only one day per week is for drawing

alright.

Inktober day 1: “ring”
1ring

Inktober is here and I love doing that and just draw every day. Turns out I can’t. Today it’s the 7th of October and I’ve been feeling bad and inadequate all week for having only drawn day 1 and not draw on any of the next days. It’s what Inktober is about, after all: getting in the habit of drawing frequently. Every day preferably.

Turns out I can not draw every week.

Tuesdays are for ceramics.
Wednesdays are for sewing (lessons).
One day I must stay in bed and not want to do anything.
One day per week I have a meeting out of townm “far” away. It’s usually a council meeting about manure plants or biomass plants; last week it was the annual ceramics fair and yesterday it was a textile workshop at the national textile museum. These meetings are important.
One other day I’ll have a useful appointment close by or at home. It could be the dentist; a moving company coming by to make an offer; the builder who explains the plans for next door.
One day I like to see a friend.
That leaves one day for something my heart desires such as drawing.

On any day I must put in the effort to get out of bed. To get dressed. To organize food. To do the minimum of house chores. To rest. And to calm down in the evening so I can go to sleep.
On the days without appointments this leaves, when done right, about 45 minutes to do something I want. Twice a day if I’m lucky and have had a non-eventful week otherwise.

I’m conceding that I have not healed to the level of a normal healthy person… that I have a chronic illness and limited energy. I have one day per week to draw. Today was that day. I did not draw on my cat-art-business-plan-thingy but I did draw a few more Inktober drawings:
Day 2 “Mindless”:

Mike the headless chicken. Lived for months after getting his head chopped off.
Day 3 “Bait”

Day 5 “Build”

Day 6 “Husky”

I had fun. I love to draw.

Every time I draw it gives me such enjoyment. I have a hard time getting started (really! I have to circumnavigate procrastination while there are so many other things I could do) but once I’m going I’m going. Today, these are all just warming up drawings. Once they’re done I’m ready (and eager!) to do the real stuff. The cat stuf. But by then it’s been 45 minutes and I’m tired and I need to take a break. Which always last an hour if not more.

If I’m lucky I can then return to drawing. Today I did some sewing instead (still working on that August quilt. That I was going to start and finish in …. August.)

But now I know. I have one day per week for drawing. No use feeling bad about the other days. I still get a lot done those other days. I’m not keeling over, even though there’s a lot of pressure such as the heat wave, the stress of the court procedures and those darned neighbours that have their builders cause a ruckus for whole days on end (days when I have to retreat to the cabin because I cannot escape Fight or Flight when the whole house vibrates) Any drawing or preparations I get squeezed into those days is a bonus.

I feel more calm now, with this knowledge. Even if it means my cunning arty business plans are even flimsier than I thought.

I will also take in to account that I get a lot of drawing (or sketching) done when I’m out of the house and in a city, in a café or library. Do more of that. Bring sketch book everywhere.

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moving house, naming priorities

This is my house, we’re putting it on the market next week:
Brede-Haven-Panorama-Full
It’s a marvelous house! Historic, at a canal in the historic city of ‘s Hertogenbosch.

Lots of pictures at the end of this post.

One month ago we were having a talk, just checking with each other about how are you doing, how will we be doing the next five years, are there things in the running of the house hold we should change. And out of the blue my husband says that, actually, he’s ready to move. Move away to the country side. He’s done with being the custodian of the inner city, of the history. He would like to live a more internal life for the next decade. Focus on living together in a house, in nature.

This suits me fine. I will miss the city life. I am fond of city spaces and how people use and experience the city. But I am more fond of my husband and I would like to explore this new adventure with him.

Health wise I have now found my optimum. I am not well but I am functioning well enough. It means I have to set priorities and living in a quiet house, somewhere in nature, will nurture me more than an interesting city that offers impulses all the time.

In the past four weeks we have decluttered the house and done all the chores we’ve been planning for years. My husband is delighted with the space and room we have found. As am I!

For the first time in my life I now tidy up after myself. And enjoy it.

Look, this is my attic studio:

You see my press in the far right. I am going to use it soon, it is at the top of my priority list.  Wood block reduction prints. And blind printing.

Being an artist is my top priority, it’s my “daily duty”. My other “daily duties” are fighting manure fermenting and biomass plants; co-running the house-hold; managing my health and social engagements.

These are the things that have a place in my every day life. House hold and health are every day things. They get combined with one of the other three. So each day I determine: is today a day for social fun, for making art or for fighting pollution? That’s how I start my day. Because of my health it is OK if this main theme doesn’t get my attention until 14 o’clock, because that’s about the time my body gets going.

Besides three things that have priority every day there are my hobbies. These are my past times. My sit-down-and-enjoy-the-moment-things. They are luxury and are meant to be enjoyed. They are particularly enjoyed in a nice decluttered room!

My hobbies are knitting; spinning; quilting; ceramics, sewing clothes and doodling. For ceramics and sewing lessons there are fixed days in the week, because I have lessons in a studio. The other hobbies I do as I feel like them. But I should do one every day. It makes me happy.

So that’s how I do my days now, and it fits my health profile.

Here are some more pictures of my house. Lots of winter pictures somehow…

View of the bedroom at the back, over the river Dommel:
achterzijde uitzicht oliemolensingel winter 2018

view from bedroom at the front, at a Winter night:brede haven straatverlichting 1e verdieping uitzicht

My cat wants something….lillepoes wil kattengras

Poekie enjoying early Spring in my back garden:poekie in de tuindeur

Spring 2019, I saw how the harbour at the front made light dance in my bedroom door:weerspiegeling gracht op de eerste verdieping

Poppies at my front door every year:
poppies bij de voordeur

View from my bed room at the front across the whole harbour towards the inner city of Den Bosch:winter kerstboom buren brede haven 2018

View straight ahead from the first floor bedroom at a Winter night:winteravond 2018 brede haven den bosch

Sun rise at an early Winter morning:zonsopkomst winterochtend brede haven 54

Full winter panorama of Brede Haven ‘s Hertogenbosch:
Brede-Haven-Panorama-Winter

determining the meaning of life: don’t use logic.

In the last decade I’ve learned that logic is not the right tool to evaluate (human) life with. Our knowledge of cause and effect does not render logic any authority for appraising life. Logic is just a tool for survival. Some specimens use talons to survive, some have whiskers, others have a brain. Probing the meaning of life with any one of these is legitimate. One is not a better tool of assessment than the other. Logic has as many shortcomings for judging life as do talons or whiskers.

One of those shortcomings is that logic uses premisses and those premisses are false for this particular task. Yet they are rarely examined when following a train of thought that leads to a desperate view on life.

Some of these premisses are: “What happens next is important.” “Human life is important.” “Human life is insignificant in the grant scheme of things.” “My life is important.” “My life is not important.” “Time is important.” “The flow of time is important.” “Time dictates something.” “Time waits for no one.” “Things should be different.”

These are all false because they have no place when trying to determine the meaning of life, when trying to attache a value to life. For example they prevent proper validating a gesture of care, of physically holding someone. And I hope we all agree that touching someone, holding someone, has a place when determining the value to human existence.
Another example: time flows different when you hold someone. When you cuddle your cat. When you’re about to fall asleep. When you meditate.

If you do accept any of these premisses and jump aboard that train of logic you’ll inevitably arrive at a dark destination. Not because the journey is wrong but because the depart was not fitting the quest and you shouldn’t bring a train to a daisy fight with kittens.

You should know that the very fact that you are trying to understand and overcome life and the world with your brain is a sign you are trying to regain control over something. It’s a defence against a feeling of powerlessness. That’s the real station of departure.

It is this knowledge that helps me actively step away from these trains of thoughts. I can’t ride them out, I know I can’t win on the logical plane. I should not examine the place of the court system in society. Not analyze the role of women in cultural interactions. Not ponder the way we humans organize our society. Destroy the natural world. Transport cattle and pigs on the roads. Dispose of our waste.

And although I cannot see the falseness of the premisses when I feel this way I have grown to trust that they are. Distraction is the solution I apply until I feel well again.

Haapsalu Blue Train 00252:
 Haapsalu Blue Train 00252pic by David Allen Wizardgold

you get the illness that humours the universe the most

OK, so I have this ME thing down now. I take my supplements, I take my hydrocortison, I take my rests, I wear my ear mufflers, I eat the fibre free FODMAP no oestrogens low tyramine diet and I take my daily walks to get the intestines moving and clear my brain chemistry. I have a life again! I’m not thinking about my body all the time, I’m thinking and doing other things. :)

Now guess who got bursitis of the hips?

No walking, sitting or using stairs for me.

Guess who lives in a house which has every room on another level starting with the two living rooms having a 1.20 m height difference between them and a kitchen that’s below ground level? Guess whose art studio is in the attic? Guess whose sewing room is somewhere half way?

Guess who now cannot attend events and knitter parties specifically chosen this year to celebrate recovery and getting back a life? I cannot get there because I can hardly sit in a car or train.

OK new game.

Guess who started to see double when she spend Summer 2014 resting on her back for ME with her first iPad about 30 cm from her face?

Guess whose orthoptist then told her it couldn’t possibly be caused by having your iPad up so close? So I spend the next few years enjoying my daily rests (and nightly insomnia) like that.

watching sid the science kid on the ipad pic by jenny cu

Guess whose diplopia got significant worse? I’m at prism 6 now. That’s really bad. Guess whose orthoptist now tells me this iPadding hurts my eyes and all the kids are getting diplopia and nearsightedness because they are buried in their electronics? I’m so hip.

(don’t talk about hips)

Guess who doesn’t need reading glasses anymore because the nearsightedness cancels out the ageing eye? Guess who still needs glasses because diplopia is up close too.

Guess who needs her eyesight for her most dearest activity: drawing?

Final question: guess who has the kind of personality to implement solutions in a rigorous way and get things sorted?

Muffin Tin Monday - puzzle time! April is Autism Awareness Month! pic by Melissa for Autism Awareness Month.

I am standing and typing this. I have arranged a stand up workplace in the front sitting rooms. I’ve brought my drawing equipment here. I am thinking of bringing the sewing machine here too. You can sew standing up.

I’m getting new glasses. I have a timer that reminds me every 20 minutes to look up and gaze afar, resting my eyes.

I found a blog about aligning your skeletal structure, your posture, so the long muscles and tendons work the most efficient and do not bother the bursea. It’s Nutritious Movement.com, blog from Kate Bowman. I now re-adjust my post every 7 minutes or so. Until it’s a new habit.

This is my timer, from Bengt EK Design:

Because life is so funny…

Working again

I’m working again! But not really.

Since January I feel so much better and energetic that I’ve got actively into art again. I’m not ready to declare the project yet because these young saplings need a lot of protection before they’re viable. But I think about it all the time and go to sleep with many plans and visual images. That’s what I recognize from when I was full time working. Be it in art or in engineering.

The thing is: I cannot get myself to work every day. It’s the weirdest thing. Still so much time is needed for maintenance of the body, the house and the social life that not much energy is left for doing the thing I want to do most.
Houseworkpic by Pascal

This “getting healthier all the time” is not an easy task. So many days I’m back in the half-brain-state, where I have to just rest and pace and not push myself. So many other days I crumble under the pressure I put myself under and have to actively back off and take it easy. It’s really weird.

On other days other self chosen tasks take up my energy allotment. There’s again court documents to be written and I’ve taken it upon myself to do that. It gives great satisfaction to work on them a whole day and then send it in. But it’s not the thing I want to do the most in the world. Or is it? The thrill is real. The feeling of accomplishment. These emotions are confusing.

I feel I need to choose because I cannot do all the things. The art is suffering from the time I spend on the intellectual things but both give me great pleasure. And then there are all the things I do not do: the physical things such as kayaking, singing, dancing Flamenco or playing slap bass guitar.
Banksy in Boston: F̶O̶L̶L̶O̶W̶ ̶Y̶O̶U̶R̶ ̶D̶R̶E̶A̶M̶S̶ CANCELLED, Essex St, Chinatown, Boston pic by Chris Devers, art by Banksy

Of course I’m also terrified any time I don’t feel well, be it physical or mental. Terrified I’ve finally broken “the black box” and will be permanently ill. And if the present situation doesn’t terrify me I’ll think about the future and let that scare me silly. “How will I fare in an old people’s home? Surely they won’t cater to my diet or to my need for silence. I’ll die early!” “What if my husband dies? There’ll be so many things we didn’t get to do! And I won’t know how to command the Wifi and all the other hacks he installed in the house.”

I actively have to take in the mental reigns and put my mind onto other tracks. Live in the here. Live in the now. But it requires management energy, sigh. This on top of checking my mood all the time because it wanders so easily off track when not supplied with the right minerals. That continues to be a real nuisance. O man, imagine being pregnant or at puberty! When your mind is not your own. Awful.

So now I have a dial to tweak my sleep and guess what: I feel a failure every time I wake up after 4,5 hours again. If I manage to succeed (yes, with the 5-HTP and the FODMAP and the low-fibre and the stomach exercise AND THE HOUSE DUST) I don’t wake up after 4,5 hours. I wake up after 6.

sleeppic by masha krasnova-shabaeva

That’s my current reference for succes…. 6 hours of sleep. Still not enough to live a healthy life on. But not as wrecking as 4,5 hours. Still, with the good diet and other de-stressing measurements I now have a peaceful lying awake after those 4,5 hours. Not the tossing and turning and brain burning scheming social justice/world domination plans. It’s more of a 2 hours surfing imgur kind of insomnia. Then take some Hydrocortison and then get another 2 hours of restorative sleep. That too is different from before. But still, it makes me get out of bed at 10 instead of 6.30 and it steals my productive hours of the day.

Today I had a CT colon scan, a virtual colonoscopy. Hopefully it will show an anatomical reason for my lifelong waking up after 4,5 hours. The measurements I state above do not give me 100% result. Not even 50% anymore. Don’t know what’s going on. But I now feel like a failure almost every night, just because it’s no longer a total mystery. It’s a 85% mystery…

Doctor, please!pic by Edwin van Geelen, carving to be seen when floating on the canals of Utrecht.

I do know the colon-doctor rolled his eyes when I first came to him. It’s so out of the ordinary what I told him.

This attitude of his alters my approach of him next week. I’m no longer expecting him to announce an all-relieving “duh!” diagnosis. (I was hoping but now I’m no longer). I’ve set my aims at getting a copy of the scans, so I can look for myself whether there’s a steep bend in the colon (at the hepatic flexure) or perhaps a narrowing which can explain the symptoms. Perhaps take it to an expert in a different hospital. From the man himself I hope to learn a bit about how long people can go on eating low-fibre. I’m guessing one needs to shave off the villi in the small intestines every once in a while. Hoping to learn as much as possible from the man. Jotting down questions throughout the week, as they come to me (usually at night).

Well, that’s it. Just wanted to make a note that being in recovery from ME/CFS is not easy and is not a straight line. And it doesn’t make one happy per sé. Being happy requires quite a bit of work from me.

And I now have to deal with “normal people” stuff again such as: “there are only 24 hours in a day”.

24 hours neon Sign pic by Mike Mozart

I have now learned to prioritize the one thing I love to do most in the world. And I am very surprised to find I cannot do that thing every day. And there’s also sadness that one can choose only one thing to prioritize. I have to put so many other dreams aside. I have to be frank about them never coming to fruition and I need to shed some tears about this. There’s just no time nor energy. Weird world.

Little bit of blues while I continue to work my way up without any guarantees whatsoever:

Ladybird and the Blues!
pic by Danny Perez Photography

Don’t worry. Just focus on your happy dots and beautiful face markings, on the sunlight and on walking on a surface with all these funny little hairs. It’s a marvelous world, once you allow it to touch you instead of trying to command it.

Adequate Hydrocortison Supplementation

The past ten days have been a wonderful, wonderful ride. I’m alive again!

I’ve upped my Hydrocortison daily dose from 20 mg to 35 mg.  It may sound like a lot but actually it isn’t. Anywhere between 20 and 50 mg per day can be normal for an individual. 35 mg seems to be my sweet spot. I can feel when it’s too much or not enough. Very interesting experience!

I also learned how to spread the dose throughout the day in a more physiological way (take 2/3rds of the dose before noon, take it in increments of 5 and 10 mgs)

Alive again! I’ve got energy! I’ve got stamina! I’ve been doing things I haven’t done since 2008. Things like taking a shower before bed. Just because I felt like it and wanted to feel the warmth of the water. I could never do that because it would affect homeostasis badly. I had to plan my showers. Each day I could chose to either take a shower or cook dinner. Couldn’t do both.
Now I can :)

I’ve taken walks into the city. I’ve started to do a little bit of exercising. One morning I just took the car and drove to my friend, just to have tea with her and eat all her chocolates, and then I drove back home and did some other things for the rest of the day. Without crashing.

Reverse Therapy is a tremendous help in keeping things fun. Doing things because I want to do them, not because I can do them.

Suddenly giving my body the hormone it lacks has affected other hormones. I’ve noticed changes in Thyroid hormones, Testosteron, Estrogens and Progesteron. Insulin too, probably.

I have the good sense to do HRT on a dose that doesn’t exceed normal daily production so any effects I have filter out of the system within a day. It’s interesting how I can influence it though. With food, with Progesteron cream, with calming the nervous system.

Today my medical tags arrived. I’m going to wear one of these whenever I leave the house and am in risk of getting in an accident or experiencing dehydration.
Untitled
I may order some new ones, with less info on the front but more readible. These tags are quite small in reality. I doubt anyone who finds me collapsed in the street will notice. And/or has her reading glasses nearby to read the information ;)

  • I will wear it with a white band with red crosses on it. I’m thinking of embroidering them myself. I could also learn bandweven…
  • I will wear these “upside down”, not in the way that I can read it but in the way that anybody grabbing my hand can read it. Seems more sensible.

I ordered these medical information tags from a wonderful company here in Holland: Healthband. They are very good, fast and reliable. They keep an eye out for optimum spelling and lay-out of the text and won’t start engraving until you give the final consent. Really good costumer service!

It’s a woman and husband company. She’s a diabetic and wears one of these herself. They noticed we lack a good supplier in the Netherlands for sport id tags and medical id and sos tags.

The tags themselves are good too. No sharp edges and quality engraved.

I chose to direct my information towards courages passers-by who find me collapsed or delirious from dehydration. I don’t dazzle them with the medical info, that’s all on the back. I try and tell them exactly what to do:

  1. feed me my pills. They’re in my bra. Do it! I’m in danger for my life.
  2. call the emergency services and say this: “adrenal crisis!”
  3. say the name and dose of the solution of injectable cortisol I need. I want the medical personal to know.

 

The hydrocortison is wonderful :)
I no longer need a wheel barrow to be carried around in to enjoy life:

It may still be a honeymoon period. I’m still figuring out a lot of things, for example this morning I woke up a zombie, I have difficulty getting things right through the night when I’ve had my insomnia again.

Insomnia!
Now I know for sure! When I/you wake up at 3 AM and are wide awake for 1,5 hors, that’s a cortisol surge. It is!
I can now reproduce it. It feels exactly the same.

The insomnia I have had my whole life is that: a cortisol surge at 3 AM. Puzzle solved!
Now onto the next: what causes this surge? That’s one of the queries I’m on now. That and the relation between homocysteine and my weird (scary) heart rhythms that I have since 15 months. Because I’m still doing the mB12 thing, now combined with Phosphadytil-serine which drives another keg in the same methylation system. My GP put me onto this.

It causes mild brain storms, literally. But luckily I can move more easily now and movement is marvellous for levelling hormones and weird brain chemistry. So, I’m off for a little walk now. It’s beautiful weather outside here.
Untitled

The inability to make choices

Watching an episode from BBC series “The Brain with David Eagleman” I realize that normal people can do something I cannot: make choices.

Vanilla or Strawberry? Go left or right? Wear the blue or the green shirt?

ehhhhhhh………
pic by Svilen Milev

I don’t know and I cannot chose. I am unable to. I’m physically unable to. It just won’t come. I am stuck.

The documentary shows a lady who has the same characteristics. We’re both engineers and we both start to cry when having to make a simple choice.

Eagleman confuses choices with decisions which muddles up the episode somewhat. Decisions are rational processes and can be done by anyone or a computer when given the options, the parameters and the values to attach to the various components. I do these fine. Excellent even.

Choices are something different. They are rooted in personal preferences, whims and emotions. No one else can make a choice for you.

Ofcourse these are two extremes on a spectrum, in real life most decisions and choices have elements of each other. Decisions involve emotional whims and choices get based on rational arguments. But fundamentally they’re different.

Eagleman illustrates that to make a choice/decision both the rational part and the emotional part of the brain are necessary.
The woman had suffered brain damage in a motor cycle accident. She had the emotional and the rational part in her orbito-frontal cortex disconnected. As a result she’s now unable to make choices or even decisions. I don’t think she can work anymore.

She’s seen standing in front of a wall filled with different kind of potatoes and she’s just unable to actively pick one. She’s overwhelmed by all the options. She feels like crying.
She says she can’t process all the information, there’s just too much of it.

Tatertastic pic by Teresa Stanton

I have the same. But different. I can process all the information, I can see all the options, I can weigh them. But I’m not able to chose.
When it comes to a choice, where the options are rationally speaking all equal, I am unable to chose.

I come to a halt. Literally. If I push through I’ll get stressed and will cry. Just like the lady in the program.

Like I said, decision-making I do fine. Give me parameters or a goal and I’ll set out the best path towards it. I’m here for mashed potatoes? We’ll grab this one, it cooks to mush.

But you asking me whether I want fries or mashed potatoes for dinner? We’ll be hungry till Easter because I cannot make up my mind.

Easter Bunny Pals Deconstructed Fish Tacos LunchBot Bento< pic by Sheri Chen

This documentary points me to a possible cause: lack of integration between the logical and the emotional brain parts.

In me, I don’t believe it’s a physical connection. With me I think it’s a life long habit of preferring the rational and suppressing emotional processes. Not the touchy-feely weepy infatuated emotions but just the basic emotional running of the bodily system: small preferences, little whims, a tendency to make yourself comfortable.
I don’t have these on my radar. But I’m sure they’re there.

Eagleman and Reverse Therapy both offer the same location where to look for them: in the body. Focus on the body, relax and it will tell you what your emotional preferences are. A small tension in muscles; a little hint of drool at one option; seeing yourself in the near future with the one choice and liking what you see. Those are the clues.

doors pic by Ivan Malkin

I’m still learning to pick up on these. In the mean time I had developed some rational fixes to get to a choice:
1. in a choice all options are equal in value. Meaning there will be no wrong choice, whatever you chose. (realizing this eases my stress)
2. chose the option on the left.

It’s not ideal and it certainly doesn’t give the emotional pleasure of making the best choice but it gets me past the inability that hinders the lady in the documentary and that causes me so much stress.

Interesting stuff. This too fits in with the diagnosis of my illness. And my recovery from it.

Here’s the description of the episode I saw:

“The Brain with David Eagleman –
4. How Do I Decide?

Series in which Dr David Eagleman takes viewers on an extraordinary journey that explores how the brain, locked in silence and darkness without direct access to the world, conjures up the rich and beautiful world we all take for granted.

The human brain is the most complex object we’ve discovered in the universe, and every day much of its neural circuitry is taken up with the tens of thousands of decisions we need to make. This episode takes a journey through the unseen world of decisions, and how they get made. We start with a simple one – choosing a flavour of frozen yoghurt – and learn that every decision we make is born of a ‘winner takes all’ competition between rival neural networks.

We meet a woman who is unable to make decisions because of damage to her orbito-frontal cortex – an area that is key to integrating the signals streaming in from the body – and discover that feedback from the body is vital to the decision-making process. Dr Eagleman reveals that something as simple as when you ate your last meal can even influence life-changing decisions, as a study on judges showed they were less likely to give parole when they were hungry.

So many of our ‘conscious’ life-defining decisions are actually steered by unconscious influences, whether it’s deciding whom we find attractive or how to vote in the next election. Professor Read Montague reveals that he can be 95 per cent certain about which political party we will vote for based on our brain’s response to disgusting imagery. The more disgusted a brain response is, the more likely that person is to vote conservative.

Finally, Dr Eagleman takes a look at how we can take better control of the decisions we make, and uses an exciting new technique called fMRI neurofeedback to retrain the brains of drug addicts who want to make better decisions, to say ‘no’.”

One year later, a second chance.

Today it’s one year ago that we brought the cat home after she’d just been at the vets for a week and had barely survived. The long phase of recuperation was about to begin. Eventually it would take months and it was deep september when Lillepoes started to play again and lost all the grey hairs that had appeared around her nose.

For me the recuperation from that stress took at least as long. In January/February 2015 I lost all the health gain I had known since that miracle day of the 1st of May 2014 when I healed overnight from my ME because of the stress. I knew it would take months even IF I was able to get it back. Beside the cat-stress there was the court case concerning the manure facility that is planned in the field next to my cabin in the woods. For this case I had to perform “engineerily” a couple of times throughout the last year, starting on the 6th of February 2015. It was a conscious decision to do the work but I knew it was going to cost me, health wise.

It did cost me. And the grey hairs that I have grown in the course of 2015 have not gone away but I’m OK with that.

I did bounce back. Somewhere in Octobre I refound the relaxed state of being that is so important to my health. Around the 8th of December I was able to have some fun again without suffering an ME crash. By then I had learned to cook curry. I had learned to make custard from just egg yolks, heavy cream, salt, pepper and vanilla. Two dishes that support my health and that are welcome next to the endless pots of chicken soup that I make. I had written three or four reports that held up in court, that were not as incoherent as the ones I wrote in the previous years (this case has been active since 2013 I think. The final ruling is expected later this year. No idea, I think we have a 50/50 chance). And I had been living in the city for 8 weeks and felt alright which is a miracle because since 2009 I’ve not been able to stay at the city for more than 2 weeks without getting all flustered and hyper.

Later in December I started Reverse Therapy that boosted my recovery from ME tremendously. I then lost my zen again. But a session with my RT coach put it back in place again.

Late December I also did a Living Blood analysis and it was very cheerful to see the contents of the smallest drop of blood magnified and all the cells still living, moving, active as if they were still part of my body. It taught me there were not a lot of parasites wriggling about in that speck of blood. White cells looked impressive, there weren’t too much of those around either so no raging infection anywhere in the body. Red blood cells looked healthy. There were little specks of light wriggling all about and the technician said those were nutriënts. My blood was full of it! Looking good. The shape of my red blood cells indicated a shortage in vit B12 so I will pursue my cautious course of supplementing it.

This healthy LBA did make me “cheat” afterwards a bit easier on my diet. Chocolate every day! Now, 4 weeks later, I’ve gravitated back to healthy eating again because I can feel how bad foods are a burden to my system.

The Reverse Therapy is marvellous! It’s my ticket to health again. Not the health I had ten years ago but that’s ok, I wouldn’t want to be that person again anyway.

It’s still early days. I’m still at the learning new habits stage and that’s not easy. But because of RT being so tailormade to a person and, really, just the personal message your body is trying to get through that thick skull of yours, it’s not hard either. It’s very fitting.

For me, personally, I’m one of the people who has to learn (that it’s ok) to slow down. It’s OK to just sit back, to let life happen and to smell the roses. To “loiter”. (there’s an excellent Dutch word for it: lanterfanten.). Be a playful human without second thoughts.

Most people in RT need to learn to not be afraid, to not be so cautious and to go out and have fun. And they need to learn to stand up for themselves, set boundaries and express their feelings.

I’m one of the 40% minority that has plenty of fight when it comes to fending off other people but instead has a hard time to calm down.

There are two secret messages that I need to hear over and over again until they are ingrained into my mind and soul. I am going to share them with you but this is a one way street. You are not to communicate with me about them. They are between me and my body and by telling them here I just want to illustrate my RT proces to you, I’m not interested in your opinion about them. Discussing your opinion will interfere with my proces so please refrain.

These are the two main messages my body would like my head to know. Two pieces of wisdom that are news to me. I have lived my whole life without knowing that:

  1. we are safe. Here and now: we are safe. We are warm enough, fed enough, there’s no noise, there’s no chance of assault. There is no need to prepare for eventualities because We. Are. Safe.
  2. it’s ok to sit back and “lanterfant”. To just enjoy the moment, to live here, live now and “be not-useful”. Living here and now really is the meaning of life. It’s what I, the body, was build for and in which I excel. Enjoy it.

There we are. News to me! I’ve lived my whole life not knowing this and instead obeying a set of opposite rules. I’m sure you can see how opposite rules put the Autonomous Nervous System on edge. Drains it. Cause failing adrenals. Causing system wide collapse. ME.

Whenever I remember these two messages my body relaxes. My ANS relaxes. There’s a lot of mindfulness involved. Meditation. However you want to call it. In terms of the ANS it’s the Relaxation Response that gets triggered. And that’s what healing me.

Still ill?

Well, yes and no. The Addisson’s won’t go away. And I’m still weak. The sensitivity to a lot of foods and atmospheres remains. I still need to lay down every day, both for resting and for digestion, but these days I’m looking forward to having an hour of peace and quite. The rest and digest is a lucky byproduct. It’s no longer a chore I have to perform in order to beat this illness. It’s a luxury, to just lay there for an hour and lanterfant (mostly knit. Or surf the internet.)

I still take HCL with my food. I avoid gluten, beer, sugar, raw vegetables. Take all the supplements people with ME are supposed to take. I still do all the good things that got me from severe ME to a housebound level. Most days I’m still housebound, if you look at it from that end of the periscope.

But that’s just it. Looking from the outside you’d say I’m still doing all the same things but my perspective is 180 degrees different and that’s why everything is different now. I’m no longer an ill person. It’s true!

I no longer define myself. I no longer let my head-voice be the narrator of my life. My body is the narrator now and it prefers living in the moment. I’m trying to comply. It’s a bliss when it works. There really is a whole other realm of reality, in the moment.

This must be where meditating people get their kicks. (I’m not the meditating kind). This must be why the mindfullness people can be such a cult. (I hate hearing other people breathing or rave about the grass under their feet)

I’m doing it via Reverse Therapy. Same difference. Tailor made to suit me.

The other bits of Reverse Therapy are making me gain stamina. Physical stamina. I’m going out, doing things. Driving my car, visiting friends, standing on my feet for hours. I’ve experienced physical tiredness for the first time again. Not exhaustion but just physical tiredness. The kind that goes away with a good night sleep. The one that might get you a bit of muscle pain the following day. A novelty!

I wholeheartedly recommend Reverse Therapy to anyone with a chronic illness. Especially when you’re a perfectionist or tend to rationalize everything in your life. It won’t heal you. Recovery is a byproduct from this type of coaching. It will make you happy. It will show you you have a life. And that there’s a bloody marvelous way to live it, a way you’ve overlooked if you’re anything like me.

Reverse Therapy: recovering from ME/CFS

Had my first session last week, a Skype session with therapist Lyn White in the UK. This works.
It’s the way to keep the body (autonomic nervous system) out of Fight or Flight. I’m no longer wired. Instead I’m relaxed, chill, happy. Without pain, without tiredness.

I’ve just spend four days on a road trip and a midwinter wool fair. First day I drove for hours and hours. Second day I stood on my feet in a wool booth and talked to people for 7 hours. Third day the same. Fourth day drove back. All the time was spend with a friend, I was seldom alone.

No crash, no pain. No worries, no strain.
This is unheard of.

I did have my usual insomnia (and then some due to mosquito bites) in the night but I performed wonderful all of the days nonetheless.
I was not overly sensitive to noises, smells or the presence of my friend.

Back home there has been no crash. There was tiredness, of course. There were bouts of head aches because of all the impressions and things I’d seen. A bit of a hoarse throat because of the unusual amounts of talking. My feet tingled.
But I’ve been so cheerful all these days! And the days after, here, back home.

Reverse Therapy and Mickel Therapy are what works for me.

I’m not going to talk about their medical opinions about what ME is. Just know that both therapies give a tool box to keep the nervous system calm.
And whatever their, mine or your own theory is about the relation between nervous system and ME/CFS, keeping the former calm helps to alleviate symptoms of the latter.

I am VERY GLAD to be back in the calm again. I had lost it when life stresses hit us in January/February of this year.
(I had found it in the course of the years I spend at the cabin, alone. Well fed, warm and finally without that stupid ambition. Once I did Gupta Amygdala Retraining I was without symptoms too but the calmness hadn’t ingrained. With Reverse Therapy it has.)

For the past few months I tried DIY Reverse Therapy, having read all the things that have been written about it and understanding its principles and its ideas. But it was not the right way. Having a coach is much more efficient. Because my twittering brain is always trying to keep on top of things it kept getting in the way of actually applying Reverse Therapy. A chatterbox in the head is precisely the thing the nervous system doesn’t need.

Long story short: a whole new world has opened up to me. I’m calm and am experiencing bouts of happyness from the very core of my bones. Symptoms are dwindling. I’m without worries. I had a wonderful weekend with my friend.
I’ve started dreaming about (and planning) holidays.

Reverse Therapy and Mickel Therapy are precisely the thing I need. On top of all the other things I’ve learned to do over the years to support my body:
– take vitamin D because of where I live on the globe
– take extra vit D because my receptors are wonky
– dabble in mB12
– keep levels up from minerals Zinc, Lithium, Magnesium, Molybdenum, Selenium and Iodium
– avoid cruciferous vegetables (onions, kale, garlic etc.)
– supplement hormones I lack (Progesteron, Cortisol)(all body identical in physiological doses)
– supplement Progesteron to counter Estrogen highs during the cycle
– avoid blood sugar spikes and stress and practise sleep (restriction) therapy to sleep through the night
– avoid foods difficult to digest (boiled egg whites, raw food, nuts, leafy vegetables)
– avoid foods that “feel bad” (vegetable oils, caffeine, sugars, fried foods, vanillin, commercial chicken and vegetables that never saw soil or sunlight)
– avoid tiresome people or learn how to deal with them without investing energy
– rest flat for one hour, one hour after the last bite
– eat small portions
– aid the acidity of the stomach with HCL
– aid the lymphatic system with stretching, yawning and lots of full fats (butter, coconut fat, fatty animal tissue)
– keep the nervous system relaxed (Reverse Therapy, doing fun things, be cheerful, having cups of tea, dancing in the living room, cuddling the cats)

What else?
With the cortisol pills and the managing of my own stress levels I can tune the immune system a bit and have it be extra vigilant at times when I’m surrounded by lots of “germy people”.
I have gotten only one cold since I fell ill in 2008. And that cold was when I was severely stressed because I wanted to go on a cross-Europe train tour. Extra stress = extra cortisol = suppressing of the immune system = invitation to opportunistic viruses and bacteria.

And finally: I’m a firm believer of practising Mental Hygiene. You are not obliged to think what you think. If what I think makes me feel bad (worry, disaster scenario, reliving bad memories, focusing on bad aspects) I can and I should correct myself.
Think of something else. Anything else. Think of ants. Think of blue things. Think of the fun thing that happened the other day. Go watch David Armand mime the lyrics of Queen’s Don’t Stop Me Now.
There is no thought police in my head, I am free to think about something else.

 

PS I’m listening to a Norwegian podcast. For the first time since I fell ill. I can now listen to Norwegian again without feeling sad :)

As a result I’ve just started thinking about visiting that country again too. I can’t say this feeling will stay. I can’t yet claim I am in recovery. But I sure am happy and healthy, right this minute.

A narrating species.

We are a narrating species. We talk to ourselves, in our heads, about anything and everything to try and make our lives into something coherent.

It’s in our blood, it’s in our genes. I guess we need it to survive.

We think and talk about our past, our relationships, our careerplans, the news and everything in between and we try to make sense of it all.

Life is very different for species who do not perceive time as passing, nor life as a string of causations that can be manipulated. Species who live more in the moment have a very different existence. Cats. Dogs. Horses. Beetles. What a different life, what a different world! A very interesting perspective to ponder. It says much about how we live life and even more about how we rate it.

As this constant narrating is a human trait I’ve decided to employ it for a problem that I’ve been having for two deccenia now. The problem is this: when I was told my brother had suddenly died, half of my (figurative) heart was ripped out and I’ve been living with half a heart ever since.

(My mother is convinced I’ve got PTSS since that moment and judging by the chill in my body and my neck hairs standing on end when she told me this only a few weeks ago I’d say my body agrees to some point. (The thing is: I feel nothing thinking back to that moment. Nothing. I think I’ve done EMDR on that moment. I know I’ve felt emotions about that moment before but now: nothing. This might be indicative. Something to keep in mind and address at a later time.))

I was told in the dead of night. By an aunt who drove cross country (that’s two hours maximum in my country) and brought my other, younger, brother. My parents were out of the country at that time. The previous night, just before I fell asleep, I had congratulated myself with a pretty nice life. I was content, if not happy. I went to sleep and a couple of hours later the doorbell rang and I was told, while still groggy with sleep. I slammed forwards, doubled over, and screamed. That’s when I saw my heart ripped in two, a very strange experience. It floated away to the right of me.

I tried to postphone having to stand up or breathe in again because that would mean the beginning of a series of breaths, in a new world, with a new order. Then my younger brother was in my arms and we held on to each other. Then the whole thing began: travelling back to the hometown; getting hold of my parents; arranging the funeral; returning to university. Many new breaths and a life in a new, unknown direction.

Up until then I didn’t know me and my deceased brother had been two people. We only differ 20 months in age and in my mind we had always been one. Called “us” or “we” (but in a not exact term).

We both brought things to this entity. I was the outgoing, conquering field marshall. I would defend us both and coach him in a world that perceived him as a weird smart kid. I looked to him for guidance on how to be (true to) yourself (how to behave at the new school; how to explore which hobby you enjoy; how to handle the views that our upbringing installed upon us etc.)

I think you could say we were some sort of twin.

Well, in 1993 he died suddenly (myocarditis) and he was only 19 years old. I was 21. For the next three to four years I was in a state of shock. I walked around with a big hole in my torso and the cold wind swept through and the severed heart threads that bind us to our loved ones where trailing behind me in the cold and the dirt.

I mourned for seven years (unnecessarily prolonged by anti-conception drugs. Stay away from them, they are poison.). I graduated, found a man I loved and secured a home and a job. When I finally came to my senses (stopped the drugs and mourning stopped within one day. Ridiculous.) I could address this hole in my body. I slowly learned to fill it. With self love. With interests to pursue. With new experiences, with new people.

It was made clear to me that having half a heart is not normal. I visited a Shaman to try and help me. She said I had stolen a part of the soul of my brother and it had to be reunited with him. She did so. I felt a bit better.

On another occasion a healer massaged trigger points on my feet and lead me on a trance journey. I was in the womb and I was not alone, we were two. We were giggling. Birth was about to happen and one of us had to go. “See you soon” he said and I was born. I had never been one, I had always been two.

I went to therapy and learned to become an adult. Trust my feelings. Get over my daddy issues. I didn’t tell about the shaman nor the foot reflexology. My therapist was RET and these were silly things. We bumped into reverse transference and he treated me as if I was his daughter. We called it quits. I had learned to accept the existence of emotions and to not rely on mental constructions of the world.

I married. Quit my job, started a company, went to art school, got ill, was happy. I live my life. Once a year I cry about my dead brother but his passing has become a normal, healthy part of my life.

Now it’s 2015. My brother has been dead for nearly 25 years and I’ve been one-not-two for all that time now. I learned to live again, as one. I’ve learned a lot. I’ve grown mature. There is no trace of my brother anymore, not in life, not in me. Life has moved on.

Then tonight I watch the BBC series River. It’s about a policeman who sees his partner get killed. While he searches for the murderer he still sees her, his partner, around. They talk, they joke.

At one time he goes swimming with her little brother who’s blundering through life and, in his minds eye, she joins in. It’s night and they have fun in an out door swimming pool. Splashing and giggling. These are not his (altered) memories of her anymore, now he is narrating new plotlines around her.

That’s what triggered me. I’m a narrating human being. I could tell myself stories about my brother as if he were here now, as if he were alive. I could think up his wife, his kids, his dogs and the many cats they have. It’s easy to do, it comes natural to my species. And it comes natural to me because my brother is still a part of me, as there is still a part of “us” he could occupy.

You see, that hole in my chest is still there. I filled it but it’s still there. I filled it with furniture but there’s no occupant. Not a living being. He’s not there. No, not “he”… “us”, “we”… me.

Because it was not a piece of his soul that I lost or stole 25 years ago. It was a piece of MY soul. It was my part of him. The guiding part, the together-in-this-weird-world-part
I lost something then and I have not retrieved it yet.

I talked about this to my husband. To check whether not this way madness lies. Thinking up stories about a dead person? Sure madness.

At first he thought so and he warned me. But after we talked some more he narrated it in his own way and gave his consent. Because if you change the wording it becomes something different. Something more sensible.

Because what I lost back then was the part that allowed me to be frivolous in life. To be yourself in the world, without minding what other people think. To play. To explore, for interest’s sake, not for profit. To waste an hour, a day, dreaming. To follow an interest, just because you want to solve a puzzle. It was the part that let me join hands with intuition and skip away along the path unknown, without reason and caution stopping us and demanding justification and cause.

It was not even that, our contributions to “we” were not as black and white like that. Not so polar. But is was something like that. Something that gave me courage. Freedom. Confidence. Escape from trying to control everything. From trying to cover all aspects.

My husband now says I’m going to personify my intuition and will be using it as a guide. That’s not madness.

I say I’m going to narrate the life my brother is living now, in my mind. I know I can do so because I’m an expert on my brother, after all, we were never two. You can say I use my intuition. I say tomato.

I know my stories will not be reality outside of me, it will be all in my mind. But it will be “us” again and I will not be so alone in my own internal existence anymore.

Because that’s what is the real tragedy of having your heart ripped in two unexpectedly, that you suddenly find yourself alone. More alone than you ever thought possible, because you didn’t know you were two.

I want to think we never were. Two.

(One may feel like I’m negating the very existence of my brother by thinking about him this way. But you see, I’m talking about his existence within me now. That’s somebody else from the individual who was born four decades ago and died two decades later. A person whom you might have known, in your own right. Your own truth. True story.)