The stories on this webpage are posted for informational and educational purposes only and are not intended to substitute for medical or other professional advice. Consult your physician or other health care provider regarding your symptoms and medical needs.
In the Autumn of 2004, I was diagnosed with ME by professor of neurology Harald Nyland at Haukeland Hospital. He had had more than 900 patients and was, according to my GP, considered the foremost at ME in Norway.
During the examination, I was informed that I had contracted a serious neurological disease, for which there was no cure. The doctor did not know of anyone who had recovered, but he told me about a patient who had managed to complete his law studies by doing yoga once an hour. In an instant, my world collapsed. I had a husband and two children, and I felt like I was on top of life. Now everything was in gravel.
Three years later I recovered from a course in Lightning Process – and since the summer of 2007 I have been completely healthy. I work 100%, I exercise and am social and I live an active life in all possible ways.
So what really happened? Well, here’s my short story.
After a long stay in a tropical climate, I developed an allergic autoimmune condition called angioedema. That is, I got a swelling in the groin, big as an orange. After a few days it thankfully disappeared. Then new swellings appeared. This time in the throat. At the emergency room, I was prescribed cortisone treatment. It was quite high doses, but I felt good and was excited work – I loved my job.
After four weeks on cortisone, I got an acute pneumonia and was hospitalized. There I was treated with antibiotics. I was so sick that I lay for a whole week. I do not remember much from my stay, I mostly lay and slept, but I continued to medicate myself with cortisone, because the swelling in my throat came and went.
When I was discharged from the hospital, it was with a two-week sick leave in my pocket and an exhaustion I had never felt before. I was so tired that I hung in the arm of Mikkel, my husband, when we went from the hospital to the car to drive home. I experienced a kind of bodily collapse, and I would not be myself again until several years later.
The first two weeks of sick leave buzzed in the back of my mind. It simply did not fit, because I had been given a temporary position in the newspaper editorial office, which I very much wanted to be extended. It was therefore important for me to be at work and and deliver good material to the newspaper.
Instead of taking two weeks of sick leave, I was back in the editorial office after just one week: “Here I am; and I take what is available from vacant hours! ” Thus, I worked day, night, weekend and whatever. And I had a great time! I had a lot of fun and looked forward to going to work every day. I had both cool colleagues, they felt like my friends, and tasks that I enjoyed – and mastered.
After a few weeks I got sick again, this time with a bronchitis. I got another round of antibiotics, and took a couple of days off from work. I was frustrated, because I needed to get back to work. But after a week I was back in business. But I was not quite as before. I was fatigued. Weird fatigued.
I remember that I was at work in a small town and was to interview Minister of Culture Valgerd Svarstad Haugland. Prior to the interview, I had to borrow the hotel room from the photographer to rest for an hour. Later I was to spend a day with Minister of Local Government Erna Solberg, and then I also suddenly had to rest on a sofa in the hotel lobby, while she was inside giving a lecture I obviously should have heard. It was all weird, but I was not particularly worried, and I remember trying to wound my self up with diet coke and coffee. I managed to stay at work both in the summer and the fall, despite a fluctuating symptom picture and constant colds. I tried to solve it all by exercising a little harder, eating a little healthier and going to bed a little earlier. But I did not get better.
It was as if I had run a marathon, got the flu and had the hangover of all time – every day!
Basically, I experienced that I had the best life in the world, a wonderful man, two lovely boys, many good friends, safe finances and a job I enjoyed very much. But my body failed. I had sore throats, aching muscles, poor sleep – and I only got worse. After Christmas it said stop. Then it was as if I had run a marathon, got the flu and had the hangover of all time – every day!
I went to the doctor, but she did not find anything on her tests. And since I was obviously healthy, I went back to work. Somehow I managed to keep going by going to bed right after work and getting up the next morning and then going to work. Today I do not quite understand how, but I pushed myself and mobilized every morning and collapsed every afternoon. A few months later, my boss sent me to her GP. He took it all very seriously and began an extensive investigation, at the same time as I went out on sick leave.
A few months later we had found; yes exactly – nothing. All tests were normal. I began to wonder if there could be something with the job, so on impulse I applied for a new job in the communications department at the Ministry of Foreign Affairs. I was called in for an interview, and was very optimistic, at the same time as I started working in the editorial office again. After a couple of weeks I had to throw in the towel, it did not work, because the symptoms hit me right on the ground. I called the Ministry of Foreign Affairs and said that I was not relevant anyway, and I felt the despair and frustration increase.
For the next few months, I worked 50% in the newspapere, while limiting all other activities. It worked just as badly as you might think, but I persevered, for what else should I do?
“You can never get well”…
The question hung in my head: Why am I so fatigued? Why do I get the feeling of flue? What’s wrong with me? I was nauseous, dizzy, shady and exhausted. I had muscle aches and flu symptoms. My brain did not work normally. At the same time, I always thought that I would soon be fine. Tomorrow. Next week. Next month.
In the summer of 2004, I sat at home reading my own newspaper. There I came across an article about Myalgic Encephalomyelitis – ME, and when I read about the symptoms I felt; yes, that’s exactly how it is. I sent a message to my GP, and we began the long road of investigation. A couple of months later, I was finished with a psychologist, who said that there was nothing wrong with my head. Thus I came to Professor Nyland at Haukeland Hospital. I was exhausted and full of flu, my head was throbbing, my body ached, my nausea was unbearable, my brain was no longer functioning, I could not do the simplest tasks, I was dizzy when I got up, my hands and feet were cold. And the message was: “There is no cure!”.
I cried because I felt so miserable. And I cried because there was no hope to trace
I had a neurological disease, in line with MS: “You can never get well, but you can get much worse if you do too much. In the worst case, you can lie in a dark room without taking nourishment on your own for years ”. If I saved energy, and shielded myself from all stress, then maybe I could learn to live with the condition. The next few days I was in worse shape than ever. I cried and cried. Crying over the life that was gone. I cried for my children and my husband. I cried for the job I lost. I cried because I felt so miserable. And I cried because there was no hope to trace.
Convinced of physical illness
For several years I related to these frightening and undocumented “truths”, and I categorically rejected all treatment that did not support this understanding. I was convinced that my physical symptoms must mean that it was a physical defect, injury or illness that had to be treated with medicine. Psychological approaches were out of the question since both doctors and psychologists had denied that I had mental health problems. It was the body that was sick, not the mind. The pursuit of a medical cure therefore became a real obstacle to trying another type of treatment.
The victim role gradually emerged. I was angry and frustrated, and when despair took over, I was not very rational. I became self-pitying. Eventually I was so run down and desperate that it no longer mattered if my symptoms were physical or mental. During this period, I mostly lay in bed with an eye mask. I had brain fog, low-grade fever and extremely sensitive skin. All I wanted was to get out of this. I had almost given up on being completely healthy, so all I wanted was an improvement. Just a little less exhaustion. Slightly less feeling of flu. Slightly better sleep. And not getting worse from all kinds of activity. Then a friend suggested a course in London. It cost 15,000 norwegian kroner for three days, but I did not feel I had a choice. My husband did a little more research, including talking to someone who had attended the course. The woman he spoke to said that both her husband and son had ME. She said the husbond had gotten better, but the son had recovered completely and we should try. It all seemed too good to be true. And I was too sick to travel to London. But, I was also too sick not to go to London. So we left, both my husband, Mikkel, and I. Already after the first day of the course, I called home to my children and said: Mom is healthy!
What had happened? During the course, I learned that my brain could trigger automatic unconscious bodily reactions, which could cause troublesome symptoms, and I learned how to influence these through training my brain. The teaching lasted 4 hours every day for three days. It all seemed so logical. And I got to use the methods.
I stopped thinking that I had a mysterious illness without a cure, and instead I began to think that my brain had hung up. I practiced getting my brain to stop sending error signals, and after a few months, I was kind of like before. It was all life-changing to the extent that I decided to learn as much as possible about this. I have to learn everything, so I never end up back where I came from.
The first step was to train as an instructor in the Lightning Process in London. And since 2008, I have taught more than 1,500 people with similar ailments as me. The second step was to learn more about psychology, and I took a master’s degree in management with organizational psychology. The third step is happening now, as I have begun on a doctorate in psychology, where I immerse myself in what exists of science in this special field. My goal is to contribute to knowledge for the benefit of those who find themselves in this situation in particular, but also for their families and society in general.
This text is primarily based on a post by Live Landmark in the newspaper Fedrelandsvennen and an interview in Dagbladet (2012).
You can read her whole story here.