my friend would think I was struggling psychologically. After a couple of minutes, I realized that I had never heard from the practitioner herself what LP really was. I was ready to open my mind and read the book. The author apparently had the “real type of ME” as I also did – and she had recovered!
I had already for a couple of years heard theories from my physical therapist that the brain can mix up signals, that there can be problems in the nervous system after having a disease for a long time, and that it is possible to affect the brain by telling yourself that what you are feeling is a “false alarm”. After reading the book I understood that I did not have to fear the symptoms, and I changed my perspective on them – it wasn´t something to get scared of anymore, and they were not signalling that I had to rest. I knew it was an error in the system and false alarms. That made me increase my activity level – and I did not get worse! I got interested in attending an LP course, but decided to first read the book “An introduction to the Lightning Process”. Everything I read was so logical, and I was so ready for finally attending the course!
I was not aware my destructive thought patterns
Everything I learned during the course made sense to me, and I felt comfort knowing I would recover! I had believed this for weeks already, and felt the recovery process starting in my body, but I still wanted to attend to the course to learn how to do it step by step. During the course I discovered things about myself and learned a lot: I had not been aware my destructive thought patterns. I can control my brain, and I can train it to send other types of signals – which make me recover!
The text you’ve read before this point, I wrote three weeks after attending the Lightning Process course in 2015.
These are some of the positive changes I have had after starting the process:
I can stay out late with friends and I can do more than one activity per day. I don’t need to rest. Relaxing a few hours after breakfast is not necessary anymore. I can clean my own kitchen again. My shower stool is out of the apartment, and I don’t have home care anymore, yay! I can do cardio, dancing, bicycling, running and I can get into the shower right away after working out. The day after isn’t always about lying in bed and loneliness but rather working out, happiness and friends. I can use high heels again without being dizzy. I can ride my car everywhere I want! I love getting to know new people again, which was hard when I was sick. I can put up with loud sounds again. I can carry things between the basement and the third floor by myself, and I can help my neighbours carry their stuff. I’m not afraid I may suffer symptoms on my next vacation trip, I am just excited!
One year later
One year after reading the book I continued writing my story:
Today it’s been one year since I read “Wake me when it’s over”. From the second I finished the book I never doubted I’d fully recover.
I can hardly believe that I was so sick just one year ago.
I had home care every week, which is not nice when you are a 20-year-old girl, but I did not have any choice. I was shameful and embarrassed when I went to ask for help to get my basic needs met. When I got the reply from the municipality a month and a half later,they had increased my home care to 10 hours per week!
The first time I cleaned my home again was documented on film by a friend a couple of days later, I felt so lucky!
Luckily, as I had attended the Lightning Process course in the meantime, I didn’t need the home care anymore. The LP course taught me how to train my brain to stop those “wrong signals” and after using the process, working actively with myself, it gave me good results. I called the municipality and said they could put the home care on a hold and that I had gotten better. I wanted to make it on my own. The first time I cleaned my home again was documented on film by a friend a couple of days later, I felt so lucky!
Now, less than a year later, I must admit I have largely forgotten just how sick I really was. The task that used to be too heavy to handle I now do in between university studies, working out and otherwise living a busy life.
How I wish everyone who is sick with ME would recover, and I mean totally recover, not just finding an activity level where they keep their symptoms under control or just wait for them to pass – but a life without symptoms. The Lightning Process didn’t have any negative side effects for me. I hadn’t fully recovered at the end of the three day course, but little by little my symptoms lessened, before they totally disappeared.
I got my life back, and I’m now living a life I love!
In 2018, two years after the course, I am still healthy. The home care has never been in my house again, and I have with great joy cut up my handicap parking certificate, the concessionary card, the transport service card and the carer certificate.
For the last couple of years I have attended university, and I am studying for a bachelor’s degree full time while also being part of the student council. I am working on the side, and I am lifting heavier weights than most of the guys in the gym. In other words: I’m fully recovered and limited only by being a normal human. The things I learned about myself in the Lightning Process course has given me the tools to get completely recovered.
Is it not okay to say that you have recovered?
For a long time, I also was very sceptical about the LP-course, because the Norwegian ME Association warned against it. I am so grateful I heard from former ME patients that had recovered from ME by attending the LP course. Then I also got the courage to try, and I recovered!
A while ago I heard that the Norwegian ME Association were to give a lecture at Østfold University College. It was mainly for nurse students, but others could attend. I decided to go there to hear what they had to say about the chances of recovery from ME, and I was hoping I could tell them about how I recovered with the Lightning Process – and hopefully give some other ME patients a little bit of hope.
When the lecture was finished, and people were free to ask questions, I raised my hand and I said I had suffered from severe ME and been sick for 10 years. When I said I had taken the Lightning Process course and understood my body in another way – which then made me fully recover – I was interrupted by one of the representatives of the ME Association. It seemed like it was not OK to talk about one’s recovery. Another person attending the lecture raised her hand and said she would love to have some more information about this, but they quickly moved on to the next person with a raised hand. I raised my hand again, and I said I didn’t think that the LP is the solution for everyone, but that I wished the ME Association would have an open mind for the possibility of recovering without medicines. Once again, I was interrupted.
When you have ME, the physical symptoms are very real, and that is why it is so painful to hear somebody say it´s something else than a physical disease. The symptoms are completely real!
It is sad to see the ME Association reacting like that, because I really think they want the best for all the ME patients out there. I understand completely why they are sceptical about this course in mental training, as I used to be so myself. When you have ME, the physical symptoms are very real, and that is why it is so painful to hear somebody say it´s something else than a physical disease. The symptoms are completely real!
I had flu like symptoms. I was in bed without energy, my stomach reacted to different kinds of food, my body was aching, the brain fog made it hard to think… all of these symptoms were real, and I didn’t understand how somebody could get better through learning something at a course. Especially some of the rumours, like “think your way to recovery in three days!”, were hard to take seriously. I thought you had to get medication for a physical disease, and that’s why I was critical of everybody who suggested a change in mindset could be a solution.
I thought you had to get medication for a physical disease, and that’s why I was critical of everybody who suggested a change in mindset could be a solution
Luckily, my scepticism was ill-founded. After the course I had a new understanding about the workings of the brain and the central nervous system. I realised that my perception of a situation affects how my brain signals the body. I understood that my fear of PEM and worsening symptoms led my brain to perceive danger, and that again lead the central nervous system to fire up, and the symptoms got worse. The knowledge of how I could affect my bodily reactions were very helpful, and after a couple of weeks of training to change my perspective, I was much better, and I’ve been on an upward spiral since then.
Before I learned what the Lightning Process is, I thought it was an alternative treatment. One year after attending the LP course I was fully recovered, and a full-time student attending a lecture at my University. The lecture covered biological psychology, and it hit me that what we were learning about the brain and the central nervous system coincided with what I’d learned during the Lightning Process. Consistent with recognized research. No alternative mumbo-jumbo.
I was so happy when one of the audience approached me to ask questions after the ME lecture was over. She had found hope that she might recover. And that’s the reason why I’m writing this story. My hope is that many will get to know what LP really is and that many more of those who suffer from ME can recover, as I did.
The person who has written this story wishes to remain anonymous. By the time of writing she was 29 years old. This story was first published on Recovery Norway’s Facebook page in 2018.