update 1 november: six months of recovering from ME/CFS

Today is six months after the first day of my leap in recovery. This is an update on how I’m doing. Because I am doing well!

For me, recovery suddenly started on the first of May when I started to take 100 mg of body-identical Progesterone (not “the pill” or your typical HRT but the daily dose of bioidentical Progesterone that all human beings need, regardless of sex or age) daily and lowered my chronic bodily stress overnight by stopping the constant worry about it (through Gupta Amygdala Retraining Program).

This leap in health was possible because I had set the scene: my digestion track was in optimal health after years of no vegetables, no sugars and no grains. In those same years I had managed to shed some of the toxins that had build up in my cells during a lifetime (due to DNA damage to the normal waste disposal processes) and I had supplemented all minerals to sufficient levels.
I had also learned to take two horizontal rests every day, to facilitate digestion and to let my nervous system experience rest and calm. (get out of Fight or Flight and into Rest & Digest).
On top of all this I had reduced all life stresses (work, noise, mother-in-law, social gatherings, having to make decisions and choices all day) and I was supplementing two hormones I do not have enough of at the moment: Cortisol and Progesteron (the sex hormone. Not the basic building block all humans need that I reference in the first alinea). I supplement these two according to symptoms and time of month.

Recovery in the last six months has been steady and continuously and today I live bussier days and get more things done while maintaining a calmer mood. My house is cleaner, I’m better fed, better clothed and take showers more often. I go and visit friends. I drive my car more. And I’m thinking about working again.

And it’s not easy, being in better health.
I now realize that besides the hardships of being ill it makes for pretty easy days, when you’re very very ill. Your priorities are few and pressing. There’s getting out of bed. There’s getting food and keeping it inside. There’s trying not to crash. There might be some washing of bodyparts. And then there’s getting back in bed again.
All other things fall from the plate. No need to spend a thought on them. That’s easy living. Bleak but easy.

(Not that being ill is easy. Besides the practical difficulties there’s the disappointment and despair and frustration to deal with. Not an easy task by far.)

Being in better health piles up opportunities to fill the day. I have great difficulty sifting through them, deciding what’s important. Often I’m knackered from the contemplating and choosing, not even from doing.
I had not counted on that.

The other thing that surprises me is the emotional luggage that’s come tumbling off this vehicle now that I’m gathering speed. There’s all kinds of things emerge and need to be cleaned up and repaired. Things like my lack of basic safety or coming to terms with the nonsense of the world and of life and of time.
I wonder if I had stowed these issues away while I was so ill, just because there was no reserve to deal with them at the time.

Now a summary by subject:
FOOD
I still eat chicken soup as my main staple. Two or three times a day. It’s home made stock, I make it once a week. Fatigued people can make it too because you can take many breaks in between the preparation.

recipe ME chickensoup

needed:

  1. chicken (whole chicken, with bones but without intestines, feathers, feet and head. PReferably organic. Can be a mean old chicken)
  2. stalk celery (preferably organic)
  3. ginger (big piece, as potato-like as possible. Gnarly ginger is tiresome to skin)
  4. vinegar, salt, pepper

utensils:

  1. large pot. 5 litres?
  2. small plate
  3. paper towel
  4. colander
  5. cutting knife
  6. schuimspaan
  7. perhaps scissors to cut the celerytops and perhaps oven mitts if the top of the pot gets too hot. A chair to sit on.

making the soup:

  1. fill a large pot with water (luke warm of cold), add a lot of salt, two large glugs of vinegar and the chicken (don’t add the pepper yet). Put it on heat. Go lie down.
  2.  chop up the celery (by scissors or by cutting on the small plate) and put them in the colander. Go rest.
  3. rinse celery in the colander. Leave in colander in sink.
  4. cut up the ginger on the small plate. Small enough to eat in a spoon of soup. Put the ginger on top of the celery in the colander. Go lie down.
  5. Place the paper towel on top of your small plate.
  6. open the pot with the simmering soup. See if there’s any scum rising to the top. Scoop that away with your scoop and dispose of it on the paper towel on your small plate. Repeat this process untill almost all of the scum is gone. This scum is white or yellow or brown froth. It consists of nasty big molecules of protein that your body doesn’t like. It’s not fat. Fat is good.
  7. When the scum is mostly gone tip the colander in the pot. Add pepper. Put on a simmer and leave for a couple of hours.

 

The gelatine in the soup is the main health benefit. And something warm. And fat and some protein. The ginger facilitates digestion as does the vinegar. The salt is very important for the adrenals and for the low blood pressure.

I keep the big pot in the refrigerator and take out small amounts that I warm up on the stove in a small pan. Just two big scoops, enough to fill a small bowl. This is my break fast and my dinner.

At lunch I eat chocolate ganache and whipped cream. Once a week I eat fish, I make a stew of it with zuccini and koreander (again a gelatineous dish).
As I am more physically active now I eat more carbohydrates: apple pie; commercial chocolate figurines and salted chips (crisps if you’re British). I also eat chips once in a while (fries if you’re American). Sushi once a month.
Oh, I should tell you about my MarvelSushi!

recipe Marvelsushi

  1. place a slice of roastbeef on a plate
  2. sprinkle salt on it
  3. add a slice of pickled ginger
  4. add wasabi
  5. add a third of your finger in full fat butter
  6. roll up. Let it come to room temperature. Enjoy.

I take care to choose ginger and wasabi (and meat) with no additives. The ginger has a bit of sugar in it but that’s ok.

So still I don’t eat a lot. That’s ok because digestion takes a large portion of my energy and I’d rather use it for something else.
I’m also convinced human bodies are better off without carrying around a pound of food in their tummies. I have no bloating and my belly doesn’t hang over my belt. I’m not skinny either, oh no. And I’m never hungry, except when I’ve snacked too much or too sweet. Right there is an illustration of dropping blood sugar that rose too high. I probably got my insuline flowing than and am storing fat. (it’s what happens with the “food coma” people sometimes mention) I try and sit out these rides. I go outside, have a look around. But whatever I do, I try not take another bite. (I don’t always succeed)

My poo is excellent. Small dark marbles, all soft squished together. A sign my bile is flowing and digestion is good. I aid my bile with HCL during meals.

Sometimes my belly hurts. It’s any time I eat something with vegetable skins (oats, nuts, seeds, vegetables). I get bloating and it really hurts. It will easily take a week for things to settle again and during this week I’m tired and sluggish. This now has made it easier for me to stay away from these food stufs.

AGING
I’ve noticed I’m entering middle age. My belly skin is getting that papery fragile look. If I eat more calories than I use up it settles in little soft bags on the side of my upper legs. If I don’t eat enough protein my muscles grow weak and my hip starts to hurt (also if I don’t take enough magnesium supplement or have had too much dairy products)
I finally got a set of glasses that addresses both my double vision and my need for reading glasses.

I know I’m entering middle age not because I need reading glasses but because I settle for “good enough” instead of optimum.

SLEEP
I sleep better now. After all these years!
I’ve participated in a sleep study. It ruled out sleep apneu, snoring and restless leg syndrome as causes for my insomnia. They could not explain why I lie awake and have done so all my life.
They did establish that I do get through all sleepstages. That’s good to know. I did get to REMsleep after the bout of insomnia which is a bit weird because usually you wake up after REM and before you dive back into another cycle.

I’ve gone into Sleep Restriction Therapy because it’s an effective therapy although experts don’t know much about sleep or why it’s helping. SRT is all about restricting the time you spend in bed so your body realizes it better utilize that time and sleep. I go to bed at half past ten every night and rise at half past five.
This is a harsh therapy and should not be done by anybody suffering from full blown CFS.

I started it over the Summer when I had time during the day to be sleepy. (Didn’t take any naps though, that’s part of the therapy).
Whatever the results, it taught me that sleep is malleable. Pliable. And has much to do with your every day state of mind.

I don’t sleep through the night. But I might.
Whenever there’s a mosquito or a snoring husband or a whining cat or inconsiderate people outside I’ll wake up and have my usual insomnia for an hour and a half. Then I go back to sleep.
Also when my body is out of sync (because I overdid it or have eaten wrong foods and upset my stomach) I’ll lie awake.

However, when my intestines are fine ànd I am calm and peaceful then I will sleep through the night. And my bed/my body needs to be clean and of comfortable temperature. (dust, dust mites, kelp, thyroid)
I’m no longer trapped in that fixed rhytme of 4,5 hours sleep, 1,5 hours awake and then a couple of more hours of bad sleep.
Things are pliable. Sleep is pliable.

I’m continuing with the restricted sleeping times. My light goes out at 23 hours and my day starts at 6.30 hours. It seems I’m someone who does better on fewer hours of sleep. 7,5 hours are good. Longer makes me sluggish. But I’m not sleeping all night every night. I’m still in the process.

What I hadn’t reckoned on is the importance of emotional state on sleep.

EMOTIONAL STATE
I had early on realized part of my chronic tension and my insomnia had to do with not feeling safe. Not in the world, not in my body.
The Sleep Therapy Psychologist gave it its name: lack of basic safety (“basisveiligheid”)
With that I found a psychologist’s world of knowledge to explore. I’m summarizing what applies to me, not others:

My lack of basic safety has lead to an unhealthy way of attachment (“onveilige hechting”) meaning I’ve resorted to living strong and aggressive and not needing my parents. I’m alert all the time and have emergency plans and contingency plans for every eventuality. Also for every absurd eventuality like a meteor coming crashing in or a long time neighbour suddenly drawing a gun and going berserk. I’m prepared for worst case scenarios. Living like this takes a lot of energy (hence adrenal exhaustion in later life)

I’ve done EMDR to deal with the hurt and grief of the baby that missed out on feeling safe. EMDR is amazing! My GP marvels that it’s the only therapy that works and he explains it likes this: you occupy your working memory with the clicks or the visuals while you revel in the (dire) emotions of the trauma. The brain cannot facilitate both processes and somehow dampens the emotions in favour of the occupation of the working brain.
I did it on my own, sitting under the tree. I watched my thumb while I moved it in front of my eyes. Then I went into the emotion. It was not nice to be in the emotional place of that baby again. Not nice at all…
But I had faith in the therapy and after a couple of minutes I felt the grief and desperation lessen. The whole process took maybe 15 minutes. It was hard.

After that I could look back at that babylife of mine and new thoughts found room to blossom. Thoughts about my parents, how much it must have hurt them, not coming to my aid. Thoughts about how clever that baby was -and its body- to come up with a solution to survive in spite of missing that basic premiss of all good living: being at home in your body and at home on the planet.

Having dealt with the emotional side of things I wanted to connect with the subconscious and/or nervous system side of me and install that sense of basic safety. I think it will bring my nervous system much ease and calmness. Processes will run smoother.

Not wanting to go to think/talk therapy because I’m too clever in my head I looked for ways of connecting to the subconscious that didn’t involve psychotherapy or the rational approach.

The Sleep Psychologist proposed Motoric Therapy. He explained what it was and it send me screaming for the hills. “A therapist will slowly close in on you and in the end he will hug you.”
After some research I understood why this idea makes my skin crawl: it is contra-indicated for people who are negative attached the way I am. It will make things worse.

I proposed Hypnotherapy.
I felt really ready for that. I found a therapist and we clicked.
But unfortunately she didn’t deliver what I had hoped. Not knowing much about this kind of therapy I had asked her to instruct my subconsciouss it is safe. My subconscious loves an authority figure and any instruction echoing the truth would be welcomed.
But the lady has not done so. She was afraid it might skew my assesment tool for general safety. She had an example of a man with diabetes who felt so safe he stopped taking insuline.
Clearly I had failed to explain on what plane my problem is. Preparing for unprobably meteorite crashes is something else than denying existing illnesses.

Instead she guided me on two trances, with strong shamanic colouring. This I can do on my own easily. Effects did not linger and it was a waste of expensive money. :(

A friend brought Body oriented therapy to my attention.
That’s where I’m at now, I’m working through the book of Levine.

AUTISM
I was up for diagnose at the Autism Centre in Utrecht that specializes in Autism in (adult) females. But after reading the surveys I can tell I’m not in the middle or the extreme of the spectrum. I have traits of the start of the spectrum for sure. Even traits I did not realize where indicative such as pulling on my eye lashes which will calm me down.
However I decided not to pursue a diagnosis with them. For one the treatment they offer solely consists of explanations of Autism and courses in Mindfullness. Both of which I do not need from them.
Secondly, the survey that a close friend had to fill in about me was horrible. The words, the atmosphere. Awful.
Thirdly, I don’t have a close friend or relative who could fill in questionaire …. no one has spend enough time with me in the last couple of years to be able to answer their questions. Which were horrible anyway and wouldn’t want to expose my friends to.
“When you come and visit the female, does the female offer you something to drink?”

I spend time at AspergerExperts.com and learned a bunch.
Good site.

I concluded my “autism” is malleable. I don’t think it’s ingrained in my brain structure. I think it’s more in the software: in the neurotransmitters and in the hormones.

HORMONES
I think I had an encounter with perimenopause…. Twice. Got my period a whole week early, twice. This has never happened in 10+ years (and I’ve been tracking!)
First time was after the EMDR/emotional week. Might be connected to that.
Second time was after an amazing weekend at a retreat with the Dutch National Wool Spinners Guild. I met all my friends, had a lovely time, extended my stay, drove to and from the venue myself, ate weird things.
And afterwards, I’m a little bit ashamed to say, I did not take to the couch.
Instead I embarked on a full week of spinning wool which requires me to sit up straight.

Lots of people get ill after these weekends. Little colds flare up. Exhaustion. People need a pyamaday. So it’s to be expected.
But getting my period… I was not pleased. Because I dread perimenopause.
Oh well.

Otherwise I’m handling my hormones acceptably.
It is hard though. I can’t take anything I feel seriously. Any feel of dread, doom or despair is hormonal in essence. I have to weather it. Keep breathing. Don’t try and solve it.
The one thing to do is to get physical active. That will aid the body in levelling the board.
But it takes willpower to make it happen, physical acitivety.

LIFE
Trying to keep an emotional balance in spite of fluctuating hormones and experience how I’m basically safe and also something another person might call mindfullness nowadays I’m thinking at every turn: “I am here. I am now.” It helps to be (in) my body. It helps to see en enjoy the things around me right now instead of the things in my future where my mind usually dwells.

Often my thoughts and my feelings stray away and I see how life unfolds, how things are, and I feel sad about things we are losing. Species, spaces, traditionals, stories.
I try to turn my thoughts around, focus on here and now, on the wonders that surround each of us in the here and now. Hoping my feelings will follow.
But it’s hard.

The mind keeps predicting what will happen. We will get more traffic, more people, more houses.
More people will escape into their monitors and game devices and enjoy a mental life online or emerged in games or documentairies.
I will grow old and loose more of my bodily abbilities and one day I’ll end up in a facility where other people will determine what I eat and when I eat. Overthrowing my optimum diet.

I see that’s how we live. And that’s ok. We live mediocre. People in extremes

I see how people fill their lives. How cat fill their lives. It tells me something about the essence of life. The essence is not getting a goal.
the essence is in being in the moment. Experiencing the and through the body.
but words fail me. And I don’t want this to be al sagy and life motivating and atracking more people who make money by getting followers online and dishing out life wisdom in one liners.


JOB

These six months were meant for me to flounder around. Do nothing. Enjoy the day.
That has been a hard task. I find it hard.

Especially now there’s more room in my days, in my head, to do something. Suddenly having a job is back on the table.

I’ve been thinking about it. What kind of a job. What would suit me. I dabble in some activities. Fell flat on my face because ambition creeped back in and sucked all the joy out of the activity. I felt guilty. I feel guilty.

I still struggle with this.

THE NEXT SIX MONTHS

The next six months are meant for more floundering about. More healing, more recovery.

Install that better sleep permanent. Come to terms with doing more in a day yet still balancing rest and pacing. Clearing away more of the emotional clutter (there’s still a portion of relationship-stuff to be addressed and revived). Getting the house and the cabin in good shape.

Getting through the dark winter months. Managing hormone levels. Hoping to get some sort of health level established, as a base for approaching middle age.

Dealing with the tremendous fear and worry I’m wrecking my body. Yes, I’m still scared.

So see you back on the first of May 2015, when I’m one year in recovery.

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