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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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.

 

a still life of lemons and art

Soon I will have to sit down and mark my limitations and sketch what forfilling life I can lead within their parameters. It’s now sinking in that I will not recover from ME more than I have. And that I’ve already lost some of that improvement. It hurts.

pic by Keith Syvinski

I can’t sit down now because I’m still in the turbulence of a hormonal week. My feelings are not my own. My thoughts cannot be trusted. I question life and everything. I hurt very deeply.
It’s a tiresome affair to manage. Because no matter how unjust these feelings are, they are still felt deeply. These emotions and thoughts are caused by chocolate bars I ate last week, one every day for six days. It may have been the sugar, it may have been the soy lecithin. Something caused too much estrogens in my brain and I’m totally of my rocker.

pic by Jeremy Hanke

I have to wait until this clears my system before I can sit down and deal with life.

One thing that confuses me is how true and profound the thoughts are that too much estrogens provoke in me. Thoughts about life, the essence of life, the existence of man, the meaning of mine. Paired with the strong feelings I cannot help but wonder if there’s not some truth to them. If they should not be addressed, thoroughly. But I know I shouldn’t while I’m still weird in the head. Time will once again prove that this is not me, these thoughts are not me, these feelings are not me.

I hope soon to sit down and converse with myself about the real things. The parameters and living within the limitation thing. In the mean time life goes on, every day.

Today I’m rewatching an excellent British documentary about painting stil lifes.
It resonates with some things essential in me. Some essence of me as an artist. Of me as a human. Of me as a Dutchman. And of me as a chronic ill person.
I cannot sort these into separate labels. They overlap. And have something to do with the meaning of life.
It’s confusing and exhilarating at the same time.

To name just a few subjects they touch upon, in no particular order and in now way conclusive:

DAILY OBJECTS
There’s talk about the importance of everyday objects in our life. Things you touch every day. Their colour. Shape. Texture. Handling. Weight. How they look in the different light throughout the day, throughout the year.

pic by Ruth Harris

You touch them every day. Your body communicates with them.
You see them. People are eye-animals, they revel in seeing things. When an object forfills its visual promise with an appropriate tactile experience perhaps even a smell, that’s simply heaven on just a common day. It’s what life, as a human, is about. In part.

DUTCH GOLDEN AGE
The explanation of how Dutch society got to get a Golden century in the 17th century when money was flooding into the country and everybody was buying paintings to decorate their houses with and also selling houses just to buy one single tulip bulb or at least own paintings of tulips. While there’s still a Calvinistic streak running through us chastizing us that we should not be vain or enjoy possession.

Ambrosius Bosschaert, the Elder “Tulips in a Wan-Li Vase”, 1619

This importance to enhance your living quarters. This persists right up to today where IKEA caters to this need and we all long for something that’s displayed in adverts of Nordic and Japanese interiors.
(It makes me think of one of my dear books about Mexican houses. With warm colours and bold materials and much art of local history)

Somehow your house, your room, your things tie you to your place in life. Your identity. Your time of living. To your country. Its history too. You take your place in your era and in your location as you decorate your living surroundings.

Pictures in your house do something. But only as long as you keep seeing them, as long as they don’t become invisible.

IKEA art by Mike Toy, prone to invisibility.

I think there’s a chance for a new kind of “pictures”. No longer the posters that you frame and hang. No longer the mass catering IKEA does. Something else…
Something that ties you, your soul, to a wall, to a room. And reflects you back to yourself.

THE ART OF PAINTING
Ahh, the talk of shapes and composition. How mainly in Western paintings the light comes from the left. The documentary proposes that this is because we read from left to right. But they do not offer non-western still life paintings that have light from the right.
I think it’s as probably we prefer light form the left because we like to face south in daily life. And then the sun rises on the left.
Light from the left reminds us of this promising event, when the day is still young and full of opportunities.

This talk of the mechanics of art make that I see its components all around me, right where I sit, here at this cluttered table with a funny lamp beside my laptop and a cup full of colour pencils.
I see shapes and textures. Compositions and directions. I love it. Having an artist eye makes that you are never bored. Even if you cannot sketch anything because you are too weak to hold a pencil.

art by Milton Avery

Well, there are many things in this documentary that make me happy. That provide me with beauty in thought and sight.

Isn’t that the weirdest thing, that one can hurt so at the core and have questioning thoughts about the essentials and be happy at the same time?

Here’s another picture of shapes and colours and composition but also a story. I think it’s beautiful! All the round shapes…

affordable art by CorellaDesign on Etsy

I’d like to do this very much. So much it aches. So much that I have not thought about this for years, because the hurt was too great.
Now I’m thinking about it again. Want to do this. But I am crippled. Crippled with ME but more so with something else. With life, I guess.
I hope to sit down soon and flesh it out. Find a way.

Here’s the description the BBC website had of the documentary:
Apples, Pears and Paint: How to Make a Still Life Painting
“A richly detailed journey through the epic history of still life painting, featuring a range of delights from the earliest existing Xenia mural paintings discovered at Pompeii to the cubist masterpieces of Picasso.

Awash with rich imagery of fruit, flowers and humble domestic objects, this lively take on the story of still life encompasses the work of some of the genre’s greatest artists from Caravaggio to Chardin and Cezanne. But it also captures the surprising contributions of the less well known, including asparagus enthusiast Adriaen Coorte and female flower painter in the court of Louis XVI, Anne Vallayer-Coster.

With contributions from historians Bettany Hughes and Janina Ramirez, art historians Andrew Graham Dixon and Norman Bryson, and philosopher Alain de Botton amongst others, it opens up the huge social histories that lie behind the paintings and the fascinating lives of the people who made them.”

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.

Running Scared

I’ve got two kinds of scared going on at the moment.

One is a result of the gruesome murder mysteries I watched on my first night of a fortnight alone in the cabin in the dark, dark woods. Not so smart.

Two is having some success at treating my disease but not finding many people who recover from it permanently. As in… there may be a hand full of them out there. World wide.
Most people who make a good recovery only find themselves crumbling to pieces a couple of years later.

I am really, really scared.

pic by Ron Jeffreys

WATCHING SCARY MOVIES WHEN YOU’RE ALONE:
It’s the first night I’ll be sleeping alone again. I’ve been spending the last couple of weeks together with my husband, with me being in the city and all. There’s a good comfort in sleeping in a room with someone else. At least there’s one other pair of ears to hear trouble coming.

But I needed some time alone. To recuperate from the city impulses. To experience silence. To be alone with my thoughts. And to please the cat who loves to be here, in the cabin, and is pretty bored in the city.

So here I am. Two weeks in the cabin. Shifting from city-glamour-fairy to nature-knitting-gnome.
I was a bit bored on the first night, having to lay on the couch, so I watched some British murder mysteries. That’s allright.
Then something out on the porch went “boonk.” And the cat woke up from her slumber, looking worried. When she does that, that really freaks my out.

pic by Angel Norris

I had to relearn all the things I learned the first time I started spending time alone in the cabin here. That I am like a bird, hidden away in it’s nest. That I am invisible to most of “the people out there”. That I have a leftover habit from childhood of not having a basic sense of safety. That statistics are on my side: as I have seldom experienced a night with a burglar or fire in my life, chances are that this night will be a repeat of all those tranquil nights. Put your fate in probabilities, darling!
Put in your earplugs, make like a woolen blanket burrito and go to sleep.


BEING SCARED WHEN YOU’RE HEALING

This is the real thing. This doesn’t go away with a solid bit of reasoning.
I’m scared because the things I do seem to be helping.

pic by Andrea Kratzenberg

The egg yokes and chicken soup I eat nourish me. The Zinc level I restored over the Summer works so well, I now crave Zinc every day. The Atlas Profilax, I now crave a walk every day. The laying down I do, my small intestine is so grateful. The HCL I take, my bile is working. The Progesterone I take, I am more at ease. The Progesterone pill I take at night, I am sleeping through the night. The diet I have, I have more energy and less moodswings. The mB12 and Folinic Acid, I’m working towards daily equilibria. The pacing I do, it gives me more good days and rekindling of some of my basic interests. The stress(y people) avoidance, works like a charm.

I’ve more or less created all the conditions for healing. There’s not much else I can do, it is now up to my body and time to get better.

That’s one scary thing right there: I’ve tapped into all the resources available. Conditions for healing are now pretty much optimal. Meaning: there’s nothing else I can do, I have no options left. This is the one basket, these are all the eggs.

Let’s hope this hand basket is not going anywhere bad…
pic by Slawek Ujma

Of course I’m hopeful that I am on the right track here. That I will continue to get better.
I even started dreaming of healing fully. Of growing old healthily.

But when I search for people recovering from ME/CFS I find but a few of them.

A lot of people make recovery. Some quite remarkably! They find a magical thing that works for them and they recover and start living life and raising puppies and running marathons.
But then they deteriorate again. Over time they grow worse than they were before.

There are not enough people permanently healed from ME/CFS out there! There should be more!

There’s a myth on the ME-boards. The myth of the invisible recovered people. We don’t see them because, when they recover, they leave the boards and start living again. They are enjoying their health. They have no time to return to the boards and tell us what worked for them. The myth is that people dó recover. But we never hear from them again. With good reason.

The recovered people who do return and tell their story are often met with skepticism and loud demands for solid medical proof. Or they are told to come back in five years because only then can one really claim to be recovered.
Or there’s just plain denial that they were ever properly ill to begin with. There’s a real ME-mafia out there that wants to be taken seriously by doctors and therefor shuns all associations with Adrenal Fatigue or CFS. They are quick to deny someone the diagnosis of ME.

But even if they don’t return to the boards to tell their story, recovered people must be somewhere. And they must be reminiscent and voicing that somewhere online. I want to find recovered people!
Because I have not yet. And that scares me shitless. Because all the recovering I do can be just that: a prelude to a disheartening relapse in my future. And if there’s one thing I never want to go through again, it is the first phase of this disease. When all systems fail, your personality is wiped out and you are withering away.
Especially now that I am all tapped out on resources. This is all I’ve got.

I’m scared.

pic by Maciej Perek

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.