Found my train of thought: intracellular parasites

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

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

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

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

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

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

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

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

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

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


the reason to live.

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

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

pic by Neil Gould

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

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

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

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

pic by Asif Akbar

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

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

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

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

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

pic by Neil Gould

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

New theories on ME/CFS

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

 pic by Vincenzo Piazza

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

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

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

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

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


I’ve lost my train of thought. grrr

here’s the research paper on infection of the Nervus Vagus in relation to ME/CFS:

here’s the post on infection of the endothelial cells:


 pic by Mark Morcom


Don’t eat much.

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

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

pic by Shannah Pace

Which is why:

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

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

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

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

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

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

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

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



I found a pinterest board titled “Someday”.
It had pictures of tropical beaches; of rocking chairs on lazy porches; of a luxury bath with a mountain view. Ahh, places to dream of. A life to long for.

pic by Loretta Humble

Someday, when you’ve got enough money. When you’ve got enough free time. Someday…

No sooner find I myself thinking: “Oh, yes, so beautiful, I wish I was there!” or I’m reminded of the gushing comments people make when I show pictures of life in my cabin in the woods:

“So romantic! So much tranquil nature! I wish I was there!”

But I know the truth. I know these pictures are lies.
(hint: there’s no such thing as tranquil nature.)

The facts of these pictures are that my lovely cabin has clammy air and noisy mice. It’s always dark and cold inside because it sits under trees. The trees attract mosquitos and where there are no trees there are horse flies. Sitting outside there’s always traffic noise and the smell of some decaying animal. The neighbour is a farmer who spreads manure on his fields every other week. My other neighbour needs to mow his lawn every weekend and has a wood sawing obsession.

The pictures in the pinterest board “Someday” lie just as much.
pic Bert van ‘t Hul

Palm beaches are riddled with noise and people hassling you and uncomfortable endless winds. There are bugs in the sea and bugs in the sand and bugs in your hair and bugs in the air. There’s no such thing as paradise. It’s always everyday life with everyday nuisances.

But I completely understand why beautiful pictures of places make us (me) long for a different life, somewhere else, somehow tranquil.
It’s because we are eye-creatures and it’s because we like to live in the future.

It’s amazing how fond we are of our sight. I keep marvelling at this fact of life.
Colours, patterns, movement. We humans adore them and we’ll change our surroundings to have more of them.
It’s why we love random patterns and designer cats.

So pleasing to the eye.


Pictures of a dream life often thrum up a list of conditions that First have to be met before you can start living the dream.
first you’ve got to get enough money. Then you’ve got to find the right place. Then you’ve got to build or decorate the place just right. Then you need the right clothes and the right partner. Oh, and you’ve got to get the right weight and body because the one you’re using now to haul around your eyes, it’s pathetic and you know it.

But once you meet al the conditions then… then! Then you can sit back in the designer chair with beach bleached surroundings. Then you can finally take a deep breath and enjoy your understanding and appreciation of life.

“Ahh…. one with nature… one with life.”

Yeah….. No.


We do not need to wait until “someday” to enjoy leisure time on the porch. Or to enjoy the feel and smell of wind dried linens.
We do not need a new interior to appreciate a harmonious arrangement of furniture and furnishings. And we can forget about that body. (Oh how we’ve been conditioned to hate our bodies, no matter what shape or condition it has!)

All we have to do is lay back on the couch and take a deep breath. It’s all right here. All the appreciation and divinity of life we ever wanted.

No need to meet requisitive conditions first. It’s all right here already. In a different shape than your brain was conditioned to believe you needed, that’s true. But it’s already here.

Anything will make a pleasing composition:
pic by Julia Freeman-Woolpert

Any cat is a cuddly companion that delights the eyes:
pic by Wrhoana R.

The fresh air of the beach is just a train ride away. Go take a walk there. Walk somewhere else and smell something else.
Any trow can make your chair into a designer experience. Use your bed blanket. Or a woolen coat. Just be inventive and present yourself with a new experience.

pic by Sanya Obsivac

It’s amazing how valuable a minute is. This minute right now?
How long it lasts! For me to just sit back and do nothing but stare a bit around me for a minute is pure luxury. I might even get bored.

As I lay back resting, forced to take all the minutes I need for my condition, I like to wander my eyes over my regular Joe surroundings and feast them on patterns, colours and compositions that are already here. In my cluttered, non-designer-approved home.

Feeling guilty for not cleaning the house? Nope, it’s just another composition to please my eyes:

 pic by Thomas Bedenk

… I’m an artist in my own mind….

And that’s the thing. I, and neither you, cannot afford to post phone life until we win that lottery, get to that dream place and start living that dream. The chances of getting it are pretty slim.

It’s the now and here that we’ve got. And it’s all we can handle, probably.

The only thing you have to spend is time. Time to sit back. Live through a minute of “nothingness”. No to-do list. No chores. No ambitions. No guilt.
It’s pretty hard to do, actually. Our minds are alway buzzing. Our eyes always catch the thing that is not right yet, that needs a better job.

But there is not enough time. There’s not enough time to do all the chores. To do better jobs.
Frankly, you don’t have the luxury of post phoning however you were going to spend your minute once you’d have that beach house or that dreamy porch.
You’ve got to spend your minutes right now, as if you’re living the dream. Waste them now!

Relax and enjoy your life, amidst the clutter and the rubble and the things not right. The minute right now, that’s all the luxury you get. And my, it is a treasure.

pic by David Butler

I love how in this picture some small things have elevated this living space to a dream space: blue railing; tulips; lucky moss on the bucket. And a cat. Now go sit near it for just a minute and enjoy what you’ve already got.

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:

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.

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.

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.”

The need to reinvent myself. Again.

Here I am. It’s not going splendid. But it’s going.
I feel I need to come to terms with my current level of health. This is it. It’s not going to get better.

I’m worse than I was 3 months ago. But I’m better than I was a year ago. I can be thankful for that. Health wise, I think this is it. This will be my base level.

That means I can now, once again, take stock and identify my probable daily energy supply. And adjust my expectations and my plans to this level. And then start living them, instead of spending all my energy managing my life, my day, my body.
I’d love to live life again, even if it is within these limitations.

 pic by bugdog

I’m still a bit blue over the health I gained and lost again in the last 6 months. I have no illusions about making up for that loss. It truly feels like I’ve hit a ceiling. It’s in my bones, my gut. Not something I just thought up.

I’m also blue because I feel age creeping up on me. In a few decades I’ll be old and things will probably deteriorate fast. It’s not like I’ve got a lot of buffer, I have maximized my potential already. The thing I dread most is the extra time and energy I will have to spend when my body deteriorates further.

These past two weeks there’s also a lot of toxins floating in my brain which is a big nuisance to live with. And GOdamnit, I forgot to take vit D today!
that’s not helping the brain moods at all, that’s for sure.
I’ve been feeling awful, thinking awful things, wanting to snap at everybody (on the internet because I keep away from people in real life). All the while knowing this isn’t me. But knowing something doesn’t make the feeling go away.

 pic by Andrzej Pobiedziński

Also, I ate a lot of carbs over the past few weeks. Even made some custard pudding flavoured with commercial cookies and pine apple juice. I think my body sacrifices a lot of minerals when it has to cope with carbs and empty foods. I may have depleted the mineral supplies I’ve build up over months.

Well, back to chicken broth and mineral supplements (which might turn out just to be expensive pee) then. Sigh.
And I’ve got to kick my body into gear, get it moving, because nothing clears out toxins and levels hormone levels like moving does. Just a little walk around the block will do.

I’ll start by dragging myself of the couch now and get some broth and vit D in me. I hate how everything is a mental struggle, while I KNOW I’m an enthousiastic, cheerfull person by nature. I think I could handle the low energy and battered body better if I didn’t have that brain toxicity to deal with too. It just robs you of your identity, it makes you just drag an empty shell through the day, wasting precious time.
(But I guess it could be worse. I could mistake my false feelings for my true soul. At least I’m not confused about who I am, even though I do not get the chance to shine trough.)

pic by Sue Byford

13 mrt: back on track

Only this week I got back on track. Since the last post I’ve been ill. Six weeks lost.

My liver stopped functioning. My brain went too. Digestion failed. Skin wouldn’t heal (small regular things like cat- and rose- and oven-wounds).
All caused by the two weeks of severe stress we had at the end of January/start of February.

The liver thing I had checked out because after ten days of no bile I run serious risks what with cholestorol and waste not being expelled. And I need my liver for converting both cortisol and progesteron. But an echo and blood work all looked good. That’s when I knew it was “just” stress,
It hurt too. A heavy, dull pain, like I was carrying a brick around. Could only sleep on my left.
I was nauseous all the time. I switched to a liver diet, forget the fat and protein.

The other thing was that I just couldn’t relax. I was wired all the time. Not so much anxious or scared, luckily, but not at ease and not able to lighten up, even though the stressors had now gone from my life. Cat was healing, my liver was ok, I felt loved and cared for.
I just couldn’t remember how I’ve lived the major part of 2014, when I was in tune with life and time and felt profoundly happy and was living in the moment.
I noticed that I was trying to reach this place again by thought and that’s not how you do it.

Brain was fried too. Couldn’t knit. Couldn’t sew. Everything was wonky and slow going and a mess. Just as well since I couldn’t sit upright at my sewing table for twenty minutes anyway.

So I just took it slow. Cleared the scedule. Reclined in bed. Rest rest rest. Ate light meals (mostly fresh fish made into broth with venkel or witlof). Cuddled the cat who’s slowly recuperating. Stayed indoors (not by choice, I just couldn’t be upright long enough) and tried to be positive about that. Took extra vit D (75 mg per day on some days).
And tried to keep the worries at bay.

It paid off.
Within two weeks my bile started flowing again. I knew digestion was back on track. Confidence seeped in.
There was a set back when the engineer’s rapport for the court case about the manure plant had to be written, unexpectedly and within a day. I pulled it off, I had to, but my body was pleading with me. Digestion luckily stayed functional but mentally it was a set back.

It’s only last week that I started to breathe lightly again, refound that “zen” feeling. Was happy in the moment again. I don’t know how I got to that, it just happened. It’s more of a habit than anything else I guess. You can’t just decide to do it.
– o wait, there was a significant moment, I now remember. I was sitting on the couch, with elevated feet and wrapped in a woolen blanket. I was knitting a simple yet interesting sock and watching a documentary about the brains of people who kill. These people often have different functionality in the amygdala, the frontal cortex, or both. Depending on wether they are a spontanious killer, a psychopath or a psychotic chizofrenic. (This is all in broad strokes. It was not a very good documentary.)
It has somewhat to do with how impulses get dealt with within the brain and whether rationality gets a chance to butt in and whether social guidelines are installed in the individual for rationality to build upon. Literally installed: pathways in the brain. A psychopath doesn’t have them by nature. A certain type of killer doesn’t have them because of what he experienced as a child.
I picked up on the other subject: the amygdala. Some killers lack a filter to handle the intense emotions amygdala can cause. They act on impulse, the frontal cortex doesn’t even kick in. Or the frontal cortex does get involved but is used to accommodate the amygdalian impulses: paranoia and delusions make you crazy.

I had a fleeting thought about how I managed to become friends with my amygdala, only last year. I sighed in relief. And there it was again, the peace.

About the same day, and it was only the day before yesterday actually, my brain became fully functional again. Solving knitting problems and the ability to make decisions and choices is now possible again.
It had already started a bit in the last two weeks with correct sewing and choosing to buy yarn because I desired it but these were still things that happened in a not-clear way. More intuitive.
Now my logical and decisive skills are operational again too.

I have not dealt with the fact that I “lost” six weeks yet. All the plans I had that have been cancelled. Visits. Drawings. Producing things to sell to spinners. Nature maintenance at the cabin. Exercise.
I’m sour about those. Haven’t dealt with these feelings yet.

My body took a blow. My shoulder injury flared up. I’ve visibly grown more grey (as has the cat). My body’s grown older. Skin has not healed. I’ve grown a bit “flabby” here and there. More lines in my face.
It seems me and the cat have sacrificed one of our nine lives.

But there we are. A major stressor. A set back to severe bed bound health. Six weeks recovery. Back on track.

It has underscored that I am not a healthy person and that I need to lie down every day around 11 o’clock in the morning. To reset to “relaxed” and to digest food. If I do I do well.

I hope next week I can take up walking again. And drawing.

Btw, sleep has been good all these weeks, overall. Eleven to seven.

Minor set back. Hopefully.

Yesterday I crashed. A good proper ME-crash. It came right after I had a bowel movement on the toilet (just regular, not strained) and when I entered the room all energy drained away. I wonder how that works, what systems are involved. Homeostasis. Nerves Vagus.

It took me an hour to find out that this was not about adrenals or cortisol, this was good old ME. I rested in bed that hour. It’s not uncommon for my body to lose its footing after a #2 or a shower. An hour rest will usually remedy it. Then it’s just the adrenals. (snicker: “just”)

But not yesterday. I could not sit upright after an hour, even with extra cortisol on board. Not after two hours. Not after three. So I’ve been in bed yesterday all day. Today too. Eating chicken broth. Sleeping with the cat. Thinking about knitting (Can’t actually knit). Supplementing with lots of HCL. Trying not to freak out (for this I need to talk to my husband, to put my thoughts in order. Another symptom of ME, when you lose sight of whats important and/or logical and/or probable). Luckily all these “hacks” worked.

I had a peaceful day. Two of them.

The reason I crashed is that we’ve just had two weeks of stress because the cat got terribly ill. She had to be rescued by the vet with oxygen and a drip and the works. Loosing her was suddenly a real option. I bawled my eyes out for a few days.

Then we had to snap into gear and make difficult decisions. A quick trip to a specialist far away had to be planned and carried out. And ten days after it started the cat pulled through and we could reconvalence together. We slept for two days in my bed. The cat continued sleeping for another two days and I walked around weepy and chagrined. Two hormonal symptoms easily explained and treated with mental hygiene, a walk outdoors and supplements. And understanding.

But then Saturday came and I went to the toilet and when I came out my body did kaplooyee.

I’m back to … 40% activity level I guess.
Yesterday I was out of bed for an hour twice. Today I thought about taking a shower but that’s all it’s going to be, a thought. I’m out of bed now for an hour, to write this, but I have not bothered dressing myself.

There’s a wave of despair and frustration rolling over me all day, to and fro. There are a few things I had really planned for this week that had to be wiped from the table. Sewing a dress, studying a government plan for the cabin and making a start on an engineers’ rapport on the manure plant. (Yes, that’s still going. We’ve now reached the highest court in the land and my rapport can help stop the development. I’ve reread what I wrote last Spring and what I wrote a year and a half back and both papers read like I was high or drunken. I’d love my final rapport to be more balanced.)

But the despair and frustration of all this plans aborting I can handle more easy than before, when I was ill all the time. I divert my attention. I surrender to true relaxation and feelings of safety. And I still have room in my brain for extra curricular subjects to think about. These are the things that have presented themselves the last couple of months and that have nothing to do with being ill.

They are art, illustration, printmaking and engineering. And sewing and designing knitwear. Imagining knitting parties, with puns.

But it’s scary to be back in this place. Where my body just does not have the energy. Where it’s struggling. Where I want to sink away in a mist of not-having-to-deal-with-anything. Especially not the fear that this is permanent.

I estimate I need at least another two days of absolute rest. In “the community” (i.e. this is called Aggressive Rest Therapy. And one of the hardest things to do is slowly transfer this into moderate activity. You have to understand that even though you feel better your body still needs the rest TREMENDOUSLY. So you have to lie down and relax, even though you feel good and want to do all the things you could not do before and you want to celebrate life and see your friends and feel the sun on your face. No. No.

You have to do more like: 15 minutes up (even “up” like this: sitting on a chair) and then lie down for 10 minutes. Flat on your back. Eyes closed. I need to give my body the opportunity to reset totally and to use all excess energy for healing. It’s all just so precious.

Doing things this way is not easy. For example, I’m at least two days from even thinking about such a schedule but I’m already up and writing this for 60 minutes, way way past the time I allotted for it, just because I can. And because I feel rebellious. It’s a treacherous trait of this disease.

I’m going back to my bed now. I’ve been reading all day, especially the Ask Me Anything threads with Les Stroud. Mental management is the key element to surviving, he says. When you’re utterly alone and don’t see the point. That’s when you do it.