a “normal” colon: IBS, Hepatic Flexure Syndrome, Slow Transit

This is a normal colon:
CT colon hepatic flexure syndrome

No polyps, no thickness in the walls, reasonable unfolding of all the folds, no restrictions or obstructions, no cancers. Altough its path doesn’t look exactly like the text book examples this is a normal colon.

The doctor will say: “This is normal, there’s nothing wrong with you.”

What he actually means is: “This is within parameters, there’s nothing Very Wrong with you. However we must remind ourselves that this picture does not show its functionality in your normal life, when your colon is filled with food instead of air. But hey, no obvious problems!”

I’m glad that Very Wrong Things are ruled out.

I now look more closely at the picture and I think I can see why the owner of this colon wakes up in a sweat every night. At first I thought the problem was solely at the hepatic flexure. Indeed there is a steep bend, where the colon nearly folds into itself, that’s difficult to manouvre for colon content when the person is lying down.

But now that I’ve experimented for a few weeks I can with 80% certainty say that the problem lies at the beginning of the colon, right where it sprouts from the small intestines.

It’s a bit difficult to see but on the smaller scan on the right you see the person lying on her left side and when zooming in you can see how many bends there are in colon section right after the appendix:

CT-foto-colon-inverse

I inversed the image for more clarity.

From centre bottom going up diagonally to the right is the ascending colon: the folds stack up onto each other. Imagine food stuff traversing these bends. It will need the torso to be upright and move in various directions to create room to navigate this freely.

Theory:

this part somehow collapses when lying down. In the first stage of the night food gets processed by the small intestines (average time 4,5 hours) and gets pushed into this part of the colon. Where it gets stuck. The colon swells.

The large motility movement (BMM) comes by every 1,5 hours or so and cannot shift this food. 4,5 hours after the person lied down this accumulates into a stress reaction, waking her up in a sweat. Lower left abdomen tender and swollen.

Experiment:

avoid food to be there in the night. The person has been eating at different times the past few weeks and has been eating different foods too. Avoiding bulk, fibre and gaseous foods (because this is also the part of the colon where bacteria produce gas and gasbubbles easily block a colonic bend or fold). So that’s a low-residue diet plus FODMAP.

The timing has been important too: eat main meals before 2 in the afternoon. Or: “have dinner at noon.”

Drink a lot after 2 o’clock until bed time. Tea, broth. There has been snacking on low fibre things such as chocolates. A walk every evening is important because being upright and moving about ensures the foods in the ascending colon to move upwards.

Results:

have been satisfactory. Sleep has been longer than the typical 4,5 hours on more nights than ever before! Wake up is now typically after 6 hours (4,5 hours + one more BMM cycle) and most days in a sweat with a filled ascending colon but not too dramatic. It has been bliss! So much more gets done in a day on a 6 hour sleep than a 4,5 hours sleep. The person has Adrenal Insufficiency and can even lower her Hydrocortisone on those days.

Future:

get as many 6 hour nights as possible. Hoping to work towards 7,5 hour night but as of yet no idea how to accomplish that. More movement during the day is one route. Tips welcome.

Some Details:

On days that have dinner-at-noon there is tiredness after dinner. It’s the typical tiredness associated with digestion. After one hour there needs to be lie down for one hour for food to be processed by the duodenum. Resting is important to deal with CFS/ME anyway. Needs rest twice a day.

Protein is needed by 11 o’clock in the morning, especially Choline, which fuels the Parasympathetic Nervous System. Otherwise the person will feel weepy and wired at noon. I’ve got Choline pills and body builders protein powders as a back up.

When B12 vitamin is taken (in mB12 form)  Fosfatidylserine is needed a couple of hours later or pee will smell of ammonia, indicating proteins not being absorbed and used for repairs.

Testosteron is taken twice a week, together with some body builders proteins (l-glucosamine and casein), especially on the morning of a work out (fit20). Feeling very good about it. Strong. Together. Without any of these her muscles will not build. With them the muscles are actively in use when standing or sitting, she’s not merely “hanging off my skeleton” or using fat rolls to lean on. It’s quite a novel feeling and it feels appropriate.

The fibre equivalent of one small clementine is already too much fibre in a day and will cause insomnia. Nuts are being consumed though and but they have to be chew chew chewed.

The colon expert at the hospital said fibre is only needed for colon functionality. If the colon functions (i.e. you have satisfactory bowel movements) than fibre is not needed. Because the problem here is in the ascending colon food has not been dried out yet and hard pellet stools are not an issue. The low fibre diet does not cause very loose stools either. There’s a bowel movement once or twice a day.

I’m amazed at how sensitive the variables are. One clementine, come on!

There is one other thing as important for the sleep as food intake: dust. The bed needs to be changed at least once every fortnight and needs to be vacuumed every third night and sleeping clothes (including hats and scarves) need to be shaken vigorously out of the window every other day.

The last one stumps me. It needs to be both: food and dust. One of the two does not prevent the waking up.

One more detail: the CT colon shows a little bit of food matter left in the steep bend at the Hepatic Flexure. Indicating, because the patient had a very good colon cleaning before the pictures were taking, that this is indeed a second trouble spot in the colon. Food does get stuck here, especially when there’s air trapped. Avoidance of gaseous foods helps with this particular colonic problem. I’ve researched FODMAP and have understood the reasoning behind it (“what do bacteria eat?”). This allowed me to assess potential food items instead of trying to follow the list of this or that person/website.

  • As a rule: stay away from dietitians, they mean well but they do not know enough
  • as a rule: run from from amateurs/celebrities/people who’ve done a course/wrote a book about their experience. They’re in it for the money and their kick for saving humanity.
  • view your doctor’s opinions with some reservations. He’s knowledgable but he’s wearing horse blinders and has blind spots and assumptions (about you, your gender, your age and what “normal” bodily function is).
  • educate yourself. Sherlock the heck out of your thing.

Sherlock Holmes pic by Kevin on Flickr

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Hepatic Flexure causes lifelong insomnia

I cannot believe that I did not figure this out earlier. It’s so logical, looking back.

Each night I wake up at 3AM. Wide awake. I lie awake for about 1 hour – 1,5 hr. Then I sleep a little but do not wake up rested.
Lying down = right upper bend in the colon gets squished. Matter cannot pass and builds up in the ascending colon. After 4,5 hours my body jolts itself awake from the stress.

4,5 hours being the bare minimum of sleep it needs to get by. Or the amount of time the small intestines need to process everything they’ve got and dump it into the colon.

I’ve had this insomnia as long as I can remember. Even as a child. My parents thought I was afraid of the dark or the house burning down. Every night I woke up. Always have.

Now that I’ve been addressing constipation and slow colonic transit the past couple of weeks I’ve had some succes  in sleeping through the night. Glorious feeling! Getting 6 hours instead of 4,5.

It makes sense now that I think about it: as I lie down the hepatic flexure gets squished (by the liver?) and matter cannot pass into the traverse colon. Stuff builds up in the ascending colon, especially in the 4,5 hours of sleep, and then I jolt awake because of the stress reaction. Lying awake for a good hour tossing and turning (making matter pass the hepatic flexure?). Perhaps I miss the train of the BMM (Body Mass Movement) that occurs every so often and one is every 1,5 hours?

I’m now looking into solutions for keeping that flexure open when I lie to rest. Can’t find a similar problem on the internet but I’m looking for clues at people who have a prolapsed traverse colon (colonic ptosis).

It is very common to have your colon twist and fold, both at the traverse colon (red) and the sigmoid colon (blue):

fig3-yee-ian-yik-2012

and these people (children too) all have slow colonic transit.

God knows how mine is twisted at the red part. All I know is when I lie down the traverse colon is no longer accessible. The life long insomnia as a result of this has caused adrenal problems and “ME”. I’ve fixed the latter and when I start sleeping though the night my adrenals will probably need less Hydrocortison as a crutch.

So what can I do? What do people with prolapsed traverse colon or enteroptosis get advised?

  • Surgery is out, not enough succes rate .
  • Defining stomach muscles is advised. (fit20 is an excellent regime for that. As is kettlebelling)
  • As is stomach massage.
  • As is hanging upside down (during sports) to let gravity help.

So what will I do?

  1. I will do more muscle exercising. I already do normal crunches on machines, both at fit20 and the gym. I will incorporate diagonal movements such as standing on a training ball and moving a barbell from left to right. Kayaking movements would be excellent too.
  2. I will do extra sets right before bed. Get as much matter out of the ascending colon as possible. Also massage these parts before going to sleep.
  3. continue mindfulness and supplements to enhance colonic motility (it’s still an issue)
  4. adopt a different sleep posture? It is related to me lying flat. Sleeping on my right or left or stomach does not seem to change much. Perhaps lie with head lower than buttocks? Head higher? Learn to sleep standing up, strapped to the bed?
  5. asking my doctor for advice about what I put into my mouth. Ascending colon specializes in taking out the moisture, perhaps if I can keep matter fluid it passes the hepatic bend easier? Is this where laxatives target? I have not used laxatives ever and I know they are not a lasting solution, if anything they can make matters worse. Usually fiber is advised to make matter moist but fiber works against my colonic inertia and gives too much bulk in the ascending colon at night.
  6. ask my doctor about enemas. Would that be good, cleaning the tubes once a month? My previous GP was against it because my system is so sensitive. He was often right.
  7. ask my doctor about anything else she can think of. Perhaps she thinks it fruitful to talk this over with a GI specialist? I dread going to yet another professional who deals with so many “special snowflakes” and patients who have dr.Google at their fingertips and somehow showing them that I indeed have a weird thing.

We’ll see. I’m meeting my new GP on Thursday. See if that goes better than when I met her replacement. I am preparing a medical dossier for her so she can see my casus in one glance. Everything on just one piece of paper.

PS in addition I still have classic “hepatic flexure” as described by my old GP. A bit of air forms in the colon and cannot pass the flexure. It clogs it up, preventing other mass to pass. I can solve this by lying on my right and letting gravity do its thing: the air squeezes past and rises upwards, into the traverse colon. I then turn on my back. Perhaps do my gymnastics.

I have to do this on top of whatever I have to do to empty the ascending colon.

 

Fixed the slow colon/ constipation.

So I fixed my slow transit colon and I now regularly use the toilet and deposit healthy, softish, stools in the round porcelain vault.

My clue was this: a scientific case where Crohn’s disease was healed by restoring the balance between gut neurotransmitters Dopamine and Serotonine.

In Crohn, it was assumed and proven in this case, there’s too much serotonin and not enough dopamine. Serotonine speeds up gut motility. By comparison I assume dopamine slows it down and this echoos my experience as a high dopamine person.

This is the scientific study: Amino acid-responsive Crohn’s disease: a case study. A patient of 22 years was healed just by taking in precursors to both dopamine and serotonin in a good ratio.

I mentioned this to my GP and he said that a regular side effect of Anti-depressants is loose stools. AD enhance the levels of serotonine. Serotonine is produced and used in the gut, for about 90-99,9 % of the bodily production.

So I set out to up my levels of gut-serotonin. For this I now take 5-HTP, a plant and precursor of serotonin. Currently I’m taking about 100 mg twice a day. I also stopped eating any and all fibres since I think my case of constipation is definitely not helped by adding fibre to hold the water. I’m better helped with relieving the digestive system of as many burdens as possible. No fibres, no vegetables, no raw foods, no nuts, no tomato skins et cetera.

I also apply the tummy massages I outlined in my previous post, both for the colon and for the Hepatic Flexure. And do the kettlebelling now and again.

I squeeze out lemons and drink the juice. (Acid stomach = better bile? Lemon juice relaxes the gut muscles? The increased salivation is important?  I know there’s a link between adequate saliva production and adequate adrenal function/stress resilience… I don’t know, it just feels good. I can’t say yet what is important in the palette of solutions I’m trying right now. Fresh lemons do seem important. Store bought lemon juice didn’t do the same for me.) I also take 1000 mg vit C. Sometimes twice.

Lastly I only eat proteins twice a day. I don’t eat any more after half past three in the afternoon. I believe the gut -or my gut at least- fares better with rests and pauzes. Not the constant bombardment of food morsels that the five-meals-a-day-brigade advises.

Those five meals a day are meant to keep your blood sugar level. I know other ways of doing that (see dr. Bernstein: eat nothing that triggers insuline nor any volume bigger than your stomach/fist. Or do a ketonic diet (but at the moment I’m enjoying my slices of white bread with lots of butter and just a hint of ginger jam too much)).

My gut has relaxed.

Suddenly my guts all fit into my pelvic bones. Everything is neatly folded up there. No bloating. I stand taller. Find it easier to sit up straight.

I have more energy.

I’m not sleeping through the night yet. But bodily stress has lessened. I have been sleeping 5 or 6 hours instead of 4,5. When I wake my guts want to move. I think they do not move while I’m asleep, it seems like they are waiting for me to wake. Or they are waking me. I need to do the laying on my right side to assist the Hepatic Flexure. It works. I can hear stuff moving and gurgling. I pass a bit of gas.

I have more energy.

However. The upped serotonine makes MAO A and MAO B work harder. This siphons away Dopamine. I have noticed that my ability to concentrate diminishes on days of high 5-HTP supplementation.

So I’ve taken a new supplement to up my dopamine while I do this experiment with serotonin. This supplement is called Methylphenidate, better knows as Ritalin. Ritalin causes the brain to produce more dopamine. I take 2,5 mg twice per day. Dosage for ADHD is usually 40 mg per day.

I had a big booboo with the doctor about wanting to try ritalin in this context. It’s a new GP, my trusted GP has stopped his practice to focus on orthomolecular science, specializing in the Methylation Cycle (!!!).

The new one didn’t understand one jota of what I was saying. Didn’t try either. All he saw was “a depressed housewife, looking for some happy pills”.  He thought I was on way too many supplements (didn’t bother to notice how low and tailored my dosages are). He suggested I exercise to battle depression. I’m not depressed. I already exercise. Fuck off.

I tried to steer the conversation into engineering territory, explaining how I approached this black box of a disease. How I had figured things out. How I had devised trials, to get more data. I mentioned Methylation Cycle and how messed up mine is due to faulty vitD and vit B12 receptors (I oversimplified things to get a common point of reference).

I asked him if he was familiar with the Methylation Cycle in the mitochondria, as part of the Citric Acid Cycle

All he heard was “Methylalalallablabla” and he proceeded on a rant about how way too many people take Methylphenidate and no one in Spain is taking it and here in the Netherlands everybody and their mum is shovelling pills, all because we want to keep up with Instagram and Facebook and things.

Yeah. It does have the same word in it, “methyl”. But I don’t think it means what you think it means.

So we parted. He did give me a prescription for Ritalin. He was reinforced in his idea that women my age are just sorry people looking for a quick fix. He never got to see beyond his blinders and see that in fact there was a smart engineer sitting opposite him, one with an interesting experience and an open approach to both life and health. Someone who he could have an interesting conversation with about healing and medicine.

Perhaps I’m a depressed housewife too, just like he assumes, I can’t say because I’m living my life from the inside out and have blinders of my own, but I know for a fact I’m also that smart engineer and he never knew.

The ritalin works. But it’s a crude dosage. I easily get hyper. It’s a nice feeling, for sure. I feel alive and productive and I want to dance and run. I do dance and run and try to change gears afterwards and rest (do that stomach massage while I’m resting).

I even started fitness. Powerlifting! Starting very slowly. I’ve been doing Fit20 since March and my core muscles have been build up precisely and with attention. Now I’ve joined a generic gym and do some cardio as warm up and cool down. In between I work on 7 or 8 machines, working on muscles and strength. It’s lovely! Endorphines ahoy! Lyn White from Reverse Therapy would cheer, I’m sure.

In a few weeks I’ll go work with the loose weights, barbells and such. Squat, Push up, Pull up, that sort of thing. It’s something I’ve always planned: weight lifting once I hit 40.

I couldn’t when I hit 40, I was too ill and weak. Now I’m 45 and I’ve started. Thanks to adequate cortisol replacement and now relaxed gut yielding more energy.

Still, I’ll be fine tuning the ritalin-dosage. 2,5 mg is too much in one go, I get too hyper. It’s the same kind of hyper I feel when I eat something fried in vegetable oil. It’s some sort of feverish greed. It feels as hippetyhop as having a little caffeine but with caffein I just get very chatty and fast-brained. With ritalin/vegetable oil I also get a feverish glance in my eye (and brain).

Estrogen-hype is different yet again. There it’s more Popeye-bam!bam! Rosie the Riveter. And lots of energy. I suppose its testosteron related. Of which I scored very low at the last blood tests by the way. I now have a DHEA supplement which converts into estrogen and testosteron, courtesy of your own body to chose how much of which. I do need more testosteron because I need to build up muscle. It’s a weird sensation to work my muscles in the gym but not have the building blocks to actually build them. Strange indeed.

For all HRT it’s: go low, go slow. So I’m just taking a little dab of DHEA every few days. In a few weeks there’s a whole battery of blood tests again. Before that I am to meet my new GP, a woman. I’ve prepared an introduction to my case. I won’t be hood winked by a biased GP again. I hope.

In the mean time: colon is happy! I am happy.

There’s more amplitude between activity and rest. The ritalin is a bit too high at the moment, I’m adjusting dosage. But it’s not so high that I get dopamine-excess symptoms such as head ache from tyramine rich foods (such as cheese). Although they do tend to come on sooner though but that can also be because I’ve been off tyramine for months if not years now. The system may have grown very sensitive (aka it’s not something I’m very worried about). The other day I had just a few organic corn chips for their salt content (It’s a heat wave over here! I’m very vulnerable to heat wave I found out.) The corn chips were made with olive oil (which are not the vegetable fried oils I meant earlier, those are from commercial shops and fast foods) and I got a splitting head ache afterwards. Olive oil contains tyramine. Same with Mascarpone cheese.

If I get the highs and the rests a bit more under control I’m hoping the sleep will follow too. I now -again- have come back to the notion that sleep is made during the day, just like I learned in the sleep study and the psychologist that helped me as part of that. Relaxing, mindfulness, during the day pays off at night.

I experiment with foods but most make me tired. I long very much for salad and sprouts and I eat them in small quantity. But mostly I eat a slice of white bread with lots of full fat butter (Demeter quality) and a hint of jam. Or a thick slice of white bread (artisanal bread, without sugar. Just flour, water, salt and yeast.) with four or five egg yokes on it, warmed in coconut fat. (I won’t say fried because I like to keep the yoke runny.)

I have a piece of chocolate, 75% or more cacao. But only one or two small bits in a day because I’ve noticed it kicks my adrenals and I will lie awake when chocolate was consumed.

For dinner (at 3.30 AM) I have drumsticks or a piece of steak or 150 grams of minced meat with tomato juice and spices. Or fish with creme fraiche.

I also eat pancakes, with jam or slices of apple. But only one or two a day. Instead of slice of bread or dinner. As a pick-me-up I drink decaffeinated Earl Grey tea with unwhipped cream or full fat milk.

Overall I just don’t eat that much, in volume. I do eat enough in calories, what with the butter and all. I have gained some layers of fat in the past few months. These will disappear now that I’m more active. I’m not worried.

I have found that ritalin/dopamins will keep you going and will take away the desire to eat. This can be a seductive tool in the hands of someone who’s not level headed. I know I have an addictive DNA-characteristic and I feel the appeal. Reverse Therapy keeps me grounded in what’s important. As do the physical activity. I need to go out every day, every morning, to move and to clear away the toxins and cobwebs that have accumulated in my body and mood. My body is helped by mB12 and Phosphatidylserine. I need to pay attention to clearing the junk away properly, now that I’ve kickstarted the methylation process and am egging it on with the ritalin.

So these are interesting times for me. I’m deadly afraid I’m wrecking something and for this I’m monitoring my body all the time which is not good, in terms of relax and trust (Reverse Therapy primary points). I take comfort from the knowledge of and my experience with “Go Low and Go Slow” which has always worked for me up until now. I find that I seldom burden my body beyond what it can clear away in a day. Now that the gut/colon is falling into this rhythm too I get more and more confident. Confident that I am a friend to my body.

I wish my former new GP read this. We could’ve become a team.

 

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.
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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.
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The inability to make choices

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

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

ehhhhhhh………
pic by Svilen Milev

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

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

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

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

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

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

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

Tatertastic pic by Teresa Stanton

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

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

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

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

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

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

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

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

doors pic by Ivan Malkin

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

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

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

Here’s the description of the episode I saw:

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

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

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

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

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

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

One year later, a second chance.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Still ill?

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

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

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

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

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

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

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

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

Reverse Therapy: recovering from ME/CFS

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

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

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

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

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

Reverse Therapy and Mickel Therapy are what works for me.

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

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

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

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

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

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

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

 

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

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

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.

PMS from hell gone.

The past few months I got really bad PMS. PMS from hell.
PMDD. Weeks that I could not live alone because it was not safe. Because I was desperate and suicidal.

I knew it was all brain chemistry and not a chronic depression. As soon as my period started the cloud lifted and I was my happy normal self. But only for three days, the last two months. Three days after my period the cloud would descend again.

But knowing something has a chemical cause and dealing with the feelings/thoughts it generates are two different things. In the end it got too hard to manage the feelings and thoughts.

The weird thing was that my usual PMS can be managed by taking micronized Progesteron and/or Progesteron cream. I’m versed in that. I know how to work it.
I’ve had one bout of suicidal depression that was caused by a vit D shortage.
But neither one of those supplements helped this time. I was stumped.

Of course I did research and found the term PMDD, meaning PMS-from-hell. Including the suicidal tendencies. This rang true.
I looked up other people who have this and what works for them. One thing is that anti-depressants work instantly. Instead of the few weeks it takes to affect a chronic depression. With PMDD anti-depressants work instantly and you only need to take them a few days in the month.

The other suggestions I got were supplementing GABA, Lithium, St John’s worth, black bear spray, bh4 and 5htp.

I went to the doctor to get anti-depressants. This is tricky because I have a homozygous mutation for MAO A which means I already have an inborn MAO A inhibitor. Anything extra that blocks my noradrenaline receptors will have me bouncing off the walls for hours. Because I already have that tendency.

The doctor was very good!
He suggested that what I’ve been lacking these past few months is Dopamine:
neurotransmitter werkings

You all read Dutch right? The title is Function depending on Neurotransmitter.

Dopamine = attention; motivation; enjoyment; rewards.

Noradrenaline = alertness & energy

Serotonine = obessions & compulsion.

The three words in the middle read: interest; mood and fear.

The doctor must be right. There must be some sort of system where prolonged stress interacts with sex hormones (in their neuro transmitter role!) and depletes Dopamine in my head. An interesting thing to go look at.

Normally I have a healthy mix of the three. Although my Noradrenaline sticks around for too long because it’s destroyer MAO A isn’t very good. But otherwise I have a natural high Dopamine level.

He then talked me through the various anti-depressants that exist and on what neurotransmitter they have effect:
antidepressants overview

We chose an anti-depressant that affects Dopamine level, the best there is: Bupropion (this also is the only one that won’t affect libido)
It also inhibits noradrenaline but we agreed I should try it, in a low dose, to see how bouncy it makes me.

Dr. also suggested I use my sensitivity to assert if a pill was going to help me. Or even just carry it on my person instead of ingesting it.
Can you believe such a suggestion coming from a certified GP? That’s tailormade medicine right there. Fabulous!
I’d never thought of it but it is indeed something that works for me. I can sense whether something (a food) is good for me. Why not a pill?

He also mentioned the three things that improve mood:

  1. Zinc
  2. Krill oil
  3. Taurine

So that’s what I started taking. Taurine also soothes the liver which is a strained organ in my body. But it also contains sulphur which my body cannot handle very well (MTHFR/MTRR mutation)
The Zinc did it.

Whenever the dark cloud reared its head I just took Zinc and it went away again. It was amazing.
I hate when this happens, when a singular thing influences my mind so much and when it repeatedly proves it does and when I could have avoided suffering just by taking it earlier. And I hate the tiredness afterwards, when my body sighs in relief and needs time to recuperate. I hate when I wasn’t smart enough, resourceful enough, to stop this earlier.
I know I should be proud that I solved it and that I don’t feel so awful anymore. But the frustration is bigger at the moment.

So: no mental PMS/PMDD symptoms this month. I did not need to take any anti-depressant (but boy, am I glad I have them in my pantry. A good back-up whose presence eases the mind).

I’ve now had my period and we’re in day 4 of my new cycle.
Unhappiness is here again. But it’s very mild. I don’t think it’s related to the things above at all. The Zinc doesn’t attack it unfortunately.
It IS chemical though. I’m lacking something. Or have eaten something that poisons my brain. Could be the shrimp kroepoek? Or is the the stress of prolonged staying the city? The lack of chicken soup?

Either way I’m back on eating a clean diet again. No exceptions. With a brain chemistry as sensitive as mine, that’s the best thing to do.
I’m drinking a lot of (salted) water and taking enough hydrocortisone to keep my body out of stress.

And I’m re-affirming my body all the time that there is no reason to stress. We are safe. We are good. Relax. We are fluid and we are walking in the sunshine. Life is good. No worries.

(this is a solid approach to ease my Autonomic Nervous System which is at the core of my illness. More about that later.)

PS I stopped Valerian and also Progesteron pills the last week of the last cycle. Both might be energizing my system too much.

I took a Prog pill the other evening and laid awake again. Without it I sleep through the night. I do need the Prog cream for the current unhappiness though. This has always worked neurological for me so we’re back again at neurotransmitters and brain chemistry.