Recovery Norway does not make any claims about how many can get well from strategies like the ones our members have used, although we do think they are evidence that it is possible. We do acknowledge stories of people who have experienced worsening symptoms after such strategies too, and we think this is one reason for doing more research.
Strangely enough, the doctor couldn’t find anything wrong, and so we tried to send her back to school. But our daughter wasn’t even able to walk down the hill and up the stairs. Back at the doctor’s, he dismissed the need for further tests. Our daughter remained just as ill, and weeks went by.
We parents then went through a phase where we were unable to accept that she couldn’t just get dressed and push through a few hours at school. We drove her to school several times, only to realize she wasn’t even able to enter the building. It hurts when one’s child is lying in her room, unable to tolerate even the everyday sounds of her family. We, therefore, went to a private clinic and paid several thousand of krones to have a wide range of blood samples taken. The test results were six pages long, and the conclusion was that she suffered from hidden pneumonia. We convinced them to prescribe her a hefty cure of high-dose antibiotics, which they said might help – or might not. Our daughter did not get better.
Instead, she got increasingly worse. She stopped eating, and her mom once again took her to her GP. He suggested she might be suffering from an ear infection, as she didn’t tolerate sounds. That was it. Back in the waiting room, mom let our daughter sit there alone while she went back to the GP, shouting and screaming at the top of her voice. She was terrified. Then the GP called the hospital.
We were quickly received at the hospital. A nurse tried to pull our daughter through an admission interview, but she was too ill to sit on her chair. Then they said they were unable to start comprehensive physical exams this close to the general staff holiday, and they suggested her problems had “something to do with fatigue”.
Then the worst of all happened: Since our daughter now weighed only 28 kilos, they asked us to contact the child welfare services, so that they could help us with our other children. We took it as an assault. Not only did we ask for help for our seriously ill child, but they suggested we should seek help for our other children in order to take better care of our daughter!? Mom lost her tongue and was terrified the child welfare services would take away her other children. The hospital, for their part, believed it would be helpful for us to take the other children away. So, first the GP refused us any help, and then we were met with such an offensive message at the hospital!? We got ready for battle. The Norwegian health care services were unable to assure us that they knew anything about this or that they would help us. Instead, they induced more fear and uncertainty about our future with our sick daughter. Consequently, we couldn’t trust them.
We gathered out things and got out as quickly as possible. The people at the hospital also made clear that if our daughter did not gain sufficient weight fast, they’d have to feed her intravenously. We felt we’d been given two weeks to prove we’re not the kind of parents that give up on their child, and for the next two weeks mom forced her to eat a tablespoon of vegetable oil, nuts and other fatty foods every two hours. She gained two kilos. At the hospital they were impressed, and we were relieved to avoid hospitalization.
In the summer of 2017, our daughter is at her sickest. At the same time and to her great sorrow, one of her best friends moves away. In the autumn of 2017, she is diagnosed with ME according to the Canadian Consensus Criteria at the hospital. There we meet another mother who tells us about the book “Wake me when it’s over”, which tells the story of a woman recovering from ME. Mom is about to vomit, she immediately thinks “I’m never going to read that book!” She remembers having read that “40% of those who participate in the Lightning Process course get worse”. Thus, it was not even an option to read more about that method. About the same time, new blood samples were taken at the hospital, and she tested positive for mononucleosis.
Because our daughter has been diagnosed with ME, we adults go to watch the film «Unrest», a documentary about ME, at a cinema screening organised by the Norwegian ME Association. The documentary shows a woman crawling into her house, and we parents break down completely. What kind of future is awaiting our daughter? Professor Kristian Sommerfeldt also gives a talk on the topic of ME, and says that ME can behave very differently from person to person. Mother asks him directly if it is likely that you can suffer from kissing disease and ME at the same time, and he recommends further examinations. We therefore ask the hospital to put the ME diagnosis on hold.
But after our daughter has recovered from the kissing disease in January 2018, she’s still just as sick. We feel the need for a second opinion and get an appointment with Professor Kristian Sommerfeldt at Haukeland Hospital. He spends a lot of time talking with our daughter, at least an hour, and she tells about nausea when showering, tremors in her body and tinnitus. During the conversation, Sommerfeldt witnesses her collapse, needing to lie down on a bed in another room. Then he talks to us adults. Sommerfeldt is very clear: she has ME. We just feel emptiness and that we might as well give up. All we see is a bleak future for a child in constant need of care, and what little energy she needs, she takes from her mother, and so she also dreads her own future life.
After returning home, we pulled ourselves together and concluded that we’d handle it, we would be strong. The school said it was important that our daughter attended as much as possible. We therefore pressured her to go to school as often as possible, but overall it was just a few hours a week.
When autumn came, our daughter had been ill for almost two years. Mom remembers one November day: She looked at her daughter and thought: “Now you’ve been in bed for so many days, you just have to go outside!” A teacher at our daughter’s school has ME, and she told us that she has to force herself to go to the mailbox every day. And so mom dressed our daughter in warm clothes and shoes and forced her out into the garden to walk around the house. But she just stood still, looking at her mother, and she said, “Mom, I can’t take it anymore,” and they had to go back inside. Mom cried.
It’s January 2019 and mom is going on a business trip. In practice, this means that she can no longer be with our daughter at all times. We’re now so desperate that we borrow a dog, because we have read that a dog can enhance the quality of life for both young and old. We can’t lie in her bed all day, but a dog can. The dog quickly became our daughter’s best friend. Her energy and zest for life depended on whether we looked after the dog or not.
Suddenly, it became very clear to us that it was something more than nausea, muscle pain and sensitivity to sounds that bothered her. After almost a year of severe illness, she suddenly managed to go to school, sporadically. At this time, it means 11 hours a week. We were so happy, there was light at the end of the tunnel! Finally! At times, we’d hardly been able to get any response from her, we’d thought she might die. The dog gave us new hope! But we knew that a dog couldn’t replace the social benefits of going to school. And for our daughter, lunch break was completely out of the question, it was far too fatiguing. Just talking about school lunch break made her cheeks go red. It later turned out that a rough class environment and difficulties fitting in after so long an absence were central factors.
Because of this, we got to stay at the rehabilitation centre Catosenteret, which specializes in children and adolescents with ME, in the spring of 2019. It felt good to be with positive people, and our daughter made new friends. During the day she was active, and on her best evenings we went shopping. She even managed short sessions of exercises in safe, predictable settings. We now got confirmation that our daughter functioned under certain conditions, but we still did not understand which conditions were decisive.
On her first day of school after the rehabilitation stay, things go wrong. Forty minutes after mom has dropped her off at school, she receives a text message: “Mom, you have to pick me up, I can take no more.” Life collapses again. Mom takes a complete leave of absence from work. Our daughter will not recover without help, and we must find the formula, because we won’t get help from the outside. And so, mom must be at home to care for her. Something has happened anyway. Our daughter has a newfound positivity, and the things that are pleasurable enough, she will make happen. Mom accompanies her to school and tries to keep things positive around her, but our daughter falls right back into old patterns. That means 17 hours a week at school, and that won’t be enough when she starts secondary school.
The hospital, with its well-established support system, has followed us along the way, offering some guidance here and a little knowledge there, but ME is a taboo disease and difficult to grasp. Only we, who are closest to her, get to see the dark side, while the world sees our “healthy” child when she braces up. The most difficult part of this is our story about the girl who collapses on weekdays, but flourishes during long holidays. This has always seemed so strange, but we’ve been told it’s part of the ME diagnosis. But how is it even possible to go water skiing during the holidays and be active for hours a day, but then school starts, and her body collapses again!?
After a summer of rafting, water skiing and swimming with friends, our daughter collapses in the middle of the city. At this point, we have no more to give, and mom herself breaks down. She can no longer cope with all the hardships and finds it difficult to sufficiently support her daughter. We need more help. Later, our daughter told us she was so desperate she considered suicide. Fortunately, we didn’t know it then. Exhausted, mom turns to knitting apathetically for two weeks. Completely run down. She starts fearing it might be the end of her marriage. The situation is desperate. The whole family is collapsing. And nobody on the outside seems to understand the seriousness of the situation.
The hospital referred us to a psychologist. Autumn was filled by hope that seeing a psychologist every other week would “fix” our daughter. But December came, and there was no change. The only thing certain was that we parents were now convinced that we needed to look more into the power of thought. During this time, mom had frequent conversations with another mother she had met during rehabilitation. They agree that 3 years in secondary school like this… No, that thought is unbearable. Is Lightning Process an alternative worth considering after all?
We had no time to lose and borrowed the e-book “Wake me when it’s over” by Live Landmark. On the evening of December 19, 2019, mom started reading aloud to our daughter. We wouldn’t risk her missing a single word of the book. Then we travelled to the mountains and spent the rest of the holiday season skiing. Two days after mom read aloud that you should just get up from bed without checking your body for symptoms, our daughter was standing there in the living room, early in the morning considering it was during the vacation. We looked at her in astonishment. After snowboarding for three whole days, our daughter got worried because she felt so much pain in her legs – but we persuaded her to go downhill skiing instead. Then we continued for another three hours. The next day, mom managed to say it out loud: “What you achieved yesterday shows you’re not ill”.
With this as our starting point, the job of changing focus and finding positive energy in everyday life began. Our daughter started attending school full time again, and we contacted Live to start the qualification process to join the course. We took the course in January, and again we get confirmation that the brain controls more than we are aware of. The course is a revelation. Live puts into words the things we have spent three years figuring out. It’s about positive energy, shift of focus, the power of thought, to be strong facing symptoms, don’t let the symptoms grow, don’t be fooled by the body’s false error signals. At the same time, the course triggers a great deal of grief. An intense grief. Why has no one helped us before?! Why did the Norwegian health care services fail to help us? We’re left with the feeling of having robbed our daughter of some very important years of her life.
The course benefited mom as well. She’s been on the brink these recent years, and the knowledge from the course made her stronger in herself, but also in relation to her daughter. On the plane home from the course, our daughter suddenly collapsed and began shaking and showcasing the same old symptoms. But this time mom managed to guide her out of it.
The next few months turned out to be a cake walk, maybe a little extra so thanks to COVID-19 and home-schooling. Prior to the course, Live talked a lot about the social school environment and the importance of it being safe. Even then we realized she’d better change to another class, but then COVID-19 happened. And spring has been absolutely fantastic. Our daughter has spent her days sewing, participating in various activities, being with friends and simply being normal and healthy. But after school started this fall, she was suddenly doing a bit worse again, and we needed a new conversation with Live about social relationships. The following week she had an anxiety attack at school, and there was no longer any doubt – she had to change classes. In retrospect, going to school has worked out just fine, though. She manages to concentrate, she achieves great results and takes pleasure from learning. ME is a closed chapter in her life. Life is wonderful, and the intoxication of happiness feels so overwhelming that we have to pinch our arm every day!