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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Looking back at my CFS/ME

HOW I THINK CFS WORKS:
I feel that any major accident only happens when about 7 factors line up and go wrong simultaneously.
Small factors that are not really significant in themselves. But combined they can cause a train crash, or a melt down in a nuclear facility or someone getting CFS.

Furthermore I view CFS as an illness where the bodily system is overwhelmed and can no longer cope with normal life.
What causes an individual body to get overwhelmed varies from person to person. Everybody has their own 7 contributing factors that ultimately cause CFS. That’s why for some of us Lyme is key, for others mitochondrial stuff and to another it’s all about the stress response.

The 7 factors and the overwhelming are two different things in CFS. The overwhelming needs immediate attention and for this the body must me relieved from as many burdens as it perceives. Otherwise the overwhelming will continue and the body will be in distress and despair all the time. It’s probably stuck in a loop of automated stress responses from the brain (the very loop the Gupta Program tries to break).

The 7 factors are the ultimate cause of the illness and they need attention along the way and in some cases life long alertness/treatment.

BODY BURDENS
When we fall ill all persons with CFS/ME share an incapability to deal with body burdens.
These burdens can seem “silly” but they aren’t.
They should not be questioned but removed from ones life immediately.

A “silly” example from my own life: all of a sudden showering exhausted me and I had to go to bed directly afterwards. Often I could not even towel myself dry any more and had to call my husband to do so.

This burden felt silly and I reprimanded my body. Which did not make the burden go away.
Later on I thought up a theory that explained why my body couldn’t cope with showering (blood pressure problems, difficulty maintaining homeostasis, external change of body temp, whatever)

Whether a burden is rooted in sillyness or a plausible theory, it doesn’t matter. All that mattered was that showering was a burden to my body.
So I removed it from my life and my body was grateful for it.
(I started to wash myself seated on the floor of the shower, or with a bucket and a cloth in the bedroom. Once a week.)
Not having to deal with the burden alleviated my body.

Removing as many burdens as possible in the heavy stages of illness will help the body save its resources.

Don’t argue with your body about what bothers it, just get rid of it.
Is it light? close the curtains. Is it cheese? eat pears. Is it your job? resign (yes). Is it your family? say: “see you in 5 years.” Is it the city? go live in a cabin out west. Is it noise? wear mufflers. Is it boredom? start knitting (it soothes the nervous system and is tactile and technical and there are patterns for everey degree of brain fog).

Some solutions may sound silly or impractical. But they are not. They are what’s needed. (I pretty much did all of the above.)

LOOKING FOR THE 7 FACTORS
The second thing I did, as soon as I had some breathing space from getting rid of body burdens, was investigate what my specific 7 factors are.

I had some things ruled out via standard blood tests: vitB12 shortage; vit D3; Lyme disease; Thyroid; cancer markers; liver problems. The usual your doctor will think of.
Then the doctor could help me no further, he threw his hands in the air and said: “We’re used to seeing patients with one major thing wrong. You are all over the place! I have no idea what you have!”

With this I realized it was all interconnected. It would be very hard to determine what was cause and what was effect. So I didn’t even bother trying.

I listed my symptoms/problem areas:

  • My hormones where weird
  • My digestion was bad
  • I was malnourished
  • My bloodpressure was way too low
  • My brain did not function any more
  • I had slurred speech
  • I could not keep balance
  • I had insomnia every night
  • PMS was through the roof
  • My blood sugar was extreme and erratic
  • My body was no longer able to keep its temperature or its homeostasis in check
  • I was anxious and wired and supertired at the same time
  • I could not lift my head or speak upon waking, someone had to spoonfeed me a bite to eat before I’d respond

Because there was not one obvious starting point I thought this: “It doesn’t matter where you start to focus on. Anything will do. As soon as you improve on one area, the body will react grateful and heal (some) in other area’s. The body is great that way.”

FIXING DIGESTION
So I chose to fix the malnutrition. On a whim.

I knew I wasn’t taking up the nutrients from my food. Digestion was minimal (grey, floating poo with recognizable food morsels). And what nutrients I did absorb my low blood pressure wasn’t able to deliver into tissues and organs (that’s why the malnutrition).

Slowly I fixed nutrient uptake.

By taking stomach aids (making it more acidic), by eating every 20 minutes (keeping blood sugar level), by eating only foods that are -to me- easy to digest (no fibers, no veggies) and by laying down when the stomach empties into the duodenum (40 minutes after chewing). I also chose to eat a ketonic diet which requires minimum effort for maximum nutrients, I chose Homo Optimum Diet. With this you get your energy from fats in abundance. It also normalizes brain chemistry (it is used to treat epilepsy). And it keeps blood sugar level. I took pancreatic enzymes and a multi-vitamin. I had my husband buy organic chicken soup  and rice (I wasn’t able to cook back then)

I aided my low blood pressure with Cortinef and by laying down a lot.

I aided/indulged my brain fog by doing only 1 thing per day. I lived in a daze anyway so getting out of bed or ordering a supplement was enough for one day.

HAVING A LUCKY BREAK
I had the good fortune that my insomnia each night is of the kind where I am very alert. For one hour and a half my brain fog was gone and I was able to read medical journals and research my case. I wrote little notes to daytime-me about what supplements to buy or what to eat. I had to be very specific as daytime-me couldn’t even remember my name most days.

I think everybody has a lucky break they can employ in this stage of the illness. For me it was the alert insomnia in combination with my intellectual drive (willing and able to read scientific papers). But it doesn’t need to be any of this to get ahead with this illness.

~ Your lucky break may be your background as a care counsellor: you speak the language of doctors and you know how the field operates. You can use it to get what you want from them far more efficiently than I can.
~ Or it may be your knowledge of yoga: you can aid and stretch and calm the body while bed bound. It will soothe the nervous system, aid digestion and the lymph system and preserve your health much better then I ever could.
~ It may be that you’re a mum: you can ration your daily cuddles with your kids and you can empower them by delegating the tasks you cannot do yourself. You’ll have daily bouts of love and you’ll learn that life in your house can unfold in ways you couldn’t have imagined when you were in total control. I was very lonely on a daily basis and it took a long, long time before I learned that another way of doing things is a good way too.
~ Or can it be something as “insignificant” as that you have nice long fingers? They are excellent for tatting. Or you could just admire them against the filtered light from the window. Taking in the shapes, the colours. Being at peace. Perhaps your hands prompt you to take up photography as a hobby. In your bed, one photo per week, just with your phone, celebrating the shapes and colours your beautiful hands show you.

Just look at your life, there’s bound to be an edge you can use.

I set aside a year to get better digestion. I got rid of ambition, of the pressure or the need to achieve. I stopped explaining to people what was the matter. They couldn’t understand anyway and having to justify myself was very tiring.

FIXING HORMONES
When my body responded a bit to the better digestion and I was ready to take on the next subject and I chose hormones. Again, any subject would have worked. Again I set aside one year. This wasn’t as much a conscious decision, it just turned out it took about a year to focus on one subject and get some headway on it.

With a good endocrinologist I found out I lack Progesterone, probably from birth.
Over the years I’ve learned this is not a female hormone at all but the precursor to most adrenal hormones, including cortisol.

By the time I fully understood this my adrenals went bust, I had now acquired Addison’s disease. I was 4 years into ME and got a new disease. Gradually I learned to live with it. And again: stopped explaining myself to people.
To my new friends from the knitters’ site Ravelry.com I did explain how little energy I had. They (and I!) needed to know this so it would be clear how and why I was choosing to spend it. Pacing has always been a problem for me.

FIXING SLEEP
Sleep I have not been able to fix. But I do not care so much about it any more. I’ve found a way to wake up rested even though I toss and turn for 2 hours in the middle of every night.

 

THE ACTUAL 7 FACTORS THAT MADE ME SUSCEPTIBLE TO CFS
Now, May 2014, I can look back and identify the 7 individual actors that made me fall ill back in 2008.
Some of them I treated without knowing so when I chose one subject/symptom to focus on for about year. Others I stumbled upon or they grew suspiciously appearant in my life. I researched them and found they not only make theoretical sense but also all empirical testing in my life confirms their existence. On these 7 factors I have not found anything debunking their existence, in my case.

  1. I’m a go-getter and overachiever. Ambitious, quick, adrenalenic. Never resting, never loitering, always productive, always plans. (Tiresome to be around, no doubt. Tiresome to be, to be honest.) Besides rooted in character and upbringing this is also influenced by a MAO A mutation I carry. It makes for high levels of noradrenaline and serotonin and intense focus (making me the opposite of AD(H)D). I’m a hyper piece of quicksilver by nature.
  2. The individual make up of my intestines. They don’t like particular foods (due to individual gut flora and enzymatic build up). But also literally: the way my guts are tangled. They lie such that they press against my liver which causes pain. Which causes stress (and perhaps my insomnia?)
  3. Hormones. It seems I don’t make enough Progesterone. This caused Estrogen dominance (PMS from hell). Adrenals had to replace the shortage from the start which put a heavy burden on them all my life. As all endocrine organs slow down after age 25 this caused more and more problems over time making me very weak. And at 37 years old suspectible to CFS.
  4. CNS (Central Nervous System). I lack a basic sense of safety and was in constant Fight or Flight modus because of that for all my life. It seems my CNS was not calibrated well at birth. This is a physical thing, not phsychological. Being in Fight or Flight constantly seriously taxes and weakens the body.
  5. DNA mutations. I lack enzymes for proper use of vitD, vitB1 and Folic Acid. Lifelong shortage on those present problems which standard blood tests won’t explain. (my GP recognized the symptoms but was stumped when the blood work didn’t reflect it. He cheered when I presented the DNA evidence, he was right after all, the tests were false positives)
  6. Insomnia. My whole life I’ve woken up after about 5 hours of sleep. I lie awake -very alert!- for about 1,5 hours. Then I get another 2 hours of broken sleep. This pattern robs me of REMsleep including the boast in Human Growth Hormone and GABA it provides.
  7. various smaller things: very sensitive insuline response; sensitive to Tyramine; dust mite allergy; no hobbies and never learned to relax; Atlas Profilax needed; etc.
  8. unknown factor. (mitochondria? virus? bacteria?)

I can now see how my body was hollowed out, made weak, by this factors combined.

So when 2008 came about with its usual life stresses and then a little virus… I fell ill.

Some of these I’ll have to treat for the rest of my life: the hormonal shortage, the DNA mutations, my easy flammable character. If a virus was a factor in my case, I would have had to treat it with ongoing anti-biotics and hope I’d beat it one day. Some people with CFS who have this as a factor go this route succesfully.

MY PROGRESS AFTER ONSET OF CFS
Over the first few years of CFS I slowly regained my digestive and mental functions, just by throwing out of my life anything that burdened my body. This included noise, fruit, raw vegetable and my mother in law.
The first two to three years I lived in a daze, not knowing my name, and very anxious and stressed out from trying to fight this disease. Or just understand it.

After the first 4 years I had learned enough about digestion and nutrition; about the lymph system and the bodily stress response; about CNS and hormones, to actively combine them into a daily routine that didn’t made me worse than I was.
Only at that time did I stop getting worse.

(that’s also about the time I got Addison’s, as a funny coincidence. As a consequence of getting Addison’s  I gave up, I gave in to the CFS, thereby stopping the stress and anxiousness which taxed my adrenals so much. So there’s a major happy consequence of a funny coincidence right there. Because giving in made me sit back and accept that this was to be for a long ride and that’s when I started to learn to enjoy the moment. It is the time I started to experience calm happy moments for the first time in my life. As a quicksilvery person I had never took the time to smell the roses. Or spend an hour without purpose. I had never allowed myself to bumble about, wasting time. I had never relaxed, actually. And I had never experienced true, existential happyness, in the moment. I would never have learned this without CFS, without acquiring Addison’s and without giving in to them. This alone has been such a gift. Who knew that major life experiences hide in such weird places? And that you don’t have to do hard work to gain them?)

Over the last two years I got to understand and address the underlying factors: I started to structurally supplement Progesterone and Cortisol. About a year ago I learned about DNA and had my genome checked and things started to make even more sense. My doctor was right about the shortages in vit B12 and vit D3 all along.

Last Summer I corrected my Zinc levels (had a horrible time with Copper Dump but very worth it) and only 6 months back I started experimenting with mB12 and methyl-folate. (go slow, go low. I take one tenth of a pill twice a week and that’s all I can stand and all I need. I’m here for the long run.)

SLIPPING UP
I did slip up spectacular a couple of times since last Summer, at times when I should’ve known better.

One was stress related, I had to take to bed for 6 weeks last fall only because I didn’t manage my own stress levels when planning a trip to a foreign country.

Another one was cheese related (tyramine) back in September and I did damage my kidneys a bit with that one. Ouch.

Then last February I nearly killed myself because I was so depressed only to find out it was caused by a stupid shortage of vit D. That one really hurt my pride and self esteem. (Let’s hope it taught me not to take either one so serious)

Then last month I had two splitting head aches only a week apart before I figured out I shouldn’t eat 10 chocolate bonbons in one sitting (again, tyramine. And frustration about not being able to attend all knitter parties.)

Luckily, each time it took me fewer and fewer days to recuperate. These experiences make I’m less scared now of the next slip up. Or the next plateau or even dip in my recovery. Which will undoubtably come. (And if it doesn’t there’s menopause to look forward to.)

THESE DAYS
It’s only a couple of weeks back that I started to take 100 mcg of Progesterone each evening, even if it doesn’t help me to sleep. Also at the end of my insomnia stretch I now take a morsel of hydrocortisone.

These two things insure I wake up better rested then ever before, even though I lie awake from 3 till 5 AM. (theory: the supplements cover the wake up response my adrenals cannot provide anymore and this prevents the body from experiencing stress which it would otherwise have due to lack of cortisol just before waking up)

These last couple of weeks I’m very active during the day. This is by design. I believe movement will normalize hormone levels. And help the body to get rid of waste (which is extra generated through the Methylation Protocol). I also eat very little (but a lot of calories) to preserve energy. Basically it’s chicken soup, cream, butter and chocolate. And eggs. And fish with veggies, I crave fish with veggies. I take lots of HCL as that will relieve the adrenals a bit and the bile will remove waste.

Another significant thing these past few weeks is that I worry less about my body. This is an angle I pursue actively too, to keep my system out of Fight or Flight. (to aid this I have started Gupta Amygdala Retraining this week as this suits my theory of my particular case of CFS)

I take lots of valerian. I walk outside every day. I’ve gone shopping with friends in busy cities all day. I’ve driven my car for hours to a knitters’ party and back again. Twice in one week! I take a shower whenever I want. This is all very novel.

I still take my horizontal rest every day, 45 minutes after lunch. It’s the only time my intestines gurgle = work. I still take stomach aids (HCL). I take time to smell the roses. I try not to think about my body or the illness. I stop any worrying by actively intervening and directing my focus on another subject (knitting problems are always good).
I found I can do with less Hydrocortisone, as long as I remember to take my Progesterone Cream throughout the day.

I’m stumped that I get my period even when on the Progesterone daily. I take it every day, including the eve of my period and its first days and it happens anyway. Normally and healthy as …. a normal and healthy person. I feel good too. No PMS, just the littlest of cramping. The theory is that this HRT (Hormone Replacement Therapy) covers my base levels. That is has nothing to do with female cycles. Since doing this my body is at ease, both at nights and during the day. (HRT needs to be with bio-identical hormones. None of these progestins, only real Progesterone will do. In Europe Utrogestan is the brand you need, 100 mcg per day. It’s a generic drug which means your doctor has not had it actively promoted to him/her. But it’s out there. Get it.)

Right now I’m a bit intense and hyper, probably on too much vit D and cortisol. Or too much chocolate. What can I say, it’s a work in progress, a balance I need to find.
But it feels like I’ve figured this out finally and I’m on my way to better health.

It will take years. That’s ok, I’m not in a hurry. It took me years to get ill so that’s fair. And I’ll have to learn to be healthy again anyway: how does one fill a day? What does one chose to do and what not to do? How did it feel when the body was buzzing and fluent and ready to run and jump and cheer?
And: how do I keep a calm pace and enjoy happiness, every day, without feeling the need to give an account of it? To document it? To justify my existence?
I’ll learn in time.

THIS BLOG
In the mean time I hope to stop talking about CFS on this blog. I want to talk art. Illustration. Stopping the manure plant. Share original sleeping Beauty stories. Weird things my cat does. Things that interest me. Things I enjoy.

Here’s to high hopes!

pic by Andreas Krappweis

PS
a smart person over at phoenixrising.me informed me of existing links between hyperglycemia, hyperinsulin, insulin resistance, vit D and progesterone. I didn’t know but it all ties in beautifully. These enhance each other’s working.

I was diagnosed with hyperglycemia back in 2004 and have had erratic blood sugars all through 2004-2008. Only a ketonic diet has cured me of those and it wasn’t untill a few weeks back that it all started to come together and add up.

Now that I supplement Progesterone every evening, including when I have my period, ánd vit D ánd have level blood sugar ánd keep calm at night with hydrocortison ánd aid digestion with HCL ánd practice a Happy Go Lucky attitude it seems I’ve stopped the continuous stress reaction in my body. The Fight or Flight response.

I’m on my way to better health, I’m already suddenly on a 55% level (compared to 40% level all through 2013).

started Gupta Amygdala retraining

Today I started the Gupta Amygdala retraining.

It may look like mumbo jumbo another nlp guru life coach praying on gullible people but it’s not. It’s a very clear approach of a physical system.
It makes sense to me as an engineer and it fits my own research and theories into CFS and my own case in particular.

My (para)sympathethic nervous system not feeling safe is something I’ve identified as one of the factors in my illness years ago.
I had some influence on it by becoming aware of it and by having some rituals performed (the subconscious lóves rituals) but it has not made me feel fully safe and therefor recover fully. My own improvements go slow because it’s hard to design a program and follow it at the same time. So why not follow a program some other CFSer has made? Ashok Gupta had CFS, hypothesized about it, tried things out, found what worked and made it into a sound structure.

For the next six months I’ll be doing the program every day. And on Nov 5 I’ll be having a New Me Party, I guess. I’m buying into this:

I just watched the introduction/first session and it all looks good. It fits very well with my mental approach of this illness. I’ve already been doing most of this his way, it seems. Good.

The only thing new to me is recording negative thoughts in order to show the mind that they are noticed and noted. No need to repeat them, thusly.

As the way my CNS is callibrated is only part;y cause of my illness I foresee my recovery leading to a new life, different from the one I was persueing when I fell ill. Actually, when I’ve recovered, my life will not be very different from the one I lead now, only without the fatigue.
I’ll still supplement Progesterone. I’ll still have to work around certain DNA-mutations and pacing and calm happiness will be essential building blocks of my day. As is curbing my ambition and definition of a life well spend.

Imagining my life how it will look when I’m healed does not have the things I thought I wanted before: wild parties, stamina of a 17 year old, loud exciting things happening or being rich/famous/having my own wiki-entry.

Instead there’s: having a day out with my knitter friends, visiting a sheep or yarn event and laughing a lot.
and: going on a bicycle ride and stopping somewhere to have an ice cream.
Making love, with my husband, in our own bed, on just a regular Tuesday.
Hiking through nature together. Going on a kayak tour. Visiting Norway…
Visiting a spinning group in the evening and driving there by car.

Little things. Big things. Enjoyable things. Mostly that: enjoyable things. Enjoying my body and my friendships. Just being alive.

Monday: Spring, Art and Methylation

Today is Monday. I just went for my daily little walk and the air was soft. Spring! The birds were calling it too.
Suddenly I remember Spring and Summer. The smell. The joy of just being amidst green grass. Bugs flying about. How could I have forgotten that feeling?

It’s the same in the Fall. In Fall there’s that first day when suddenly you remember how it is to have cold in your body. Being cold. Somehow you forgot about it in Spring and Summer.

Today was that day for me: Spring! With that smell.

Today is Monday. Last Wednesday and Thursday I had switched to another pill for Methylation Cycle Protocol. Untill then I had been taking Methylcobalamine (mB12) and Folinic Acid. Both processed forms of the foods that are so good for you: vitamine B12 and Folate. Both of which I do not process well in my body cells due to mutations in my genes. (MTR and MTRR to be specific)(to be totally specific: I’m homozygous for MTR A2756G and for MTRR A669)

I had been taking 1200 mcg of mB12 and about 800 to 1200 mcg of folinic acid (the pill Leucovorin). This fired up my methylation cycle nicely. My cells suddenly started using “B12” and “Folate” and started detoxing.
On Wednesday I read about another form of already processed folate: Metafolin (brand). The nutriënt Folate goes through numerous steps before the cell is able to utilize it, about 12 of them. Folinic acid is the third step and Metafolin is the last. Making Metafolin the form easily absorbed.

So on Wednesday I took a pill that combined mB12 with Metafolin. I had already noticed I’m quite vulnerable to the folinic acid and thought I’d safe my body the trouble of converting it.
Thursday too: 1200 mcg of mB12 and 800 mcg Metafolin (this is pretty much the correct ratio although I think it’s empirical found, not theoretical)

Boy.
By Thursday evening I was stark raving mad. Very hormonal. Desperate. Tired of life. Convinced it was all to no good anyway. Convinced I had thrown it all away, that I was useless and that from here on it would only get worse. Life.
Luckily I know what this is. This is toxification of the brain because the body cannot process the toxins fast enough and/or there’s die-off. Here’s a good description of how it works.
I breathed through it, cognitively. I took extra Valerian, extra HCL and extra Progesterone.

On Friday I took a break from Methylation. I had that workshop Enamel the next day and wanted to rest up a little. During the day my good spirits returned. I got energy. I even withstood the bout of stress that the legal papers about the manure plant brought. Double Progesterone got me through the night.
On Saturday I took no Methylation. I did the workshop just fine. Was utterly tired afterwards and just about made it home.
On Sunday I took no Methylation protocol. I was soooo tired.

But a curious thing happened while on a break from Methylation. Art happened.
On Friday I studied online about enamelling. Found lots of art. Thought about them a bit.
On Saturday there was a piece of copper plate waiting for me to saw into a shape. This was possible because I was the only participant in the course, there was time for me to learn the techniques and deeper details. Usually they work on preshaped circles or squares. Now I got to saw.
Inspired by the workshop and having to make various pitstops on the drive home I got to think about shapes a lot ánd got to draw them on parking lots along the motor way.
Sunday I could do not much more than lay in my bed and surf and learn about enamel and think about shapes. About art! It all started humming! A lot of the old fascinations with shapes and contours and counter shapes came back. All the stuff that intrigued me when at the Art Academy. And before!

There was a small bout where I thought out a masterplan to become a professional enamelist.
But soon I realized this was one of those crazy, ambitious routes my mind takes when it wants control and assertance. (why this not english? you understand what I mean nonetheless, I hope)
So I shut down that train of thought and focussed on what ties this to my other fascinations: shapes, contours, countershapes, spaces. All my old friends.

I am ASTONISHED that this all came back to me yesterday. That it’s all still there.
It came together with the eagerness to explore. To sketch. To draw. To look. To explore with paint and fingers and scissors and colours.

Today is Monday. This morning I spend my golden hour thinking about shapes and sketching. I feel an artist again. I feel like me again.

But today is Monday. I have started Methylation Cycle Supplements again. I need to get rid of all the toxins that have built up in my body for decades. I have entered detox state again.
But at half the dose now. 500 mcg mB12 and 400 mcg Metafolin. (together with all the other nutriënts needed for this protocol: Mg, Mn, Se, I, Li, Zn, Mo)

I think this will kill the artist in me. No, not kill. Put to sleep. Wintersleep. Alive. But silent.
Soon I will enter brain fog again. Hormonal state even. Then all I can do is muddle through the day, eat my soup, take my supplements, take my walk and shed the toxins. Untill it goes better.
It will go slower at this lower dose. But I may be in a better mood.

All in all. Monday.
Spring is promised.
Artistry too.
If I can keep doing it slow, keep to two things a day, I will get there.

PS because I like it when everything makes sense I’m putting this link here, it explains why people with ME or Chronic Fatigue Syndrome need days (or weeks) to recuperate after a tiring day/event.
Especially the alinea below the middle called “Explanation of the Fatigue Problems in CFS Patients”. With all the talk about ATP.

For me recuperation time used to be three months. Then two weeks. Now two days. (6 if my gut health is involved, say with gluten)

By now it’s Monday afternoon and I can report that it seems my body has dealt with the detox of today. (I take my supplements in the morning, together with a very hearty breakfast brunch lunch). I feel the energy picking up. My brain is turning to art once again, I might do some reading. Who knows, another scribble?

5 year plan to heal from ME/CFS: year 1

I fell ill in spring 2008.
pic by Jason Antony

It took 3 years for the panic to subside and to understand a bit of what was going on and to learn that doctors prefer to have one thing clearly wrong in a body. They do not so well with multiple system failures. They were 3 years of brainfog too. I was at 5 or 10% activity level. Getting out of bed didn’t happen on most days.

The next 3 years were used to get a grip on things. To educate myself. I didn’t know what I was doing but slowly I learned about how they work: my digestion, my sleep, my hormones, lymphe, cell function, mind etc. Slowly a coherence emerged. In these years I made significant recovery. Brainfog lifted, stomach pains became less and overall energy level increased.

Especially the last year has seen me leap forwards, both in knowledge and in energy. I bought a car, I learned about my enzyme (dis)functions and only a few weeks ago I finally got to grips with my life long insomnia.
I’m now at 30% activity level of a normal healthy person while I detox. I’m at a better level when I don’t.

Now I’ve got a plan for more healing in place.

I give it 5 years, at least, since I acquired this illness over a long period of time -even if the final straw in 2008 was a virus- and my body is fragile.
I’ve seen many people make a remarkable and fast recovery only to crash a few years later. Pacing myself is going to be the biggest challenge.

PLANS/GOALS FOR YEAR ONE: 2014

  • brush teeth every day (and evening)
  • keep the house a bit tidy (vacuum every week and pick up after myself)
  • work methylation protocol (with a break every few weeks)
  • aid digestion and detoxification (eat well, take hcl, lie down and take little walks)
  • organize nice clothes to wear (sew them, buy them, trade them, felt them)
  • enjoy the more supple body (take walks, dance while putting the kettle on, shower, lift weights perhaps)
  • lie down every day, enter into Parasympathetic mode.
  • pacing. Only two things can be done on a day. Also pacing through the year: especially in May/June, in September/October and in December.

These are all tailor made goals, specific for my situation.
And they all have greater significance than you’d think upon first glance.

For example, brushing the teeth before 2 o’clock in the afternoon will get rid of bacteria that are happily growing there and will become a burden to my body during the day. I have noticed. Brushing really helps my body, I get cranky otherwise. Yes, a brain chemistry symptom for not brushing teeth… I’m weird.
(I don’t need to brush for teeth health because my diet has no sugars in it, brushing and flossing once before I go to bed is enough to keep my teeth healthy. Your milage will vary because your diet is different, the make up of your saliva is different and you probably don’t think brushing teeth is any effort at all)

(if anybody is interested in the significance of the other goals, please let me know in the comments and I’ll write them out)

This post marks a point in time. I hope in a year I get to write another one.
I sure hope I remember to take things slowly, all through the year and avery day.
It is very tempting when you feel a bit better to bite off big chunks of life. But they won’t sit well in my tummy. Two things baby, two things a day.

Hurry slow.
pic by Michael & Christa Richert

Living the plan.

I think I’ve got all my ducks in a row now.
pic by vanora

I’ve got a pretty good theory about why I fell ill and what I can do to get well. I’ve devised a plan that will get me there, in about 5 years I estimate. (better hurry slow)

Now all I have to do is live it.

Which is pretty hard to do. I’m more of an event kind of person than a structural one. I’m the one you get for thinking up a businessplan and dressing the store. Actually manning the store and enjoying the day to day runnings is not my strong suit.

This morning I learned about Angel Adoree. A remarkable woman who secured investments from The Dragons Den for her Vintage Pastries Experiences.
She’s also loved by Dick Strawbridge, another entrepeneur who gets me all excited.

Both are enthousiastic people, daring to show who they are and making a living out of their passions. And they enjoy a quirky appearance, which always gets my appreciation.

At the end of the sequence that shows how Angela pitched the Dragons and viewing her website and activities, I was crying.
huh?

Of course I’m a bit unhappy that they live the life I so long for. Doing fun things, building new businesses, doing eco-engineering, hosting vintage tea parties. But crying??
It’s these damn hormones and this sensitive brain chemistry.

I know.
My body is detoxing every day now, with the Folinic Acid and the B12. Heavy metals are floating all about. With my brain chemistry make up (MAO A mutation etc.) and my Progesteron defficiency I respond to the slightest imbalance.
I cry. I feel deplorable. I don’t want to live.

Which is why I am doing this slow, this healing plan.
Which is a drag because I’m impatient by nature and loose interest once I understand a thing. It’s new things to learn and puzzles to solve that keep me enthousiastic.

But here I find myself, dripping tears and heaving with misery. Grinded to a halt and no power left to move.
Best thing to do when feeling like this is ignore it, to make sure Progesterone and Valerian are on board, get the bile is flowing (take HCL or vinegar) and help the body move these toxins into the bile and out of the body.
That means: move. Get outside. Take that walk. Or take a shower.

Which is what I did. I went outside and did my walk.

I want to state publicly and clearly that going outside and taking that small walk in that state of mind is a mighty great accomplishment.
I deserve an award.

As a matter of fact, here it is:
Awesome-Award
which I totally ripped from this site and am too tired to figure out who made it and should be credited.
I’m awesome with flaws, like that.
But Chuck, Honey Badger and I don’t care, not today.

now swim, you bastards. Swim every day for five years and watch me win this fight in slow motion.
pic by katelyn thomas

PS stopping the N-A-C worked. I’m back to sleeping. I try and time the detoxing for daylight hours
Am slightly worried about too low cysteine levels. However, am banking on slow processes and full spectrum amino-acids (also known as runny egg yolks) giving the body plenty room for handling things.

Sleep: slept through! Theory to the test.

Last night I took a Progesterone pill and I slept through the night on an unusual day of my cycle (day 13). I woke up refreshed and extremely happy. This supports the theory I’ve cobbled together in the last few days.

The happiness came from high serotonin and noradrenaline, I felt. And of having a good night sleep and perhaps having found another sensible theory!

On a side note:
I have noticed I’m quite excited the last few days.The amount of blog posts is indicative. This is “excited brain” on display. Not a good thing per sé.
And I feel a little sheepish that you all can see it.

I think it comes from the mB12 and Folinic Acid supplementation causing all kinds of waste to come free (akin to Copper Dumps) and raising noradrenaline. (the last week I’ve laid awake for 3 hours or more instead of the usual 1,5-2 hours). Aided by the Atlas Profilax treatment that activates overall my Sympathetic Nervous System is having a good time at the moment.
Luckily I succeed at shutting it up twice a day, when I take my horizontal rests.

The only other thing I know to do is be physically active during the day (I háve to walk outside every day since the AtlasPROfilax) and lessen the mB12 and Folinic Acid. Take a small break from Methylation.

So I’m going to the motions and I know it. I hope to calm down to my regular self in the future.

COPIED POST
The post under this paragraph I wrote this morning for a Spanish guy on the RisingPhoenix.me forums that shares the same sleeping pattern as me. (should that be “as I”?)
It’s full of white space because brain fogged people need their words in small doses.

Hi,
I’ve got a theory for my sleeping 5 hours and then lying wide awake for 2, being very alert. It fits all the symptoms and medical data I have.

SHORT VERSION:
after 5 hours I get excess noradrenaline on the brain. This prevents GABA rising and REMsleep commencing and makes one very alert.

Oral supplementing of the neurotransmitter Progesterone makes me sleep for 7 or 8 hours straight. Maybe because one of its metabolites, Allopregnanolone, dampens neurons firing and promotes GABA. It is as potent as benzo’s and sleepingpills, which is what most people use for this kind of insomnia.

Progesterone is NOT a female sex hormone.

LONGER VERSION:
In the brain a small amount of noradrenaline is needed after the 4,5 hours of nonREMsleep to stop the REM-off neurons from firing and let REM-on neurons start. When REM-on neurons get active GABA will rise and REMsleep will start.

REM sleep depends on high GABA.

Too much noradrenaline makes this impossible. GABA will not rise and insomnia will cause more noradrenaline. Noradrenaline is the neurotransmitter that makes you very very alert.

Reason might be MAO A not breaking down noradrenaline sufficiently due to a mutation.

Another reason might be too low Progesterone (I have this, tested and proven). Progesterone is not a female sex hormone, it is a human hormone. Testosterone is made from it. Cortisol is made from it. And it is a neurotransmitter in the brain.

In the brain Progesterone increases MAO’s activity slightly.

Progesterone’s most profound neuronal effect, however, results from its direct effect on the neuronal membrane. Progesterone has an inhibitory effect on neuronal excitation, depressing neuronal firing.

One of its metabolites in the brain is Allopregnanolone. This is a neuroactive steroid that does something with GABA. It has a potency similar to that of the most potent benzodiazepines (Valium etc) and approximately a thousand times higher than pentobarbitals (sleeping pills).

(I still need to check my sources but this one put me onto Allopregnanolone and this one researches REMsleep)

CONTEXT:
Noradrenaline is noradrenergic, meaning to do with the Sympathetic Nervous System.
Onset of REMsleep and GABA is from cholinergic brain input, it is about the Parasympathetic Nervous System. (source here)
The nervous system is not limited to the brain, of course.

REMEDIES:
– stop noradrenaline from rising (how? how? How do I get the Sympathetic Nervous System to shut up?)
– stop REM-off neurons from continious firing (how? by taking benzo’s? by taking Allopregnanolone?)
– raise GABA (how? taking precursors?)

SUPPLEMENTING:
Taking GABA is useless, it cannot go through the blood brain barrier (BBB) because it is too big a molecule, say people on the forums here. If a GABA supplement does have a soothing effect it means your BBB is leaky (search forums on this, Hip and Gestalt say smart things about this)

Progesterone: only take progesterone, no progestins. Be vigilant about this. Read the label.

Take the oral pill, not the cream, someone one the forums here said the pill form is the only form that yields Allopregnonalone. As is my own experience too.

In Europe the (only) correct brand for Progesteron is Utrogestan. It is not over the counter. Your doctor will probably resist and needs to be educated. Both on Progesterone/Progestins and on males needing this basic hormone.

A 100 mg pill gets converted to 10mg active Progestrone (the liver filters out the rest, working hard). This 10mg is the dose a regular human body needs for a regular day, it’s a physiological doses. It is what a normal body produces on its own. Supplementing the full 10mg is too much for a man who -presumably- produces at least some of his own in his adrenals. Problem.

Females need more because they also use Progestrone to balance out Estrogens. Their physiological dose varies every day and can range from 10 to 60mg. (60mg on day 21 of cycle)

Larger Utrogestan pills (200/500mg) are for females in pregnancy. They may need much more than the daily 60mg to keep their baby on board which is where the hormone gets its name: PRO-GESTational-hoRmONE and our association with it being a female sex hormone.

HRT = RISKY
There is no knowing in advance how your body choses to convert the Progesterone. It may raise your Testosterone, your Cortisol, your Aldosterone. Taking too much may numb the receptors or lower your own production.
HRT is risky business. Always start low and go slow.

10 mg Progesterone is excess of what a man needs, I feel. I’d want 20 or 50mg pills to start with but these are not produced. You could cut open a capsule and take only the white liquid, I guess. It looks like paint.

One thing about taking physiological doses is that your body is able to get rid of it within the day. You are not overdosing as is often the case with conventional HRT or other drugs.

ME/CFS people probably have decreased capacity for elimination so should even take less, of any drug or supplement. On a positive note: we notice effects sooner so small doses give us information fast.

MY EXPERIENCE
On some nights I take 100mg Utrogestan pills for my menstrual cycle and then I sleep through the night every time, unless it’s the last week before my period. I was told sleepiness was a symptom of too high a dose. Now I am not so sure. It feels awful during the day and I avoid it. But at night I sleep well and wake up with new vigour. And now I found a plausible explanation for it.

As long as my liver can stand it and I wake up feeling refreshed I am now taking Progesterone at night. The correct thing to do is find out with how low a dose I sleep through. But because my need as a female differs each day and I have CFS I’m not up for cutting up pills and taking notes yet.

For you I have no quick solution, sorry. Only this theory that, to me, makes sense and fits both our symptoms.

UPDATE
I just learned the antibodies to GLUTEN also block conversion from glutamate into GABA.
Leaving ones brain with too much glutamate (*boing! boing!*) and not enough GABA (zzzzz…)

source = http://neuroendoimmune.wordpress.com/2014/06/03/is-gluten-making-you-overstimulated/

ME/CFS: How I got rid of my structural brainfog.

I wrote this blog entry for the ME forum RisingPhoenix.me
I’d thought I post it here too because it might help someone who hasn’t found that forum yet.

I noticed my daily brainfog has now lifted, it has been better for a year and a half now. I think I can name some things that helped this:

1. HEALTY GUT
I have a strict diet called Homo Optimum. In this you get your energy from fats, not carbohydrates. Because of this I eat very little, thusly sparing digestive energy. I also stopped eating anything that upset my tummy or my brain. This includes ‘healthy things’ like all vegetables, milk, nutmeg, garlic, plant based oils. I’m not arguing with my body, if it upsets it I skip it. Symptoms are abdominal pain or excited brain

2. DIET
I now mainly eat egg yokes, cream, chocolate ganache and chicken soup (from scratch). With salt and vinegar.

3. LEVEL INSULIN
No blood sugar peaks anymore. Eating a fat based diet helps this.

4 MINERAL SUPPLEMENTS
full spectrum supplements. All minerals aboard! Yes this makes for expensive pee. But my cells are missing nutrients and I need to offer them. Gradually I found some supplements don’t feel good (B6, Calcium) and some I nééd (Magnesium, Lithium, VitD3). Adjust accordingly.

5 CORTISOL SUPPLEMENT
structural supplementing with hydrocortisone. My adrenals were not well, confirmed by tests. I’ve gradually aided them with hydrocortisone (5mg per day). Once I started supplementing structurally about a year and a half ago the brain fog lifted permanently (10 mg per day). It also put my adrenals out of commission six months ago, they stopped working altogether. This was a risk I took, I’m not whining. (In the future I’ll see if they want to start again, for now I’m supplementing 20-30 mg HC daily and feel good on it)

6 NO STRESS
serious downgrading of daily expectations. You know the Spoon Theory, I presume. I have about 5 spoons of energy for one day. Getting Up in the Morning, Getting Dressed, Getting to Bed at Night, Shower or Cook a Meal. That leaves one spoon for something else: Write a Letter, Call a Friend, Clean the House, Make a Drawing, Post a Letter. I choose one and only one of these each day. And am content when I achieve it.

7 TAKE HORIZONTAL REST
serious resting. I need to go lay down 45 minutes after I had a meal. This is crucial for digestion. The 45 minutes between eating and resting are a Golden Hour, a little time I can be active. But after that: need to lie down. For about an hour. Or two. Under a woolen blanket because I’ll get cold.

8 PROGESTERONE SUPPLEMENT
calming the system by supplementing enough body-identical Progesterone. This is not a sex-hormone. It is the precursor for all adrenal (medulla) hormones and a soothing neurotransmitter for the brain, in men and woman alike.

I’ve done most of these things from the moment I fell ill, in 2008 (6 years ago). I didn’t get them balanced until a few years ago, that’s when things really got better.
The first few years I had structural, debilitating brain fog. All day, every day. Couldn’t keep my balance, couldn’t remember my name.

LUCKY BREAK: USING MY DNA MUTATION
I had the fortune though, of having two hours of alertness during the night. This is not illness-related. It’s because of my natural tendency to have too much excitatory neurotransmitters ((nor)adrenaline, dopamine and serotonine) in my head. The very opposite of brain fog! It’s because of a DNA mutation most people see as a burden (mao a)

This causes me to lie awake after 5 hours of sleep every night, I’ve had this from birth. (In fact, I’m using it to write you this)
Even when brainfogged during the day I would still have this alert insomnia episode at night, able to read medical journals and leave notes for the brainfogged-me to follow during the day.

I’d wake up and find a note with “magnesium!” on it. And have absolutely no idea what to do with that…
Nighttime-me quickly learned to write better notes: “order magnesium-citrate from xxx.com and take half a pill in the morning and at night.”

ON MY WAY TO HEALTH EVEN WHEN I WAS BRAIN FOGGED
Because of this nightly trait I was able to do the following reasoning when I got ill:

  1. this is a system wide failing. There’s no way to pinpoint cause and effect, all major systems are down.
  2. this also means it doesn’t matter where I start to tweak the system. Anywhere will do. I choose nutrients. Cells and body need nutrients to work.
  3. what are the nutrients scientists give cells in their petri dishes? That’s what I’ll start feeding my cells.
  4. I notice my poo is light and floating. On this poo-site it says it lacks bile. Biology101 says bile is produced in reaction to stomach acidity. I need to acidify my stomach acid. Order betaine HCL (This might aid digestion too.)
  5. I notice my blood pressure is low (90/60). Hey, low blood pressure is a good thing, right? Oh merde, it actually means blood and nutrients aren’t pushed into tissues and cells. I need to aid this, I need to raise my blood pressure. Or lower other demands on its system (like standing up). And/or “pulling” blood into the tissues by activating the back office system: the lymphatic system.

So that’s what I started doing. Amend nutrients intake, uptake and delivery into the body cells. And removal of their waste.

On step 2, when I chose where to start helping my body: I had to choose one thing. I couldn’t follow multiple subjects, I just didn’t have the brain cells for that. But like I said, I deduced that it didn’t matter which road I chose. The body would respond to any which one.

Other choice options I felt I had were: trying to restore Sleep; Hormones; Stress Level; Nervous System or Immune System. I touched upon all of these in the following years. I cycle through them it seems. Only DNA has been new to this list. And Immune System has never been much of a topic with me, it seems. Probably because of low cortisol = high immune activity. And initial tests didn’t show Lyme etc.

BE KIND WHEN BRAIN FOGGED
In the first years, when so severely brainfogged, I had lots of notes on the fridge including which supplements to take and reminders to put on a woolen hat and the central heating and to make tea for myself often. Because I’d get cold and then felt extra miserable. But I would forget to put on the heating. Or felt I was not worthy to spend the money on heating. Yes, brain fog comes with silly notions.

That’s why I had my mum or my husband or even strangers write notes: “put on heating! enjoy a warm foot bath. You are allowed to.” To battle these weird thoughts.
There would be love notes there too, just to remind me someone loved me. That I love me. Picture of a pet.

TODAY ONLY OCCASIONAL BRAIN FOG
Nowadays I am free of brainfog on a daily basis. I do get fogged now and then but it’s always tracing back to something I ate or when I did too much. It lifts when I go rest or sleep. When it’s because of food it may take a few days to subside. Or two weeks if I really messed up (aged cheeses, delicious gluten bread, having a piece of cake on a birthday, experiencing life stress). I avoid this now, it really is not worth my time.

I realize this is only what worked for me. Strongly based on my personal signature of this disease. For example, in time I learned I am Progesterone deficient and have excess of those excitatory neurotransmitters and have a belly that doesn’t like gluten and an immune system that’s going strong. This will be different for everyone on these Forums. (I’d say I have CFS, not ME)

GETTING THROUGH THE HAZY DAY
What is the same for everyone though is that we need the substrates for our cells (take salts and minerals) and that we need the bloodpressure to get them to our cells (lie vertical, take salt or HC). We need to eliminate waste from our cells (stretch and yawn while you lie in bed, drink warm water, get bile flowing) and we need help when brainfogged (have a supportive list on the fridge, then try and remember to look at it)

And most of all, I remember the difficulty of getting through the day when severely brain fogged. In the end I did so by only trying to get through the next half hour. That was all I needed to do. Survive the next half hour. That’s doable. You can do that. And remember: you’re worthy of a warm body, wear your hat.

Holle time: the daily checklist

Here’s the checklist I made up. On it all the things I need to do and not forget. I structured it around the resting moments. I can’t believe it took me all day to make this… I’m so fogged!

I want to use this so I don’t have to remember everything. Green is a good colour for it.

On a day that I have no plans this is what I’d do:

dayplanner

About the resting:

  • lie down and have something to do. Couch or bed. Lie flat. Wear hat and wristwarmers. Cover with blanket. Earplugs or ear mufflers. Time to go into PNS mode. Use Faraday tent.

About the cortisol:

  • hydrocortisone should be taken about every three hours. Doses getting smaller through the day. Make sure you get at least 10 mg on a day that you’re doing nothing.

planning things in advance is crucial:

  • lay out new clothes, prepare faradays tent, prepare things to do when lying down: sewing, embroidery, writing on computer (not ideal!), sketching, knitting something difficult, what will I eat when, when will I cook it, when and who will buy it. What’s the address I am going to the next day?

doing things in steps is better albeit a bit messy:

  • cooking, cleaning, knitting

FOOD for the next weeks:
on Monday the 16th I’ll prepare a fatty steak (riblap). This will hopefully feed me until Friday.

There are two or three more steaks in the freezer in the city. I’ll cook one on Fri 20 and on Mon 30. I’m running out of dinner on the first weekend of January. Ask Robert to go to the Organic Shop and get me some by then. We won’t be able to visit our regular farmer until Jan 10.

Alternatives for steak are chicken soup from the organic shop, fish from the fish stand, liver wurst, eggs. The butcher in the city (might he have organ meats? They won’t be organic…)

We’ll be needing organic eggs somewhere in the next few weeks, I’ve only got about 36 at the moment (2 for breakfast and some for the cookie dough)

Do we have enough spices, coconut oil, pickles, liverwurst, chocolate, cream and butter? (?, nah, no, no, yes, no and yes)

Bring with me from the cabin to the city:

  • red LeCreuset pan, filled with steak and ready to cook the new one in a few days.
  • the good cream whippers, both electric and hand operated

there’s still the issue of the laundry…

Today, Monday the 16th, I had an awful day. I feel very weird. Utterly miserable, in my body and in my head. My chemistry is totally messed up. It could be from the four cookies I ate yesterday. Which drives home the point for the coming weeks:

don’t cheat, don’t eat bad things.

pic by Michal Zacharzewski

BAD THING TODAY:
As today was miserable I had to cancel the wool spinning group tomorrow. I’m sad about that. It’s been almost half a year now since I last saw them. Every month I have hopes and this month I was going to go for sure. I’m nearby, I have a car. But alas.

It was also suggested to me that I better postphone the appointment I have in Amsterdam on Thursday.

I’m not ready to that. Although I do recognize the sound sensibility of canceling. It would bring rest. It would mean I get to decorate the tree. Get to prepare for cookies.

But canceling feels, at the moment, as some sort of surrender to the illness. And I’m utterly fed up with it and not prepared to surrender. I’m very angry at being ill at the moment and it’s the reason I’m so attacking this illness from all different angles for the last couple of weeks. It also keeps me very wired and this is counterproductive, I’m well aware. But for now I have no zen. I’ll sleep on it and then I’ll reschedule it to the New Year because I’m such a good girl grrrr

 pic by Iris Scherer

GOOD THING TODAY:
A good thing for today was that I followed up on my good intentions and lay down this morning, one hour after breakfast. Properly down too, all horizontal, tucked in with woolen blankets and the cat. I had remembered to take the bare minimum of supplements including a digestive aid. My belly rewarded me with rumbles and I felt proud and grateful.

So that’s how far I’ve come. A schedule for when I’m not doing anything. I haven’t figured out yet how to juggle the things on the schedule and the things on my calendar.

For one thing: resting after eating will be skipped. This probably means I shouldn’t eat for nutrients on those occasions but for energy. Lightly digestable foods.

I’m glad with the schedule. I think it’s good that I identified a few slots of time where I can just walk around the house and pick up on things that need to be done. Hopefully one of them will be laundry because I’m running a bit low on things to wear.

also by pic by Iris Scherer