To sum it up: my ME, my 80% recovery, my relapse and recovery plan.

Hello, I was trained as an engineer and I’ve 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. In the beginning it was very severe ME. I didn’t know my own name. I had to be spoonfed in the morning before I could even lift my head. I think I was at 10 % health of a normal person. Maybe 5%.

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 we start. I’ll start with digestion then.
Digestion was the only thing that gave us something to go at: my stools where grayish white and floating. I was malnourished. Something wasn’t working: bile. And with that the uptake of nutrients in the duodenum.

Because I had special bouts of insomnia at night (hyper-alert from 3 to 4.30 at night) I could read basic biology books and later on more specialized books and write to-do-notes to myself for the morning.
Thanks to these studies and some trials I devised for myself I managed to identify problem areas and what I should do about them. I worked my way through digestion; hormones; adrenals; nervous system; sleep and mental health. I tackled about one subject per year.

Whenever I started investigating a new subject I didn’t know what I was doing or where it would take me. But each and every year I made remarkable discoveries and, by applying them, progress.
Overall I slowly recovered to a housebound level, without brainfog or pain, just tiredness and no robustness for stress (bodily or mind). And I was being happy. For the first time I lived in the moment and I was happy with the moment, without planning the next one.

Then 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. All of them. (Basically you have to change your life in every aspect.) (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 by mid 30s + food issues + insulin issues)
  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 and am trying my hand now at Reverse/Mickel Therapy. All 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.

From the start I knew I had additional adrenal problems, on top of the viral onset Chronic Fatigue. That’s why I read a lot about the bodily stress responses, especially dr. Selye who coined the term “stress” (when he actually meant “stressor”).

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 the body has and they should be avoided because they alter the normal modus of the body and have a lot of collateral damage. These are two systems that you cannot fool around with or be careless about. This is survival stuff. When the body gets bloody serious about something. Don’t taunt it.
That’s why I eat for chronic neutral blood sugar levels.

For the bodily Stress Response 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. The chronic thing that keeps causing problems.
Is it an intracellular parasite gnawing at my nerves or at my 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.)

On May 1st 2014 I started Gupta Amygdala and taking 100mg oral micronized Progesteron every day, regardless of cycle. (I keep repeating: Progesteron is not a sex hormone. It’s an adrenal hormone and it’s a neurotransmitter.)

On May 2nd I started healing.

Understanding Gupta and practising it clicked everything into gear that day. On top of all the things I was doing right to address the other issues (food, posture, hormones etc.) I had found the thing to influence ANS. It relaxed at once and health was restored.

Healing is a slow process. I had to keep taking my rests. I had to pace myself very much. No weird foods. No sudden activities, even though I burst from energy.
Over the coming months I slowly build up my activity level and my stamina. Until I was at 80% health and could do anything I wanted and meet friends and take drives. I was thinking about work again, a career. (still not eating weird stuff etc., those things are changed for life)

Then in Spring 2015 my precious 80% health took a nosedive when two normal stress life events happened. Just normal things. It could have been anything (an accident, a robbery, falling pregnant, going through a divorce, getting married, death of a parent-in-law, moving house, graduating, etc. etc.) In my case the cat nearly died (10 days of extreme stress for us and months of fear and worries afterwards) and I had to write an engineer’s rapport for court to prevent a big manure plant happening right next to the cabin that is my place of peace out in the country. (as an engineer I’m not against plants or manure but the plant is not designed securely and the predicted odour emissions were not measured right). Writing was stressful as is participating in the judicial process that puts more weight on procedural integrity than common sense. Parties are not there to solve a problem together, which is an engineer’s point of view.

We’re now 8 months later and both issues are resolved (cat is healthy again; the rapport is at the highest court of the country and there’s nothing I can do anymore) and I’m severely housebound again. I’m at 40-45% health I think. I can leave the house once a week for groceries or I can meet someone (receive visitors or visit them) once every two weeks. I’m very wired and I react to all the small things.

But I didn’t fall back to bed bound nor the 10% health level where I was in 2008/2009. Nor do I have brain fog. I did have that awful experience with PMS-from-hell (PMDD) but that seems to have gone now too with Zinc-supplements.

Now I’m trying to get back into that relaxed mode I was in last year. Out of Fight or Flight.
Back to being friends with my body, back to embracing and carrying that small inner child that’s so afraid and feels so unsafe.
It’s frustrating that just thinking it doesn’t make it so. Getting out of wired-ness takes some time and practise. It’s not an intellectual mind-thing. You can’t plan it, you can only invite it.

But I’m sure I’ll get there again, into that pool of peace and ease. I’ve nearly never stopped doing all the things I need to do (all the personal signature things from point 1) so my baseline is still pretty robust.
I’m therefore confident that I will regain some health, now that the life events are dealt with.

Besides this future goal I’ve now experienced what happens when my system gets put under these kinds of life stresses again. It’s scary but I didn’t die and I don’t need to worry (much) about the future stress events that will surely happen in my lifetime.

What happens in my body and is not to be worried about is:
– my liver stops producing bile (this means a major waste removal pathway is blocked and nutrients aren’t being absorbed);
– 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 (both eyes and attention);
– I cannot relax (both body and mind) (and therefor not digest my food properly).

This is all natural and won’t kill me. They do need to be addressed though because I cannot afford to undergo these things for long. That’s why attached to this post is a little reminder-note for myself. The things I need to do the next time life comes a’knocking.

I’m really confident about getting into that relaxed ANS modus again. Confident that I’ll get there and confident that it will heal me again.
On the ME forum Phoenix Rising I’ve been reading posts by James7a who recovered 100% and I’ve also been watching video’s by Neuffer who also recovered 100%.
They both practise according to my ANS working theory and they came up with their own version of it which makes their cases and experiences logical. I love logical. When things make sense.
I’ve also started reading on another ME forum called Health Rising which is more hopeful than Phoenix Rising and, amongst other things, collects recovery stories. There’s a lot of focus on the ANS there. And how to influence it even if this means deploying psychology-tools. But: psychology has nothing to do with the cause of the illness. ME is not a mind-thing, it’s a body-thing.

So I am going full throttle at it again too. Broad spectrum (addressing all the aspects of my life that need attention) and with special attention to getting the nervous system to calm the frick down.
Full throttle at a very slow pace.

Check out the short video’s James7a made on YouTube, telling about his illness and what he did to recover 100%. He’s a great, young British man who did it. He did it!
His video’s are short, 13 minutes and very natural (not rehearsed). And he makes his point very good.

———————————————————————-
just a little note to myself:
Next time a life stress event 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.
– watch Bananaboy’s short videos again where he explains how he healed
– wear ear mufflers and rest rest rest a lot;
– remind myself I am safe. Here and now. I am.

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Learning to be well.

It’s been 4 weeks now since I figured out my ME. I’ve been recovering ever since. My activity level compared to a healthy person soared up to 70%.
I’ve been doing stuff!

The last two weeks I had several knitters over for day long visits. I baked cakes for them and cleaned the house and had gone out and bought gifts and did the groceries and returned to the store the same day to pick up something else I needed. I showered.
It was amazing!
Last Friday I topped it with a visit of my own: I took a 2,5 hours train ride to a knitters’ house. Stayed there all day at the wool party and then took the train back.

That was a bit too much for me and my body.
At the end of the party I burst out in tears because I was too tired. I was much embarrassed because tears did nót fit the mood at that party. Luckily they know me and my condition and knew it was my body crying, not me.
But I still had to travel back to home, cradling my overwhelmed body and exhausted mind. We did it, my body and me. We arrived at my home town and my husband was there to pick me up at the station. He brought me home, he had already put tooth paste on my brush, and 4 minutes after I stepped over the threshold I was in bed, asleep.

Now I’m in the recovery zone, recovering from these two weeks in which I pushed the envelope. I’m not complaining (much).
I’m amazed how well I spring back from all the tiring things. Even with the collapse in Friday -which wasn’t a crash so well done, team me!- I managed to drive to the cabin by myself on Sunday. And I’ve been busy here. Doing laundry and cooking yesterday, both on the same day.
I skirted a dirty sheeps’ fleece on Sunday!

This is really weird.

So yes, lots of activity, even while recovering from two tiring weeks. My digestion is not well, with all of the cakes and wonderful stuff I ate. So it’s back to chicken soup, I made a big batch yesterday.
I have all kind of aches, my body would really like a warm bath. I’m picking up my daily walk again today, movement will help getting rid of aches and waste drifting in the blood stream.
I’m doing well with the Hydrocortisone, judging by the mad skin reaction to mosquito bites and oven burns (baking cakes) I have not suppressed my immune system.

The most wonderful thing about all this is that I actually have to LEARN to be well again.
First thing was imagining how it is to be well. I had not done so in many years. Not that I was lamenting in all the things I could not do all the time. Comparing what I wanted to do to what I actually could do was just not something that took up residence in my mind. There was the regular disappointment when I had to decline an invitation, again, or back out of engagements. Those were times of hot tears.
But hot tears dry quickly. I never laid around for long, pining for the time when I used to be able to do alllllll these things and now I can’t and boohoo.

Now I do. Now I’m mentally exploring what a healthy person can do in a day. What I can do, soon. What I would like to do. What would I like to do?
What now, will make me sing and cheer and jump out of bed and start the day eagerly?
It’s a freeing line of thoughts to follow.

(Again I’ve stumbled upon an area of thought that shifts the way I see the world, making it once as big, without actually changing anything in the physical world or in my daily reality. I’m amazed at how much there is to explore in the mind’s world.)
(Other such experiences I had were:

  • when I first started to see a city/architecture as a sequence of spaces instead of masses. Spaces allow movement through them, people moving, with their eyes seeing and their bodily mass associate to the masses around them, being it architectural or human masses.
  • when I used magic mushrooms -one time only and it aroused a dangerous interest in a repeat experience which luckily I did not pursue, more by chance than by smart- and I realized my eyes do not portray the world as it is. I saw colours and shapes in ways I’d never seen before. It told me the world is more than and different from how I see it and it started thoughts about being an entity in a world but not off this world, not in the way the senses suggest. Basic philosophy stuff, but quite different when approached from an emotional perception than dry intellect, as I had done up to that moment.
  • when I finally slowed down, here in the cabin, ill, dazed. Finally stopped absorbing the news and caffeine and the urban way of life and career opportunities and getting ahead and having goals and planning my days. When a day would just float by and I’d be. Just be. Just like the cat is. Like the tree is. No stress, no plans. There’s a whole world opening up once you just “be”. And I’m of a mind that it may be the true world, the way of our planet through all its scales and subjects of science. The world all other life lives in. Ought to live in. And that humans are the odd ones out, running our monkey business because of that brain we’ve got.
  • first time turning a heel when knitting a sock. Forging a 3D shape out of plane constructions is magic. A magic you can tailor to the specifics of your body. Suddenly you are a creator and a fashion designer. Linked with all garment makers that came before, which goes back straight to the very beginning of human existence.
  • first time driving my own car on the motor way. Freedom! I could just keep on driving, I could I could. And: operating a machine to bypass the body’s limitations. It’s what we humans do. It’s what female aviators did, a hundred years ago.

Anyway… )

LEARNING TO BE WELL
Now I find I have NOT gotten more hours in a day with the more energy I’ve gained.
If anything, the process of choosing and setting priorities has become more pressing. Because there are more opportunities and options.

Luckily I’ve trained a bit for this, while being ill.
I now realize I could pour all my new found energy and time into getting my house clean, into getting a well coordinated garderobe or into knitting all the yarn I have.
It’s so easy to loose your day in chores, administration, keeping up with people, keeping up with the news and getting things done.

Instead I will have to live in a house that’s not much more tidy then it was 4 years ago nor will I have perfect garments and I will probably die, a hundred years from now, in possession of some of the same skeins of yarn I already have.

Instead there’s that one golden hour a day, right after breakfast, in which I can do the thing that matters to me most.
I have to learn to leave all the other stuff for later. And figure out what it is that matters to me most.

You already guessed it has to do with art, illustration and producing something. The weird thing is that for the past 3 days I’ve set aside that Golden Hour for just those things. But I don’t use it.
I squander my hour on stuff. The internet. Letters that need to be written. Appointments that need to be made. Laundry that needs to be done.
And I find myself at night, sitting at the edge of my bed, quickly scribbling the drawing I had planned for that day. Or any drawing.

It seems I am afraid of doing the one thing I like to do most. I excel in distracting myself. In finding excuses.
Like today. Today I wrote this post and now I need to rest up (remember the past two weeks). Surely there’s no occasion to draw today…

It probably has to do with assigning to much weight to the choice I want to make. I’m planning again. Not being. What a strange new world!

Ain’t this grand, I have a cold!

The sniffles. A snotneus. Inflamed throat. Just the common cold.

Haven’t gotten one for years, what with my immune system all in harms through lack of soothing cortisol levels. Used to get them all the time before I got Adrenal Fatigue.

Now I’m even more confused than usual about how to get through a day healthily.

My body clearly is under extra stress now so I should take more hydrocortisone, right? But more cortisol will dampen the imune system more, crippling its ability to fight this cold. The third side of the coin is that I am under extra stress to be in optimum health PRONTO because we’ve planned a family trip and I’m not well enough, even without the cold.

I feel stupid. Because there’s no clear strategy to be decided upon. And the more I stress the more vulnerable I get.

In the mean time I’ve been waken up from bodily stress after only 3 hours of sleep for five nights in a row now. (normally I get five with perhaps another two hours later in the night). Going that long on that few hours of sleep isn’t good. And it impairs my thinking even more.

One thing it does make clear is that I need that cortisol. I now take it at night, when I wake up in that fit of sweat, coughs and sniffles. It takes two hours for my body to calm down, I aid it with progesteron and hydrocortison because the first few nights taught me that without it my body will not calm down. Or have intestine motility.

It’s a strange experience to get to a calm place by taking hydrocortisone… An activating hormone. Calm enough to perhaps doze off for another hour when morning comes. Calm enough to tend to other bodily functions such as digestion. Relaxed muscles.

But is it a calm from rescuing the body from a shortage of cortisol or a calm from oppressing the imune system andthusly disabling the fight it needs to fight?

I really am without a clue.