It’s been difficult to share this, but I’ll give it a try.
I am born in 78, and ME after mononucleosis Christmas -96.
It took about two years before I received a complete diagnosis: “postviral chronic fatigue syndrome/CFS” and before that I had diagnoses such as migraine, worsening of fibromyalgia (which I have had since childhood), otolaryngeal problems), stomach-intestinal problems.
I live in Eastern Norway and was put into a course of treatment that involved a research study at a psychosomatic outpatients clinic at Rikshospitalet. Here they also changed my diagnosis (without my knowledge) to neurasthenia. After only getting worse from all the attempts to exercise in order to improve, pulling myself together, conversations, tests and questionnaires, I quit with a heavy heart. The message I received was: You don’t want to get better, so we can’t help you. It was the first, but unfortunately not the last time I heard this.
In 2003 I was at Haukeland University Hospital, and was finally given a correct diagnosis G93.3 Myalgic Encephalopathy, by dr. Nyland. I was told I was a fairly typical case. This was one of the first times I met acceptance for what was wrong with me as a complete disease picture, and that I didn’t just suffer from wrong attitude.
The very first person who saw my whole being and the disease picture as a whole, was a naturopath. She put me in touch with a GP and he arranged a referral to Haukeland. After getting the right diagnosis, it helped a lot with the Norwegian Labour and Welfare administration as well, and I got some peace of mind that I had an acceptance of what was wrong with me, and now also some money to live on. I also had a boyfriend and a child during this period. The GP actually encouraged pregnancy, as “many recovered by it”. Not me.
Around 2007, there was talk of the Lightning Process in a Facebook group I was part of called Together about ME. I saw that several people would participate, and got my hopes up. I talked to my mother, but unfortunately we couldn’t afford for me to participate.
Some kind relatives who were themselves educated in health care, and with their own eyes had seen how badly I was doing, wanted to contribute. So with good help, I was ready to sign up for a course in 2008.
The GP supported this. He had heard a lot of good about it.
So we applied, and I had to go through a round of interviews. Was I motivated enough to get in? The course was held at Hotel Opera in Oslo, with a British instructor who has received direct training from Phil Parker; Sally Ann North.
My mother got to sit in the back row and observe.
The process is probably already well described: First we got a small introduction in how the brain can form new paths based on what we thought and did. By actively choosing differently, we were supposed to trick our brain into choosing healthy thoughts and feelings and to no longer do ME.
We were told to walk in a pattern on the floor each time we did ME, say “stop”, ask “what do you want now?”, choose “the pit” or “the life you love”.
We were also taken on one by one for what I believe must have been hypnotherapy. I can barely remember it, but my mother told me that I stood up there for a while and was “completely gone” while she instructed me to find a mental sanctuary I should seek out, a nice memory, where I felt only good feelings.
Then we were instructed to break with all the things in our lives that led to us to do ME. We should rid ourselves of sunglasses, dark curtains. Not lie on the couch, if that had been normal for us. Not wear sweatpants, but normal clothes. Dress up, wear makeup and be healthy. Cut contact with friends with whom you did ME, not visit online forums, not seek out places where you do ME. We also had to moderate how we talked. Not use words like “but”, “not” or illness descriptions such as that it hurts or that something is difficult.
Finally, we all had to sign on a piece of paper that we were now healthy and no longer doing ME. We went out for a meal after the course. I without sunglasses. Everyone in my family was so happy. At home, I crawled into the house through the kitchen window. No older patterns should rule here.
I continued to do my best to do recovered, but struggled terribly. I had a lot of symptoms, but couldn’t tell anyone.
The act was very exhausting to maintain. I still rested, but didn’t call it rest. Just taking breaks, or something like that. As healthy people do. We all get tired.
I had my first follow-up conversation with the therapist.
I tried to explain how I was doing, without seeming like I was doing ME.
She understood that I was trying and said that since I had been ill for so long (11 years) it could take longer. I just had to make the process more frequent.
I told her that I did the process all the time, and that it prevented me from doing other activities because all of the time I had to stop and do it. Then I got a tip on how to do the process on the fingertips: stop – thumb against index finger. What do you choose? Thumb against middle finger etc. I continued working on it. Rested while the house was empty during the day, didn’t admit how badly I was doing.
I also didn’t go to my doctor for follow-up, because that would have been doing ME. I was so sick that I fainted when I stood upright. At the next call, I was told to just continue. Since I had been sick for so long, I had to settle for spending as much as a week-month for each year I had been ill.
She asked what dreams I was pushing away, since I was doing ME.
I told her that we wished for another child, but did not dare to. Both because of my health situation, but also because my husband was tired of having so much responsibility alone. The advice was: Go for it! Chose “the life you love”! You don’t do ME anymore, do you?
My husband and I agreed to give it a try.
I was doing so much better, wasn’t I?.. I wasn’t completely honest with him exactly how badly I was doing. He was away a lot because of his work, we had frequent babysitting for the youngest, and I mostly rested alone. In reality I had very little time on my feet during a day, and I was ashamed of it. I continued working with the method. Had further conversations with the therapist. I was told to calculate the same amount of time to recover, that I had spent doing sick… 11 years.. During my last conversation with her, when I was still struggling, I was told: “You just don’t want to get better, do you?”
The pregnancy that followed ended catastrophically. No baby and a broken body. That was when I first went to the GP again, the first time since the LP course. He was shocked by the state of my health.
I was so much worse than before the course. I was strictly advised to rest, get blood values normalised, and not as much as even think about getting pregnant again.
It was in a way good to get permission to be in a bad shape again. I had been feeling ill for so long, but hidden it, felt ashamed of it and tried to pretend that everything was normal. It was a lot to live up to. Expectations from myself, from family, from those who had supported me with so much money. Everyone I had deceived. Friends I had turned my back to, and whom I haven’t regained since. I felt like a failure.
The final straw came Christmas 2009. Then the newsletter arrived where she announced that she would now run Hypnosis/LP for children with cancer at The Royal Surrey Hospital Cancer unit. I still have some of these newsletters.
In 2010, I was so ill that I fainted when I stood upright. Once I was really unlucky and fainted on the stairs. It ended in a back fracture. At the emergency room, a pregnancy test was taken, since we had started trying again for a baby. There is something about getting an ending to a started process, and the grief over what should have been. The test was positive. It was a tough pregnancy, but the baby was born and our family was complete.
I have had a very hard time reclaiming my identity after the course. Accepting the disease again has been very tough. I still have some bad habits that I struggle to rid myself of: such as having to pretend I’m perfectly healthy in front of others, and only to rest in my own company.
I feel guilty if I complain of symptoms (even at the doctor).
My husband, children and close family obviously see it, because in principle it’s impossible to hide how limited a life I live.
I am the mother who never attends parent meetings, sports events and graduations. I am mostly housebound, at times limited to only a life in bed and on the couch. I turn off all the lights and draw the curtains.
Luckily, I got help with getting aids. Kitchen chair, scooter, wheelchair, small stools around the house, filter glasses, earplugs. This has given me such a richer life, even though the threshold for using them has been sky high.
LP put me far back in terms of acceptance and coping with the disease. Instead, I got a lot of shame, a guilty conscience, and a sense of failure. I also feel stupid and gullible. Not to mention financially scammed. I’ve been thinking lately that I would probably like to get some help to cope with the trauma that I let this therapist expose me to for a year.