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.
In January 2009, ten years ago my daughter and I went to England to attend a Lightning Process course. We were feeling excited, yet doubtful. After the first course day, she fell asleep as soon as she went to bed, without taking any sleep medicine.
Afterwards, in the period leading up to the high school graduation celebrations in May, my daughter made sporadic progress. Every day she seemed to “perk up”, as her fellow students became increasingly more tired. This was despite her taking part in most of the celebrations. That’s when we really started to believe that the ME was a closed chapter. How did it happen?
When my daughter was 14 years old, she started to get frequent headaches and had to skip many of her football matches. She also had frequent stomach aches. In the autumn, winter and spring of Year 8, she was frequently ill, suffering from fevers, flu-like symptoms, general bodily discomfort and fatigue. The school was very accommodating this year, and particularly in Year 9 as her condition deteriorated. As parents, we despaired and wondered what could be wrong with her as the doctors dismissed one thing after the other.
Felt like a death sentence
Naturally, we read about ME online, but we just could not believe that was a possibility. Even at that time, we read sad accounts of the illness, with no hope of improvement. So when she got the ME diagnosis in Year 9, we, as parents, almost felt like she’d been given a death sentence. At 15, our active, happy, caring and positive girl had become a mere shadow of her former self. I do not need to describe what happened next – our story is the same as everyone else’s. We tried absolutely “everything” that could make her better, but, over time, nothing worked.
Too good to be true?
The turning point came during a stay at Catosenteret rehabilitation centre. While she was at the centre, her condition deteriorated week by week. She lost so much weight that the centre no longer accepted responsibility for her. The centre had the very best intentions and wanted to help her through their programme, but although she was really excited about all the activities there, she kept on getting worse. The turning point came when she met another girl her age who told her about a Lightning Process course she was going to attend after her stay at Catosenteret. We had read a little bit about this course, but thought it seemed too good to be true. We changed our minds as soon as our daughter’s new friend called and said she had recovered. We called the same course instructor and booked a place at the next course just after Christmas.
Out of the wheelchair
We went to Newcastle (there were no courses in Norway at the time). My daughter was in a wheelchair at the airport. I was prepared to learn some of the course material in order to gradually teach it to my daughter over spring. She only had 15 minutes of home schooling on most of her good days (up to twice a week), so I didn’t think she’d be able to do much of the course on her own. Haha! If only I’d known. After the first day on the course and at her request, we went shopping at the largest shopping centre in North Europe. We had lunch there and shopped until I, as a mum, dropped! WHAT a change! Later, she told me she went in and out of changing rooms and toilets to practice what she had learnt at the LP course and to recharge her batteries.
The rest of our stay in Newcastle was a happy one and she kept practising what she’d been taught. On the way home, there was no way she would use the wheelchair and there was some confusion when the cabin crew realised that she had walked off the plane by herself. Back home we celebrated and filled our weekend with lots of different activities. On Monday, we returned to everyday life and the efforts and persistence to recover began in earnest.
We had our ups and downs. Unfortunately, we did not have the same follow-up from the course as they give now. Her improvement stagnated. She was much better than she used to be, but had not fully recovered. In retrospect, I can see that she had lost some of the focus on her exercises and lessons from the course. She was well enough to think that “from now on it will go smoothly”. It was a bit of the same mindset we have after a flu or another illness as we start feeling better. But with ME, and possibly other conditions, there may be other factors than a virus (or other pathogens) that cause symptoms to reappear again and again.
In retrospect, I can see that she had lost some of the focus on her exercises and lessons from the course
For my daughter, it may have been the high goals she set for herself for everything including her school work, how good a friend she was, her hairstyle etc. It had to be all or nothing. In retrospect, it’s easy to see that these were “blind spots” where she didn’t apply the LP techniques because she, and we as parents, were used to thinking “it’s just her nature, it can’t be changed”. Although her symptoms were now milder, there may have been other blind spots that sustained them.
A new LP course
A year after the first, we decided she should do a new LP course with a different instructor. My daughter was a bit embarrassed to face the previous instructor as she had “failed” to recover completely on her own. (again she was setting too high goals for herself). The new instructor did not find it strange at all. She suggested that my daughter take the course alone, so that she could help her with the exact aspects she needed to address. That was the night she fell asleep as soon as she went to bed.
There was still a lot of focus on “the process” (the LP course exercises), but now she had the help she needed to move on. During spring, she managed to do more school work and pass two subjects. After summer, she passed the rest of the upper secondary school subjects in one year as an external candidate, except for a 3-year course in Spanish. She passed the 3-year-course the following year. This was after having spent three months studying the language in Spain. She stayed in Spain alone and managed just fine. Since then she has studied and worked for several years in Norway and the UK.
She had got the help she needed to move on.
Has it been sunshine ever since? All has been bright with regard to the ME, but of course my daughter can fall ill like everyone else. Some days she is sad. Other days she is jumping for joy! She exercises and gets tired. And her body thanks her by giving her more energy. All this is part of being human.
As parents, we are eternally grateful to the friend who made us dare believe it’s possible to recover from ME! And not a single January passes without us sending grateful thoughts to the two LP instructors who paved the way for her.
- For personal reasons, the family wishes to remain anonymous. The photo is of the actual parents.
- Please note that since this article was published Catosenteret rehabilitation centre has expanded and altered their programme for children with ME.