From a nursing patient to a mountain climber: “For four years I lay completely helpless and motionless in bed”

My despair was overwhelming. The doctors gave me no hope of being able to recover from ME. On the contrary I remember a specialist saying: “You must lie down and rest, maybe for the rest of your life.”

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Jan Even Raastad

Prehistory

I had a great life! I was 33 years old, I really enjoyed my job as a civil engineer in the construction industry and I had a lovely girlfriend whom I was very much in love with. In my spare time I loved being with my girlfriend, hanging out with my friends, and I spent a lot of time rock climbing, touring in the mountains and skiing. I had been on countless summits in Norway, been on many expeditions to high mountains abroad and I had a long list of plans. I felt strong, and my big goal was to reach the summit of Mount Everest with my friend. Ironically, we used to abbreviate it “ME”.

Although I was very fit, I had some health challenges. When I was 19, I was diagnosed with ulcerative colitis (1988). In addition I had asthma and allergies. At that time, my ulcerative colitis was treated with Sulfasalazine which had a good effect on me and I noticed little of the disease for many years. Until around the year 2000 I functioned very well despite these diagnoses, but then I increasingly got more severe respiratory infections which at lasted a long time and resulted in many pneumonias which required antibiotic treatment.

The medicines that kept ulcerative colitis at bay also stopped working, and new medicines were tried out, which unfortunately did not work well. From the year 2000 I have noted in my diary that the gastrointestinal specialist at the hospital put me on a regime with Prednisone (cortisone). Fortunately, this worked really well on the inflammation in my colon, and I had to use this medicine more and more.

But in the autumn of 2002 I experienced another significant burst of inflammatory activity in my colon, in addition to painful sores in my mouth. I once again received a high dose of Prednisone. In December 2002, the doctor also prescribed the drug Imurel/ Azathioprine (an immunosuppressive medication). 

The downturn

Then everything changed suddenly and brutally: In January 2003, I got a viral infection and had to be hospitalized. I lay in the hospital for ten days while the disease ravaged my body violently. I had high infection parameters in my blood, high fever, severe muscle pain, significant problems breathing and large sores in my mouth and throat that made it almost impossible to eat. It was unreal to experience how my strong body suddenly became so weak that I could barely walk the few metres from my bed to the bathroom and back.

After my discharge from the hospital I was on sick leave for a week. When the week was over I still felt terribly ill and weak but I conscientiously went to work. There was so much to catch up on and so much I felt responsible to do at my workplace. I persevered for three hours before I had to go home and go to bed. I was completely exhausted. But since the doctor had said that a week’s sick leave was sufficient I trusted that to be the case and hence pushed myself to work the following day as well, but I fainted at the desk and the boss sent me home in a taxi. I was very pale and cold sweated and I had a heart rate at rest of over 100. This was my last day at work for many years.

In the spring (2003) I was back in the hospital again. There were many flares of the virus and the symptoms of the disease persisted, whilst I gradually became more exhausted and emaciated and of course worried, anxious and frustrated. On a “good day” I could go for a short walk, or have a short visit from my girlfriend or a friend, but any activity usually made me sicker and weaker for days afterwards.

The intestinal disease also flared up very significantly and in June the specialist prescribed 60 mg Prednisone in addition to Imurel/Azathioprine and strong painkillers. I took 60 mg of Prednisone daily for over a month, lost a lot of muscle and weight and became incredibly fatigued, and I felt like my whole body was shaking with a strong feeling of illness. 

For the next six months I needed help with almost everything in my daily life. The days were mostly a struggle just to be able to move between my bed and the dining table (where I was served food by my mother). There was rarely any energy for anything more, I mostly had to lie down.

In January 2004, I was transferred to Aker Hospital. The endocrinologist at the hormone lab diagnosed me with “steroid-induced adrenal insufficiency” (Addison’s disease) as a result of high doses of Prednisone over a long period of time. 

My colon was examined by colonoscopy, and it was then in remission. However, both the endocrinologist and the gastrointestinal specialist said that none of these diseases could explain why I was so severely fatigued and had so many significant symptoms. 

I was therefore examined by a psychiatrist but there was no psychological diagnosis. I was then examined by a cardiologist, pulmonologist, neurologist, and eventually the diagnosis was clear: ME.

The endocrinologist said that I had to take Prednisone for the rest of my life, because my adrenal glands would not begin to work again but with the right dose I should be able to function quite well. 

Then again the ulcerative colitis flared up fiercely, and the specialist prescribed Remicade (an immunosuppressive drug). I eventually found that it helped my general condition slightly, but unfortunately it did not dampen the inflammation in my colon. I got more and more bloody diarrhoea, 8-12 times a day, and experienced that life literally ran out of me. My life was on an axis between the hospital bed and the toilet. I had severe pain in my stomach, became increasingly anemic and received intravenous administration with iron supplements. 

In the spring of 2004 I felt that I was in danger of dying. I was very fragile and was hospitalized for several weeks at Aker Hospital where I spent the whole day in bed because I had no strength for anything else, the fever and the feeling of illness ravaged, and I urged the doctor to have the entire colon surgically removed since I felt that this was my main problem. But the doctor said he did not dare to perform such an extensive surgery because he feared I would not survive it due to my extreme fatigue.

But in December 2004, my gut was re-inspected from the inside, and it looked awful. There was no way out – I had to have surgery. Either I would die from a rupture of the colon or hopefully survive the operation. I had surgery just before Christmas. When I woke up after the operation I felt better than in a long time. It felt as if all infectious activity had been cleared out of the body. The fever I had lived with for so long had evaporated and everything was calmer inside. I was exhausted, anemic and in a lot of pain but I was really optimistic.

In February 2005, with extensive help from my mother, I travelled to Gran Canaria to recover in a nice and warm environment. I was weak, but I gradually got into a better shape. I stayed there for three months, I went for walks and I thought that from now on there was only progress. I experienced the ostomy bag on my stomach as unproblematic, and was convinced that that the surgery had saved my life.

The summer at home in Norway however went without further progress, and I had very limited physical and cognitive resources. Then, in the autumn of 2005 my condition suddenly deteriorated. I think it was a cold that triggered it. Once again there was a series of examinations by the specialists at Aker Hospital. Again they concluded with an ME diagnosis, and I was also referred to Dr. Gunnar Aasen who in November 2005 made a clear diagnosis of ME. On my own initiative I consulted Dr. Paul Kavli who came to the same conclusion. 

My despair was overwhelming. The health service gave no hope of being able to get well from ME. On the contrary, I remember a specialist saying, “You will have to just lie down and rest, maybe for the rest of your life.” Another specialist said that “the prognosis is very poor, but you may hope for some improvement over a long period of time”. I also received a brochure and information from the ME association and I found the information there terribly frightening. It felt like absolutely all hope was gone and that I just had to adjust to a fact that this would be my life for the future.

My despair was overwhelming. The health service gave no hope of being able to get well from ME

The relationship with my girlfriend ended, and hiking and climbing became just distant and unattainable memories. I was bedridden all the time and barely had the strength to read or watch TV. I just existed, trying to endure the pain, the headaches, the fatigue, the brain fog, the dizziness, the hot flashes, the sweating, the palpitations and all the other symptoms that ravaged my body. 

My mother now arranged everything for me and had contact with the ME association where we got a lot of advice on how things had to be arranged. She also came into contact with doctor, professor and ME expert Ola Didrik Saugstad in 2006.

One morning in the winter of 2006 I laboriously tried to get out of bed to go to the toilet but I was simply unable to move my body. I had become too weak and I felt completely drained of power and energy. It was unreal and terribly scary. From then onwards I was 100% bedridden. In the following months I gradually became weaker and weaker. Soon I could not turn around in bed, I could not eat or drink and had to be tube fed, and I could barely whisper a few words. I was also extremely sensitive to light, sound and touch. I needed it to be completely dark and completely quiet around me.

In the winter of 2007, when I had been lying in the dark for around a year, I noticed increasing difficulty breathing. I was unable to cough up the mucus from my airways and felt like I was drowning. It felt like I was about to die and with great effort I managed to whisper the word “hospital” to my mother.

My GP who always followed me very closely and conscientiously, gave me large doses of morphine so that I could be taken to hospital by ambulance for examinations. I stayed in the hospital for two weeks. The specialists did a lot of tests and they found that I had a sinusitis which they treated with antibiotics. This was the cause of all my mucus. Other than that, they found nothing they could treat. I experienced my stay in the hospital as too much of a strain and I was further weakened by being there. The specialists that examined me told my mother that I was so weak that I had a maximum of two weeks left to live.

For the next four years I lay in bed completely helpless and motionless. With tube feeding. In total darkness. My room was completely dark and soundproof and in addition I had a mask over my eyes and hearing protection. I could not stand the slightest light or sound, just minimal touch and I could not speak, swallow food or move my body. I barely managed to move a finger. Food and drink came in through the tube, and what came out went to the ostomy bag on my stomach.

Just having someone inside my room was extremely demanding. I was hypersensitive to all impulses. Even the slightest flash of light caused an extreme pain and then I fainted. I therefore did not see anyone’s face in four years.

The pain raged through my body and head and the flu symptoms were horrible. It felt like my body’s emergency response constantly was on high alert and that the entire defense system in my body was very activated. Every breath was a struggle, I just breathed at the very top of my lungs because it was too strenuous for me to fill my lungs up. Therefore I felt like I was always short of oxygen, like I was drowning. In periods I had to get oxygen supply. I experienced my existence as utterly marginal during these years, but I was completely aware of my own situation. 

I experienced my existence as utterly marginal during these years

I had a 24/7 care by my mother and a skilled full-time nurse and a part-time assistant nurse. They were in my room five times a day to do only the most necessary care. In addition I had an alarm button I could use if I needed help. Often I did not have the physical strength required even to press this button.

I often needed to communicate something to my carers. But the only way I could communicate was with minimal finger movements. The nurses could whisper a question and if I moved my thumb it was a “yes”. If I moved my index finger it was a “no”. And when I moved my middle finger it meant “I need something.” Then the nurses had to use their imagination and ask yes-no questions to find out what I wanted.

My carers wrote in the diary that I had “a good day” if I had enough energy to tighten my lips when they put on lip balm.

I remember for example that if my eye itched it was completely impossible for me to move my arm and scratch. I also had a watch designed for blind people placed just below the index finger of my right hand. You press a button and a voice tells you the time. Only on rare occasions did I have just enough power to press the button and hear the date and time. 

The only option was to lay still and endure the suffering. Month after month, year after year.

Even actively thinking about something took up too many resources. Then I could quickly faint from overexertion and consequently experience the fear of death from not being able to breathe. The only option was to lay still and endure the suffering. Month after month, year after year. The feeling of illness ravaged my body so violently and the pain was so great that I never felt relaxed or at rest. I had to be medicated to get some sleep. All I eventually wanted was to escape from all the suffering and this life which was completely meaningless. I also had a terribly bad conscience for my mother whom I knew sacrificed all of her own life to help me. 

If I could have committed suicide in any way I would have done it. I know that. Life was too unbearable. But fortunately that was impossible to perform. Today I am very happy about that!

Treatment

Obviously countless treatments were tried out. Doctor and professor Ola Didrik Saugstad visited me many times from 2006 to 2009, and my mother received lots of advice. I was given Prednisone, intravenous saline water, B12 injections, strong painkillers and sleeping pills, as well as muscle relaxants and antispasm medicines and more, but nothing improved my condition. With the help of Professor Saugstad the Belgian doctor and Professor Kenny DeMeirleir became heavily involved in the treatment of me from 2008 and he saw me regularly for over two years. He took many blood samples and tested out many (expensive) treatments: He prescribed many and long-lasting antibiotic cures, anti-fungal drugs, antiviral drugs, “Nexavir”, growth hormones, glucocorticoids, insulin,thyroid hormones, anti-inflammatory drugs, probiotics and countless supplements (and more). The list is very long. Immunosuppressive therapy was also tried out. 

The side effects were often significant so I was given medication to mitigate the side effects as well. However, despite everything we tried out during these years my condition did not improve and I remained just extremely ill and weak.

It was obviously a huge burden to be a relative to me. As my mother said, “Every day when I went into the darkness to see you I did not know whether I would find you dead or alive.” It must have been a tremendous pressure, and very despairing when nothing helps. Luckily I had a wonderful GP who was on home visits several times a month and he was an incredible support for both my mother and me. I do not think I would have been alive today if my mother had not spent all her time and resources helping me.

The upturn

Eventually all medical options had been explored and the Belgian professor gave up. There were no more treatments or drugs to try out. Via acquaintances my mother was one day recommended to contact an “energy therapist” who had helped others with ME. He came and visited me many times and sat quietly in my completely dark room. Without saying anything or touching me. I had a mask and hearing protection on and just sensed that he was there.

I do not know exactly what he did, but I know that he also took me off many of the medications and supplements I was on, and over the next few months I gradually got somewhat better. I got some more energy and was able to move my arms and I became a little less sensitive which meant that I eventually tolerated a dim light and could even read a little. I had not seen a face in almost four years, so it was incredibly emotional to finally be able to see my mother and the nurses again after all the years in total darkness. I could also eventually hear some news on the radio, and on a “good day” watch some TV. Not least, I could use my brain more actively to think and dream. But I was still completely stuck to the bed. I had a very strong feeling of illness, I was far too weak to eat and only able to whisper a few words at a time. Having friends visiting was too exhausting.

The revolution

Another year passed. One day my mother came in and asked if I could read the chapter about the Lightning Process in Live Landmark’s book. I read it and I made up my mind immediately. “I want this!” I had already tried everything imaginable and nothing got me well, so I had the attitude that there was everything to win and nothing to lose. I was very motivated to get well and without knowing much more about the LP I just said “yes!”.

In the late autumn of 2010 Live Landmark came to my home where I was in bed with tube feeding. I do not remember what I expected to happen on the Lightning Process course, but what I experienced exceeded everything I had thought was possible. I learned a lot and already on the first day of the training I experienced a lot more energy. And with more energy the impossible suddenly became possible. Live and a medical student helped me out of bed and up on my feet. With their support I stood up vertically for the first time in many years. This felt completely unreal because I had tried so hard to move so many times on my own but then there was no energy for it. And I got energy to eat food on this first day of the course – it was pizza and a Coke! My first piece of food in almost five years. It was absolutely wonderful to taste something again! I generated a lot more energy and thus finally managed to talk as well. There is a lot to be said when you have not spoken for years.

On day two of the course my progress continued; I gained more insight and more aha-experiences, I generated even more energy, and the highlight of the day was being wheeled outside in a wheelchair. What two days earlier seemed like a completely unattainable dream suddenly came true. It was obviously very tiring but it went fine and I tolerated it well. What an experience. I was completely moved by being outdoors and looking around at everything I love so much. I was so happy and optimistic that I called my best friend whom I had not seen in five years and asked him to come and visit me. He was very curious about who I was after all these years in the dark. But we connected right away. In a way it felt like it was not more than a week since the last time we had met. We chatted and laughed together all evening and it was a wonderful feeling of happiness. 

On the third day of the training I got even more of the LP techniques in place. I ate cake and celebrated the progress which had been truly overwhelming during those three days. It was simply unbelievable – a revolution! In the days that followed my nurses tore down all the sound boards from the walls and the ceiling, I was helped outside in a wheelchair, I managed to get dressed on my own, I talked a lot on the phone with friends and old work colleagues, and I finally got help to shower. My first shower in five years.

Six days after the LP course I pulled out the feeding tube because it was already fine to eat normally. I could have people around me all day and I had visits from family, friends and former work colleagues. It was amazing. I was also very curious about everything that had happened during all these years – there was a lot to catch up on.

In the time that followed I still needed to mostly sit or lie down because my muscles were too weak for me to stand and walk. I needed to build both muscle and endurance since I had the fitness of a 100-year-old. However every day I practiced everything I had learned in the course and I experienced what an enormous influence I have on myself and my body. It was a lot of work but incredibly motivating with all the progress. There were also days when I felt that everything went downhill but I was followed up regularly in an excellent way and Live was available when I needed to ask for something or needed guidance.

Eventually I got a place in a rehabilitation centre and gradually rebuilt my body. I was still mostly sitting in a wheelchair and I still had symptoms and challenges. Things went up and down but the difference was that now I knew how I could influence and make changes. 

Eight months after the LP course, and just two months after I got rid of the wheelchair I went for a five-hour walk in rocky terrain in the mountains of Jotunheimen. It was an incredibly wonderful experience and I tolerated it well. Now the mountain climber in me was finally well on his way back. It took me another year with gradual muscle and endurance training along with balance and coordination exercises before I was able to climb a 2000-metre peak in Jotunheimen again. I have no physical defects after all the years in bed and even my adrenal glands function normally. I am certain that LP saved my life.

Now

Ten years later: My life is very good. I thrive and I am much wiser and have a lot of new experiences. I work with people today because I became so incredibly curious about the LP that I chose to take the education myself. I climb, ski and hike, and of course I make up for many years of lost social life. I climb even harder rock routes now than I was able to before my illness.

The world’s highest mountain is no longer important to me. My friend reached the summit of the real mountain when I was lying in the dark. I choose to think that recovering from my extreme illness and get to where I am today was my “Mount Everest”. It sure was a very demanding journey. I hope my story can help to spread hope by showing that it is clearly possible to recover from very severe ME.


For information: After Jan Even Raastad recovered he became interested in the method that helped him, the Lightning process, and he has worked as an LP instructor.

AdultsMaleVery severe ME/CFSSevere ME/CFSME/CFSLightning process

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