“To anyone struggling with ME, I want to say that you can get well!”

The hardest thing for me was that I had no idea how long I would be sick. Maybe the rest of my life. I wish that Google, the information I received and what patients were generally told could to a greater extent convey that one can actually get well.

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Woman (29)

Before I got sick, I lived a pretty active life. Life smiled. I was 29 years old, studying Graphic Design and working at a coffee shop. I had a nice balance in life. I got to be creative, I worked with music, laughed a lot and spent time with friends. The year before I had also gotten married, which was incredibly nice. I exercised twice a week and my body functioned normally. 

The summer just before I got sick, however, was quite hectic, and over the autumn I experienced that I had less and less capacity. 

I, who had previously felt that I had a lot of energy in addition to my studies, eventually struggled to be at school for two hours. I had a lot of headaches, tremors in my body and very little buffer physically and mentally. It felt incredibly frustrating not knowing what was wrong with me. I felt weak, and it was strange to notice that my body was not functioning as it used to. Quite ordinary things became exhausting.

I started going to the GP regularly. She took all sorts of tests, but all of them came back normal. It did not take long before she suspected that this could be ME. I did not get a formal diagnosis on paper, but she gave me a list of criteria for ME, and when I checked almost all of these, it dawned on me that I had really gotten the disease you apparently never recovered from. I had ME.

Bottomless grief had now gradually become my new normal. Every day was a struggle not to drown in it. I experienced my doctor as reflective, she told both positive and negative stories, and mentioned Lightning Process as an alternative I could try. Nevertheless, I experienced that doctors in general, Google and an information letter I received, literally said that “There is no cure for ME”, and this was a crushing fact to take in. 

I refused to let go of the thought that my life would actually not end here, but at the same time I had a body that did not work the way I wanted it to.

Every little positive thing, like a good movie or a little laughter did well, but each time the day always ended back in what felt so unbelievably hopeless. I had now gradually been tied to the bed and the sofa, and was so unbelievably tired and exhausted. It is not really possible to explain how it felt. Physically, it felt like I had been on double duty, and having come home with a run-out body. It could also be compared to having a severe flu. Every day. I struggled a lot with muscle pain and muscle weakness, and could not stand long enough at the kitchen counter to make breakfast. I therefore needed help to cook everything. Showering had to be planned. If I was going to leave the apartment, it also had to be planned. 

Especially since we stayed on the 4th floor without an elevator. My husband wheeled me around in a wheelchair, very carefully, since too much speed or too bumpy hill made me extra tired. After these walks, I always had to go back to the bedroom, in the dark, to recover. My body would not function like I so strongly wished, and I lived a very isolated life.

Today I could have pushed myself, thinking of it as a workout, no problem. But at that time, I was terrified of getting sicker. My body had stopped working, and the advice from the doctors was to never push myself, and to never use more than 70% of the energy I felt I had. And what if one day I suddenly pushed myself over the edge, so I went from “severe” to “very severe” ME? Then I would have been completely bedridden and must have had help with absolutely everything. I have people in my immediate family who have had this disease for 10 and 15 years, so for me at that time it seemed very likely that this can happen to me as well. I never thought I would get so sick, so why should I not be able to get even sicker. The thought of it was incredibly scary.

The way out of illness

Spring is coming, and things feel a little easier. We are also moving into a ground floor apartment. I feel great happiness when on the first day in that apartment I see a person walking his dog outside. I have been so isolated that this brings tears to my eyes, and I exclaim “Look, a lady with a dog”. I start to take small walks, in the beginning I go to the corner of the block and look out over the park. Eventually I walk a little further, venture into a mall 100 meters from our block and sit on a bench. Very small things, became great victories.

I have heard about the “Lightning Process” throughout the course of the disease. I have people fairly close in the family who have had ME for many years and they have tried LP, but with varying benefits. There is also a lot of negative writings about the course online in various ME forums and the ME association in Norway is actually against this. So, I’m skeptical, it just sounds like a scheme too good to be true. I am also constantly driven by the fear of getting even sicker.

This all changes when I come in contact with an acquaintance who has had almost the same course of illness as me, over the same period of time. She has also been just as ill as I was. It made a strong impression on me to hear that she has taken her life back after the course. She also told me about Recovery Norway, where I could go in and read similar stories, this gave hope. I’m talking to my husband and we decide to give it a try. To be able to complete this, I was completely dependent on my husband understanding, joining and supporting me in the course.

During the course, I learned about how the brain and the body are connected in an incredible way. What thought patterns we have can cause the body to continue down a negative spiral or cause it to enter a new pattern. As I began to feel the familiar symptoms, I told my body a different story.

And eventually my body got a new pattern of reactions without the pain and exhaustion. Little by little I came back to a normal life. Today, 6 months after the course, I want to say that I have finished having ME. I’m healthy, and with tears in my eyes I can say that I can do anything. With a healthy body, I have all the possibilities in front of me.

To anyone struggling with ME, I want to say that you can get well. The hardest thing for me was that I had no idea how long I would be sick. Maybe the rest of my life. I wish that Google, the information I received and what patients were generally told could to a greater extent convey that one can actually get well. For me, the turning point came after a course in Lightning Process. LP is not a miracle cure, but it is an aid that can help you on your way to a better and more functional life. For my part, it has really given me my life back. I am eternally grateful.

AdultsFemaleSevere ME/CFSLightning process