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I recovered to 80% and relapsed and it's all logical and I'm gonna recover again.

I'm an engineer and have approached this black box of a disease as such: entertain working theories but only act upon results.

I was bed bound and brainfogged in 2008 and 2009. I took my recovery in my own hands when the doctor said: "There's so much wrong with you, I don't know where to start!"
My reaction: "Then it probably doesn't matter where I start either. I'll start with digestion then."
Thanks to studies and trials I worked my way through digestion; hormones; adrenals; nervous system; sleep and I slowly recovered to a housebound level. In May 2014 I healed miraculously overnight and got to 80% health at x-mas 2014.

My working theory:
  1. everybody has their own personal bodily signature that facilitates the onset of their version of ME
  2. in every PWME the Autonomic Nervous System is perpetually scrambled.
My solutions:
  1. identify personal factors and address them. (In my case: Progesteron deficiency + insuline hyper sensitive + always in Fight or Flight + never slept through the night + MAO A kaput + hyperalert personality + hear and smell everything + a virus/bacterie in Spring 2008 + shot adrenals)
  2. take away all (personal) stressors that bug the ANS + teach it to react different to impulses.
That last one is not so easy but the ANS and the brain are plastic and fluid, you can teach it new ways.
For me, I used Gupta Amygdala retraining; EMDR and am looking into dr. Goldstein methodes of influencing brain paths chemically. You could also try meditation or mindfullness. I also did some CBT and even hypnosis to try and learn new thought habits in order to influence neuro transmitters.
The goal is to influence the physiology of things, not the psychology of things. Psychology has nothing to do with the cause of the illness. ME is not a mind-thing, it's a body-thing.

I read a lot about the bodily stress responses, especially dr. Selye who coined the term "stress" (when he actually meant "strain"). The body has some powerful systems to deploy when survival is at stake. The stress response is one. The insuline response is another. These are The Big Guns and should be avoided because they alter the normal modus of the body and have a lot of collateral damage. The hormonal system and hormones as neural transmitters is another system that interests me.

I'm avoiding all the things that my body perceives as stressors. They can be as ridiculous as garlic, in-laws or warm showers. I'm not arguing with my body, if it's bugged by it I avoid it. I use my high-sensitivity to check whether something is ok or not. This gets me results.

I'm addressing all the non-ME things that burden my body such as hormone shortages, a diet that provides level blood sugars and methylation-problems. These are not the cause of ME but I cannot heal if I don't fix these. For these things I had tests done and am under doctor's supervision.

That leaves the mysterious last piece of the puzzle: the ME-thing. Is it an intracellular parasite gnawing at my nerves or mitochondria? Is it some sort of unhealthy ANS-modus that my body has gone into and needs to snap out of? Is it a permanent eroding of the intracell signalling devices?
I don't know. It's the piece that prevents me from going from 80% to 100% health.
(My instinct says there's an invader continually bugging my body. But my body can co-exist with it, if there are no additional stressors in my life.)

In Spring 2015 my precious 80% health took a nosedive when two normal stress life events happened. 6 months later both issues are resolved and I'm severely housebound again but I didn't fall back to bed bound and 10-15% health level where I was in 2008/2009.

I hope to regain some health now that the life events are dealt with.
I have experienced what happens when my system gets put under these kinds of stress again: my liver stops producing bile (this means a major waste removal pathway is blocked); my body usurps all kinds of minerals fast and from the lack of it I get depressed and even suicidal (PMS-from-hell and dopamine shortage caused because Zink was gone); I cannot focus; I cannot relax (and therefor not digest my food properly).

I'm reading posts by James7a who recovered 100% and video's by Neuffer who also recovered 100% and they both practise according to my working theory and have their own version of it which makes their cases and experiences logical. I love logical. If things make sense.
So I am going full throttle at it again too. Full throttle very slow pace, as a PWME should ;)

just a little note to myself:
Next time a life stress events occurs such as moving house or death of a parent I will do the following regardless of where I am health wise:
- clear my calendar for the next six months
- take all the minerals, take all the amino acids, take all the vitamins
- drink salty water by the gallon
- get massages or yawn and stretch like pets do and as often as pets do to help the lymph system to remove waste
- eat gelatine by the bucket (cook chicken drumsticks in cocosfat and water, let cool). Gelatine is easily digestible, contains lots of amino acids and travels first through the lymph system instead of the liver
- make chickensoup but also eat other things. Rotate.

Comments

I like your mind-body approach. There is shying away from the idea that some things are psychological only, when there is so much more going on.
 
Agree with @GracieJ ... autonomic dysfunction is definitely present in my case, anyway. I think I have given myself 'permission' to shut out things that stress me, to some extent, and this has been amazingly liberating.

Mmm, I didn't know that about gelatine, though I have a book called Nourishing Traditions that has a lot of those types of old-fashioned recipes. :)

Glad you recovered to some extent, and glad you have a plan for climbing back up! :)
 
Great post, Woolpippi! Very inspiring and informative...you mentioned some things I never heard of that I will be looking into. I will pray you get to 100%. Intentionally and purposefully adopting a good attitude always helps everything, even if it's not a cure for what ails ya.
 

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