End of this blog.

With the past post I think this blog has come to an end.
This blog was intended to help me straighten out my thoughts. To document what I want to do with my life. To navigate through my life, given the restrictions imposed.

I have found what it is I want to do. It’s still the same as it ever was: illustrate, write, art, design, engineer, create. All at once and none of them accumulating to something great.

There are still the same old things holding me back: ambition, perfectionism, fear of failure, fear of choosing, the need to be seen, the need to be acknowledged. Ah, such child’s needs… I may never grow out of them.

Watching me take these hurdles and me documenting this struggle will be tedious and with lots of repetition and small victories and never ending in a big crescendo.
I’m not going to write it down.
You’re not going to need to read it.
It would be equally exhibitionistic and boring, for all concerned. And really not that interesting.

Through this blog and the time that’s passed I’ve learned that there will never be enough hours in a day to do all the things I want to do. No matter whether I’m bed bound, brain fogged or running around drunk with sunshine.
There will always be choices and priorities to be set.

I have learned to think my way through some faulty assumptions I was carrying and building my life upon. Assumptions about life, about society and about what makes for a meaningful life. There’s that.

And as of today I glimpsed another truth. The truth about existing, meaningful, without giving account. Without given witness.
Without catching meaningful thoughts in a sentence. Without blogging, tweeting or writing a book about it. Shedding that urge, the urge to visibly exist. Using the time and space that it frees up to cuddle the cat, to share its place in the sun, examining something rustling in the tall grasses.
Because that is living.

I have a confidence that living unforced like this will bring out the drawings too.
Or it may be a tree house I build. Or an urban space I design. Or a cake I bake for a friend who loves owls.

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Learning to be well.

It’s been 4 weeks now since I figured out my ME. I’ve been recovering ever since. My activity level compared to a healthy person soared up to 70%.
I’ve been doing stuff!

The last two weeks I had several knitters over for day long visits. I baked cakes for them and cleaned the house and had gone out and bought gifts and did the groceries and returned to the store the same day to pick up something else I needed. I showered.
It was amazing!
Last Friday I topped it with a visit of my own: I took a 2,5 hours train ride to a knitters’ house. Stayed there all day at the wool party and then took the train back.

That was a bit too much for me and my body.
At the end of the party I burst out in tears because I was too tired. I was much embarrassed because tears did nót fit the mood at that party. Luckily they know me and my condition and knew it was my body crying, not me.
But I still had to travel back to home, cradling my overwhelmed body and exhausted mind. We did it, my body and me. We arrived at my home town and my husband was there to pick me up at the station. He brought me home, he had already put tooth paste on my brush, and 4 minutes after I stepped over the threshold I was in bed, asleep.

Now I’m in the recovery zone, recovering from these two weeks in which I pushed the envelope. I’m not complaining (much).
I’m amazed how well I spring back from all the tiring things. Even with the collapse in Friday -which wasn’t a crash so well done, team me!- I managed to drive to the cabin by myself on Sunday. And I’ve been busy here. Doing laundry and cooking yesterday, both on the same day.
I skirted a dirty sheeps’ fleece on Sunday!

This is really weird.

So yes, lots of activity, even while recovering from two tiring weeks. My digestion is not well, with all of the cakes and wonderful stuff I ate. So it’s back to chicken soup, I made a big batch yesterday.
I have all kind of aches, my body would really like a warm bath. I’m picking up my daily walk again today, movement will help getting rid of aches and waste drifting in the blood stream.
I’m doing well with the Hydrocortisone, judging by the mad skin reaction to mosquito bites and oven burns (baking cakes) I have not suppressed my immune system.

The most wonderful thing about all this is that I actually have to LEARN to be well again.
First thing was imagining how it is to be well. I had not done so in many years. Not that I was lamenting in all the things I could not do all the time. Comparing what I wanted to do to what I actually could do was just not something that took up residence in my mind. There was the regular disappointment when I had to decline an invitation, again, or back out of engagements. Those were times of hot tears.
But hot tears dry quickly. I never laid around for long, pining for the time when I used to be able to do alllllll these things and now I can’t and boohoo.

Now I do. Now I’m mentally exploring what a healthy person can do in a day. What I can do, soon. What I would like to do. What would I like to do?
What now, will make me sing and cheer and jump out of bed and start the day eagerly?
It’s a freeing line of thoughts to follow.

(Again I’ve stumbled upon an area of thought that shifts the way I see the world, making it once as big, without actually changing anything in the physical world or in my daily reality. I’m amazed at how much there is to explore in the mind’s world.)
(Other such experiences I had were:

  • when I first started to see a city/architecture as a sequence of spaces instead of masses. Spaces allow movement through them, people moving, with their eyes seeing and their bodily mass associate to the masses around them, being it architectural or human masses.
  • when I used magic mushrooms -one time only and it aroused a dangerous interest in a repeat experience which luckily I did not pursue, more by chance than by smart- and I realized my eyes do not portray the world as it is. I saw colours and shapes in ways I’d never seen before. It told me the world is more than and different from how I see it and it started thoughts about being an entity in a world but not off this world, not in the way the senses suggest. Basic philosophy stuff, but quite different when approached from an emotional perception than dry intellect, as I had done up to that moment.
  • when I finally slowed down, here in the cabin, ill, dazed. Finally stopped absorbing the news and caffeine and the urban way of life and career opportunities and getting ahead and having goals and planning my days. When a day would just float by and I’d be. Just be. Just like the cat is. Like the tree is. No stress, no plans. There’s a whole world opening up once you just “be”. And I’m of a mind that it may be the true world, the way of our planet through all its scales and subjects of science. The world all other life lives in. Ought to live in. And that humans are the odd ones out, running our monkey business because of that brain we’ve got.
  • first time turning a heel when knitting a sock. Forging a 3D shape out of plane constructions is magic. A magic you can tailor to the specifics of your body. Suddenly you are a creator and a fashion designer. Linked with all garment makers that came before, which goes back straight to the very beginning of human existence.
  • first time driving my own car on the motor way. Freedom! I could just keep on driving, I could I could. And: operating a machine to bypass the body’s limitations. It’s what we humans do. It’s what female aviators did, a hundred years ago.

Anyway… )

LEARNING TO BE WELL
Now I find I have NOT gotten more hours in a day with the more energy I’ve gained.
If anything, the process of choosing and setting priorities has become more pressing. Because there are more opportunities and options.

Luckily I’ve trained a bit for this, while being ill.
I now realize I could pour all my new found energy and time into getting my house clean, into getting a well coordinated garderobe or into knitting all the yarn I have.
It’s so easy to loose your day in chores, administration, keeping up with people, keeping up with the news and getting things done.

Instead I will have to live in a house that’s not much more tidy then it was 4 years ago nor will I have perfect garments and I will probably die, a hundred years from now, in possession of some of the same skeins of yarn I already have.

Instead there’s that one golden hour a day, right after breakfast, in which I can do the thing that matters to me most.
I have to learn to leave all the other stuff for later. And figure out what it is that matters to me most.

You already guessed it has to do with art, illustration and producing something. The weird thing is that for the past 3 days I’ve set aside that Golden Hour for just those things. But I don’t use it.
I squander my hour on stuff. The internet. Letters that need to be written. Appointments that need to be made. Laundry that needs to be done.
And I find myself at night, sitting at the edge of my bed, quickly scribbling the drawing I had planned for that day. Or any drawing.

It seems I am afraid of doing the one thing I like to do most. I excel in distracting myself. In finding excuses.
Like today. Today I wrote this post and now I need to rest up (remember the past two weeks). Surely there’s no occasion to draw today…

It probably has to do with assigning to much weight to the choice I want to make. I’m planning again. Not being. What a strange new world!

Looking back at my CFS/ME

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I listed my symptoms/problem areas:

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

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

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

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

Slowly I fixed nutrient uptake.

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here’s to high hopes!

pic by Andreas Krappweis

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

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

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

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

started Gupta Amygdala retraining

Today I started the Gupta Amygdala retraining.

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

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

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

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

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

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

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

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

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

a dream I refuse to participate in

In my dream last night people were suspiciously holding me up on my way out of the supermarket. It was as if my head wasn’t done yet thinking up the street and the storyline and it was stalling me.

I refused to enable this dream.

So I turned towards the produce aisle
and crawled among the apples.

pic by sheridanck
There. Make a storyline out of that, dream master!

in other sleep related news:
1. the doctor’s office forgot to send a fax to the sleep clinic two months ago and my request wasn’t processed. I discovered this last week and fixed it but have been waiting for naught for months now.
All the while having bad sleep.
Tomorrow I’ll ring the clinic, check that they did get the paperwork. Then it’s a three month waiting period and then I can go and have a sleep study.

2. while I do lie awake now again every night I am waking up better rested. After my hour and a half insomnia I take a morsel of Hydrocortisone and this makes my body relax and allows for two hours good sleep. Instead of the broken snooze I used to have.

I have two possible explanations for this: one is that the cortisol dampens an allergic reaction or CNS alarm that otherwise keeps me from sleeping. This could be something lung related or throat related or gut related as these three areas give me pain/trouble at night.
Or this cortisol covers some of the usual awake response in cortisol levels, making me not dip too low.
Either way: I wake up feeling not too bad and I do not have to wait 45 minutes to come from a very very bad place.

I have better stamina during the day, presumably because of this. I also cover my cortisol and progesterone needs during the day better. (I now take 100 mcg of Progesterone every night. It doesn’t help me sleep -no allopregnanolone for me- but it does seem to cover my base line need for the hormone better)

Because of better stamina I try to be more physical active during the day. Having just spend 2 weeks in the city I’ve been walking and walking and showering and cooking. Doing multiple things on single days.
Physical activity is the best way to get hormone levels in flux and in balance so I’m really pleased.

I’ve had the opportunity and stamina to meet various knitter friends during these weeks and we had lovely cups of tea and chats and wool and spindle fondling. This makes me wildly happy.
Wild happiness is the best companion for a chronic illness.

PS
taking 50 mcg of vit D3 also helps. It really does. Never ever ever do I want to go too low on vit D again.

No guts, no glory

It’s Easter Sunday.
Yesterday I spend a lovely day at a knitters’ house, making paper tape dummies. These are excellent! And superior in use to duct tape dummies. (no smell, no glue onto your pins)

My friend prepared a wonderful lunch and made sure to ask what I could and could not eat.
She skipped the garlic she usually puts into her soups. She made a stunning, hot aïlio as a side dish instead, for people to put into their soup. It smelled delicious!

I skipped the garlic but I did eat the other treats. Not the really bad things such as gluten or cake. But the things you need to try every once in a while, just to check how the gut is doing. And also to prevent it from getting too touchy/vulnerable/diva like.

So I had some of her fantastic candy (nuts, dried fruits, orange juice, cookie spices. Chop in the blender. Shape into bars or balls)
A sip of honey and comb from her own bees (!!! how’s that for a hobby?! In the city no less!)
Homemade tomato soup from home made broth, with pieces of onion and pepper (paprika)
Dark chocolate bonbons.

It was all delicious and so full of love :)

But I did lie awake tonight with an upset gut. It spilled over into my brain and I was hyper and doomed and fresh out of joy de vivre. Luckily I recognized these feelings as just symptoms. No need to do anything about them, least of all “solve” them. Just wait. Calm yourself. Try and get some more sleep.

Then this morning I could not get out of bed, all ME and lethargic and messed up brain chemistry.

It’s an odd state to be in. You feel rotten and you just want to lay there and stop existing. But the only thing that will actually help is to get up, to get moving and to get those nasty poisons out of the system. (just by being upright, walking around the house, drinking water or tea)
It takes a lot of will power to make it happen. To get to the edge of the bed.

Now I’m downstairs. It’s a lovely day outside. I had a peek but went inside again, there’s just too much sunshine, bird song and leaves.
Instead I’m in front of the computer now. First mug of tea is gone. Ear mufflers are on. And I read a bit about IBS (irritable bowel syndrome).

They list the same foods I ate yesterday as triggers.
Whereas IBS symptoms are mostly noted in the bowel (diarrea or bloated feeling or gassiness) I’m sure there are symptoms in the brain too.
I can probably find some knowledge and experiences in that field that I can use for me. I’m already very pleased that they note stress as an influence on the bowel.
The gut-mind-gut connection is all too real for me.

Today I’m having a little pity party that even small nibbles of food will trigger brain chemistry symptoms in me. I will have to reject even little nibbles with nuts, like the easter treats we bought for ourselves.

I cannot decide if it was worth it.
I was really happy yesterday, sitting at my friends’ wooden dining table, enjoying her food.
But last night and today I feel truely rotten and I don’t know how long it will take for my gut to quiet down and my mood to lift.
Well, it’s another faulty question than. I should not try to value if it was worth it or not.
Yesterday I was happy, I should cherish the memory.
Today is today. Time to make new memories.

Either way: it’s back to chicken soup for me.
And movement. I will take my walk today and sit upright and move as much as possible and drink tea a lot. If I do just that, it will have been a good day.

me and the Myers-Briggs types


I’m an introvert.
But I don’t approach the outer world in any way fitting the Myers-Briggs definitions of cognitive functions, I think.
Here’s how I see the world/ how the world presents itself to me:

  1. everything is in a heartfelt value.

I see/perceive everything more or less connected to my heart. This has little to do with love for people (which is a trait of Fe in the Myers-Briggs personality typing).
Trees, clouds, birds, sounds, traffic, light, smells. Everything comes in, directly, and has an emotional value. There is nothing I see/notice that has not an emotional value. I feel everything in relation to myself.

This makes for an often overwhelming experience in the outer world.
Add to this my HSP and/or my adrenal insufficient cortisol to deal with stressors and you can imagine that lots of things I see in the outer world are hurtfull. I’m not talking about pitiful puppies or shocking news, no, just the flapping of treeleaves is enough to hurt me. Seeing a hare in the field. Which is why I spend a lot of time inside on beautiful Summer days.

by Andreas Krappweis

But without these extra hindrances seeing the world like this makes for a grand human experience!
What happens is that I -me, my identity, my ego- dissolves: I ám the cloud, the forest, the sounds, the traffic, the puppies, the leave.
It is all interconnected and all in a heartfelt way. Wordless.

But there’s nothing sage-y or profound or visionary about it. Nothing cerebral going on. Nothing that requires meditation.
Actually, it’s quite down to earth and real and self-evident. It’s just dirt and pebbles. I become the dirt and pebbles.

by Martyn E. Jones

Does anybody recognize this way of being? Am I a freak?
I have not yet encountered anybody who echoos this experience.
I can think of no use for this function in terms of career or job or worldy manifestation. It’s all private and without words, how could I put it to use for the benefit of society?

For years I have consciously restrained this experience, for fear I would lose my mind. I still do. But it is how I am, who I am, how I function.
Today I wonder if by restraining this natural automatic way of being, I have not driven myself to a bit of madness. Control freakyness. Or driven myself to illness at least.

I have no idea how to connect that way of experiencing the outer world to any of the cognitive functions proposed by Myers-Briggs.
Do you have an idea?

It should be one of the Introverted Intuition types:
INTJ
INFJ

or one of the Introverted Thinking types:
INTP
ISTP

or one of the Introverted Sensing types:
ISTJ
ISFJ

or one of the Introverted Feeling types”
INFP
ISFP

The second letter determines how the person experiences the impulses from the outer world.
They all use their second letter different, as influenced by their third letter.
Here’s a quick overview.
You’d say I gravitate towards Fe: feeling the outerworld. Only the theory states a preference for cultivating interhuman harmony. I have no interest in that. It would be rare for me to put myself into service of another person’s happiness.

So am I a hermit extrovert?
A non-social harmony seeker?
A lazy ass thinker?
A lovable freakfreak?
Am I what more than one person has called me: Luna Lovegood??

If I could chose my first two letters in the Myers-Briggs system it would be IF..
An introvert bleeding heart. With no desire to rescue kittens or unhappy people.
This is not allowed because your second letter should be confined to either an intuitive/cerebral or to a sensing way of perceiving the world: N or S.

My third letter would be N, because that’s how I organize my internal world, I’m an IFN.

I take all these heartfelt things from the outerworld and I combine them into conceptual structures in my head. I’ve got a theory for everything. Everything has a place and a role and a reason and consequences and influences and I see them all whenever I think of any one thing in particular. I see webs of connections. Elaborate system architectures.
I like to dwell in these structures. I live in them.
I use them when I go out in the world and take action (fourth letter) but I have not yet specified how I do this.

Well, I probably don’t understand the Myers=Briggs system right, the way I mumble this all up.
But one thing’s for sure: when I perceive the world it’s in a code of the heart. And I, the ego, can dissolve in doing so… ok two, two things are for certain. One: I wear heartgoggles to see the world. Two: my ego can dissolve. Three: internal structure is in concepts and theories.
Three! Three things are for certain!

An alternative to Jung’s personality types

skip intro, go direct to the alternative
DUALITY
The thing with Jung is that he uses that way of thinking that’s exemplary of the 20th century: duality.
Something is this or that. Red or blue. Warm or hot. Right or Wrong.
Not both. Not a third option. Never parallel things. In the 20th century a non-duality way of thinking was the uncomfortable indecisiveness concerning Schrödinger’s cat. Later on quantum physics and string theory worked with non-duality thinking but they were novel and unsettling. Over all, thinking in the 20th century was pretty much 2D.

pc by Harry Fodor

Jung’s theory of cognitive functions and the personality types that Myers-Briggs based upon them illustrate this dual way of looking at the world.

Extraversion or Introversion : E or I
Sensing or iNtuition : S or N
Thinking or Feeling : T or F
Judging or Perceiving : J or P

(bold letters are used as shorthand labels to identify the 16 types of personalities such as INFJ or ENTP. With this types you can do battle in the office or determine which career fits you well. Or you can make money trying to explain them to people.)

EIGHT COGNITIVE FUNCTIONS; 16 PERSONALITY TYPES
Everyone can be described into four letters: ESTP, ESFP, ISTJ, ISFJ, ENTP, ENFP, INTJ, INFJ, ESTJ, ENTJ, ISTP, INTP, ESFJ, ENFJ, ISFP or INFP
The first letter of all these types illustrates wether someone prefers to spend time outside or inside their head. The second illustrates how they receive information from the outer world. The third one how they process that and the fourth one with what attitude they approach the outer world. (summarized very bold and crass. Follow some of the links here to really familiarize yourself with the theories and the how specific a lot of these common words are being used)

Let me emphasize that there are no wrong or right types. No preferred approaches. Someone one who has an introverted attitude is not more noble than someone who prefers extraverted fun.

The first function, after the attitude of preferring to live an introverted life or an that of an extravert, determines the bulk of your personality. Let’s say 75%.
The second function, the auxillary, adds another 15%. The rest is added bonus and there are some nice theories about them and how they can help you to become a more whole person.
In reality there are 8 functions, we all have all of them. But the first two make up 90% of who/how you are.

THERE’S MONEY IN PERSONALITY TYPING
All in all, Jung was not very clear what he talked about in detail. This makes for various interpretations and possible extensions of his thoughts. Some clever people have build upon his base of thinking, the Wiki page gives a nice overview.

The most used typing in both career choosing and personal growth is Myers-Briggs.
The added uneasyness I have with Myers-Briggs typing, on top of that 20th century habit of duality- is that it also alternates strictly between extroverted and introverted functions when it sifts through the eight functions for any type.
If your first letter is an I your second letter will be an extroverted function. Your third an i again. Your fourth an e. All the way down to the eighth cognitive function.

WHAT AM I?
My problem was I couldn’t find my type. I didn’t pay a consultant but did online tests and read about it. But couldn’t find the type that rang true to me. Or even to my friends.
I was an INFJ? No, an INTJ? INFP felt good too, except I don’t care much for other people who are needy.

I’m fairly sure I’m an introvert. But after that…

The online tests are not very subtle either. Understandably since they want to give results fast. They do tend to hog together in areas. Most Fe (extraverted Feeling) is interpreted as having other peoples feelings at interest, making them feel in harmony.
I have no interest in that. I do have an interest in harmony, but it’s more global in scope. More sjamanic. That’s another interpretation of Fe. Or isn’t it?

MY ALTERNATIVE: 3×3
After some introspection and researching the basic ideas of Jung I’ve come to the conclusion I work differently than both Jung and Myers-Briggs suggest. Starting with the fact that I don’t live in a world of dualities, where metaphorical coins only have two sides.

pic by Leszek Soltys

I have devised another system and I’ll just blurt it out here, as a conversation topic.
My system works in threes.
Now, I’m by no means convinced that a trio-system offers more freedom or modernity than a dual system… but then, I wás born in the last century and going from 2D to 3D was something of a big thing back then.

It does offer an alternative way of Jung’s thinking (although you can never be sure, the dude was quiet diverse and laid back in his thinking) about how people order their inner world and how they perceive the outer world. This is what I want to share with you and discuss.

A third caveat I want to make is that it thinks about people’s minds in the old fashioned ways of collecting impressions in the outer world and then organizing them in an inner world.
This vision is probably dated in a next century, if it isn’t already. It certainly is when it is explained using temporary techniques: “your mind is like a computer, processing data”. Or, in last century techniques: “it’s like a filing system”. Or “there’s a little man inside your head, a captain of sorts.”

Anyway, let’s start:

INNER STRUCTURING
MY FIRST QUESTION IS: HOW IS YOUR INNER WORLD STRUCTURED?
What do you find in the little drawers of your mind? What do you thínk?
pic by Oliver Gruener

I think there are three fundamentally different ways people organize their inner thoughts/things/impressions. Everyone can use all three of them but I’m guessing one is prevalent over the others, it’s the one you use automatic.
The three ways are:

  1. data, you have a collection of data. You remember how a certain car looked. You know how much bed partners you’ve had there. You recall the vivid remembrance of a particular fun swim/hike/bunjee jump/party/icecream
  2. feelings, you have a collection of feelings. You know much you love your mum. You’re specific in the way you love pink dresses (or hate them). You remember how you felt when you had sushi for the first time. And how it still hurts when so-and-so said that-and-that. You feel strongly about parking rules and people violating or enforcing them.
  3. concepts, you have a collection of concepts. You have an instant image how a combustion engine works. You have a theory about why you’re on this earth. You know the role of bugs in the world. You can decipher office politics without effort.

We all have all three ways of structuring things inside. But one of these goes automatic. Effortless.

I’ve described some examples in each category and I tried to capture different flavours within each category. I’m not describing three actual people, I’m describing three sorts of people. Within each category there are many different people.
Please don’t think concept people are scientists or feeling people are emotional women or data people are thrill seekers.

(For me it’s concepts. Everything inside me is connected into a bigger picture. Even my love for my mum and how great the hotrod looked we once had are placed into a construction of meaning. The love for my mum is connected to theories about children and parents; human life on earth; interhuman connections; being a child; dependencies between humans; growth as a mother etc etc. Lots of concepts and constructions and the love for my mum is anchored in all of them, in different ways and with different aspects highlighted. All simultaneously.)
(I am dumbfounded about office politics. I do know about combust engines though.)

GOGGLES TO THE WORLD
MY SECOND QUESTION IS: HOW DO YOU PERCEIVE THE WORLD?
What glasses do you wear through which the outer world comes to you?
What do you séé?
pic by Lisa Ghaith

Again, I think there are three ways of seeing things. Again, we all use all three. But one of them is automatic. Effortless.
I propose the existence of the following glasses we wear when we are met by the outside world:

  1. Senses. “I collect sensory experiences. I see objects, colours, textures, speeds, action, fun rides, horse breeds etc. I see them all, I’m very observant.”
  2. Values. “I rate everything I see. Everything gets a thumbs up/down (moral value) or a heart/dislike (empethic value). Things in the world are instantly related to me.”
  3. Meaning. “I see everything as it is connected to their bigger pictures. I see how things are joined and associated. Things are related to other things, I see conceptual.”

You notice the similarity between the trio from the first question and the last. And you notice I do follow the Jungian idea of an inner world that is structured a certain way and varied ways of perceiving an outer world. He/Myers-Briggs has the third step of interaction with that outer world, manifesting oneself in it, but I have not come that far.

The first trio -the internal organization of the mind- differs from the last trio -the way we see the world- and people don’t often fall in the same categories in both cases. In fact, I think there may be 9 personality types based on this arrangement.

1. There are the people who collect sensory experiences in the world.
They then may structure these experiences data-wise or feelings-wise or concept-wise. (1A,1B,1C)

2. There are other people who assign values to everything they see. 
They construct their collection of values either data-wise; feelings-wise or concept-wise. (2A,2B,2C)

(for this group I made a distinction between values that are assigned based upon morals (which I deem to be learnt, acquired) or based upon their bleeding heart (empathic).
I see this distinction in the same way as I see the various “flavours” a sensory-collector has at her disposal: colours; tastes; rollercoaster rides etc.
The concept-seeërs also have distinctive categories such as scale; level of abstraction; social impact; spatial organization; global thing.
It’s just that I found it necessary to specify the moral value assigning. Because I’m an empathic value assigner.)

3. The people who see meaning when they look upon the world may structure their collection of meanings data-wise or feeling-wise or concept-wise. (3A, 3B, 3C))

It will not be often that a data-collector also structures his experiences data-wise. It may just as easily be one of the other two ways of organizing internal gatherings.

AN EXAMPLE TO ILLUSTRATE: A GLASS OF WATER
photographed by Thiago Felipe Festa

Here’s a glass of water. Three people look on it, they have three different ways of perceiving the world.

The sentient person sees the glass and notices particular the sparkle on edges of the glass:

sensory-glass

Here’s how she might stash that information, depending on which type she is.

  1. data : I store it with all the other sparkles such as the discoball at that party and the glitter on the lake last Summer. Nice memories!
  2. feeling: That’s a good sparkle! or “I really enjoy sparkles”
  3. concept: it’s the light reflecting, like rainbows. In rainbows light reflects withín the drop of water

A value-giving person sees the glass and assigns a value, let’s say she approves of this glass of water. Both on a moral and on a heart felt basis:
value-glass
Here’s how she stores that value depending on her nature:

  1. data: another good glass of water! I’ve seen many.
  2. feeling: it’s so good when there’s a fine glass of water around. It’s one of the small things in life that gives great pleasure.
  3. concept: this glass of water is illustrative that we have a good drinking water supply system in this country.

Now the meaning gathering person sees the same glass of water. To her there may be a symbol superimposed on the image: H2O (the chemical notation of water).
concept-type
She stores this information depending on her preferred internal structure:

  1. data: H2O, H, O, O2, HOOH, O3, He
  2. feeling: imagine the force with which H and O clash together to form H2O… I feel it.
  3. concept: I think of the cycle of oceanwater evaporating over land, failing in rain, filtering in the ground, seeping into streams, rushing in a rivier to the ocean.

With this I’ve described 9 ways of sorting an impression.

THE THREE DIFFERENT QUESTIONS PEOPLE ASK WHEN THEY WERE THEIR GOGGLES:
Once more I’ll try specify what distinction I make in how people take in the world:
the sensory person asks: “what is it?”
the rating person asks: “how do I feel about it?”
the conceptual person asks: “how is this structured?”
(“hoe steekt het in elkaar?” in Dutch)

It’s just the way their glasses work.
They then go on and sort their impression and they can do this in very different ways, unrelated to the glasses they use to see the world.

I’ve got another example, about driving in your car. But for this I have no time left to add clear explanations or drawings. Or even write it out, it is way past my bed time.

I’ll add it soon. In the mean time I’d love to read your thoughts or comments.
Anna

took my Kayak for a spin

Today I took my handmade kayak to the water for the very first time.
It was the one thing I chose to spend my energy on. We carried it to the stream and I had a 10 minute paddle. The first bit was Very Wobbly since my kayak has a flat hull. It’s an East Greenland type: fast, small, swift and excellent for cutting through waves. It lies high on the water, with little gravity to stabilize it.

Kayak

On a flat Dutch canal, with a kayaker who’s been severely wobbly for some time now, it was quite an experience! I trip over sunshine beams on a good day so you can imagine how non-co-ordinate I was, kayaking for the first time in 7 years in a high performance and skittish boat I had never paddled before.

Just 30 seconds out on the water and I had to row back ashore. I was trembling and close to tears with excitement and with the trouble of keeping the kayak from tipping over. But after a little breather it went better.

When kayakking these kind of boats you somehow have to detach your torso from your lower limbs. Your legs are for locking the kayak and making it an extension of your body. This is really how it will feel: your lower limbs will have the shape of a kayak. Walking is forgotten, you are now all about slicing through waves, surface tension, setting a course and undercurrents. A different language with different references. And you won’t think twice about it.

Your torso is for paddling and looking ahead and for calm breathing. When you paddle correct your torso turns, from left to right, and it’s a wonderful motioned rythm. I didn’t get to experience that today but I will later. I remember it from the fjords around Bergen, Norway, and it’s a most wonderful rythm. It connects the spirit.
I did find the calm breathing. And as soon as I “detached” the torso from the legs, the kayak became stable.

This kayak I made back in 2007, in a course in Norway under supervision of Anders Thygesen, the Kayakspecialist.
He has various ‘patterns’ for specific uses: long daytrip-kayaks or swift cutting through the surf-kayaks and many more.

They are all tailormade: first length is determined, based on desired main use of the kayak and your length.
Then you sit in a “toile” and exact notes are made of where your feet should be met by a beam (this is where you put pressure when you use your paddle) and how far back the entrance should be and how wide. Then it’s noted where your knees are supposed to meet a support beam (this is how you keep a kayak stable, you lock in. This is how you can roll a kayak back up when you’ve gone under).

My support beam is made of a vintage piece of oak from the forest the Danish King planted to make tall ships centuries ago. I love a bit of peculiarities in any handmade thing. Anders promotes this too. He invites you to name your vessel too.
You can just see a bit of that characteristic oak beam, in the roof of the entrance.

Kayak

No screws or pins where used. They are all handmade wooden dowels.
The “ribs” were bend using steam (after laying in a Norwegian stream nearby for a night). This is the bit Anders does for you, he does this by eye and the whole hull has to be one whole, shapewise.
The fabric is regular heavy canvas, painted with some weatherproof paint. It’s the last bit to go on. First you make it into some sort of glove by sewing shut the sides and then it is pulled tightly over the frame. This takes about 5 blokes, all pulling.
Then you sew shut the last flaps and shape it properly around the tips. The seam stitches vary from flat fell and various others.
In the end a hole is cut in the middle and the entrance is made: placing the round wooden ring (this is the only bit that is glued, this and the paddle. All other wood parts are held together by dowels) and attaching the canvas to it.
Then the canvas is treated with linseed. That’s the reddish colour you see on the canvas at the inside of the wooden ring. The outside is painted with paint. (white) and I put a green coat over when I got the kayak back to Holland.

Some of the stitches used:
Kayak

These are all traditional Inuit methods and skills. Only the canvas is not original, it would have been seal skin. Using the same stitches though.
It was a wonderful experience, building it. I so much like materials and hand skills.

I hope later on this year to make a little trip up the canal with the kayak. I’ll clean it a bit. Put in the waxed ropes that lay over the deck and that hold the paddle (and the reserve! Never get lost on the water without any paddle)

It was lovely, having it out again.
In the city I have a full fjord gear: clothes and tools to deal with paddling in life threatening cold waters of the north. But in these Dutch waters I won’t need them. I run more of a risk of botulism than of hypothermia here.

I would love to make and attach a “skirt” to it: a piece of cloth that is attached to your waist and goes around the wooden entrance hoop. This will be a watertight seal and when you tip over your kayak will not fill with water.
You could tip it back, upright again. But this requires a special “flip of the hips” that I have not mastered yet.
So when I flip over I’ll have to swim out of the kayak, turn it back up, try and empty as much water as I can, crawl on the deck, empty more water, get inside, get to shore, dry myself, change clothes, empty it and have a lie down.

It has been a couple of hours since I took it to the canal this morning.
Of course, when I got back home I crashed. This is called PEM. Post Extorion Exhasution (I’m so tired I can never remember where PEM stands for). It’s when ME or CFS people crash (long) after they’ve been physical active. This has to do with the mitochondria not working properly and not being able to replenish energy after it has been used.

I’m happy to report that after two hours of laying flat and only being able to hum or moan I was able to eat something and spend the last hour writing this (a cognitive activity).
An illustration how my resilience os growing.
I might even be able to go outside and enjoy the Spring day for a bit.

Either way: I spend all my spoons on kayaking today and I am chuffed!

How to enjoy perfection

When something’s perfect it nurtures a deep need in me. It’s not an “Oh, that’s nice” kind of thing. It’s a fundamental, existential kind of thing.

Especially when humans are involved in the creation of perfection I experience a deep and total sense of happiness. Fulfillment even.
On such occasion I feel the full extent of being a human myself, of being part of a society and of the advancements that come from dedication, attention and precision. I feel very connected to the person who put in the dedication and created perfection. It’s like a dialogue and I am actively participating, even though all I do is observe or notice.

A perfect meal. A perfect performance. A perfect art work. A perfect wedding. A perfect urban project. A perfect piece of writing. A perfect scientific experiment. A perfect political summit. A perfect cup of coffee.
When things are just right, it gives enormous pleasure.

Seeing how things could be perfect is a trait many people have.
“If they would just….”
“If only they had….”
Wether it be crafting supplies or politics, if “they” would only aim a little higher, co-operate a little better, think things a little more through!
Then the world would be perfect.

I have a personality type INFJ (or INTJ) that revels in these traits. Both the need for perfection and the habit of seeing things in the big picture.
I think in broad concepts. I see the world as a whole, where everything is intertwined. Where everyone is connected. Both from the present and the past.
Reality gets me very frustrated because it’s nitty and in gritty nature and things seldom end up júst right.

When I was young I wanted to fix the world. “Just give me the reigns and I will wash this puppy clean!”
Minister of State, that was going to be me. (I was oblivious to the nature of politics, a game I don’t play well.)

When my brother died unexpectedly reality came right to my doorstep en kicked me in the shins. (and smeared poop all over my door and set my house on fire)
I was not having it. I would not accept a world where my brother would just die at age 19, from a natural cause. (myocarditis from a flu virus)
So I didn’t. I sat there, arms folded, glaring at reality, waiting for it to behave.
It didn’t.
Slowly I learned that life is not perfect and that I am no player in its match.

Now I still see many scenario’s in life that would lead to perfection, or at least a diminishing of human suffering, if only “they” would do so-and-so.
But I’ve learned to bear the frustration that “they” will do not. And that that’s ok. Because that is how life works. And reality.

I now try to identify and cope with trends I see and that will affect my life.

For example, around me the landscape changes. Nature will have less of a place. Animals will disappear. Silence will never return.
People are building things, operate factories, drive cars and trucks. This is life.
I would love for it to be different. But that’s a dream that’s never going to be.
So instead I will view my cabin and its little patch of nature as a little getaway form the city. No longer shall I compare it to the vast nature reserves of Norway or the landscape of historical Netherlands. When I instead compare it to the little post stamp gardens from the city, it feels so much better. I appreciate the bird species, the various bees, the hares that live around my cabin.
I appreciate what is, not what could have been.

Another example: the changes in society. People now live faster. They decide quicker whom they like, whom they dislike. There’s more shouting in the streets, less talking to the neighbour. There are more crowds and more unsanitary behaviour induced by crowds. Even entertainment is influenced by the larger number of people it serves: big plastic prevails. If it looks the part it’s good enough, it doesn’t have to bé the part. Illusion is magic enough.
As a society the Netherlands have long lost their trait of tolerance and hospitality (if we ever wore those badges rightfully).
Perhaps we need to because this country is growing fuller and fuller. When people live close together, social attitudes change, no doubt.

Instead of moaning about the good old times when you could leave your bicycle unlocked (and so many things were wrong behind closed doors) I could take an interest in the humanity flux. Observe it. Theorize about it. Pretty much like Desmond Morris did 50 years ago in The Human Zoo.

I could look at Japan and New York, to get an idea where the Netherlands could be heading. And what gems emerge in those two settings that might grow here too.
Gems in the sense of urban structures such as small vegetable patches on rooftops. But also in the urban society where new communities rise, gathered around subjects old-country-people could have never imagined. Dungeons and Dragons, Graffity and Skateboarding are some of these subjects I remember from the 20th century. I wonder what would be the current things.

But let’s go back to my desire to enjoy perfection.
Over time I have learned to curb my desire for perfection in the big things of life.
Life and death; politics; economical progress; education system; world health etc.
They are well and good out of my reach. And thinking I could define perfection in any of these subjects would amount to megalomania.

Then there are the slightly smaller things where I personally still have no influence over and where perfection depends more clearly on the action of specific people.
Fashion; TV-series; music industry; craft supplies; husbandry; media coverage; internet behaviour; monetary art appreciation; genetic manipulation of crops and animals etc.
I do well to stay away from expecting perfection in any of these areas too.
I could think about it though, how perfection would look like in any of these areas. But it would end up in frustration because it never will.
Better to realize the imperfections whenever I deal with any of these scenes and work with them. Remember that the paper lies exaggerates so don’t get worked up about something stupid or insensitive it reports. Realize forum users are just people, the majority of them good hearted (albeit a bit clumsy verbally). Get your crops from a farm far away from GM crops.

But I still have that craving for enjoying perfection. I would very much like to experience perfection in my life. It makes me feel alive.
So I turned to subjects that are under my control.

But I’d be a fool if I strived for perfection in the big things in my life. Career, marriage, my body, friendships, other things that are close to the heart. These are just the things that will cripple a perfectionist if she focuses on any of them.

Because these are the things that will never be perfect.
And these are the things that will need more time and energy to get to perfection than any human can invest.
Stay away from trying to make these things perfect.
Enjoy the kinks and wrinkles in them instead, they are illustrations of how reality works. Noticing and “forgiving” the imperfections lets you personally off the hook too, there’s no need to demand perfection from yourself in these areas. Just like you do not demand perfection from your friends, your colleagues or they way your body operates.

So I decided to feed my perfection-hunger in the small things of life. The things where 20% effort gives 80% result and the last 20% result do not require an 80% effort.
Things that do not matter if they are imperfect.
But when they are perfect, I enjoy them sincerely. The full bouquet of attention to detail, dedication and an expert sense for proportions, colour and material is to be noticed and enjoyed.

It’s like fine art. But with humble subjects.
Japanese martial arts, including the arts of Sumi-é and Ikebana, come to mind.

A perfect cup of tea.
Stroking the cat just right.
Arrange silver ware on the table perfectly.

I’m not talking about “enjoy the simple things in life”
I’m saying: “Scratch your perfection-itch with the small stuff. And get to work on the big stuff. Sweaty, fallible work.”

In my life I have chosen like this:
I’ll strive for perfection in cups of tea and hobbies and once in a while Japanese food.
As art and design need to be perfect in my mind, which is a personal opinion that I cannot defend nor escape, I have assigned them the label of “hobbies”. That means I get to play around and aim for perfection but results in reality are not mandatory. Public recognition as an artist is off the table. (I’m astounded, I just reach this conclusion, writing this paragraph)

Getting results, getting public recognition (for my sweaty and imperfect work), will be on the subjects that I enjoy doing but that do not wear the yoke of perfection (for me). They are writing (both scientific journalism and little stories) and illustrating (of those stories).
So that will be my job. (wait, what?! astounded again. This is it?)(It sounds like it.)(It’s logical.)(I’d love it.)

I know all this thinking is a roundabout way for organizing ones life. Who else thinks like that? But that’s the way I’m wired and that’s what works for me. I need some sort of conceptual structure of life, me and the world I live in. Some concept of how to interpret the daily hours for me to live in happily.
I blame INFJ:

INFJ’s always need to have a cause. People with this personality type always want to know that they are moving toward a worthy goal and may feel disappointed and restless if this is not the case.

You say it like it’s a bad thing…

Anyway. If that’s my trait, and I concede it is, I need a way to work with it. I think I’ve found one.
But I also may be an INTJ, I’m not sure. I do have mayor extroverted thinking going on and I don’t recognize myself in the airy, floaty image of INFJs that is often presented.
Either way: Introverted Intuition for the win!