Two rounds of treatment in Germany got me from being bed bound with ME to being able to be up on my feet a bit every day. At that same time, several media stories appeared with people telling about having recovered from ME on a weekend course. They had been bed bound like me, or even wheel chair bound. After the LP course, they declared themselves recovered.
Nothing should be left untried in order to get out of the prison my body had become. The course cost 15 000,- which seemed cheap compared to the quality of life I could expect to have afterwards. In order to participate, we had to be approved. I filled out a form.
The questions were whether I was motivated to take responsibility for my own life and health. I didn’t want to be a bad pupil, so I prepared in every way. I told all my friends that after this course I’d be recovered. I made plans to do things I hadn’t done for years; like going to the movies. My friends were told that we shouldn’t talk about illness after the course. Never had I thought that anyone would declare in the newspaper that they’d recovered, if it wasn’t true. Later on I would learn that the LP’s definition of recovery was quite different from my own.
Before the course I got a call from the course leader for yet another check whether or not I was ready. She was bothered about me believing I had improved after treatment in Germany. The only way this could have happened, according to her, was due to placebo. This was difficult for me to understand, since I at first deteriorated, and then got better after several weeks.
Some of the participants had ME and some were burnt out. The diagnosis didn’t matter, the cause was the same. We had explained to us at the course the following about ME: It started with a flu that lasted for a long time. You got worried it wouldn’t pass. This fear maintained the symptoms. The explanation was difficult to understand because I didn’t reflect on the sore throat until afterwards. Between the sore throat and full stop with ME I had managed to for instance achieve a licence in diving.
ME had several sub categories; anxiety, depression, feeling overwhelmed and low self-esteem. From these categories there were even more sub categories, among others; nervous, sad and so on. Everyone at the course could identify themselves in something. Looking back, anyone would. What person goes through life without feeling sad, nervous or scared? All these afflictions were something we DID ourselves. We were perfectly healthy, we DID ME. From a passive to an active role in the illness. Recovered didn’t mean without symptoms in this context, and far from being able to work.
The process involved asking ourselves: Am I having the life I love? If the answer was no, due to symptoms or negative thoughts, we were to coach ourselves with a simple mantra and visualise the result we wanted.
First day went well. On the second day I started crying when I came to the course, and spent half the day crying in the back row. The whole mystery of LP had been explained to us, and I felt it wasn’t enough. This was not the whole explanation behind my illness. I had done symptoms since the start of the course, and had done the process so many times that I was exhausted and had more brain fog than ever before. I interpreted the fact that I was crying so much as meaning the course was right. I thought I was rather dramatic myself.
After these chaotic days, I gave my signature to having recovered from LP. YES! We’d been imprinted that we WERE recovered, but DID sick, which I now was working on putting an end to.
After the course weekend I continued to use the process and increase the level of activities, as I had learned. I didn’t pay attention to how my body was doing. To check your body for symptoms was part of DOING ME. To share experiences with other ME sufferers could also make us ill, so I kept away from online forums where people discussed illness.
The doctor sent me to rehabilitation for people who wanted to return to work. It didn’t go well. I had to cancel and go straight to bed and stay there for months in order to get better. I kept trying anything, like a version of Jim Carrey’s role in “Yes Man”. At the Norwegian Labour and Welfare Administration they laughed when I wanted to join a friend to work. She was in between studies and worked in a one-man canteen. I joined her. Sat and kept her company. I chose to ignore getting a severe headache and getting dizzy from the visual disturbances. I had been out of work for a few years, so it was probably natural to get so tired when having a go again, I said to myself. I ignored the fact that I didn’t actually do anything.
From the outside, it could seem like I was getting a lot better, since I all of a sudden did more. The truth was that things were fluctuating enormously. I lay at home in bed for weeks, months. The hardest thing to think back on is how I lied to those around me, directly and indirectly. I said I was healthy. During the periods when I was very ill I avoided answering people. I didn’t know what to say anymore. I also came up with a lot of excuses for my symptoms, which was not that I was doing ME. It was flu season, pollen season, Monday or Friday. This is how I maintained the lie. When I look back, it’s obvious that I had lost myself.
A few years went by with fluctuating symptoms and various explanations for this. Then I found out I was pregnant. I was so happy. I had been looking forward to being a mom for as long as I could remember. Pregnancy was the perfect explanation for why I had to lie on the couch for half a year, without doing anything in particular. I managed to have the baby at home for 18 months. The focus should be on him, not my health, which I was working on DOING better. Whenever he slept, I slept. There was no capacity for anything else. I had focus only on the baby and collapsed on the couch every evening. Up like a lioness, down like a rag. The happiness of being a mother was so strong that I was able to endure more symptoms than ever before.
The summer before my son was to start kindergarten, my gut feeling started to get bad. I was too sick for this to only be because I had a toddler. My son was healthy and slept through the night. I also felt too mature for this to be duty driven.
Another strange thing I did was to travel a lot between the south of the country, where I live, and the east of the country, where I’m from. In this way I could avoid questions about how I was doing. I was just on the move, at least so it would appear. I just changed places where I took care of the baby and lay on the coach. I could not bear to be confronted with the fact of being a mother to a toddler, but still sick. My gut feeling became really bad towards the autumn, and my wish to avoid reality was enormous. Had I really given birth to a child without having been able to DO recovery? When autumn arrived and the child began in kindergarten there was no escape anymore. I was not able to get up every day to get him to kindergarten. There was no other explanation for this, than that I was really sick. The defeat was clear and years after I became ill, I had to go though a new grief process over the life I had lost. Now it felt even worse than the first time, because now I was responsible for a child. This part of the story is a bit lost to my memory. This is how things are with ME, the sicker you are, the worse is the memory.
My doctor didn’t think the ME diagnosis was correct for me anymore because I was so sad and anxious. So she decided to remove it. At that time the Norwegian Labour and Welfare Administration started signalling that my work assessment allowance was running out. So there I was. Without a diagnosis, without rights and with a child under the age of 2. One evening I was really desperate, I did a search on ME on facebook. “Gosh. Could there be others too unable to MAKE themselves well again” I thought, shocked. There were. Several thousand. I wrote my most desperate post ever. Am I healthy, am I sick? Should I exercise? Rest? Can the doctor remove the diagnosis, don’t I have any rights? I have a child.. and so on. The response was overwhelming. Lightning Process was a common reason for people’s bad experiences. The shame of the situation I had put myself and my son in, evaporated in a few minutes in the group. I got help with what I now had to do in order to sort things out. To my surprise, there were specialists who thought ME was physiological and something one should be considerate of. I received the diagnosis one more time, with strict instruction to stay within my limits of capacity and to save a little energy every day. I’ve done that now for seven years, and I’ve been so lucky to have improved a lot. In addition the illness is well regulated. If my level was at severe/moderate degree at the worse, it’s now up in mild degree. Not only did I deteriorate (and my life turned into a chaos) from LP, but I’ve also improved by doing the opposite.
The possibility of becoming so brainwashed that you believe you are recovered when you obviously are not, is frightening. I choose not to be ashamed. People will do anything if their need is big enough, including me.