the cause of my 3AM-5AM insomnia

I have this typical insomnia:

  1. fall asleep easily
  2. wake up at 3AM
  3. lie awake for about two hours, being wide awake, very alert

Upon examination there are a few characteristics to consider:

  • I wake up sweaty, with a heated body. I can’t go back to sleep unless I cool down. This points towards some sort of stress reaction my body is having, causing me to wake up.
  • The mental alertness is ridiculously high. It’s like I have a pinball machine in my head. It’s not anxiety, it’s more a superability and -willingness to solve a problem. This is a dopamine excess.
  • The 3AM is not 3AM. The insomnia occurs pretty much precisely 4,5 hours after I fall asleep.

These three things: stress reaction; dopamine excess and 4,5 hours interval have now led me to the cause of my insomnia. It has to do when the internal workings of the machine trigger the neural wiring which reacts violently.

A small intestinal problem triggers my overexitable neurotransmitters.

It takes 4,5 hours for food to traverse the small intestines. It then enters the colon. There, in my case, it remains. It doens’t travel up the ascending colon because it cannot make the curve near the liver (there’s probably an air bubble blocking the way). Food keeps being piled on and the right vertical part of my colon expands, causing stress, waking me up. Since the enzyme that’s supposed to break down stress hormones is broken in me, the MAO A enzyme, my levels of noradrenaline (=norepinephrine) and dopamine are getting very high. Causing me to lie awake for 1,5 to 2 hours, frantically  writing speeches on Important Subjects. During this time my cortisol is depleted and my growth hormone doesn’t get the time of day (I’m robbed of a significant portion of REM sleep). This is a large tax on the body and leaves me with diminished capacity for getting out of bed the following day and healing properties, especially now that I’m over 25 and my endo-glands can no longer make up for such a plundering.

There we have it. A simple blockage leads to a build up in the right colon which makes my body cry out. Triggering the release of too many excitable neurotransmitters.

Again it’s the imbalance between Sympathetic Nervous System (SNS) and the Parasympathetic Nervous System (PNS), which both have so much to do with the perifere location: the gut.

My balance is skewed in favour of the SNS due to a homozygous mutation of the MAO A  gene and a life time of training to be in Fight or Flight. I can unlearn the latter. I can only influence and work around the former.

Gut motility is mostly governed by PNS. It’s the modus of Rest & Digest in opposition of SNS’s Fight or Flight. Looking at particular neurotransmitters I’ve now learned that as soon as dopamine rises the stomach is reluctant to release its content. This is why a dopamine-antagonist (Domperidone) is prescribed to people with nausea and vomiting (Dutch link). And this is why I have to go lie down about an hour after I have ingested food. The stomach takes 45 minutes to break down the first bites I took and is now ready to release it. I need to make room for PNS to do its thing and the only way I know how to at the moment is to lie down and relax. As soon as I do so my upper GI tract starts gurgling. If I don’t lie down I’ll grow weary and moody as the day progresses and I’ll be devilish in the evening and have hellish insomnia at night.

Motility in the small intestine is dependent upon having enough of the PSN neurotransmitter Acetylcholine and by activating lots of serotonine receptors. Having bad MAO A is a good thing here, serotonine is soaring and there should be one for every receptor. As soon as I lie down at night the small intestine starts happily motoring things along. In 4,5 hours it has emptied all it had into the next portion of the gut via the one way ileocecal valve into the colon. Luckily I have no problems there. For some this valve flutters and lets stuff and bacteria creep back into the small intestine.

We’ve all seen the picture of how the colon lies in the belly:

The colon rises up, all the way to the liver, then bends to the left, traversing in front of the stomach exit to the spleen area. There’s another bend downwards and then it ends in the temporary holding station called Sigmoid Colon.

Which is true for only about 5% of humanity. In most of us the colon is going wherever it wants. Diagonally to the spleen. Bending backwards. Bulging inwards into small intestine territory. So don’t take anything for granted, these idealistic pictures are just theory.
This colon is more likely:
 pic by Glitzy queen00, radiographer in the UK

I don’t know the route my colon lies. I can feel contents at certain places so I have some idea. But I suspect at the Traverse Colon things are iffy. Interfering with the stomach exit and the duodenum, where also the major PNS nerve is located, the Nerves Vagus.

At the right bend, the Hepatic Flexure, its location is probably irritating the liver. I often have a heavy feeling there, bordering on pain. And now I know that something is hindering process in the night. My GP suggested a mechanical issue: an air bubble is trapped in the Hepatic Flexure, preventing passage. He made the analogy with a bottle with air trapped in it: you can’t pour the liquid in a smooth motion.

I can work with mechanical problems. The solution is to lie on the right side. The air travels upwards, into the Traverse Colon. I’m using breathing as a motion device, the expanding and contracting lungs are the main mechanical force on organs, making them move and shift. It’s a natural thing. A good thing.

When I had an echo done of the liver I had to breathe out and hold my breath. The lungs forced the liver to peek out from under the ribcage and the technician could scan it.  It looked so beautiful! Things were moving and fluids were flowing and we saw all kinds of channels. It was such a marvel. Movement through breathing is very good for the internal organs.

After 5 to 20 minutes I turn on my back. I now lift my pelvis to the roof, resting on my feet and shoulderblades. This is a trick I learned when I went in for a pap smear and the cervix was not there. Somehow the uterus had shifted or folded back and hidden the cervix out of sight. I was asked to do these gymnastics so it may shift to another position. Mechanics. Everything shifts in there, nothing’s stationary. Organs are lying next to each other and are all able to shift and move.

There’s an excellent system in pace to allow for these movements. It both secures the internal organs to the scaffolding (the skeleton) and it lubricates the surfaces so there’s no chafing. It’s the Mesentry, a thin layer of epithelial cells surrounding all organ parts, like pieces of clingfoil taped to the back wall at various points:

 pic by blumdesign.com

The architectural structure of the mesentries is amazing, with small gutters transporting the fluid all around. Breathing and moving and muscular movements aid this system. Go check out non-profit educational site The Radiology Assistent for excellent images and explanations of many internal organs and structures.

I’m still on my bed, pelvic to the sky. I’m again using my breath to move things along. When breathing out I can manually manipulate the downwards colon on the left side a bit, trying to help it transport the air bubble to the exit. After just a few minutes I’ll feel the need to pass some gas. It’s only a little bit and I cannot believe that this is actually the bubble that was stuck at the Hepatic Flexure. But I have a result and I’m glad with it.

I now do this in the evening, before I go to bed. And during the day, when I take my hour rest. And at night, should I wake up. My insomnia is less severe because of this, there’s less dopamine produced. I still lie awake but now I’m a docile book, not a screeching video game. I have reduced the stress reaction. But I have not eliminated it yet.

 pic by amazon

I’m looking into a better motility of the colon. It’s not only air in the Hepatic Flexure, I’ve also noticed slow transit in the Traverse Colon. Then there’s considerable build up in the Sigmoid Colon to examine. And there’s a lack of neural signalling that I need to go, either #1 or #2.

Then there’s the food I eat that influences bulk, consistency, roughage and gas production. I already know to stay away from onions, beans and whole grains. Also carbohydrates make for a more severe insomnia, especially potato products. Which lead my GP and me to assume glycemic problems almost 15 years ago when I entertainingly mentioned how a potato dinner would keep me more wide awake at night than other dinners. Having been down the whole blood sugar route I can now say this is not an issue. But experiencing an insuline peak during the day does trigger the SNS for which I pay during the night. So sugar is still bad, but for a different -and far more serious- reason. Insulin is a potent poison, it should be engaged very prudently.

There, I’m done for today. There’s a lot to be sorted. Especially learning how/which neurotransmitters dampen the motility. Looking at you, dopamine. How to enhance the numbers for Acetylcholine? There’s a loop into the Methylation Cycle there that complicates things. There are probiotics that can help with signaling for defeacation. And how I can give PNS more time of day? I’m already grumbling that I have to lie down for an hour trice a day. But I gotta keep that pinball machine chilled if I ever want to sleep through the night and reap the benefits of both cortisol and growth hormone the following day.

A few more things to park here for future pick up:

1. Strengthening the gut muscles is a separate avenue to travel. One that works well for a lot of people, including a lot with Irritable Bowl Syndrome (IBS) (this is a link with the best instructional video for swinging a kettlebell). I’ve started kettlebelling which is a fun thing to do. I keep mine in the kitchen and kettle the bell a few times while I wait for the tea water to boil. Nothing on a schedule, no counting, . Keeping it fun. I already notice that there’s a certain pleasure in keeping your body upright using the core muscles, instead of stacking all your organs on top of each other and leaning on them. Sitting upstraight on a chair, like I was a woman from a 100 years ago, is pleasurable. Standing straight too. I’m stacking vertebrae instead of organs.

2. The stretching in the ascending colon activates trigger points causing sympoms. They are the reflex zones of the colon:

reflexzones dikke darm

The symptoms that occur at night in my insomniatic period are all noted in the reflex zones of the ascending colon: irritated and stuffed nose; oversensitive sense of hearing (fear triggering); strained eyes; soar throat and tonsils; extra pain in my right shoulder impingement. I have no issues with the other organs noted in this picture, apart from bladder and uterus which are at the sigmoid end.

These symptoms, especially of the allergy kind in tonsils, throat and nose, have thrown me off scent for the longest time. I kept thinking it was dry air or dust mites that kept me awake at night. But it’s the other way around: only if I wake at night dry air and dust mites become a problem. If I sleep through the night they don’t bother me.

3. pH in gastro tract.

4. osteopatic views on movement in and amongst internal structures. Link in Dutch.

5. the various types of motility in the intestines. one link and link to Flash card notes.

6. duodenic colic reflex makes you want to go #2 when the stomach fills up.

7. MAO A influencing when it’s already bust. Progesteron; B2; Ginko Biloba. Progesteron!

and to be perfectly clear: for years I’ve researched all the usual suspects for insomnia. Blood sugar; glycogen; sleep hygiene; circadian rhythm; melatonin; dual sleep; Chinese organ clock; you name it I’ve looked into it. It has done nothing. I could have guessed since I’ve had this sleeping pattern all my life, through every stage of health and constitution.

This now is the first approach that ticks all the boxes, explains everything and gives positive preliminary results when I tweak the dials that are involved.

For other people experiencing this type of insomnia I suggest assuming your body too is experiencing some stress reaction and figuring out what causes yours. I doubt it’s the same colonic issue I have but it might be. Especially if your MAO A gene is faulty you’ll recognize the alertness of your insomnia. This is separate from what causes the stress reaction. But if you are homozygous for MAO A then your dopamine is too high and interfering with stomach emptying and colon motility.

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

Managing Adrenal Insufficiency

So, now that my ME is under control by applying the things I learned from Reverse Therapy (RT) there remains the adrenal issue.

The ME is gone, I’m in recovery. The past three months I no longer had the Wired & Tired and general “I’m so dead why am I still breathing?” feelings that go with ME.
But I did have the consistent nausea, especially in the evenings, and I did have to pace myself severely. I even had an adrenal slip up on March the 5th. When I was in a new surroundings, was too cold, had been upright for 5 hours on end and was too stressed.
I started crying uncontrollably which is an alarm signal from my body that I need to make it safe asap or otherwise an adrenal crisis is in the works. It’s a scary route.

I cried. Took my pills. Took a long lie down in the car. Then drove home and went to bed. Took three days of rest.

Me resting in my car. I was wearing my hand felted princess dress and handknit socks. You should always be warm. And being wrapped in wool gives you a feeling of safety.

I’m not too good in the RT thing yet, I have to practice over and over again to relax, feel safe, and calm down the nervous system. But I’m well enough now to address the adrenal thing.

That’s why I had a battery of blood tests done, talked to my GP and had a consultancy with Adrenal expert Dusty Hardman from AddisonsSupport.com.

Dusty is not a doctor and will not make any decisions for you. But to the educated patient she’s a welcome sparring partner with lots of experience and knowledge. She herself has Addison’s and runs marathons -even wild ones, which lasts days and days- and researches Addisons’ medical info.

The blood tests were: hormones, electrolytes and more hormones.
My primary goal was, for both GP and Dusty, to find out whether I was wrecking things the way I’ve been supplying Hydrocortison until now. Secondary was to learn how to improve my protocol.

The risks of long term corticosteroid use involve loss of bone density; getting too high eye ball pressure and some other scary things. There’s also suppression of residue adrenal function, if you take too much.
When your adrenals cannot produce cortisol when you need it, say in an emergency like a trauma or dehydration, you run the risk of death. Quite quickly too.

As Pathology Personified illustrates it:

when vomiting twice, call the emergency services. Addisonian crisis is life threatening.

When vomiting twice, call the emergency services. Addisonian crisis is life threatening.

Addisonian Crisis: Medical emergency
14. Severe vomitting
15. Severe chest, abdominal pains
16. Back pain
17. Severe diarrhea
18. Syncope, fainting

Refs: 1-13 Merck Manual 18th Ed (2006); 1-4 Souhami & Moxham ‘Textbook of Medicine’ 4th ed (2002); 1,2,8,13 Goodman & Snyder ‘Differential Diagnosis for Physical Therapists’ 4th Ed (2007); 1-15, 12 Gray & Toghill ‘Symptoms & Signs of Clinical Medicine’ (2001); 1-3,7,14,15,18 Ballinger & Patchett ‘Saunders Pocket Essentials of Clinical Medicine’ 3rd Ed (2004)

But I haven’t had an Addisonian crisis yet. I’m still in the process of determining how my system is doing.

The electrolytes showed that calcium-magnesium was ok-ish but low on magnesium. Natrium-kalium was perfect. My kidneys are troopers!
I’m having a bone density scan done soon (DEXA) to tell me more about the bone density. In the mean time I have started to do weight bearing exercises. It’s the only thing left to do at my age.

Don’t go taking calcium enriched supplements!
You’ll only put your bone-cells into overdrive and exhaust them before you’re old. Have you never wondered why the country that drinks the most milk, the Netherlands, has the highest portion of osteoporosis? Calcium from dairy is bad for you. Lies:

This is all lies!
Don’t eat so much calcium. At least fill up on Magnesium if you do take some calcium. It’s such an easy and unlogical assumption to think that because your bone is brittle and it’s made from calcium you need to take more calcium.

My GP taught me about a complicating factor: that the bone cells needs vit D receptors and these decline with age. You should have maximum receptors at age 30 because after that they dwindle and cannot help your brittle ass enough.
I asked whether I was perhaps lowering my amount of vit D receptors with the large amount of vit D I take. Just like you lower the amount of Progesteron receptors when readily supplementing. He found it an intelligent question.

The eye-thing has been checked by an optometrist and the eyeball pressure will be checked in two weeks by an opthmologist.

The hormone ACTH is the hormone the brain releases to get the adrenals to produce cortisol. My value is 19 in a reference scale running from 0 to 50.
With my supplementation of 20 mg of Hydrocortison my brain is still asking my adrenals to put out more cortisol. Hence: my brain has not shut down my adrenals. And: my adrenals/supplementation do not provide my body with enough cortisol.

Not enough cortisol also explains my residu symptoms:
– nausea (not enough stomach acidity. Not enough HCL in the world to help with this)
– not able to make choices. See last posts. Who’d knew this was a symptom?!
– crying inappropriately
– dropping blood pressure
– losing words when tired. I especially lose my Dutch nouns and verbs. English ones pop up instead.
These are all adrenal symptoms.

My blood work showed I don’t supplement cortisol enough. There seems to be no damage with the supplementing I’ve done so far.

Talking to Dusty and reading everything on her site has given me a new look towards Addison’s. Doctors still know very little about it. And what they know they haven’t thought through very well it seems. They are so scared of suppressing adrenal function that they rather have people on too low a dose, causing them to have a poor quality of life.
Whenever someone needs an acute higher dose they linger to give it to them, wrecking their body unneccessarily.

I have educated myself and have started a trial of higher cortisol replacement. I’ve upped my dose, with blessing from my GP. And boy, do I feel alive!

pic by St.Mattox

Suddenly the quality of my life has shot up. I’m nowhere where a healthy person is, who runs after the children or doesn’t think twice about getting some groceries before cooking dinner.
But I can take a shower when I feel like it. Not make it the one thing I do on a day.
I’ve just been outside, puttering about in the garden. It’s a gorgeous Spring day out there! I came inside and sat down to write this post, I didn’t have to lie down first.

I’m now on 25 mg HC per day. And I’m going to up it to 30 mc because over the past few days I needed to stress dose each and every day because one day we were taking a drive of 1.5 hours. The next day the optometrist was about to put painful drops in my eyes which would annoy my body for three days. The day after I had stomach pains. And today I worked in the garden.

These are all activities/events that require a little bit of cortisol extra.

Yesterday I was hormonal. I was cranky, weepy and aggressive. Looking at the calendar I saw it was ovulation day. I never have these symptoms on this day. At best I can muster up a little bit of arousal but overal I’m a very tame woman.

With the upped HC I am pouring extra hormones into the adrenal hormone cascade. Less of my Progesteron is needed to make cortisol and it’s probable that it flows into Estrogen and Testosteron production. (Test. was low in the blood test btw)

I took extra Progesteron to counter it. Problem solved.

This HRT is all a delicate dance. Luckily I supplement physiological doses so anything I overdo or underdo leaves the system within a day. And I’ve danced with my Progesteron and Estrogen for a few years now, all the HRT things I learned from that I get to apply to cortisol replacement.

Lots of things happening, in just these 5 days since my trial started. For example I also noticed that my thyroid is picking up. I had it tested too and it is within range but not optimal. Which explain the residu thyroid symptoms I had:
– poor digestion
– poor intestines motility
– hair loss

With only a few days of extra cortisol my thyroid is feeling more comfortable: no hair loss and a more warm body. No more cold from the bones!
I do need to take my Iodium/Kelp supplement every day though.

Kelp by Donna Adenine

Adrenals and Thyroids are the battery and the gas pedal of the body. I’m revving and going through my minerals and co-factors faster.
I now take diligently daily: Zinc, Magnesium, Selenium, Kelp, vit D and Q10. If I forget any of these the system bucks.

I also take Lithium (the mineral, not the drug) and Progesteron (and Zinc to keep an even brain chemistry.

The action plan I wrote out with Dusty:
1. take two weeks to figure out correct HC dosage.
2. in two weeks test to see if Florinef is needed. This helps blood pressure. The test to take is: Renin, at 8 in the morning, sober without breakfast and without having gobbled salt the previous day.
3. in two months test Thyroid values. They should be better than they are now. If not supplement.
4. around that time: test sex hormones. They should be ideal. If not I should supplement. We’re talking DHEAs, Estrogen, Progesteron and Testosteron. Testosteron for females should be a 0.2% solution.
5. in 6 months time retest the whole shebang as these are the values I need to monitor my supplementing and my well being. DHEAs, Renin, electrolytes, FREE T3, FREE T4, Total and Free Testosterone, Progesterone. All of these things need to be supplemented if deficient.
6. Repeat this monitoring battery of tests every 6 months.

Also. Now that I’m probably on full replacement of the adrenal cortisol, I’m now in danger of my life should anything happen to me. Addisonian crisis.
Because of this I will ask my GP for an emergency injection kit for 100 ml of Solu-Cortef. It’s a cortisol you inject into a muscle in case of adrenal crisis. It’s pretty much like an epi-pen and it will save my life in the same fashion an epi-pen saves someone with sever allergies..

I’ve also ordered two wristband tags that state my needs. I hope, should I ever end up unconscious or wounded, a smart bystander will find me, read the tag and do what’s needed.
In my case: reach into my bra and feed me the pills you find there. Then call the emergency services.
Or give me the shot.

OMG feeling alive again is serious business.

by Mark Aplet

two more things to tell you:

  1. the court case about the manure plant was lost. Don’t know how that happened, I had such solid and scientific arguments. I guess we lost to political agenda and biases. I will now learn to live with a manure plant next to my cabin. But I did manage to write three engineer rapports last year, when I was still ill from ME and adrenal issues. That’s something to be proud of.
  2. I still wake up after 5 hours of sleep. I can’t find a consistent factor. But the stress system is involved, that I know. I’m now looking into problems with the intestines, specifically the Ileocecal valve, which lies between the small and large intestine. This bit hurts, at night. And I have circled towards a dietary habit that is THE diet for problems with the valve. Two coincidences that prompt me to look into this ileocecal valve.

How come I end up talking poo to you again? Twice!

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.

Enjoying Art (again): Ido Vunderink

Yesterday I visited the historical city centre of Woerden. The museum there shows an exposition by local artist Ido Vunderink. He’s an 80 year old who nowadays paints abstract Dutch landscapes and flower arrangements in bright colours:


vunderink

I was thrilled to discover his work, earlier that morning, while I was still in bed waiting for the cortisol to kick in and start the day. His art reminds me of my own work, when I was so very much inspired by Norwegian mountains and their running waters, and made art there, ten years ago:

Abstract shapes reminding you of something in the real world.
One dark colour, one light and two in between.
Bright, happy colours to lift the spirits in the dark days of Winter.
Intersecting lines, defining planes.
Planes connecting behind other planes.
Lines running beyond their boundaries. Reappearing.

Vunderink is exploring the same things I did! Playing with the same toys!
(Not saying we’re at the same level, I was just starting, he is a master.)

I never got to transport my muse to Holland nor did I manage to reconnect with my teachers at the Jeroen Bosch Academy and talk about any of this. I subsequently dropped out of art school and dropped out of health. I haven’t been able to make art since.

Ido Vunderink, Dutch artist
“Evening Light” by Ido Vunderink.
Is that a city scape whose rhythm extends into the sky above? Or are these tulip fields in the Netherlands? With the beach and the sea at the back. It’s whatever you like.

Viewing the works of a kindred artist, who finds inspiration here in Holland, today, fills me with tremendous joy. So, it IS possible to find things here that lead to the same playing field of art. This overcrowded, over-gardened piece of land DOES offer shapes to talk about large spaces and slow time and natural compositions.

The exposition was thrilling. I spend two hours there, sketching the works, examining them close-up, watching from afar, drinking in the colours and following Vunderink’s conversation about composition, colour, contrast. I felt like a fellow-artist and was very happy about it.
Untitled

For all the bursting colours and abstractions, this was nonetheless my favourite:

Ido Vunderink, Dutch artist
“Kruiken”. 2014. Ido Vunderink

The same subjects are still here: lines, shapes, planes, colours. But they all play closer to the chest. The abstraction doesn’t leave you guessing what’s portrayed although the painting is quite high so it’s more about vertical lines than it is about tall jugs.
The colours are similar to each other, you have to stand still and look at it for a bit to appreciate their differences and their interaction.

This painting is magical!
The undersketch is coming through, in purples and olives and intense yellow, while the planes themselves were made so thoroughly opaque and in these fantastic colours! The light and dark contrast is subtle but meaning full. The jug in the middle is the main player but it’s mates are brighter, except for the one at the most right.

Vunderink has signed his name in the wet paint, a lovely way to do that doesn’t interfere with the colours.

Yes. This is the painting I would love to own and look at for the years of my life left. In turn it lifts me up, makes me laugh, makes me contemplate, makes me silent, makes me curious, makes me investigate, makes me want to paint and it makes me … “carefree” is the word I guess.

I’m trying very hard to stay in that moment. To not think about making art myself, picking up where I left off. Not making ANY PLANS. Not thinking about either the future or the past. Not spinning any stories to put my life into some kind of perspective.
Reverse Therapy has me working hard in shutting up my chatterbox of a mind, that sock puppet with its running commentary:

Shut up muppet. We’re here to enjoy the moment. Living in/through the body.

The exposition is held in a very old building that’s very sympathetic with little windows and shutters and wooden winding stairs and hand cut details and little bricks. This added to my joy:
Screen Shot 2015-12-23 at 18.39.48

Vunderink’s exposition here runs until the 10th of January.

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.

 

To sum it up: my ME, my 80% recovery, my relapse and recovery plan.

Hello, I was trained as an engineer and I’ve approached this black box of a disease as such: entertain working theories but only act upon results.

I was bed bound and brainfogged in 2008 and 2009. In the beginning it was very severe ME. I didn’t know my own name. I had to be spoonfed in the morning before I could even lift my head. I think I was at 10 % health of a normal person. Maybe 5%.

I took my recovery in my own hands when the doctor said: “There’s so much wrong with you, I don’t know where to start!”
My reaction: “Then it probably doesn’t matter where we start. I’ll start with digestion then.
Digestion was the only thing that gave us something to go at: my stools where grayish white and floating. I was malnourished. Something wasn’t working: bile. And with that the uptake of nutrients in the duodenum.

Because I had special bouts of insomnia at night (hyper-alert from 3 to 4.30 at night) I could read basic biology books and later on more specialized books and write to-do-notes to myself for the morning.
Thanks to these studies and some trials I devised for myself I managed to identify problem areas and what I should do about them. I worked my way through digestion; hormones; adrenals; nervous system; sleep and mental health. I tackled about one subject per year.

Whenever I started investigating a new subject I didn’t know what I was doing or where it would take me. But each and every year I made remarkable discoveries and, by applying them, progress.
Overall I slowly recovered to a housebound level, without brainfog or pain, just tiredness and no robustness for stress (bodily or mind). And I was being happy. For the first time I lived in the moment and I was happy with the moment, without planning the next one.

Then in May 2014 I healed miraculously overnight and got to 80% health at x-mas 2014.

My working theory:

  1. everybody has their own personal bodily signature that facilitates the onset of their version of ME.
  2. in every PWME the Autonomic Nervous System is perpetually scrambled.

My solutions:

  1. identify personal factors and address them. All of them. (Basically you have to change your life in every aspect.) (In my case: Progesteron deficiency + insuline hyper sensitive + always in Fight or Flight + never slept through the night + MAO A kaput + hyperalert personality + hear and smell everything + a virus/bacterie in Spring 2008 + shot adrenals by mid 30s + food issues + insulin issues)
  2. take away all (personal) stressors that bug the ANS + teach it to react different to impulses.

That last one is not so easy but the ANS and the brain are plastic and fluid, you can teach it new ways.
For me, I used Gupta Amygdala retraining; EMDR and am looking into dr. Goldstein methodes of influencing brain paths chemically. You could also try meditation or mindfullness. I also did some CBT and even hypnosis and am trying my hand now at Reverse/Mickel Therapy. All to try and learn new thought habits in order to influence neuro transmitters.
The goal is to influence the physiology of things, not the psychology of things. Psychology has nothing to do with the cause of the illness. ME is not a mind-thing, it’s a body-thing.

From the start I knew I had additional adrenal problems, on top of the viral onset Chronic Fatigue. That’s why I read a lot about the bodily stress responses, especially dr. Selye who coined the term “stress” (when he actually meant “stressor”).

The body has some powerful systems to deploy when survival is at stake. The Stress Response is one. The insuline response is another. These are The Big Guns the body has and they should be avoided because they alter the normal modus of the body and have a lot of collateral damage. These are two systems that you cannot fool around with or be careless about. This is survival stuff. When the body gets bloody serious about something. Don’t taunt it.
That’s why I eat for chronic neutral blood sugar levels.

For the bodily Stress Response I’m avoiding all the things that my body perceives as stressors. They can be as ridiculous as garlic, in-laws or warm showers. I’m not arguing with my body, if it’s bugged by it I avoid it. I use my high-sensitivity to check whether something is ok or not. This gets me results.

I’m addressing all the non-ME things that burden my body such as hormone shortages, a diet that provides level blood sugars and methylation-problems. These are not the cause of ME but I cannot heal if I don’t fix these. For these things I had tests done and am under doctor’s supervision.

That leaves the mysterious last piece of the puzzle: the ME-thing. The chronic thing that keeps causing problems.
Is it an intracellular parasite gnawing at my nerves or at my mitochondria? Is it some sort of unhealthy ANS-modus that my body has gone into and needs to snap out of? Is it a permanent eroding of the intracell signalling devices?
I don’t know. It’s the piece that prevents me from going from 80% to 100% health.
(My instinct says there’s an invader continually bugging my body. But my body can co-exist with it, if there are no additional stressors in my life.)

On May 1st 2014 I started Gupta Amygdala and taking 100mg oral micronized Progesteron every day, regardless of cycle. (I keep repeating: Progesteron is not a sex hormone. It’s an adrenal hormone and it’s a neurotransmitter.)

On May 2nd I started healing.

Understanding Gupta and practising it clicked everything into gear that day. On top of all the things I was doing right to address the other issues (food, posture, hormones etc.) I had found the thing to influence ANS. It relaxed at once and health was restored.

Healing is a slow process. I had to keep taking my rests. I had to pace myself very much. No weird foods. No sudden activities, even though I burst from energy.
Over the coming months I slowly build up my activity level and my stamina. Until I was at 80% health and could do anything I wanted and meet friends and take drives. I was thinking about work again, a career. (still not eating weird stuff etc., those things are changed for life)

Then in Spring 2015 my precious 80% health took a nosedive when two normal stress life events happened. Just normal things. It could have been anything (an accident, a robbery, falling pregnant, going through a divorce, getting married, death of a parent-in-law, moving house, graduating, etc. etc.) In my case the cat nearly died (10 days of extreme stress for us and months of fear and worries afterwards) and I had to write an engineer’s rapport for court to prevent a big manure plant happening right next to the cabin that is my place of peace out in the country. (as an engineer I’m not against plants or manure but the plant is not designed securely and the predicted odour emissions were not measured right). Writing was stressful as is participating in the judicial process that puts more weight on procedural integrity than common sense. Parties are not there to solve a problem together, which is an engineer’s point of view.

We’re now 8 months later and both issues are resolved (cat is healthy again; the rapport is at the highest court of the country and there’s nothing I can do anymore) and I’m severely housebound again. I’m at 40-45% health I think. I can leave the house once a week for groceries or I can meet someone (receive visitors or visit them) once every two weeks. I’m very wired and I react to all the small things.

But I didn’t fall back to bed bound nor the 10% health level where I was in 2008/2009. Nor do I have brain fog. I did have that awful experience with PMS-from-hell (PMDD) but that seems to have gone now too with Zinc-supplements.

Now I’m trying to get back into that relaxed mode I was in last year. Out of Fight or Flight.
Back to being friends with my body, back to embracing and carrying that small inner child that’s so afraid and feels so unsafe.
It’s frustrating that just thinking it doesn’t make it so. Getting out of wired-ness takes some time and practise. It’s not an intellectual mind-thing. You can’t plan it, you can only invite it.

But I’m sure I’ll get there again, into that pool of peace and ease. I’ve nearly never stopped doing all the things I need to do (all the personal signature things from point 1) so my baseline is still pretty robust.
I’m therefore confident that I will regain some health, now that the life events are dealt with.

Besides this future goal I’ve now experienced what happens when my system gets put under these kinds of life stresses again. It’s scary but I didn’t die and I don’t need to worry (much) about the future stress events that will surely happen in my lifetime.

What happens in my body and is not to be worried about is:
– my liver stops producing bile (this means a major waste removal pathway is blocked and nutrients aren’t being absorbed);
– my body usurps all kinds of minerals fast and from the lack of it I get depressed and even suicidal (PMS-from-hell and dopamine shortage caused because Zink was gone);
– I cannot focus (both eyes and attention);
– I cannot relax (both body and mind) (and therefor not digest my food properly).

This is all natural and won’t kill me. They do need to be addressed though because I cannot afford to undergo these things for long. That’s why attached to this post is a little reminder-note for myself. The things I need to do the next time life comes a’knocking.

I’m really confident about getting into that relaxed ANS modus again. Confident that I’ll get there and confident that it will heal me again.
On the ME forum Phoenix Rising I’ve been reading posts by James7a who recovered 100% and I’ve also been watching video’s by Neuffer who also recovered 100%.
They both practise according to my ANS working theory and they came up with their own version of it which makes their cases and experiences logical. I love logical. When things make sense.
I’ve also started reading on another ME forum called Health Rising which is more hopeful than Phoenix Rising and, amongst other things, collects recovery stories. There’s a lot of focus on the ANS there. And how to influence it even if this means deploying psychology-tools. But: psychology has nothing to do with the cause of the illness. ME is not a mind-thing, it’s a body-thing.

So I am going full throttle at it again too. Broad spectrum (addressing all the aspects of my life that need attention) and with special attention to getting the nervous system to calm the frick down.
Full throttle at a very slow pace.

Check out the short video’s James7a made on YouTube, telling about his illness and what he did to recover 100%. He’s a great, young British man who did it. He did it!
His video’s are short, 13 minutes and very natural (not rehearsed). And he makes his point very good.

———————————————————————-
just a little note to myself:
Next time a life stress event occurs such as moving house or death of a parent I will do the following regardless of where I am health wise:
– clear my calendar for the next six months;
– take all the minerals, take all the amino acids, take all the vitamins;
– drink salty water by the gallon;
– get massages or yawn and stretch like pets do and as often as pets do to help the lymph system to remove waste;
– eat gelatine by the bucket (cook chicken drumsticks in cocosfat and water, let cool). Gelatine is easily digestible, contains lots of amino acids and travels first through the lymph system instead of the liver;
– make chickensoup but also eat other things. Rotate.
– watch Bananaboy’s short videos again where he explains how he healed
– wear ear mufflers and rest rest rest a lot;
– remind myself I am safe. Here and now. I am.