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. http://forums.phoenixrising.me/index.php) 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 reddit.com 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.

5 year plan to get back to health: reminder

A year ago I wrote this post. It’s a plan to get back to health in a slow, sure way.

I hope in the previous year I’ve done what I set out to do: mainly pacing myself and taking it step by step.

Now is the time to reassess the plan, see where I am, plan for the second year of the 5 year stretch.
That this post made it onto the blog is as big a surprise for you as it is for me. I prescheduled it as a reminder to myself. The fact that it got posted means I should take stock and assess where I am now and how I will slowly tackle the next year of my healing.

Hurry slow.
 pic by Michael & Christa Richert

health holding steady at 75%-80%

It’s holding! My health is now steady at 75 or 80% of what a normal healthy person has.

Sleep is continiously good now. Unless I eat something wrong.

Belly is good. Unless I eat something wrong or have days of excitement/stress such as the winter holidays.

Since it takes days if not weeks for my gut to heal it’s now not very hard to decline things I shouldn’t eat. As long as I remember to bring butter, chocolate or whipped cream I don’t feel left out either.

The hardest thing is to concede to the limitations of this life. Of course everybody has them, limits to their life. Nobody can do everything they want to, there’s simply not enough time in a day!

I have found I can do now 5 things in a day. Not more. Anything more I plan must be assumed a frivolous wish.

The list I must chose from:

  • take a little walk
  • take a shower
  • change the bed sheets
  • draw something
  • sew something
  • design something
  • write something
  • felt something
  • spin wool
  • wash wool
  • write a letter or card
  • make a phonecall
  • drive somewhere and back
  • visite the shops
  • clean the house
  • do the laundry
  • cook dinner
  • bake something
  • have a visitor
  • be a visitor
  • write a long blogpost
  • have a bath

only five things a day, I must chose carefully. All boxes need to be ticked: self maintainance, house maintainance, “career”things, social things.

I’ve started a little notebook or gratitude journal to note the 5 things I do each day. So I have something to counter the feeling I’m doing nothing and failing my to do list. It’s a simple tool but it works for me.

You remember the Spoon theory. I have five spoons now. And luckily they are much bigger than they were before. Getting up or getting dressed no longer requires a spoon. What luxury!

 pic by P�ivi Rytivaara

I still follow my own tips for preserving energy which I wrote down 2,5 years ago. I just realized as I stumpled across them.

Which is why I’m not offering the link to the Spoontheory right now. Because I couldn’t find it right away. And you now how to work the Google.

update 1 november: six months of recovering from ME/CFS

Today is six months after the first day of my leap in recovery. This is an update on how I’m doing. Because I am doing well!

For me, recovery suddenly started on the first of May when I started to take 100 mg of body-identical Progesterone (not “the pill” or your typical HRT but the daily dose of bioidentical Progesterone that all human beings need, regardless of sex or age) daily and lowered my chronic bodily stress overnight by stopping the constant worry about it (through Gupta Amygdala Retraining Program).

This leap in health was possible because I had set the scene: my digestion track was in optimal health after years of no vegetables, no sugars and no grains. In those same years I had managed to shed some of the toxins that had build up in my cells during a lifetime (due to DNA damage to the normal waste disposal processes) and I had supplemented all minerals to sufficient levels.
I had also learned to take two horizontal rests every day, to facilitate digestion and to let my nervous system experience rest and calm. (get out of Fight or Flight and into Rest & Digest).
On top of all this I had reduced all life stresses (work, noise, mother-in-law, social gatherings, having to make decisions and choices all day) and I was supplementing two hormones I do not have enough of at the moment: Cortisol and Progesteron (the sex hormone. Not the basic building block all humans need that I reference in the first alinea). I supplement these two according to symptoms and time of month.

Recovery in the last six months has been steady and continuously and today I live bussier days and get more things done while maintaining a calmer mood. My house is cleaner, I’m better fed, better clothed and take showers more often. I go and visit friends. I drive my car more. And I’m thinking about working again.

And it’s not easy, being in better health.
I now realize that besides the hardships of being ill it makes for pretty easy days, when you’re very very ill. Your priorities are few and pressing. There’s getting out of bed. There’s getting food and keeping it inside. There’s trying not to crash. There might be some washing of bodyparts. And then there’s getting back in bed again.
All other things fall from the plate. No need to spend a thought on them. That’s easy living. Bleak but easy.

(Not that being ill is easy. Besides the practical difficulties there’s the disappointment and despair and frustration to deal with. Not an easy task by far.)

Being in better health piles up opportunities to fill the day. I have great difficulty sifting through them, deciding what’s important. Often I’m knackered from the contemplating and choosing, not even from doing.
I had not counted on that.

The other thing that surprises me is the emotional luggage that’s come tumbling off this vehicle now that I’m gathering speed. There’s all kinds of things emerge and need to be cleaned up and repaired. Things like my lack of basic safety or coming to terms with the nonsense of the world and of life and of time.
I wonder if I had stowed these issues away while I was so ill, just because there was no reserve to deal with them at the time.

Now a summary by subject:
I still eat chicken soup as my main staple. Two or three times a day. It’s home made stock, I make it once a week. Fatigued people can make it too because you can take many breaks in between the preparation.

recipe ME chickensoup


  1. chicken (whole chicken, with bones but without intestines, feathers, feet and head. PReferably organic. Can be a mean old chicken)
  2. stalk celery (preferably organic)
  3. ginger (big piece, as potato-like as possible. Gnarly ginger is tiresome to skin)
  4. vinegar, salt, pepper


  1. large pot. 5 litres?
  2. small plate
  3. paper towel
  4. colander
  5. cutting knife
  6. schuimspaan
  7. perhaps scissors to cut the celerytops and perhaps oven mitts if the top of the pot gets too hot. A chair to sit on.

making the soup:

  1. fill a large pot with water (luke warm of cold), add a lot of salt, two large glugs of vinegar and the chicken (don’t add the pepper yet). Put it on heat. Go lie down.
  2.  chop up the celery (by scissors or by cutting on the small plate) and put them in the colander. Go rest.
  3. rinse celery in the colander. Leave in colander in sink.
  4. cut up the ginger on the small plate. Small enough to eat in a spoon of soup. Put the ginger on top of the celery in the colander. Go lie down.
  5. Place the paper towel on top of your small plate.
  6. open the pot with the simmering soup. See if there’s any scum rising to the top. Scoop that away with your scoop and dispose of it on the paper towel on your small plate. Repeat this process untill almost all of the scum is gone. This scum is white or yellow or brown froth. It consists of nasty big molecules of protein that your body doesn’t like. It’s not fat. Fat is good.
  7. When the scum is mostly gone tip the colander in the pot. Add pepper. Put on a simmer and leave for a couple of hours.


The gelatine in the soup is the main health benefit. And something warm. And fat and some protein. The ginger facilitates digestion as does the vinegar. The salt is very important for the adrenals and for the low blood pressure.

I keep the big pot in the refrigerator and take out small amounts that I warm up on the stove in a small pan. Just two big scoops, enough to fill a small bowl. This is my break fast and my dinner.

At lunch I eat chocolate ganache and whipped cream. Once a week I eat fish, I make a stew of it with zuccini and koreander (again a gelatineous dish).
As I am more physically active now I eat more carbohydrates: apple pie; commercial chocolate figurines and salted chips (crisps if you’re British). I also eat chips once in a while (fries if you’re American). Sushi once a month.
Oh, I should tell you about my MarvelSushi!

recipe Marvelsushi

  1. place a slice of roastbeef on a plate
  2. sprinkle salt on it
  3. add a slice of pickled ginger
  4. add wasabi
  5. add a third of your finger in full fat butter
  6. roll up. Let it come to room temperature. Enjoy.

I take care to choose ginger and wasabi (and meat) with no additives. The ginger has a bit of sugar in it but that’s ok.

So still I don’t eat a lot. That’s ok because digestion takes a large portion of my energy and I’d rather use it for something else.
I’m also convinced human bodies are better off without carrying around a pound of food in their tummies. I have no bloating and my belly doesn’t hang over my belt. I’m not skinny either, oh no. And I’m never hungry, except when I’ve snacked too much or too sweet. Right there is an illustration of dropping blood sugar that rose too high. I probably got my insuline flowing than and am storing fat. (it’s what happens with the “food coma” people sometimes mention) I try and sit out these rides. I go outside, have a look around. But whatever I do, I try not take another bite. (I don’t always succeed)

My poo is excellent. Small dark marbles, all soft squished together. A sign my bile is flowing and digestion is good. I aid my bile with HCL during meals.

Sometimes my belly hurts. It’s any time I eat something with vegetable skins (oats, nuts, seeds, vegetables). I get bloating and it really hurts. It will easily take a week for things to settle again and during this week I’m tired and sluggish. This now has made it easier for me to stay away from these food stufs.

I’ve noticed I’m entering middle age. My belly skin is getting that papery fragile look. If I eat more calories than I use up it settles in little soft bags on the side of my upper legs. If I don’t eat enough protein my muscles grow weak and my hip starts to hurt (also if I don’t take enough magnesium supplement or have had too much dairy products)
I finally got a set of glasses that addresses both my double vision and my need for reading glasses.

I know I’m entering middle age not because I need reading glasses but because I settle for “good enough” instead of optimum.

I sleep better now. After all these years!
I’ve participated in a sleep study. It ruled out sleep apneu, snoring and restless leg syndrome as causes for my insomnia. They could not explain why I lie awake and have done so all my life.
They did establish that I do get through all sleepstages. That’s good to know. I did get to REMsleep after the bout of insomnia which is a bit weird because usually you wake up after REM and before you dive back into another cycle.

I’ve gone into Sleep Restriction Therapy because it’s an effective therapy although experts don’t know much about sleep or why it’s helping. SRT is all about restricting the time you spend in bed so your body realizes it better utilize that time and sleep. I go to bed at half past ten every night and rise at half past five.
This is a harsh therapy and should not be done by anybody suffering from full blown CFS.

I started it over the Summer when I had time during the day to be sleepy. (Didn’t take any naps though, that’s part of the therapy).
Whatever the results, it taught me that sleep is malleable. Pliable. And has much to do with your every day state of mind.

I don’t sleep through the night. But I might.
Whenever there’s a mosquito or a snoring husband or a whining cat or inconsiderate people outside I’ll wake up and have my usual insomnia for an hour and a half. Then I go back to sleep.
Also when my body is out of sync (because I overdid it or have eaten wrong foods and upset my stomach) I’ll lie awake.

However, when my intestines are fine ànd I am calm and peaceful then I will sleep through the night. And my bed/my body needs to be clean and of comfortable temperature. (dust, dust mites, kelp, thyroid)
I’m no longer trapped in that fixed rhytme of 4,5 hours sleep, 1,5 hours awake and then a couple of more hours of bad sleep.
Things are pliable. Sleep is pliable.

I’m continuing with the restricted sleeping times. My light goes out at 23 hours and my day starts at 6.30 hours. It seems I’m someone who does better on fewer hours of sleep. 7,5 hours are good. Longer makes me sluggish. But I’m not sleeping all night every night. I’m still in the process.

What I hadn’t reckoned on is the importance of emotional state on sleep.

I had early on realized part of my chronic tension and my insomnia had to do with not feeling safe. Not in the world, not in my body.
The Sleep Therapy Psychologist gave it its name: lack of basic safety (“basisveiligheid”)
With that I found a psychologist’s world of knowledge to explore. I’m summarizing what applies to me, not others:

My lack of basic safety has lead to an unhealthy way of attachment (“onveilige hechting”) meaning I’ve resorted to living strong and aggressive and not needing my parents. I’m alert all the time and have emergency plans and contingency plans for every eventuality. Also for every absurd eventuality like a meteor coming crashing in or a long time neighbour suddenly drawing a gun and going berserk. I’m prepared for worst case scenarios. Living like this takes a lot of energy (hence adrenal exhaustion in later life)

I’ve done EMDR to deal with the hurt and grief of the baby that missed out on feeling safe. EMDR is amazing! My GP marvels that it’s the only therapy that works and he explains it likes this: you occupy your working memory with the clicks or the visuals while you revel in the (dire) emotions of the trauma. The brain cannot facilitate both processes and somehow dampens the emotions in favour of the occupation of the working brain.
I did it on my own, sitting under the tree. I watched my thumb while I moved it in front of my eyes. Then I went into the emotion. It was not nice to be in the emotional place of that baby again. Not nice at all…
But I had faith in the therapy and after a couple of minutes I felt the grief and desperation lessen. The whole process took maybe 15 minutes. It was hard.

After that I could look back at that babylife of mine and new thoughts found room to blossom. Thoughts about my parents, how much it must have hurt them, not coming to my aid. Thoughts about how clever that baby was -and its body- to come up with a solution to survive in spite of missing that basic premiss of all good living: being at home in your body and at home on the planet.

Having dealt with the emotional side of things I wanted to connect with the subconscious and/or nervous system side of me and install that sense of basic safety. I think it will bring my nervous system much ease and calmness. Processes will run smoother.

Not wanting to go to think/talk therapy because I’m too clever in my head I looked for ways of connecting to the subconscious that didn’t involve psychotherapy or the rational approach.

The Sleep Psychologist proposed Motoric Therapy. He explained what it was and it send me screaming for the hills. “A therapist will slowly close in on you and in the end he will hug you.”
After some research I understood why this idea makes my skin crawl: it is contra-indicated for people who are negative attached the way I am. It will make things worse.

I proposed Hypnotherapy.
I felt really ready for that. I found a therapist and we clicked.
But unfortunately she didn’t deliver what I had hoped. Not knowing much about this kind of therapy I had asked her to instruct my subconsciouss it is safe. My subconscious loves an authority figure and any instruction echoing the truth would be welcomed.
But the lady has not done so. She was afraid it might skew my assesment tool for general safety. She had an example of a man with diabetes who felt so safe he stopped taking insuline.
Clearly I had failed to explain on what plane my problem is. Preparing for unprobably meteorite crashes is something else than denying existing illnesses.

Instead she guided me on two trances, with strong shamanic colouring. This I can do on my own easily. Effects did not linger and it was a waste of expensive money. :(

A friend brought Body oriented therapy to my attention.
That’s where I’m at now, I’m working through the book of Levine.

I was up for diagnose at the Autism Centre in Utrecht that specializes in Autism in (adult) females. But after reading the surveys I can tell I’m not in the middle or the extreme of the spectrum. I have traits of the start of the spectrum for sure. Even traits I did not realize where indicative such as pulling on my eye lashes which will calm me down.
However I decided not to pursue a diagnosis with them. For one the treatment they offer solely consists of explanations of Autism and courses in Mindfullness. Both of which I do not need from them.
Secondly, the survey that a close friend had to fill in about me was horrible. The words, the atmosphere. Awful.
Thirdly, I don’t have a close friend or relative who could fill in questionaire …. no one has spend enough time with me in the last couple of years to be able to answer their questions. Which were horrible anyway and wouldn’t want to expose my friends to.
“When you come and visit the female, does the female offer you something to drink?”

I spend time at AspergerExperts.com and learned a bunch.
Good site.

I concluded my “autism” is malleable. I don’t think it’s ingrained in my brain structure. I think it’s more in the software: in the neurotransmitters and in the hormones.

I think I had an encounter with perimenopause…. Twice. Got my period a whole week early, twice. This has never happened in 10+ years (and I’ve been tracking!)
First time was after the EMDR/emotional week. Might be connected to that.
Second time was after an amazing weekend at a retreat with the Dutch National Wool Spinners Guild. I met all my friends, had a lovely time, extended my stay, drove to and from the venue myself, ate weird things.
And afterwards, I’m a little bit ashamed to say, I did not take to the couch.
Instead I embarked on a full week of spinning wool which requires me to sit up straight.

Lots of people get ill after these weekends. Little colds flare up. Exhaustion. People need a pyamaday. So it’s to be expected.
But getting my period… I was not pleased. Because I dread perimenopause.
Oh well.

Otherwise I’m handling my hormones acceptably.
It is hard though. I can’t take anything I feel seriously. Any feel of dread, doom or despair is hormonal in essence. I have to weather it. Keep breathing. Don’t try and solve it.
The one thing to do is to get physical active. That will aid the body in levelling the board.
But it takes willpower to make it happen, physical acitivety.

Trying to keep an emotional balance in spite of fluctuating hormones and experience how I’m basically safe and also something another person might call mindfullness nowadays I’m thinking at every turn: “I am here. I am now.” It helps to be (in) my body. It helps to see en enjoy the things around me right now instead of the things in my future where my mind usually dwells.

Often my thoughts and my feelings stray away and I see how life unfolds, how things are, and I feel sad about things we are losing. Species, spaces, traditionals, stories.
I try to turn my thoughts around, focus on here and now, on the wonders that surround each of us in the here and now. Hoping my feelings will follow.
But it’s hard.

The mind keeps predicting what will happen. We will get more traffic, more people, more houses.
More people will escape into their monitors and game devices and enjoy a mental life online or emerged in games or documentairies.
I will grow old and loose more of my bodily abbilities and one day I’ll end up in a facility where other people will determine what I eat and when I eat. Overthrowing my optimum diet.

I see that’s how we live. And that’s ok. We live mediocre. People in extremes

I see how people fill their lives. How cat fill their lives. It tells me something about the essence of life. The essence is not getting a goal.
the essence is in being in the moment. Experiencing the and through the body.
but words fail me. And I don’t want this to be al sagy and life motivating and atracking more people who make money by getting followers online and dishing out life wisdom in one liners.


These six months were meant for me to flounder around. Do nothing. Enjoy the day.
That has been a hard task. I find it hard.

Especially now there’s more room in my days, in my head, to do something. Suddenly having a job is back on the table.

I’ve been thinking about it. What kind of a job. What would suit me. I dabble in some activities. Fell flat on my face because ambition creeped back in and sucked all the joy out of the activity. I felt guilty. I feel guilty.

I still struggle with this.


The next six months are meant for more floundering about. More healing, more recovery.

Install that better sleep permanent. Come to terms with doing more in a day yet still balancing rest and pacing. Clearing away more of the emotional clutter (there’s still a portion of relationship-stuff to be addressed and revived). Getting the house and the cabin in good shape.

Getting through the dark winter months. Managing hormone levels. Hoping to get some sort of health level established, as a base for approaching middle age.

Dealing with the tremendous fear and worry I’m wrecking my body. Yes, I’m still scared.

So see you back on the first of May 2015, when I’m one year in recovery.

the day before a health update

this morning I took a shower straight out of bed.
I know! First time since 2008.

So there I was, in the shower, congratulating myself with the recovery I’m making. Planning to blog about it because it’s a nice opener for the update on six months of recovery I want to post tomorrow.

Then I opened the shower door and realized: no towel.

Also no deodorant, the wrong underwear and ripped tights, But these things I only discovered later, one by one. So that’s four trips through the house before I could complete the shower.

Pfff, I’m gonna lie down for a bit now and curb my cockiness about recovery ;-)

but yay @ shower homeostasis!

 duck by Niels Timmer