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Looking back, I suppose I could have had symptoms or hints of ME as early as primary school. I had headaches often and was low on energy, but it was in 2006, at the age of 13, that the nightmare really began. At that time, we were an active family living in Kvernaland, Jæren. I lived with my mom Bente, my dad Svein and two younger siblings.
The nightmare begins
I got the flu in February 2006. My fever was gone after a week and a half, but the rest of the flu symptoms persisted. I felt extremely exhausted just sitting up at the dinner table. My parents thought I was being lazy at first and told me to pull myself together. I tried, but I kept feeling worse.
Something wasn’t right
After about a month, my parents started thinking that this must be something more than a simple flu. Something wasn’t right. We would visit a number of doctors and hospitals for examinations in the time that followed, and I was admitted into the children’s ward at Stavanger University Hospital around Easter. I felt that the doctors there saw me as lazy and attention-seeking, as neither somatic or psychological tests gave any answers. The hospital had no help to offer. This was obviously distressing news both to my parents and me.
Simply being in the same room as my family was really challenging
I was fatigued and was experiencing pains in my joints, headaches, stomach aches and lots of cold sweats. While my classmates completed eighth grade, I just kept getting worse. I lost the ability to complete even everyday tasks like walking stairs, using a PC, watching TV, etc. Simply being in the same room as my family was really challenging, as stimuli of any kind exhausted me. This made me more and more isolated. My family always had to consider my needs first when they were in the same house as me.
Was told there was no help or cure
After six months I received the diagnosis ME or chronic fatigue syndrome at the hospital’s general ward. I was met with the customary knowledge – or lack thereof – that the healthcare system offers: I was told there is no help or cure and that it might be years until I was better. Still, I was comforted by finally having a diagnosis and by the idea that all it would take was to go home and rest and I would be all right in a few years. I didn’t think it was possible to get sicker than this from ME, so I figured I could only get better. I was very wrong on that count. Over the next two years I deteriorated.
Exhaustion was not my only symptom. The physiology of my body wasn’t working normally. For instance, I had uneven temperature regulation and periodical fevers. I would wake up in the mornings with a pulse of 180. I had pains in my head, stomach and joints – my fingers and joints would swell up. One of the biggest issues was the way my body reacted to food. Eating gave me serious stomach aches and bouts of vomiting and diarrhoea. This eventually led to weight loss to the point where I needed tube feeding.
All stimuli like poison
I became highly sensitive to both light and sound. I used ear plugs and hearing protection, and found that light and sound – all sensory stimuli – drained me of energy and caused me pain. I ended up in a sound proof room that was completely blacked out. All contact with my younger siblings ceased, and I only saw my parents when they came to help me with practical matters. My nails were rarely trimmed, bodily hygiene was kept to a minimum, my beddings were changed as seldom as possible – all of this in order to shield my body from unnecessary stress. My dad put up a drywall in the hallway so that it would be dark when I was moved across to the bathroom in my wheelchair. It was like the family was leading a constant war on any stimuli that might reach me, as it seemed they were like poison to my body.
It was like the family was leading a constant war on any stimuli that might reach me, as it seemed they were like poison to my body.
My brain also worked slowly, which made it difficult to communicate in our habitual whispers. I could spend up to five days coming up with a single word that expressed what I needed to say. All thinking was stressful, and communication with my parents was reduced to the most basic crucial information.
No one could touch me and my hair remained unwashed and uncut for two years
That’s how I spent the next two years. From the summer of 2006 to August 2008 I lay there as an invalid in a dark room 24 hours a day. My days consisted of coping with severe pain and in getting enough feeding through tubes. No one could touch me, and my hair remained unwashed and uncut for two years. My dad installed a bell I could press when I needed something, such as help to go to the bathroom.
My parents were terrified I would die several times. As it was clearly so draining to me to be in contact with other caregivers, they didn’t involve any homecare services. My mom and dad took care of me around the clock, which meant that they were up many times a night. My dad worked 50% and my mom stayed home fulltime with care benefits from NAV (Norwegian Labour and Welfare Administration). It was obviously enormously challenging for them, but they kept their spirits up and clung to their hopes. They have also said later that it felt good to help me through this time.
A slumber between life and death.
I lost 25 kilograms while I was living like this, and at the lowest I weighed only 28. I found eating exhausting, as if my body reacted negatively to the nutrition. I was close to being put into hospital care many times, but it was decided that I was too sick. It seemed to us that the hospital had nothing to offer, and my weak immune system made it very risky to be exposed to the hospital environment as the mildest infection might kill me. As I got thinner and thinner and my organs began failing, it became a day-to-day evaluation of whether hospitalization was the only solution, but they kept concluding that the risk was too great.
I was trapped in my own body in a condition of constant claustrophobia.
What can I say to adequately describe this experience? It is impossible. I was trapped in my own body in a condition of constant claustrophobia. I sometimes hoped I was just having a bad dream, but I never woke up from it. It was like being tortured. I was in such misery that after a certain point I was simply waiting to finally be allowed to die. My ‘life’s dream’ was reduced to one day maybe being able to watch muted TV with the lighting reduced.
I was completely isolated from the outside world and sensory stimuli. The only exception was the digital clock radio in my room that was wrapped in several layers of black garbage backs to dull the strong light from the digits. I made up several ‘good-luck-times’ for myself, thinking that if I woke up and looked at that radio showing precisely those times, it might bring me luck for the future. Without sensory stimuli there aren’t that many concrete points on which to pin my life story in this period, and I also don’t remember much of it. It was as if death reigned in my room and in our house – or a kind of slumber between life and death.
A switch from death to life
I lay like that until something happened in the summer of 2008. My mom has said that what happened was like a switch from death to life in our home.
Naturally, my parents were constantly searching for solutions and somebody who could understand our situation. Around Christmas 2007, my dad Svein heard about several ME-patients that had been to England and recovered using the mental training program Lightning Process (LP). His first reaction was that it couldn’t be possible to get better using a mental method, but as I kept deteriorating, he thought that this might be the last thing they could try before I died. This started giving my parents a small hope, and luckily this was long before the Internet flowed over with discouraging and frightening stories about LP. Still, as I wasn’t up to travelling to England, it would have to wait.
His first reaction was that it couldn’t be possible to get better using a mental method
During the spring of 2008 it turned out several Norwegians were training to become LP instructors, and that courses would be offered in Norway that fall. Once again there was hope, but at the same time my parents were afraid that LP would only be another setback.
My dad contacted Live Landmark, a newly educated instructor, who put him in touch with another family who could confirm dramatic improvements after LP.
As Live was new to the game, they also involved Barbara Harvey, an experienced instructor from England. She did something I think was important: She was crystal clear with my dad. She told him firmly that no, she didn’t thing I could recover. She knew it. I know that gave him courage, despite all my parents’ doubts. It was really difficult for them to finally decide to give this a try.
Get well, or die trying
July 30th 2008. Three women came to our house. They were LP instructors. Live Landmark, Vibeke Hammer and Barbara Harvey. Live was my main and closest contact, and she taught me LP and walked me through the process.
My parents hadn’t told me who was coming, as they had decided to make the decision on my behalf. They played the parent card and took charge, convinced that I was too weak to know what was best for me. Live was disinfected and had to wear a surgical mask before my parents let her into my room. I thought she was from the hospital and that I would now finally be moved there, but then she whispered: “Hi Hanne, I’m Live. I had ME for over four years. Now I am recovered. Do you want to get well?”
At that point I was really irritated with my dad. I thought he had no idea what he was doing to me, exposing me to LP. This would be the end of me. I had tried everything already, and everything had made me worse. At the same time, I knew he was only doing this to help me, and that he would be disappointed and angry if I didn’t at least try. So, I figured it was better to die trying LP with my honour intact than dying later. This was how I decided to give the LP system a try.
“Hanne. It is over now”
Live felt her way towards my bed, found my little hand and took it in hers. Then she said: “Hanne, I can do whatever I want. I can eat what I want. I can exercise, and I don’t need to rest. If you want to get better now, you have to give me a sign”. I decided then that I wanted to try this, so I made a tiny movement with my fingers. Live took that as a sign and said: “Good, Hanne. It is over now”.
Live said: “Good, Hanne. It is over now”.
I started to trust Live. She kept holding my hand for the next couple of hours. We agreed that I would practice the same things as she did when she recovered.
I would normally get worse when exposed to sounds, light and people, but after lying there wishing to die, I saw this as my only hope. I thought that I could either die right here and now, or I’d die later from just lying here, maybe from heart failure. Because it was so clearly about life or death, I decided to go ‘all in’ and seize this opportunity with everything I had.
The moment I said ‘yes’ to trying, something changed for the whole family. My brother went for a bicycle ride, and my parents were happy and hopeful. A process of hard work followed. The LP instructors were wonderful with me and my family and guided us forwards. I started feeling a change in my body, which increased my optimism. The instructors quickly gave me an explanation of what had been going on that I could understand and believe, and more importantly a description of what I could do to change it. After two hours of the first course-day, I had emerged from this ‘condition of stress’ that my body had been in constantly for two-three years. It was an overwhelming relief, and it confirmed that LP was something to keep working with. The symptoms, fatigue and pains were gone. It felt like my body went from being inside a tornado to being completely quiet and calm. It was the most incredible sensation and I’ll never forget it.
It felt like my body went from being inside a tornado to being completely quiet and calm
Opening the curtains
I was doing so well that I wanted to see my family again. The curtains in my room were drawn and the door to the balcony opened, and when my parents and siblings came into the room, I was sitting in my bed both beaming and sobbing. We embraced, all crying with joy. Feelings I hadn’t been able to share for these past two years could finally be let out. I was unbelievably happy and relieved at feeling better, but at the same time I needed their comfort and support after all that time trapped in my own body. I hadn’t had the chance to share my pain and suffering for almost two years, as I hadn’t had the ability to speak. Now we were finally together again!
I hadn’t had the chance to share my pain and suffering for almost two years
Of course, I was weakened and undernourished after two years of isolation and inactivity. I had to rebuild myself. We started with a hair wash, with me lying on the bathroom floor with my head inside the shower. Mom used dishwashing liquid and scissors to remove vomit, food from the tubes and everything else that had gotten caught in my hair during the past years. It’s not really possible to describe the feeling of that first shower. The day became a celebration in our house, and I got to open presents from birthdays, Christmasses and my Confirmation that I had missed. I’m sure it all seemed to the family like waking up from a nightmare. It took two months of training before I was absolutely well again.
Substituted symptoms for good feelings
What did I learn from Live and LP? I learned that mind and body are connected, and that it is possible through simple mental techniques to stop bodily symptoms. LP has given me the tools to ‘trick’ my brain and substitute symptoms for good feelings, which in turn changes the body’s physiology.
The rest of the family also learned the principles of the LP program, and in that way joined me in the work to change my life. I finished high school and took a Bachelor’s Degree in nursing, without having gone to middle school first. Today I am happily married, I have worked as a nurse for a few years now, and I exercise several times a week. I’m living a totally normal life and I’m indescribably happy about it!
I recovered from ME and I think it’s extremely important that other ME-patients know that THERE IS HOPE! Don’t give up!