A narrating species.

We are a narrating species. We talk to ourselves, in our heads, about anything and everything to try and make our lives into something coherent.

It’s in our blood, it’s in our genes. I guess we need it to survive.

We think and talk about our past, our relationships, our careerplans, the news and everything in between and we try to make sense of it all.

Life is very different for species who do not perceive time as passing, nor life as a string of causations that can be manipulated. Species who live more in the moment have a very different existence. Cats. Dogs. Horses. Beetles. What a different life, what a different world! A very interesting perspective to ponder. It says much about how we live life and even more about how we rate it.

As this constant narrating is a human trait I’ve decided to employ it for a problem that I’ve been having for two deccenia now. The problem is this: when I was told my brother had suddenly died, half of my (figurative) heart was ripped out and I’ve been living with half a heart ever since.

(My mother is convinced I’ve got PTSS since that moment and judging by the chill in my body and my neck hairs standing on end when she told me this only a few weeks ago I’d say my body agrees to some point. (The thing is: I feel nothing thinking back to that moment. Nothing. I think I’ve done EMDR on that moment. I know I’ve felt emotions about that moment before but now: nothing. This might be indicative. Something to keep in mind and address at a later time.))

I was told in the dead of night. By an aunt who drove cross country (that’s two hours maximum in my country) and brought my other, younger, brother. My parents were out of the country at that time. The previous night, just before I fell asleep, I had congratulated myself with a pretty nice life. I was content, if not happy. I went to sleep and a couple of hours later the doorbell rang and I was told, while still groggy with sleep. I slammed forwards, doubled over, and screamed. That’s when I saw my heart ripped in two, a very strange experience. It floated away to the right of me.

I tried to postphone having to stand up or breathe in again because that would mean the beginning of a series of breaths, in a new world, with a new order. Then my younger brother was in my arms and we held on to each other. Then the whole thing began: travelling back to the hometown; getting hold of my parents; arranging the funeral; returning to university. Many new breaths and a life in a new, unknown direction.

Up until then I didn’t know me and my deceased brother had been two people. We only differ 20 months in age and in my mind we had always been one. Called “us” or “we” (but in a not exact term).

We both brought things to this entity. I was the outgoing, conquering field marshall. I would defend us both and coach him in a world that perceived him as a weird smart kid. I looked to him for guidance on how to be (true to) yourself (how to behave at the new school; how to explore which hobby you enjoy; how to handle the views that our upbringing installed upon us etc.)

I think you could say we were some sort of twin.

Well, in 1993 he died suddenly (myocarditis) and he was only 19 years old. I was 21. For the next three to four years I was in a state of shock. I walked around with a big hole in my torso and the cold wind swept through and the severed heart threads that bind us to our loved ones where trailing behind me in the cold and the dirt.

I mourned for seven years (unnecessarily prolonged by anti-conception drugs. Stay away from them, they are poison.). I graduated, found a man I loved and secured a home and a job. When I finally came to my senses (stopped the drugs and mourning stopped within one day. Ridiculous.) I could address this hole in my body. I slowly learned to fill it. With self love. With interests to pursue. With new experiences, with new people.

It was made clear to me that having half a heart is not normal. I visited a Shaman to try and help me. She said I had stolen a part of the soul of my brother and it had to be reunited with him. She did so. I felt a bit better.

On another occasion a healer massaged trigger points on my feet and lead me on a trance journey. I was in the womb and I was not alone, we were two. We were giggling. Birth was about to happen and one of us had to go. “See you soon” he said and I was born. I had never been one, I had always been two.

I went to therapy and learned to become an adult. Trust my feelings. Get over my daddy issues. I didn’t tell about the shaman nor the foot reflexology. My therapist was RET and these were silly things. We bumped into reverse transference and he treated me as if I was his daughter. We called it quits. I had learned to accept the existence of emotions and to not rely on mental constructions of the world.

I married. Quit my job, started a company, went to art school, got ill, was happy. I live my life. Once a year I cry about my dead brother but his passing has become a normal, healthy part of my life.

Now it’s 2015. My brother has been dead for nearly 25 years and I’ve been one-not-two for all that time now. I learned to live again, as one. I’ve learned a lot. I’ve grown mature. There is no trace of my brother anymore, not in life, not in me. Life has moved on.

Then tonight I watch the BBC series River. It’s about a policeman who sees his partner get killed. While he searches for the murderer he still sees her, his partner, around. They talk, they joke.

At one time he goes swimming with her little brother who’s blundering through life and, in his minds eye, she joins in. It’s night and they have fun in an out door swimming pool. Splashing and giggling. These are not his (altered) memories of her anymore, now he is narrating new plotlines around her.

That’s what triggered me. I’m a narrating human being. I could tell myself stories about my brother as if he were here now, as if he were alive. I could think up his wife, his kids, his dogs and the many cats they have. It’s easy to do, it comes natural to my species. And it comes natural to me because my brother is still a part of me, as there is still a part of “us” he could occupy.

You see, that hole in my chest is still there. I filled it but it’s still there. I filled it with furniture but there’s no occupant. Not a living being. He’s not there. No, not “he”… “us”, “we”… me.

Because it was not a piece of his soul that I lost or stole 25 years ago. It was a piece of MY soul. It was my part of him. The guiding part, the together-in-this-weird-world-part
I lost something then and I have not retrieved it yet.

I talked about this to my husband. To check whether not this way madness lies. Thinking up stories about a dead person? Sure madness.

At first he thought so and he warned me. But after we talked some more he narrated it in his own way and gave his consent. Because if you change the wording it becomes something different. Something more sensible.

Because what I lost back then was the part that allowed me to be frivolous in life. To be yourself in the world, without minding what other people think. To play. To explore, for interest’s sake, not for profit. To waste an hour, a day, dreaming. To follow an interest, just because you want to solve a puzzle. It was the part that let me join hands with intuition and skip away along the path unknown, without reason and caution stopping us and demanding justification and cause.

It was not even that, our contributions to “we” were not as black and white like that. Not so polar. But is was something like that. Something that gave me courage. Freedom. Confidence. Escape from trying to control everything. From trying to cover all aspects.

My husband now says I’m going to personify my intuition and will be using it as a guide. That’s not madness.

I say I’m going to narrate the life my brother is living now, in my mind. I know I can do so because I’m an expert on my brother, after all, we were never two. You can say I use my intuition. I say tomato.

I know my stories will not be reality outside of me, it will be all in my mind. But it will be “us” again and I will not be so alone in my own internal existence anymore.

Because that’s what is the real tragedy of having your heart ripped in two unexpectedly, that you suddenly find yourself alone. More alone than you ever thought possible, because you didn’t know you were two.

I want to think we never were. Two.

(One may feel like I’m negating the very existence of my brother by thinking about him this way. But you see, I’m talking about his existence within me now. That’s somebody else from the individual who was born four decades ago and died two decades later. A person whom you might have known, in your own right. Your own truth. True story.)

Paint me like one of your Dutch still lifes.

We trimmed the white rose outside and now I have a Dutch master painting resonating in my house.

I’ve been in the city for 5,5 weeks now and I’m doing ok.

I’ve started DIY Reverse Therapy and that goes very well. In the mean time I must not burden my body so I try to eat the good things. I’ve grown sensitive to chocolate (!!) and try to temper eating that. It’s probably the copper in it that makes me bad. I’m taking Zinc every day now and I need it.

I’ve been going out for whole days. Visiting a friend or attending a knitters’ party. By train. Walking in the city. Having fun, being happy

I do allright after such days. Do need vigorous resting afterwards but since one of my RT messages is that I am allowed to chill and relax for joy that’s working out for me. I do need to practise a lot though because the message is hard to learn. Being productive is so drilled into me, it’s our national Calvinism tripping me up.

we still see the influence of Calvinism in the values and beliefs of the Dutch.

Calvinism dictated the individual responsibility for moral salvage from the sinful world through introspection, total honesty, soberness, rejection of ‘pleasure’ as well as the ‘enjoyment’ of wealth.”  quote Eleonore Breukel 

I’m still very much a beginner. Make lots of mistakes. Mistakes take time with ME.


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.

PMS from hell gone.

The past few months I got really bad PMS. PMS from hell.
PMDD. Weeks that I could not live alone because it was not safe. Because I was desperate and suicidal.

I knew it was all brain chemistry and not a chronic depression. As soon as my period started the cloud lifted and I was my happy normal self. But only for three days, the last two months. Three days after my period the cloud would descend again.

But knowing something has a chemical cause and dealing with the feelings/thoughts it generates are two different things. In the end it got too hard to manage the feelings and thoughts.

The weird thing was that my usual PMS can be managed by taking micronized Progesteron and/or Progesteron cream. I’m versed in that. I know how to work it.
I’ve had one bout of suicidal depression that was caused by a vit D shortage.
But neither one of those supplements helped this time. I was stumped.

Of course I did research and found the term PMDD, meaning PMS-from-hell. Including the suicidal tendencies. This rang true.
I looked up other people who have this and what works for them. One thing is that anti-depressants work instantly. Instead of the few weeks it takes to affect a chronic depression. With PMDD anti-depressants work instantly and you only need to take them a few days in the month.

The other suggestions I got were supplementing GABA, Lithium, St John’s worth, black bear spray, bh4 and 5htp.

I went to the doctor to get anti-depressants. This is tricky because I have a homozygous mutation for MAO A which means I already have an inborn MAO A inhibitor. Anything extra that blocks my noradrenaline receptors will have me bouncing off the walls for hours. Because I already have that tendency.

The doctor was very good!
He suggested that what I’ve been lacking these past few months is Dopamine:
neurotransmitter werkings

You all read Dutch right? The title is Function depending on Neurotransmitter.

Dopamine = attention; motivation; enjoyment; rewards.

Noradrenaline = alertness & energy

Serotonine = obessions & compulsion.

The three words in the middle read: interest; mood and fear.

The doctor must be right. There must be some sort of system where prolonged stress interacts with sex hormones (in their neuro transmitter role!) and depletes Dopamine in my head. An interesting thing to go look at.

Normally I have a healthy mix of the three. Although my Noradrenaline sticks around for too long because it’s destroyer MAO A isn’t very good. But otherwise I have a natural high Dopamine level.

He then talked me through the various anti-depressants that exist and on what neurotransmitter they have effect:
antidepressants overview

We chose an anti-depressant that affects Dopamine level, the best there is: Bupropion (this also is the only one that won’t affect libido)
It also inhibits noradrenaline but we agreed I should try it, in a low dose, to see how bouncy it makes me.

Dr. also suggested I use my sensitivity to assert if a pill was going to help me. Or even just carry it on my person instead of ingesting it.
Can you believe such a suggestion coming from a certified GP? That’s tailormade medicine right there. Fabulous!
I’d never thought of it but it is indeed something that works for me. I can sense whether something (a food) is good for me. Why not a pill?

He also mentioned the three things that improve mood:

  1. Zinc
  2. Krill oil
  3. Taurine

So that’s what I started taking. Taurine also soothes the liver which is a strained organ in my body. But it also contains sulphur which my body cannot handle very well (MTHFR/MTRR mutation)
The Zinc did it.

Whenever the dark cloud reared its head I just took Zinc and it went away again. It was amazing.
I hate when this happens, when a singular thing influences my mind so much and when it repeatedly proves it does and when I could have avoided suffering just by taking it earlier. And I hate the tiredness afterwards, when my body sighs in relief and needs time to recuperate. I hate when I wasn’t smart enough, resourceful enough, to stop this earlier.
I know I should be proud that I solved it and that I don’t feel so awful anymore. But the frustration is bigger at the moment.

So: no mental PMS/PMDD symptoms this month. I did not need to take any anti-depressant (but boy, am I glad I have them in my pantry. A good back-up whose presence eases the mind).

I’ve now had my period and we’re in day 4 of my new cycle.
Unhappiness is here again. But it’s very mild. I don’t think it’s related to the things above at all. The Zinc doesn’t attack it unfortunately.
It IS chemical though. I’m lacking something. Or have eaten something that poisons my brain. Could be the shrimp kroepoek? Or is the the stress of prolonged staying the city? The lack of chicken soup?

Either way I’m back on eating a clean diet again. No exceptions. With a brain chemistry as sensitive as mine, that’s the best thing to do.
I’m drinking a lot of (salted) water and taking enough hydrocortisone to keep my body out of stress.

And I’m re-affirming my body all the time that there is no reason to stress. We are safe. We are good. Relax. We are fluid and we are walking in the sunshine. Life is good. No worries.

(this is a solid approach to ease my Autonomic Nervous System which is at the core of my illness. More about that later.)

PS I stopped Valerian and also Progesteron pills the last week of the last cycle. Both might be energizing my system too much.

I took a Prog pill the other evening and laid awake again. Without it I sleep through the night. I do need the Prog cream for the current unhappiness though. This has always worked neurological for me so we’re back again at neurotransmitters and brain chemistry.

Drawing up the map of my health and plotting where to go.

Right. Time to get an overview of my health and identify the various aspects and their symptoms. In order to have a clear understanding which daily medicines and measures are targeted at which aspect. In order to get a clear view of topics that are not covered and need more research.

My personal collection of issues, in no particular order:

  1. Progesteron deficiency. Not clear whether it’s ovary-caused or an enzyme issue. Clear is that I lack the hormone and, over time, my adrenals have not been able to keep substitute production up. Substitute; HRT. 10 mg per day blood level. Perimenopause is acting up lately, moodswings. Up to 20 mg.
  2. Nervous System not well instructed, tendency to do Fight or Flight as default. Three decades of this caused some damage and infavourable habits. Habits countered with therapy, Amygdala retraining, hypnose, EMDR. Daily conscious attention needed.
  3. some food and other sensitivities. Some are caused by gene make up. Gluten, dairy, green leaves, whole grains. Vanille flavouring, garlic, glutamate, caffeine. Blood sugar (and insuline) react intense to sweet tastes.
  4. immune system. Very robust, I don’t get colds or the flu. Needs more research though because I have a sore throat every night and react badly to dust. Gets influenced by cortisol-intake. Skin doesn’t heal well.
  5. adrenal insufficiency, acquired. They need fortification. Taking hydrocortison, 20 mg per day.
  6. explainable other things: cold extremities when I don’t take enough Iodium; crankyness when PMS; crankyness when not enough sleep; light headiness when not enough salt/BP; shoulder impingement
  7. unexplained symptoms since birth: sleep pattern. Pillow = zonk! 5 hours later I wake up in a state, takes 1,5 hours to calm down and get normal body temperature. Then I can sleep another 1,5 hours. Wake up unrefreshed. Sore thoat every morning. Slow heart rate (42 bpm), it sped up since 2010, at 60 bpm now.
  8. unexplained symptoms since 2008: fatigue; difficulty maintaining homeostasis; not able to function long in upright position (standing or sitting); brain fog; duodenum uptake only works when lying down; “heavy” limbs and body; not able to handle sounds, stress, surprises or temperature changes. Liver and bile problems (not working). Some awful thoughts due to faulty brain chemistry. Something with vit D. I need to seriously pace myself, it’s a necessity. No pain, grateful for that.

There we are. An interwoven complex of symptoms. I can assign most of the things I notice on a day to day basis to one of these (and act accordingly). Apart from the things at points 7 and 8.

The other things require a constant managing. From my stress levels to my food, from my house chores to the choices of social interactions. Which pill to take when and how much. Monitoring thoughts and feelings and allowing some and blocking others.
It’s a drag and a full time job!

But I need to step up my game because new things need my attention:

Lately the Progesteron thing is getting more difficult, where the feelings of despair are more intense and the HRT doesn’t resolve it.
This needs some more research since it’s probably time to look at oestrogen replacement and the connection with vit D, considering my age (menopause is looming). Before, any oestrogen would give me endometriosis and phyto-estrogen (soya yoghurt) would cause spotting. This may have changed.

The immune-system: I have only a basic understanding of. Cortisol dampens it and this is desirable but not too much. Stress dampens it (via cortisol) and this is not desirable at all.
I’d like to get down to the details. Learn about the various cells (T-cells) and what they need to function. I bet the lymph system is involved and it’s fond of fat so that’s interesting. What proteins and enzymes do the immune system cells prefer? Do I have those in abundance? Are some gene mutations hindering functionality? Why does anti-histamine work so well to relieve sleep problems in people with ME?

Do I have chronic infections that could explain the rest symptoms? My onset of this chronic fatigue and other problems was typical for an infection: a short bout of “flu” in Spring 2008 and I never got up from the bed. Crippling fatigue, brain fog, not the strength to keep my head up and eat something.
Adrenal issues played a role in that, back then. Some symptoms, especially the not (mental) responsiveness until some (salty) food touched my tongue is illustrative of adrenal crash. My husband had to physically put something in my mouth, while I lay drooling in my bed, before I could open my eyes, think and talk.
But weeding out those symptoms and the ones caused by Progesteron deficiency leaves me with some that indicate chronic infection. My overall body system is hindered by something. Something clogging the system in the core. Clogging cell functionality. I just don’t seem to produce the ATP I did before.
There are some parasites who interfere with ATP production. Some bacteria such as Chlamydia Pneumonia and Rickettsia.

I’ve encountered the following parasites for sure, because my husband and my cats are proven carriers: EBV; Herpes; Chlamydia Pneumonia; Rickettsia. Coxiella burnetii.
I’ve also been bitten by ticks when I was 23 years old. No signs of infection have emerged back then. I got sick when I was 37 yo.
I got sick 3 weeks after visiting a sheep’s farm with fresh lambing that later on turned out to have Q-fever (Coxiella burnetii.)

Ah and there is one thing I do not wish to research at this moment. My heart. I’ve been experiencing weird rhythms and tight feelings. But I know the heart does this in many people. And I know people with ME are prone to develop collapsed matrial valve. And I have long term high cholesterol, due to my medicines.
These heart things are recent, the last 5 weeks. They occur daily now. I’ll let my GP listen to my heart when I see him in 3 weeks. But I will not research this topic.

Lastly I came up with three theories of what has happened to me in 2008 and after that. Trying to explain for the weird bout of healing I experienced last year:

  1. I got infected in 2008 and now have a chronic infection that wrecks my body. This is what ME seems to be, a chronic infection with a bug that hinders normal cell functionality. Akin to malaria, Lyme, HIV, EBV, Hepatitis and the lot. It comes and goes. But it never leaves.
  2. I got infected in 2008 and conquered the infection. But somehow a switch got turned and now my body operates in a different way, not allowing for maximum health. These switches could be genes that were turned on. Or habits/modus operandi the body settled into. Perhaps I flipped the switch on May 1st 2014 but the stress of Spring 2015 flipped it back.
  3. Whatever happened in 2008 for certain is that on May 1st 2014 I healed overnight (the night I started 100 mg of daily Progesteron and Gupta Amygdala Retraining). I was slowly but certainly healing from that day on until Februari 2015. Then the cat got sick, I experienced some major stress and subsequently fell ill again (bile gave out, liver pain). Have not recovered. Did I get infected by her eye conjunctivitis bacteria back then? Is this nothing but a second stint of intracellulair parasites?

Just three things to keep in mind. To keep my mind open about what’s happening. To consider alternatives and not get stuck on one particular idea about what my illness is and where I am in the process.

My research topics for the coming months, in no particular order:

  1. HRT for peri-menopause: oestrogen, vit D
  2. immune system: T-cells and their sisters, fat digestion and distribution through body (skin, collagen), lymphe system, reaction to chronic infections, tools for intracellular parasites
  3. intracellular parasites. How do they live, what environment and nutrition do they want. What are the likely culprits in my case?
  4. are there alternatives to long term anti-biotics to battle intra cellulair parasites. Can cellulair environments be altered to annoy the little buggers for example? (acidity; flush out certain amino acids; ketogenic energy modus; aid T-cells)
  5. the liver problems. This is a specific thing in me. Bile production stops with stress. I want to help my liver. Research the amino acids Glycine, Taurine and Niacin.

Three and five are subjects I am genuinely interested in. Intellectual curiosity. I want to learn about these topics, regardless of my personal situation.
This is good. I need some topics of thought to direct my attention to when I start moping or thinking about the grand scheme of things (which leads to depressive fatalistic thoughts). Part of the mental hygiene routine that’s required when you’re dealing with chronical illness, moodswings and/or life in general when you’re a sensitive and alert human being.

Well this is it. The map. The routes. Better get started.
I estimate to ponder these things for about three months.
In between there will be that GP visit (main goal is getting psychiatric help for the brain chemistry thing).
And the manure factory plans are coming to an all high in the coming months too, it’s at the highest court of my country at the moment and the engineers’ rapport I wrote (in February 2014, right in the middle of the stress!) is one of the key features. I expect to write some more documents and meet with experts on a moments’ notice. This will put me to bed without a doubt.

I heartily hope no other stress factors emerge in my life because I do not have the reserves to cope. Please no family crises or friends in danger or cat-astrophies. In the mean time I shield myself from world news and noise and bad foods
I’m addressing the known health factors in the numbered list at the top like nobody’s business, doing all the right things. I can’t go out, I’ve already cancelled all wooly meetings I had planned, I’m resigned to being housebound again. Only with careful pacing will I meet the two challenges described (GP and court case) and preserve the current level of health.

Hopefully my research will unearth some new things to try and give me a leg up to get to better health again. I’ve also mourned the fact that I’ll never work again. And that I may never get to another level of health. This is behind me now, I’m now sailing through a blissful bout of denial about the latter thought. The realisation of a dwindling life comes and goes. But never leaves. The Nile is a lovely place to visit every once and a while.
pic by Sarah Corr

Found my train of thought: intracellular parasites

I lost the plot in this post about theories of ME  but I found it again.
First I want to say: I’m dropping the “CFS” term. It’s too close related to adrenal problems and besides that people tend to think that fatigue is the main issue to be overcome. It’s a small step to then start talking about remedies that work somewhat for that other “fatigue illness”: depression. And before you know it laymen and experts alike are talking about having to increase exercise or do psychotherapy to heal from ME/CFS.

Neither depression nor ME is fixed by these two options. Especially exercise will make ME worse.

Well, let’s move on to the train of thought:

  1. body is an ecosystem
  2. we have numerous cohabitants on board (bacteria, virusses, worms and bugs).
  3. with some we co-exist to mutual benefit (mitochondria, gut bacteria). Some are parasites (rickettsia, legionella, EBV, HIV, tape worms).
  4. Parasites dwell in numerous places in the body (eyes, throat, intestines, lungs, blood, cells).
  5. let’s focus on intracellular parasites. These buggers live in human cells. Destroying them to get ahead. (malaria, HIV, Chlamydia, Lyme)
  6. These destructions have eerily familiar aspects of ME: incapacitating the vit D receptor; dismantling the mitochondria for spare parts; low T-cell count; immune system out of whack.
  7. some ME experts have success by giving patients long term anti-biotics. They now think ME is a disease of intracellular parasites (dr. De Meirleir, Marshall protocol, dr. Jadin)

I’m going to take a new fresh look at my health. Unravel the various aspects that coincide and then focus on the ME part.

I then might find it beneficial to have some tests to find out what bug is present in me. I’m sure there’s some. I’ve been bitten by ticks and fleas in my life and my ME onset was sudden and flu-like (a few weeks after visiting a lambing herd that turned out to have Q-fever).

Besides, nearly everybody has EBV.
My cat has had conjunctivitis for 6 months now and it’s the type that reacts to the anti-biotic for Rickettsia and Chlamydia Pneumonia. I’m sure I’ve been in touch with them.

I may go to dr. De Meirleir. He’s in Belgium. Only it’ll cost well over 3000 euro for the fist visit + lab tests. I’m not ready to pay that :(
After that he’ll propose long term anti-biotic courses. I’m not ready for that either.

I wonder if there are other ways to fight intracellular parasites. Perhaps change the environment they live in (the cells). Perhaps aid the immune system. I have no idea. For this I first need to learn more about intracellular parasites and how they live.

It’s a nice topic of research, to keep me occupied. I need such a topic because moodwise I’m not well and diverting troublesome energy to such a topic is a good habit.


the reason to live.

I did find the one reason to keep on living, a few weeks back. I’ve been test driving it and it works for me.

It’s because you provide a unique colour to the palette of humankind. A colour only you can provide. A colour your friends and your acquaintances would sorely be robbed of, if you took it away.

pic by Neil Gould

I got the idea from this Dutch post by Jacob Jan Voerman, written to a friend of his whom decided to retreat his internet presence.

“I’m taking myself off line because I’ve said all I want to. Anything else will just be a repeat”.
Jacob Jan writes to him that the crux of his internet presence is not the content he provides, it’s his mere presence. The unique colour he adds to the palet of the world. Of human kind. Of his friends.

I was very much comforted by this thought. I do provide something unique and it doesn’t require any effort on my part. Just being me is enough. Just showing myself a bit, on the internet, towards friends.

It has comforted me in times when I want to end this life because the pain has become unbearable. It did a couple of weeks back. I was driving home after having exerted myself beyond my abilities and running low on vit D and Progesteron to boot.
The pain, this life, it became unbearable.
Luckily I knew it was chem-induced and that it probably would pass if enough time flowed by. But the pain and this life, in which I have to manage this all while being crippled by the illness in a world that works in logical ways where decline is inevitable and love and beauty is only found in short vulnerable bursts, became unbearable. No longer worth it.

pic by Asif Akbar

I’m living in limbo now. Still shell-shocked from that episode.
I’m not about to commit suicide on an impulse but I’m clearly finished with the life I’ve lead up until now. It’s no longer acceptable. Something’s gotta give. And something will.

When friends and loved ones try to convince someone that life is worth living because they love him/her it always struck me as a selfish argument. Why should the tired-of-life-person be asked to keep on enduring the pain? Because you’d miss him/her? Because you’d get a hole ripped in your heart? What about the tremendous pain that person endures, day after day, minute after minute?
“Because we love you” is not the right thing to put on the scale.

“Because you are unique and you add something unique to our world” works better. At least for me.

What it also gives me is a sense of self worth.
Me becoming more ill every week it seems has send my dreams out of the window of a career. Artist; illustrator; engineer; writer; landscape designer. Anything I’ve talked about on this blog is not going to happen.
I cannot sit up straight long enough. I cannot hold my thoughts together long enough.

I’ve cried about this loss and I’m just about accepting it now. It gives me some peace of mind, that I can now finally let go of all ambitions that took hold in me.
I can let them go because I’ve found something else to connect my self worth to. Something that does not require any sitting up right or keeping my wits about to be for-filled. By just being myself and just sharing my unique colour with my friends and (internet) acquaintances I am worthy. Living a worthy life. Something to be proud of. Someone to be proud of. Even when I’m “doing nothing”.

pic by Neil Gould

(btw, I’m discovering a whole new array of beautiful and touching moments in “the limbo live”, where I no longer strive and strain for results.)

New theories on ME/CFS

The body is an eco-system. I visualize it as the Great Barrier Reef, with all kinds of species crawling about and living in nooks and crannies.

 pic by Vincenzo Piazza

There’s all kinds of bacteria and virusses living about our bodies. The imune system picks out the obvious offenders but it’s still pretty much a Wild West scenario where bad boys run and hide and the killer T cells hunt them down. Remember that awesome little movie of that white bloodcell gunning for a lone bacterium?
That’s how they get them, one at the time.

Unless there’s a full invasion getting on, then the whole body response is needed and the place is set afire (fever) to exphixiate the culprits. With considerable damage to the furnishings but hey, the goal justifies the means.

Here now are 3 theories of ME/CFS building upon this image:

  1. infection makes it literally impossible for the ecosystem to function normally. This is every infectious illness you can think of. It hinders bodily processes. Solution = eradicate the infection.
  2. infection induces the body wide Sickness Behaviour Response not because it’s a body wide infection but because it bugs the very wiring that tells the brain to engage in the body wide response. This would probably be the Nervus Vagus, its cells infected by a particular invader and thus thinking the whole body is under attack. Solution = get rid of bugs OR block this signalling to the brain
  3. this constant battling against invaders tires and strains the system so much that the very stress of the situation hinders its function overall. Since the ecosystem cannot be rid of its occupants a solution could be to teach the system to learn to live with it without assigning stress to it. Probably on a less intense level of life then that’s advertised. Solution: stress management aimed at the CNS and its brain components in particular.

It’s also possible that infection occurs in a particular part of the body that induces the very symptoms of ME/CFS. One such part are the endothelial cells that line every blood vessel in the body.


I’ve lost my train of thought. grrr

here’s the research paper on infection of the Nervus Vagus in relation to ME/CFS: http://www.pdf-archive.com/2013/06/23/vanelzakker-vnih-cfs-in-press/vanelzakker-vnih-cfs-in-press.pdf

here’s the post on infection of the endothelial cells: http://forums.phoenixrising.me/index.php?threads/what-is-the-mechanism-of-fatigue.38556/#post-616737


 pic by Mark Morcom


Don’t eat much.

  1. I preserve so much energy when I eat sensible (small portions of dense nutrient foods such as just 2 egg yokes for breakfast).
  2. Survivor Man Les Strous doesn’t find a whole lot to eat when he’s out in the wild.
  3. it’s berry time around my cabin, nature is giving! From this natural environment I get maybe 5 ripe berries a day… That’s not much.

1 + 2 + 3 = people were not made to eat all day every day. Certainly not in the portions we have at our disposal.

pic by Shannah Pace

Which is why:

4. sugar makes you fat and gives you diabetes. “Sugar” includes modern fruits, honey, wheat products, fruit juice and milk. Any amount over what you can balance on one finger will spike your blood sugar.

5. when you eat more than the size of your fist (or even half that) you’ll keep wanting more. You’ve activated your insuline system. This is a biological system that’s very hard to counter with sheer willpower.

The solution is to eat small portions of dense foods. Never raise blood sugar. Never go hungry.

I imagine a hunter gatherer’s daily collection: 5 berries and a small rodent.
pic by KateKrav

What will he do all day once he’s fed?
Sit around. Enjoying the view. Relaxing. Sleeping. Socializing. Thinking things.
Pretty much what the cat does, except for the thinking.

Can it be that we’re meant to do just that? That our bodies were made for searching food and, once found, to relax? To enjoy our brain a bit but not to the extent we pummel it today, with news and coffee and career schemes and games.

It certainly feels like my body was designed for having a little food and having a little lie in.
The problem is: what to occupy the mind with?

(I suspect we have drifted away from the original use in this also. We are addicted to the mental pummeling just like we are addicted to sugar and lots of food.)