Running Scared

I’ve got two kinds of scared going on at the moment.

One is a result of the gruesome murder mysteries I watched on my first night of a fortnight alone in the cabin in the dark, dark woods. Not so smart.

Two is having some success at treating my disease but not finding many people who recover from it permanently. As in… there may be a hand full of them out there. World wide.
Most people who make a good recovery only find themselves crumbling to pieces a couple of years later.

I am really, really scared.

pic by Ron Jeffreys

WATCHING SCARY MOVIES WHEN YOU’RE ALONE:
It’s the first night I’ll be sleeping alone again. I’ve been spending the last couple of weeks together with my husband, with me being in the city and all. There’s a good comfort in sleeping in a room with someone else. At least there’s one other pair of ears to hear trouble coming.

But I needed some time alone. To recuperate from the city impulses. To experience silence. To be alone with my thoughts. And to please the cat who loves to be here, in the cabin, and is pretty bored in the city.

So here I am. Two weeks in the cabin. Shifting from city-glamour-fairy to nature-knitting-gnome.
I was a bit bored on the first night, having to lay on the couch, so I watched some British murder mysteries. That’s allright.
Then something out on the porch went “boonk.” And the cat woke up from her slumber, looking worried. When she does that, that really freaks my out.

pic by Angel Norris

I had to relearn all the things I learned the first time I started spending time alone in the cabin here. That I am like a bird, hidden away in it’s nest. That I am invisible to most of “the people out there”. That I have a leftover habit from childhood of not having a basic sense of safety. That statistics are on my side: as I have seldom experienced a night with a burglar or fire in my life, chances are that this night will be a repeat of all those tranquil nights. Put your fate in probabilities, darling!
Put in your earplugs, make like a woolen blanket burrito and go to sleep.


BEING SCARED WHEN YOU’RE HEALING

This is the real thing. This doesn’t go away with a solid bit of reasoning.
I’m scared because the things I do seem to be helping.

pic by Andrea Kratzenberg

The egg yokes and chicken soup I eat nourish me. The Zinc level I restored over the Summer works so well, I now crave Zinc every day. The Atlas Profilax, I now crave a walk every day. The laying down I do, my small intestine is so grateful. The HCL I take, my bile is working. The Progesterone I take, I am more at ease. The Progesterone pill I take at night, I am sleeping through the night. The diet I have, I have more energy and less moodswings. The mB12 and Folinic Acid, I’m working towards daily equilibria. The pacing I do, it gives me more good days and rekindling of some of my basic interests. The stress(y people) avoidance, works like a charm.

I’ve more or less created all the conditions for healing. There’s not much else I can do, it is now up to my body and time to get better.

That’s one scary thing right there: I’ve tapped into all the resources available. Conditions for healing are now pretty much optimal. Meaning: there’s nothing else I can do, I have no options left. This is the one basket, these are all the eggs.

Let’s hope this hand basket is not going anywhere bad…
pic by Slawek Ujma

Of course I’m hopeful that I am on the right track here. That I will continue to get better.
I even started dreaming of healing fully. Of growing old healthily.

But when I search for people recovering from ME/CFS I find but a few of them.

A lot of people make recovery. Some quite remarkably! They find a magical thing that works for them and they recover and start living life and raising puppies and running marathons.
But then they deteriorate again. Over time they grow worse than they were before.

There are not enough people permanently healed from ME/CFS out there! There should be more!

There’s a myth on the ME-boards. The myth of the invisible recovered people. We don’t see them because, when they recover, they leave the boards and start living again. They are enjoying their health. They have no time to return to the boards and tell us what worked for them. The myth is that people dó recover. But we never hear from them again. With good reason.

The recovered people who do return and tell their story are often met with skepticism and loud demands for solid medical proof. Or they are told to come back in five years because only then can one really claim to be recovered.
Or there’s just plain denial that they were ever properly ill to begin with. There’s a real ME-mafia out there that wants to be taken seriously by doctors and therefor shuns all associations with Adrenal Fatigue or CFS. They are quick to deny someone the diagnosis of ME.

But even if they don’t return to the boards to tell their story, recovered people must be somewhere. And they must be reminiscent and voicing that somewhere online. I want to find recovered people!
Because I have not yet. And that scares me shitless. Because all the recovering I do can be just that: a prelude to a disheartening relapse in my future. And if there’s one thing I never want to go through again, it is the first phase of this disease. When all systems fail, your personality is wiped out and you are withering away.
Especially now that I am all tapped out on resources. This is all I’ve got.

I’m scared.

pic by Maciej Perek

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Sleep: more questions

My sleep research prompts more questions:

– might it not be a cortisol peak but actually slowed down adrenaline clearance?
– I found a handfull of other people with this sleep pattern (sleep for fourandahalf to five hours then lie wide awake for two). We all share the MAO A mutation that hinders adrenaline clearance.
– all medicine I take that help me somewhat to sleep through the night are things that calm down the nervous system (ns) and give the parasympathetic nervous system (psns) a chance to dominate. The medicines I refer to are Valerian, natural progesteron cream (npc), polynosan, ketogenic diet and a low stress life. Does my sleep all come down to psns not getting the time of day?
– I routinely run checks through the day and find my body in a state of alertness. A dominant sympathetic nervous system (sns) certainly is my problem. Has been so all my life. Are there more things to do to combat this state of Fight or Flight? All I employ now are: npc, deep breathing, mental hygiene, relaxation, no sugar or insuline spikes. I have not found other remedies on the internet yet.
– not getting a full nights sleep certainly robs me of the customary growth hormone surge during REM stage. Ofcourse you get a fatgued body from that.
– has mainting body temperature got somethingto do with it? I had an unusual long first stint last night, 5,5 hours, and I brought a steaming hot water bottle with me. It’s still warm when I wake. Usually it’s luke cold by then. I do have temperature problems, waking up in a sweat and not being able to fall asleep for the second stint untill I cool down.

I write this from my bed, on my iPad, hoping to get my second portion of sleep soon.
But first I need to shake some annoyances I have. I keep grumbling over some remarks someone made. I think they are stupid, those remarks. Too general, too much wanting the world to be an easy place. These persons just blurt out their wisdom without aknowledging that I am dealing with a problem less than 7 percent of insomiacs have. They do not aknowledge me. But instead of dismissing the remarks I keep rehashing them.

Rehashing is very classical insomnia behaviour. Guess I should be grateful I join the 93%!
It’s so unproductive. One shouldn’t rehash at all at night.
I better direct my thoughts towards an interesting design problem. Or go on a meditative journey.

But just for the record of grumblings, that beautiful book full of dog ears and spit stains: another person came by pointing me to segmented sleep and how that used to be natural to man. Without conversation, they just dumped the link in my lap. Making me spend time looking it up and reading it. Time and energy I don’t have! Because contrary to any sleep pattern that might be natural to man I have a sleep pattern that prevents my body from healing, as illustrated by my eroding health.
You insensitive twat.
Then I got free advice on sleep hygiene (have a dark room, no tv, no coffee etc.)
Yes.
Thank you.
Spitspitgrumble

On the Way.

The past ten days I started feeling better. I am now confident to say: this thing is working. The Copper shedding is getting less, the symptoms are getting less. I have more energy but less of the high-pitched maniacal sort.


pic by David Ritter

I am hoping the robust health I’ve already achieved underneath the CFS-like symtoms the Copper induces will start shining trough now.

I can have larger doses of the Zinc now, up to 15 mg per day. Essential is that I have some Methyl-B12 and folinic acid with every meal. And vit.D3 to get the day started. And Progesteron cream to aid the Methylation Cycle, not just to balance my hormones.

With the folinic acid I noticed my body has an active craving for it, as soon as I hold the pill in my hand. It took a while for me to decide if this is the legitimate feeling of “want that! need that!” or the more addictional craving like “want that! WANT that!“.
The last one should not be fed. Each and every food or substance that induces that feeling inside me is bad for the system: sugar, rancid oils in chips/crisps, E261, fast food, food additives, drugs and nicotine (I presume)


pic by Alison Taylor

It is a wonderous feeling, to have your body actively indicating it wants something badly. I had it with the food supplement Lithium, years ago. I have it with Demeter products such as full cream butter versus commercial foods. I have it with unpasteurized cheese (“Boerenkaas”) versus most cheeses available at the shops. I have it with the one sunsoaked blackberry in the hedge versus the little waterballoons sold at the shops. But that last one is probably dictated by my mind, with me being in the field with the bees and the dragon flies and all that.
The other ones can be checked with a double blind experiment. And they have.

pic by Enrica Bressan

Other substances that my body needs do not give that reaction. The progesteron cream for example. As soon as I apply it my body relaxed. But up front, without touching it, there’s no indication it benefits from it. Weird.

Anyway. The Folinic acid.
I checked online what other people take as doses. I checked only with people who have the same DNA mutations as I do.
They vary from 800 mcg to 3,2 mg to temporarily doses of 7,5 mcg.
Up untill now I was careful not to exceed 1,2 mg but now I will up the doses to (not more than) 3,2 mg. In small nibbles through the day, whenever my body needs it to process food. It’s half time is six hours so that’s breakfast, brunch, late lunch and (small) supper at 16 hour. Brunch being the main meal and meals getting smaller after that. No meal bigger in volume than one fist. To stop insuline from happening.


A volume bigger than this will trigger insuline, even if it’s just a sugarfree salade.

My research was on the forums of 23andme.com and on the forums of ME site of forums.phoenixrising.me
Here are the people who find their way through the same wild lands of pioneering medicine as I am.

As I felt a bit better I did two things: I took a week long holiday in Ireland and I drove 500 km in my own car on a Summersday.


pic by Alan Witikoski awitikoski

The holiday was nice but an attack on the system. My bile stopped flowing (I have no idea why) so I had minimal uptake of nutriënts and minimal shedding of toxins for ten days. Only four days after returning to the cabin my bowelmovements started to look nice and dark again and my body felt better.
During the holiday, my hydrocortison kept me going. Which is a risky means to an end.

There were lovely moments in Ireland, staying with my aunt in a cabin of her own. Us having meals together at the table, with real crockery, the lovely chatting,  us laughing at her chickens. It was great!

pic by Michael & Christa Richert

Once home I was on my own again at my cabin, still on a high from the travelling. It is evigorating, don’t you find? Being part of the global community. Looking at other parts of the world, renewing your eyes for your own part.

That’s in part why I grabbed my car and made a big tour through the Netherlands. I went to all the provinces in the North. I had my car equipped with supplies: salted water; gingerbuttercake; a few grapes; lavendel oil; a lazy chair and crochet projects and a book and a sketch book to have rests whenever I felt like it.
It felt great! Being on the road, going wherever I wanted to go, seeing landscapes change, see other people driving and being free. Wasting petrol because sometimes you can just go and waste petrol because you LIVE.

I saw a stork on a lamp post. I felt such freedom and independence. I still do.

 

 

Now I am back home again, in the cabin. And, with my somewhat clearer mind, I have started working again, on one of my five jobs: designer. Or illustrator, to be more precise. I’ll show you if I got some actual things. Right now it’s in that precious state of nursing and not talking too much about it lest it withers before it came alive.

pic by Jean-Paul Brouard

Having a day off from putting out the garbage.

I took the day off yesterday: I didn’t take my pills.

Did take the hydrocortison ofcourse. And vit. D. And lots of bio-identical progesteron. (I’ll be having my period any day now and my breasts were killing me. Also quite a bit of PMS symptoms so progesteron I took a lot of.  NPC creme on the breasts and Utrogestan pills orally. It helps.)

But I did not take Methyl B12 and no Folinic Acid nor Zinc.

Amazingly I felt better and better during the day and by the end of the day I caught myself singing while doing some house work. Yes, insert googly eyes here too!

At night I was so well that I made the conscious decision not to be bothered by some heavy trucks that were parked nearby, rumbling stationary throughout the night. I just turned 180 degrees in my bed so my feet were facing the noise, let out a sigh and thought of nice things:

I slept through the night!  As customary I did wake up after five hours of deep sleep but contrary to other nights I just turned on my other side and went back to sleep. No two hours of waking.

My conclusions from this day:

  1. I took one day off from detoxifying.
  2. I am detoxing on a physiological pace: one day at a time. Just like the hormones I take: no more than what the body can process in one day.
  3. underneath the detoxing I am quite healthy! I’m so glad to note how well I felt during the day. That is my baseline, my point of reference. The detox-symptoms have clouded it for months now but I feel really assured to have it resurface so soon.
  4. this MTR/MTRR detoxification uses a lot of progesteron. In the whole Methylation cycle progesteron is needed. Other people with these mutations should know this, especially women.

 

in other news: I have elaborated my theories on human cell biology.

I think each cell has the habit of storing garbage in the outer tips of its cell. In this fantastic little video of a white bloodcell chasing a bacterium amongst red blood cells you see how it drags along a black kind of tail behind itself. I believe this to be the cellular rubbish bin, stored in a place where it interferes the least.

white-cell-garbage-bag

link to video of white blood cell chasing and engulfing a bacteria. Yay body defense system!

When the cell divides the two daughter cells each get one tip of rubbish. This garbage gets handed down to the next generation with each cell division. It progresses down the line and builds up a little with each cell life. Eventually it’s the outer cells that inherit the most rubbish from previous generations. The cells between them inherit less rubbish from their parents.

cell-divide-garbage

tidbits: it takes cells 20 minutes to divide. Unless it’s a special cell, then it can take hours. Red blood cells live up to 140 days. (I am quoting from memory…)

In ‘normal humans’ each cell clears out a lot of its garbage via the Methylation Cycle.

In ‘freaky interesting humans’ with mutations in the Methylation Cycle this day-to-day rubbish isn’t getting cleared away and remains in the cells. Stored in the tips. Eventually it gets passed down to next generations as shown by my ‘interesting’ sketch above.

In the end the cell cannot divide anymore, it dies and spills all its contents in the extracellular space where other cells try and clean it up. Store it in rubbish bags of their own.

In my 30+ years me and my cells have gathered a lot of garbage. All the broccoli I ate that I couldn’t process. Any alcohol (including the ones in beauty products), any exhaust fumes, anestetic. Garlic. Cell debris from x-rays.

My cells stored so much garbage, I believe, that their overall functionality eventually got hindered. Putting my body under stress, causing system wide symptoms of illness. In my case: hormonal imbalance, stress illnesses, adrenal misfunction, malnutrition, sugar addiction etc. And lets not forget behaviour and sensitivities that remind my doctor of people with an Autistic Spectrum Disorder.

It could as easy have been a late onset auto-immune disease or diabetes, I feel. Or a ‘vague’ illness we mainly associate with women. (such as ME, CFS, Irritated Bowel Syndrome, etc).

Well. Today leisure is over, it’s back to cleaning up garbage for me.

I wonder how long it takes, how long it will be before the rubbish is cleared and I can get my mind back… Yesterday I even thought about art and design and working! But as long as there’s rubbish I cannot. I do have to amend that legal/technical document this week however, to prevent the shit-fermenting-plant they are planning to build in the field next over. That will be quite enough to keep my rubbish mind busy.
And there’s my period, today or tomorrow. I am prepared: there is food in the house, warm blankets and lots of earplugs. No visitors. I will have a blissfull two days to myself. Just drinking tea, holding my tummy and writing that paper.
 

 

Marbles in a Row: Cake or Death?

Say you’re an engineer. You see the world through the eyes of an engineer: you like theories but you live by results, tangible results. When results do not support a theory there’s a fascinating puzzle to solve and you can get obsessed by it.

The puzzle doesn’t have to do with gears or bridges to get you going, I know of an engineer that solved the puzzle of his own Diabetes I. He wrote his solution down in a book and became a doctor to help others.

say cheese-spikes-bloodsugar-too-but-not-as-much, dr. Bernstein!

To be honest: he initially became a doctor because doctors can order certain tests that engineers cannot. Becoming a doctor was a smart solution, one typically chosen by an engineer. Thinking out of the box, getting things done.

To me dr.Bernstein is an inspiration. He took control of his own illness. Thought along with his physicians. Proposed theories, did experiments and solved the puzzle. With Diabetes I -making no insuline of any importance- he manages his daily life so he does not need insuline besides the base line dosis that keeps him from keeling over. He does not need any insuline to cover his food intake. Now that’s clever. He solved the puzzle and lives to enjoy that every day of his life.

He’s also honest about the mental implications of having found a solution. The pangs of everyday.

Whenever he passes a bakery with all its delicious smells and sights his body and mind react. They want cake! This hurts. He can’t have cake. His health is too precious to him to risk it. No cheating. But still, this hurts. On a core level because carbohydrates are the treats of life and we are programmed to covet them. But no, he’ll be sensible and grown up and do the right thing. Still hurts a bit though.

That’s ok. Things will hurt. There will be yearning and things you cannot have and plans that fall through and disappointments. We can cry a little. And then we sigh a little. And then we move on. To the things we do have and can enjoy. I find it very uplifting to know that dr. Bernstein’s solution is something he works on every day, also when he’s blue or sad or grumpy. Those are the times it really matters. Dr. Bernstein is honest about how he copes during those times and that is inspirational. Because he’s honest about being human.

Now then. I’m an engineer. I now have this black box called a body and recently I’ve been putting other things than usual in it an results are stunning. Albeit not 100% repeatable and not covered by theories very well.

I have some parts of the puzzle. Stakes are high. Part of the problem is that my mind is clouded by the supplements I take. Excitotoxins and heavy metals are floating in my brain. Sugar too. Messing up my thought processes and also messing up my self image. Tricky.

Today I am here as your engineer to present (to me) some sort of plan to handle this:

  1. I’ve gone back in time and once again have only one hour of coherent mental activity per day.
  2. this hour need to be accompagnied by physical activity because only this will help eliminate the excitotoxins from my system
  3. since the rest of the day knows brainfog more or less a checklist must be in place to remember to do/eat the right things at the right times (yeah, checklist!)
  4. low doses of supplements that will exit the body within a day means I should not have to worry about long term damage (liver! it hurts a little) and that this is not a regression in health. Symptoms should reside in a few days if I stop and the true base line of my illness will present. The one from March 2013 and its progress from then on.
  5. all other knowledge about my body is still correct and should be used (stomach works in marble sized morsels so eat small portions. This will aid the liver too.)
  6. two excellent tips from two dear knitter friends:

“Allow yourself to fret for 20 minutes. Then put aside your worries for another day.”

“You say you can feel in your gut if something is good for you. If you have doubts, they too will be felt in your gut.”

Now follows my daily checklist for this period in time:

  • eat one egg yoke, drink tea, have vit.D
  • ease into the day for a bit. End this period with some npc.
  • have your second breakfast (chicken soup) with supplements (m-B12, m-folate, lithium, multi-gland, vit D, vit C, zinc). Soup contains some foliage for brushing down the bowels.
  • do something vertical for about an hour (sewing, write a lettre, vacuum, put something away, laundry, weaving, cooking, take picture, block FO, something from the to-do list) and prepare project for resting (which knitting project of hand sewing?). This hour uses up the blood sugar and helps eliminating excitotoxins
  • wash face, brush teeth.
  • rest (one hour). Cover yourself with a blanket, you’ll get cold as your energy goes into your duodenum. Watch a movie, knit something simple.
  • the rest of the day is free for doing fun things and resting on the couch. Have a look outside once and awhile. Eat soup. Drink tea. Drink water with lemon juice. Feel free to be brainfogged. Allow and aid your body to take out the waste. Eat some carrots to provide extra roughage.
  • go to the toilet whenever you think about it
  • this will take a couple of months. Forget about work during this time. Don’t fret.

NB. I’ve making butter cakes lately: a glutenfree, sugarfree version of the famous Dutch Boterkoek. (It’s not really sugarfree, I put in one fig because I felt like it)

I use 250 grams of excellent full fat butter (I use Demeter, a non-homoginized organic butter); 250 grams of rice flour; some salt; quite a bit of pepper; a lot of chopped ginger (one or two fingers worth); lemon peeled skin of half a lemon and one chopped fig.

mix it all in a round baking form. No need to line the form with grease or wax paper. Put in the oven for 20 minutes at 180 degrees celcius. Let it cool, put it in the fridge. Delicious the next day!

Dear engineer,

remember the basics: the stomach only takes food one marble at the time. Blood sugar rises ridiculously, even with small bits of food, and this cake has both starches and fig sugar in it. So temper your intake of this delicious cake. Whenever you have had some and feel a physical yearn for another piece, you have taken too much. Do something else for 20 minutes to let the blood sugar levels calm down. Best thing to do is physical activity to get rid of the sugar without having to use insuline. Insuline is a poison. But a better poison than (blood) sugar.

best whishes,

your better half.

ok. Here’s Eddie Izzard on youtube with Cake or Death and a design by Defiant Damsel over on Etsy:

back seat, sitting back

I’ve been through a couple of tiring weeks. I’ll need at least a few more to recover from them. So not much news or progress. It’s mainly regaining and maintaining an acceptable level of energy.

in between: I bought a car. A new used one. This will break the isolation I live in when I’m in the cabin. In my head I am now free to go and visit knitter friends. It is a knitters car!

and I am sewing a dress! With real couture techniques. But it’s something I can only do in the city. Somehow I’ve got to wear my smart lady shoes for it. Good thing I like the city!

I like learning to sew and doing this. And it yields a usable, flattering result to bet! Did you know there’s a whole sewing community online? With a lót of women who like to sew vintage patterns, with lots of couture techniques. There are a lot that approach this engineer style too.

I am documenting my progress in another blog: BumbleSews. I have nearly finished my first ever dress. It only needs a hem, a pressing and some magic.

The third piece of news I’ve got is this: I got my genome checked. I send some spit to a lab in the USA and they send back a bunch of letters and numbers that basically is a recipe for me. A pattern. A DIY menu.

Very interesting! Seams Seems my vit. D receptor is broken…. as is my B12 converter. I also should avoid heroïne and lepra as I am extra vulnerable to those. Oh. OK.

gengen

these are my results for genes that code for the Methylation Cycle. This table was generated by Genetic Genie, a wonderful initiative.

These are just some of the thousands of genes. But very important ones. Because the Methylation Cycle is VERY IMPORTANT. Unfortunately I am too tired to understand the full impact very quickly. This is a nuisance because I am used to understanding things quickly. Especially new fields.

All I’m doing these days is freaking myself out, reading about the interpretations of those few genes that are not perfectly good. Estrogen dominance, lithium depletion, heavy metal toxidity, autism, vit D shortage…. it’s all there, written down in my genes.

There are solutions: ingest the things you cannot make yourself. But you have to do this carefully. Too much too soon will release too much toxins at one. But I am too tired to draw up a good plan for this.

I keep reminding myself I got this old, with these genes, and I will live with them for a few more weeks at least so there’s no need to try and understand and fix it all today. *tongue in cheek, I expect to live longer than a few weeks with these genes*

I also find it difficult to match the different scales of things.

I was at ease with working on the big scale: mental, spiritual, amygdala, nervous system, relaxing each day, meditation/yoga (if these were my cups of tea), happiness, living life.

The smaller scale I handled too: food, supplements, hormones, muscles, specific organs, skin.

But this new scale: cells, amino acids, methylation cycle, molecules. It’s all new. Well, I read about it when I first fell ill and I took supplements that work for cells in petri dishes. But it was all theoretical.

Now that I have practical knowledge of what is going on inside my cells and what is nót going on, I am freaking myself out.

And I have difficulty connecting these three scales with each other.

I shouldn’t even try. I should focus on resting and recuperating from the weeks behind me. I have no brain cells left for this intellectual work. I should sit back and smell something.