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.)

Paint me like one of your Dutch still lifes.

We trimmed the white rose outside and now I have a Dutch master painting resonating in my house.

I’ve been in the city for 5,5 weeks now and I’m doing ok.

I’ve started DIY Reverse Therapy and that goes very well. In the mean time I must not burden my body so I try to eat the good things. I’ve grown sensitive to chocolate (!!) and try to temper eating that. It’s probably the copper in it that makes me bad. I’m taking Zinc every day now and I need it.

I’ve been going out for whole days. Visiting a friend or attending a knitters’ party. By train. Walking in the city. Having fun, being happy

I do allright after such days. Do need vigorous resting afterwards but since one of my RT messages is that I am allowed to chill and relax for joy that’s working out for me. I do need to practise a lot though because the message is hard to learn. Being productive is so drilled into me, it’s our national Calvinism tripping me up.

we still see the influence of Calvinism in the values and beliefs of the Dutch.

Calvinism dictated the individual responsibility for moral salvage from the sinful world through introspection, total honesty, soberness, rejection of ‘pleasure’ as well as the ‘enjoyment’ of wealth.”  quote Eleonore Breukel 

I’m still very much a beginner. Make lots of mistakes. Mistakes take time with ME.

 

the reason to live.

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

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

pic by Neil Gould

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

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

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

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

pic by Asif Akbar

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

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

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

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

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

pic by Neil Gould

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

a still life of lemons and art

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

pic by Keith Syvinski

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

pic by Jeremy Hanke

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

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

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

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

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

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

pic by Ruth Harris

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

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

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

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

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

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

IKEA art by Mike Toy, prone to invisibility.

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

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

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

art by Milton Avery

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

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

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

affordable art by CorellaDesign on Etsy

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

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

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

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

The need to reinvent myself. Again.

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

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

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

 pic by bugdog

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

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

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

 pic by Andrzej Pobiedziński

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

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

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

pic by Sue Byford

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.

20140603-103959.jpg20140603-104016.jpg

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).