Author: Nina og Svein Erik Høst
During the first years that she was ill, she tried to fight back and live as normally as possible; in other words, try to forget that she was sick. But she gradually lost her strength and energy and was forced to work only 50 % for some time before she eventually had to take a full 100 % sick leave. During this process of loosing energy, she went through a number of medical examinations and also took part in a pilot study at the University Hospital of Oslo.
Life was reduced to sitting in a chair watching TV or reading a book and with an extreme focus on saving energy.
After a year at home, she tried to start working 50 % again, but it proved not to be possible. She was first diagnosed with chronic fatigue and later on with CFS/ME. Life was reduced to sitting in a chair watching TV or reading a book and with an extreme focus on saving energy.
The plug out of the bath tub
At the end of August 2006, the situation got dramatically worse, and one day in September it was just like someone pulled the plug out of the bath tub. All her energy suddenly disappeared, and she had to go straight to bed. And in bed she stayed until the end of May 2008 in a dark room, fully dependant on home care 3 to 4 times a day.
And in bed she stayed until the end of May 2008 in a dark room, fully dependant on home care 3 to 4 times a day.
She could not be alone at night, so I always had to get someone to stay with her over night when I had to go away. The bedroom windows had to be covered as she could not tolerate light. Nor could she tolerate sounds; she had to put on ear protection when the neighbour cut the grass, or if the children jumped on the trampoline. I, her husband, had to watch TV wearing headphones so that I would not make any noise. She had no strength and no energy at all; to read a book or listen to music was not possible. She managed to eat sandwiches by herself, but could not handle knife and fork so I had to feed her dinner with a spoon. She could bear no activity; no reading, no watching TV, no listening to music. She could not talk with me or with other people more than a couple of minutes at a time. This is a condition that best can be descibed as beeing a “living dead”.
This is a condition that best can be descibed as beeing a “living dead”.
At one point she was placed in a nursing home for 3 months, partly with the hope that it would help her and partly because I myself was getting very tired. Despite the fact that the nursing home lined up and did everything one can reasonably expect, it was of no help to Nina. On the contrary, after a short period of optimism, she got even weaker and terribly thin.
Feel that I have raised from the dead!
In summer 2008, shortly after she recovered from ME, Nina wrote down her story. About this period she wrote:
“The first few years I functioned reasonably well, but finally had to quit my job. I got gradually worse until two years ago when I got completely bedridden. I had help from home nurses 4 times a day and blending for the windows. I could not bear to speak to someone in more then a few minutes and was fed. My husband got to know of LP, but we dismissed it because we thought I was too sick. After a while, however, we learned that it could be possible to have someone come home to us, and that LP had worked for people as sick as me. Even if I was terribly scared, I did it and I have never regretted! Feel that I have raised from the dead”
The only possibility
During the two years Nina was bedridden, I got many tips from friends about the Lightening Process, a three-day training programme for people with ME. But the offer was only available in London, and Nina was much too sick to travel anywhere. I started, however, to learn more about LP by reading and talking to people, and over time informed Nina that LP has helped many people with ME, and that it is an intense, concentrated course which requires strong commitment and effort from the participant. She was interested, and when the opportunity came to have the training arranged at home, she decided to go for it. But, as she says, she was scared. Afraid of the unknown, afraid of the strain and stress and, not least, afraid it would not work. In many ways we regarded LP as the only possibility to find a way out of ME because even if Nina had been met with both interest and care from the health system, she had not at any point during the 9 years she had been sick been offered anything that could bring hope for a better life.
She was scared. Afraid of the unknown, afraid of the strain and stress and not least, afraid it would not work.
At the end of May 2008, we had two LP trainers come to our home. I also attended the course which progressed as follows, according to Nina’s description from 2008:
“On the first day of the training the black curtains were removed from the windows, and I was lifted over to a normal bed. My husband took over the hospital bed until it was collected after a few days. I could manage someone talking to me for 4 hours. Unbelievable. I, who could not tolerate to have someone in the bedroom for more than a few minutes. The second day of training I was helped out in the living room where I sat/lay on the sofa while the two trainers talked and talked. I was able to talk with them and to have lunch together with them. I was also helped to walk downstairs and out into the garden. In the afternoon my eldest daughter and her two children came to visit. I have three children and six grandchildren. Later that night I had my hair washed and cut. This was something I had not had the strength to do for two years. The third day I was walking outside the house, I was out on a little trip in the car and I visited my youngest daughter – surprise visit!”
Bicycling in China
The first training day took place in the bedroom while Nina was laying in bed. The trainers were more or less lecturing about the main elements in the Lightening Process. The second day she was helped out of bed and into the living room where she started practicing the process. While she was doing so, we removed everything from the bedroom that could remind her of ME; the black curtains, comforting drawings from the grand children, etc. On day three, the LP process training continued.
We removed everything from the bedroom that could remind her of ME
When I ask her today about what she remembers the best from these three days, she still answers “horror”. But when I ask her what made her carry through the training programme in spite of fear and horror, what was it that gave her hope and strenght and faith in succeeding, she answers “visualization”. A key element in the process is to visualize a desired condition or situation where one is not sick with ME. Nina selected an experience from the mid 90’s where we were on a trip in south-western China. We had rented bicycles at the hotel and made a trip out into the countryside where we were surprised by a terrible rain shower. We had no rain-gear, and there was no shelter around so the only thing to do was to get back to the hotel as quickly as possible. And the fastest was Nina; I did not manage to follow her; I could only see her back much like a shadow somewhere down the road in front of me. That was the strength and energy she wanted back! This picture was so strong that she used it actively for many years after the course, and I can still hear from time to time: “Svein, do you remember when we went bicycling in China?!…
“This is impossible!”
But then the course was over; on day 4 we were all alone without the two coaches who, in addition to conducting the training programme, had pumped hope and faith and joy of living over us. In the morning Nina got out of bed and started to walk down the stairs to the ground floor, but stopped after 4 steps, started to cry and said, “Svein, this is impossible, I can’t do it”. At that moment it was absolutely essential that I was there, and that I had observed the training and was familiar with the concept. By using the LP, willpower and plenty of time she came down the stairs and the journey back to a normal life had really started.
She was 9 years older than she was when she experienced the first symptoms.
We quickly learned that, although the ME was gone, laying two years in bed takes its toll. In addition she had been sick for many years before she got bedridden, and of course she was 9 years older than she was when she experienced the first symptoms. Hence it has been tough and dedicated work to build up the body again. But the milestones were passed one by one:
A life!
“I have become better unbelieveably fast. Already the first week I could eat dinner at the dinner table, take a shower, read, watch TV, have visitors and go for a visit. In short, I have a life! After two weeks I could have two of my grandchildren staying overnight, and I could read for them. My muscles are growing stronger day by day. After two years in bed they were pretty rotten. I can go hiking in the forest. I have been to our mountain cabin several times. That is a 4 hour drive each way. Next week my husband and I are going on vacation to Italy!”
The trip to Tuscany was 4 months after the LP course. After this, there has only been one way: upwards! Now, 10 years later and at the age of 75, she is still in good shape, and, I would say, in better shape than most woman her age. She is training strength and fitness at a gym three times a week, she loves travelling, to go hiking in summer and skiing in winter and to work in the garden, but most of all she loves to gather the whole family around the dinner table. She starts three days in advance to prepare a three course dinner, decorates the table beautifully with flowers and candles and then seat the 15 people (age 6-75 years) around a table which can seat 14 people at the most….. It is just as enjoyable, lively and chaotic every time!