I was once one of the most severely ill people in Norway: How I recovered from ME

What happened to me is that my musculature became overstrained in 1998. It felt like it happened out of the blue. I was attending a ‘folk high school’ at Hamar and playing a wind instrument. The standard was very high and there was a pressure to perform and I was really keen to do well. This was probably one of the reasons for what happened, but truth be told I also often stayed up too late at school. I did not get sufficient sleep which creates stress hormones in the body which in turn affected the musculature I needed in order to play.

The problem was that nobody understood what was happening. They had never heard of anybody else with this type of overload strain, and I became very anxious. I thought I might want to study to be a musician, and now it seemed I was unable to express myself in this art form. This caused a lot of internal conflict. Even so, it took four whole years before the ME floored me. In the meantime I was very active. I trained a lot, I danced, I went for mountain hikes. Still, what happened four years earlier was always at the back of my mind. The fact that I was still unable to play was a big issue for me. In the interim period I sought medical advice, I saw specialists, but nobody could tell me what was wrong. Gradually, my body suffered from more overload, for example in my legs after a long hike. So what happens is that I very quickly thought back to when I first experienced muscular overload. I get very stressed out wondering what is it and thinking “Oh, now I have to go through a new round of seeing new doctors and once again nobody will figure out what it is .” Which is precisely what happened.

I now know that the body quickly goes into a state of alarm, based on feedback I am not getting. The specialist doctors do not understand what is wrong. The underlying cause is simply that I had not been getting enough sleep at the folk high school and consequently suffered a reaction. In turn I became scared of my physical reaction, which was actually quite a normal one. Things build up and so basically because I never understand what the matter is, my body ends up taking the toll. I simply feel worse and worse. I get more and more stressed out. Finally I collapse altogether.

I learnt that the body goes into a state of alarm. One gets laid out flat, chronic. At this stage, there’s not much I can do right. I can lie there and make sure that I do not  exert myself, but I don’t get any better because my body is constantly producing stress hormones which negatively impacts my immune system. I deteriorate further. I become oversensitive to light and sound and lie there with ear protection and earplugs. I cannot bear to be touched or spoken to or anything. I was so ill that I had to be spoon fed during the last two years of my illness. I was unable to go to the toilet at the end. For two years I was unable to take a shower. For three and a half years I depended on full-time care.

So what happens next, and this is quite interesting – in retrospect I have been wondering why I became well again. I have understood why I recovered from a purely mechanical point of view, what happens to your body in physiological terms. I got well through the LP method, which is a cognitive method. You use your consciousness to impact your physical body. This method had been developed in England a few years prior to my own recovery. I have checked with others who were ill at the time, because the media brought to light some very positive stories of people who had made a complete recovery. They did not go around feeling under the weather and gradually getting worse. They were fully healed, back at work and living their lives. Naturally this made an impression on those of us that were still sick at the time. The main factor was that it gave us hope that something could be done.

Because of course I had my doubts. The first time I heard about it … naturally I had hoped it was some medication because my father told me that there were some exciting news coming out of England about people getting well again. “Yes, what is it?” I asked. “Well, it was something along the lines of using your mind or brain to influence your body, or stuff like that.” And I just: ”Dah! For heaven’s sake!”

I had actually seen a psychologist to rule out that aspect. That this was not psychological. Because it might easily have been. I did understand that I had been fairly stressed at the folk high school. But it didn’t make any difference, so I felt I had done my work in this regard. But more favourable articles were published, as I said, and they did make some impression on me. I was thinking: “Okay, so maybe it will be possible for me to get well…”. But I was too sick to travel over to England where the method was being used. I would just have to wait for them to bring it to Norway.

And so they finally did, sometime around 2008. And then they came pretty directly to me afterwards, one of the recently educated instructors. In retrospect this is what I see; that I took a choice to try a method of getting well again. I could easily have chosen to listen to the negativity and anger and irritation on the internet. But as I said, the reports were much more favourable at the time so perhaps I had a very positive basis to try it out.

The second thing that happens is that I learn this technique. I work on it very consistently. I do what I am supposed to do every time I do it. And it works for me. My body responds. With this method you are supposed to use your body a little bit in order to reinforce the effect. But I was far too sick to do anything, so I simply held the hand of my instructor. She had to visit me at home for three days to train me. I was also thinking that it was all too horrible, that I wouldn’t be able to deal with it. But I held her hand, and answered by giving it a squeeze. She explained to me how the mind and body was interconnected and taught me a method I could use to impact my body on the physical level. To change my symptoms for the better. To quite simply, remove all symptoms.

I could easily have taken a turn for the worse. They talk about this in the media. I hear that some people get better for a while, and then maybe get worse again. And then people often say that the method didn’t work. And I’m thinking: “Yes, but after all it did work for some weeks at first.” The same thing happened to me. After three weeks of gradual improvement I was able to sit upright and to take showers on my own. I had to use the technique all the time in order to manage. But I did feel that when the symptoms suddenly overwhelmed me again I could have chosen to simply collapse. I could have decided to say: “Right, I am now feeling a lot worse again. So it didn’t work – this stuff I’ve been doing. I was a little bit better, but now it is back.” What was absolutely vital for me is that I made the choice to phone the instructor and get some guidance on how to get myself back on track. She reminded me of what I had achieved, and I regained my motivation to keep working at the technique. So there is a basic motivation at the bottom to dare to choose to do what it takes to get well.

I can give a brief outline of exactly what happened as I am getting well again, since I was so terribly ill. The first reaction I had when doing the technique was that I became tired. I was in bed, completely wasted, wearing an eye mask and everything. Having done the technique for about 15-20 seconds what happens is that I get very tired. I didn’t give it another thought. But the instructor had so much knowledge about that reaction so she used it for all it was worth to get me working more. This had created a physical change that I used to sit up in bed. To be able to get into the wheelchair. To get two metres towards the shower. The symptoms return. I perform the technique and manage 2 more metres. I carry on like this until I am inside the shower. I continue while I am taking a shower. This is my first shower in 2 years.

So there has to be a will there. I could have let the symptoms just … pffft – you know, overwhelm me. But I chose to do something different. And this is based on my newly acquired knowledge about the mind-body connection. How everything is connected. My physical condition can be influenced by my consciousness up here.

I’m now thinking that if I had learnt that it is not possible to become completely well again, but what I heard was that people could recover fully. My instructor said to me «Well Mette, will you become our next success story?» And I just «Oh! Okay! We’ll go for it!». Then she told me that in the UK there were several hundred of people who had recovered fully. Completely well again from the same diagnoses that I had. I was thinking that I had been in contact with my GP for many years, I have ME, I need to rest and then perhaps I will get well again.  It is not very likely that I will be. And then I was thinking: «Why have I not been given this information?». Imagine if I had had the opportunity to try it out? People getting well again is just so important.

If I had known that «Maybe you can get better» or that «You must live with this illness», how motivated would I have been to push and train myself up to the next level? If I had known that there is a major likelihood that you will remain here? I would not have had the guts to push on. So I totally depended on the instructor’s knowledge into what this is all about and what I have already achieved. Renewing my courage to carry on.

People talk a lot about balance. We’ve been told forever that when you suffer from ME you must not push yourself. That it will make you worse. And it does. You really do get much worse. Physically. There is no doubt about it. The point is; when you have a technique to influence what is happening during activities then you can train yourself better and better, when you have this knowledge about what physical movements do to us.

My instructor asked me: «What do you want to do Mette?». I had been bedridden for 3 years and simply thought: (eyeroll). She challenged me to pick some activity, and I thought: I would like to take a shower. And I managed to do so. I would like to go for a drive, and thinking at once: A drive; then I need two sets of sunglasses, and need earplugs to manage this. She wanted me to do it, because this would force me to do the technique that would carry me further up from the level I had reached, during the drive. So I say we can drive for a couple of miles, and then all my symptoms flood back. I tell her I can’t take it anymore. And I truly can’t do anymore. So we stopped the car and I practiced the technique. I felt a slight change and relaxed a bit more. We drove on. In the end I managed to take that drive and I got lots of motivation from this achievement. It gave me new encouragement to work to the next level, and the next level again.

There were many interesting comments and reactions to the news that I was well again. Enough to write a book about, actually. Some of the first things that happened when I got well: We were in contact with many parents of severely sick children. I had this hunch that maybe I should wait a bit to tell the world that I was well again, because there was a lot discussion in the media, a lot of controversy. But after I did tell those people with sick children we received this unbelievably crass phone call. They just told us off and claimed that since I had recovered using this method it meant I was telling the whole world that everybody with ME is purely psychological. This was detrimental to all ME patients.

This was also the reaction we got from some of the people with sick children. I was thinking: there is another option. How about just looking at what is actually happening? People are getting well again, and what can we do about it? It is a great advantage to embrace this knowledge because it does actually make people better, as we have seen in Recovery Norge and elsewhere. What I do see is that patients and their loved ones are victims because of the knowledge that is denied them. I am terribly disappointed on behalf of these patients today because they are misguided and fooled by the media based on people who are just angry and want to cast blame. I feel sorry for so many patients that I believe could have been well again today but are too fearful because of everything they read. So there is some food for thought there. A medical focus is good, of course, and necessary. I am not saying that this is a solution for everyone, but it will work for many more people than they realise themselves. And also more than some medical personnel and doctors realise.

That was my story.

This is a transcript of a presentation given at Skogli Health- and Rehabilitation Center, 16.08.2018.