What is ME? A spiral down into unwellness

My perception of the condition we refer to as ME is that there are various causes for what is then given one diagnosis. It is a process, a spiral down into unwellness from various beginning events, which is ultimately diagnosed as ME.

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Rosi Lovdal

It took a physical and emotional shock to undo my system, an accident where I thought I had caused the death of a child. The fact that the child was unharmed was withheld from me for two days, allowing the emotional shock to fester deep into my nervous system. I was “beside myself” with grief and confusion. It is my personal belief that this is when my downward spiral began.

I had to have surgery as a result of the accident. My system has always been sensitive to medications and the few hours of general anaesthetic also took its toll. After that I simply could not recover and spiraled down down down into the state of disability that was eventually diagnosed as ME. I believe now that it was the shock to my nervous system, both physically and emotionally, that began my downward spiral into ME. A burden of circumstances that became intolerable to my system.

I had to have surgery as a result of the accident. My system has always been sensitive to medications and the few hours of general anaesthetic also took its toll. After that I simply could not recover and spiraled down down down into the state of disability that was eventually diagnosed as ME. I believe now that it was the shock to my nervous system, both physically and emotionally, that began my downward spiral into ME. A burden of circumstances that became intolerable to my system.

A new existence

Due to my recovery from the surgery and the increasing uncertainty of my condition, we had to make the sad decision to cancel our long planned trip to Africa. My husband had taken a sabbatical to do the year long trip so it was a difficult but undeniable decision to cancel our plans. This was the sad beginning of my new life of cancelled plans. I became more and more exhausted, less and less able to make even small plans because I never knew if I would actually be able to do what I had planned. Eventually the only plan I could make was one trip a day down the stairs. Aside from the endless appointments with various medical doctors and tests, I stopped planning.

I became more and more exhausted, less and less able to make even small plans

I became more and more isolated.  Noise became intolerable.  If my husband clinked a spoon against a glass three rooms away that simple sharp noise shot through me like a physical jolt, literally made my entire body jump. We had special sound insulation put in the entrance to our bedroom, which had now become my bedroom, where I lived with the door closed. Any bright light was now also intolerable. My isolation increased.  Any sense of questioning into what was happening to me was now absorbed by a sense of hopeless bewilderment and exhausted resignation.

A diagnosis

After a year of increasing symptoms and decreasing life force, I had now been given the clear diagnosis of ME by my doctor.  He put a three page list of symptoms in my hand, where he had checked nearly all of them.  He advised me that this was a chronic condition that I would have for the rest of my life and that the best I could do was to learn to live with it. With ME your life will not be the same, he advised, but you can at least learn how to live with it.  We cannot predict to what extent or if you will be able to recover energy so it’s best to plan to do a minimum.  At least for these next years.  How do you take in such news??  What causes it?  Isn’t there something we can do to help me??  There’s nothing else you can tell me???

He advised me that this was a chronic condition that I would have for the rest of my life

Wrapped up with a shawl around my neck, half covering my head, sun glasses against the light and ear plugs against the sound, I made it to an ME meeting where I saw others just like me, many worse, even more bundled up against their own senses. We were encouraged, given support in learning how to live with this condition. It was helpful, people were grateful, and encouraged that they could at least level out and not get even worse with their symptoms. They shared their experiences, about how they tackled “my ME”. We’ll see you at another meeting, they said.

Am I now going to spend these last precious years  – the rest of my life? – confined to my bedroom?

I came home and closed my bedroom door and cried for three days. I was devastated by the reality of this.  How could this be true? How could this be happening to me? There must be something someone can tell me that will help me to get better. This is not how my life is supposed to be! From a very early age I have always been so engaged, so active.  I have always made a contribution. I have raised 7 children. I have been an entrepreneur and business woman responsible for 100 employees, I am a pilot who flew my children to school from one island to another.  I have been a sailor, a skier, a tennis player. And I am now going to spend these last precious years  – the rest of my life??? – confined to my bedroom, needing help to get down the stairs, not able to drive a car??? Because of a condition that I nor anyone else can understand? The pervasive feeling that settled deep into my fog was a sense of utter helplessness and an even deeper sense of profound sadness.

Years in the fog

Through this spiraling down process my husband had become very still, going out on his own very little, always being here for me, giving me a safe place with his kind strength and quiet stability. He said, “I know you and I know you will find your way.” But what could that mean?  How could I find my way?

The months slid by, my fog deepened. I tried again and again to do some training, again and again rewarded with an even deeper exhaustion. Now nearly three years of my life had slipped into the fog that had closed in around me. 2002 gone. 2003 slipped away. And 2004, now gone as well.  2005. Soon I would turn 70.

A long unread book

I had a book under my bedside table called “Molecules of Emotion” by a woman micro biologist named Candace Pert. It had been there for a long time, unread, forgotten. I pulled it out and managed to read through it. It made an opening in the fog of my thoughts. Pert empowers us to understand ourselves, our feelings, and the connection between our minds and our bodies in her revolutionary treatise. Could I intervene myself into my own condition? Rather than expecting a doctor to find a solution for me? I was unclear about how to use this information, this concept, how to turn this theory into something I could actually do. Abstraction was beyond me. I needed clear practical solutions, something I could grasp, something I could actually use, with practical effect.

Could I intervene myself into my own condition?

I had heard of TFT or Tapping. Tapping is a combination of ancient chinese acupressure and modern psychology that works to physically alter your brain and energy system.  I had used acupuncture therapy with good results earlier in my life.  Why not?? I thought.  I can at least try. 

My husband drove me to the appointment and waited for me while I had my meeting with Mats Uldal, who had worked with Roger Callahan, the founder of the method, in California.

With the least stress I reverted back into the fog of energy loss

Afterwards I could feel a shift. As if there were more space around me.  Light was less intense. I could think better. I continued with the TFT sessions and I did feel relief.  But with the least stress I reverted back into the fog of energy loss. Into all the ME symptoms. So my main discovery was, “I can make an intervention into this condition myself.” But how do I continue, deeper, more thorough, so it’s complete, lasting?

Lightning Process

It was actually a functional medicine doctor who first told me about the Lightning Process. I grabbed at the chance. I managed to get into the next three day training session. My husband accompanied me and sat through the training as well.  Step by small step the process was given to the participants. To try ourselves, out loud. To repeat as often as necessary. To observe my own thought patterns and to consciously deliberately turn them around, with new thought patterns. To create new pathways in my brain and create the patterns that would perforce create the chemicals that would bring me again to a state of wellness. This had moved out of the realm of concept and was an actual practical technique, something I could do for myself, then and there.

When you are in such a deep fog as I was there is something magical about it when you feel the fog lifting. Learning to believe it is a part of the process. Repeating it with increasing confidence. One step at a time I moved forward, repeating what I had learned. It does feel like lightning, that it happens so suddenly, after being down for so long. Actually it is systematic small step by small step, one after another, of a deep training that takes place over the three days and on into your life.

On the final day of the training I walked up the biggest hill in sight. I felt like a bird, soaring into the sunlit air. A new window to my world had opened up.

A methodical process

It is a long slow spiral down into unwellness and it is a methodical step by step process back up into wellness. I practiced. I persisted. I got the support I needed as I continued forward. And then, just as my illness had suddenly begun it was suddenly over. It wasn’t suddenly over, of course. It was suddenly turned around during the Lightning Process training and then steadily slowly forward. But it feels like suddenly you are free again! The day comes when you are fully back to yourself and you no longer think about illness or recovery at all.

About three months after doing the training I announced to my husband that I was leaving on a trip for a month. I knew that my final step towards freedom was to release my husband from my dependence on him.  Yes, I was scared. Really scared to go out there on my own. I knew I had to do it, for both of us to be free.

Nigeria

Six months after the training I accepted a project in Nigeria, as project leader initiating a network for women entrepreneurs, exciting and demanding work.  Just being in Nigeria has its challenges, both physical and mental. When I asked my doctor to sign some travel documents for me to go to Africa he never asked me how it was possible for me to do such travel when I had been diagnosed with ME. He never asked and I never asked him either. I just moved on, into my newly expanded life.

On my 70th birthday, in the Spring of 2006, I was laughing and crying at the same time, stunned with joy, as 150 brilliant beautiful Nigerian women stood and honored me with the most moving birthday song I have ever heard. They had rehearsed it and sang so gloriously to me of love and respect. I was fully living “the rest of my life.” 

I travelled back and forth to Nigeria, innumerable times, for the next six years and did some of the most gratifying work of my life.

Describing LP

When I am asked, what is the Lightning Process? I say that it is a training. I do not say what the training is in any detail because I know that will minimize and obscure the process and actually reduce that person’s chances of succeeding. It is a training. It takes place, step by step, over three days. And continuing on. And those steps have to be walked, one by one, in order to absorb the training, in order to activate the neuro plasticity that I read about in Candace Pert’s book.

Those steps have to be walked, one by one, in order to absorb the training

Only once I made an exception, and attempted to describe the Lightning Process without actually describing the technique. A good friend called me and said that her granddaughter was diagnosed with ME and would I please please please talk to the mother of the ill teenager. I agreed, on the condition that we speak face to face and that there be no time constraints. We met at a small coffee shop and found our place in a quiet corner. As I began to slowly explain, I could see this woman’s face, register her reactions and tailor my information to what I thought she was able to take in. We sat for almost two hours, quietly, calmly, talking it through. I listened as she struggled to tell her story. Tears were running down her face telling me the story of her beautiful normal young daughter becoming incapacitated. An hour later tears were glistening in her eyes because she saw hope in the information I had given her. I didn’t hear from her after that. Until one year later. Now it was me in tears as I read her mail to me, thanking me with all her heart, that I as a stranger had taken the time to be with her and reach her heart. She and her daughter took the LP training. Her daughter was now off at summer sports camp, a happy normal successful teenager. She said she would remember me for the rest of her life. And I her.

It is in the same vein that I write this story. I do not have a personal need to tell my story. I am however happily willing to tell my story if there is the possibility that listening to my story will help someone else discover what may be possible for them or their loved one.

I am now 81. Active. Engaged. And forever grateful, beyond words, for the process that supported me to reclaim my life, my style of life, active and free, curious and courageous.

AdultsFemaleME/CFSLightning process

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