Minor set back. Hopefully.

Yesterday I crashed. A good proper ME-crash. It came right after I had a bowel movement on the toilet (just regular, not strained) and when I entered the room all energy drained away. I wonder how that works, what systems are involved. Homeostasis. Nerves Vagus.

It took me an hour to find out that this was not about adrenals or cortisol, this was good old ME. I rested in bed that hour. It’s not uncommon for my body to lose its footing after a #2 or a shower. An hour rest will usually remedy it. Then it’s just the adrenals. (snicker: “just”)

But not yesterday. I could not sit upright after an hour, even with extra cortisol on board. Not after two hours. Not after three. So I’ve been in bed yesterday all day. Today too. Eating chicken broth. Sleeping with the cat. Thinking about knitting (Can’t actually knit). Supplementing with lots of HCL. Trying not to freak out (for this I need to talk to my husband, to put my thoughts in order. Another symptom of ME, when you lose sight of whats important and/or logical and/or probable). Luckily all these “hacks” worked.

I had a peaceful day. Two of them.

The reason I crashed is that we’ve just had two weeks of stress because the cat got terribly ill. She had to be rescued by the vet with oxygen and a drip and the works. Loosing her was suddenly a real option. I bawled my eyes out for a few days.

Then we had to snap into gear and make difficult decisions. A quick trip to a specialist far away had to be planned and carried out. And ten days after it started the cat pulled through and we could reconvalence together. We slept for two days in my bed. The cat continued sleeping for another two days and I walked around weepy and chagrined. Two hormonal symptoms easily explained and treated with mental hygiene, a walk outdoors and supplements. And understanding.

But then Saturday came and I went to the toilet and when I came out my body did kaplooyee.

I’m back to … 40% activity level I guess.
Yesterday I was out of bed for an hour twice. Today I thought about taking a shower but that’s all it’s going to be, a thought. I’m out of bed now for an hour, to write this, but I have not bothered dressing myself.

There’s a wave of despair and frustration rolling over me all day, to and fro. There are a few things I had really planned for this week that had to be wiped from the table. Sewing a dress, studying a government plan for the cabin and making a start on an engineers’ rapport on the manure plant. (Yes, that’s still going. We’ve now reached the highest court in the land and my rapport can help stop the development. I’ve reread what I wrote last Spring and what I wrote a year and a half back and both papers read like I was high or drunken. I’d love my final rapport to be more balanced.)

But the despair and frustration of all this plans aborting I can handle more easy than before, when I was ill all the time. I divert my attention. I surrender to true relaxation and feelings of safety. And I still have room in my brain for extra curricular subjects to think about. These are the things that have presented themselves the last couple of months and that have nothing to do with being ill.

They are art, illustration, printmaking and engineering. And sewing and designing knitwear. Imagining knitting parties, with puns.

But it’s scary to be back in this place. Where my body just does not have the energy. Where it’s struggling. Where I want to sink away in a mist of not-having-to-deal-with-anything. Especially not the fear that this is permanent.

I estimate I need at least another two days of absolute rest. In “the community” (i.e. http://forums.phoenixrising.me/index.php) this is called Aggressive Rest Therapy. And one of the hardest things to do is slowly transfer this into moderate activity. You have to understand that even though you feel better your body still needs the rest TREMENDOUSLY. So you have to lie down and relax, even though you feel good and want to do all the things you could not do before and you want to celebrate life and see your friends and feel the sun on your face. No. No.

You have to do more like: 15 minutes up (even “up” like this: sitting on a chair) and then lie down for 10 minutes. Flat on your back. Eyes closed. I need to give my body the opportunity to reset totally and to use all excess energy for healing. It’s all just so precious.

Doing things this way is not easy. For example, I’m at least two days from even thinking about such a schedule but I’m already up and writing this for 60 minutes, way way past the time I allotted for it, just because I can. And because I feel rebellious. It’s a treacherous trait of this disease.

I’m going back to my bed now. I’ve been reading reddit.com all day, especially the Ask Me Anything threads with Les Stroud. Mental management is the key element to surviving, he says. When you’re utterly alone and don’t see the point. That’s when you do it.

5 year plan to get back to health: reminder

A year ago I wrote this post. It’s a plan to get back to health in a slow, sure way.

I hope in the previous year I’ve done what I set out to do: mainly pacing myself and taking it step by step.

Now is the time to reassess the plan, see where I am, plan for the second year of the 5 year stretch.
That this post made it onto the blog is as big a surprise for you as it is for me. I prescheduled it as a reminder to myself. The fact that it got posted means I should take stock and assess where I am now and how I will slowly tackle the next year of my healing.

Hurry slow.
 pic by Michael & Christa Richert

health holding steady at 75%-80%

It’s holding! My health is now steady at 75 or 80% of what a normal healthy person has.

Sleep is continiously good now. Unless I eat something wrong.

Belly is good. Unless I eat something wrong or have days of excitement/stress such as the winter holidays.

Since it takes days if not weeks for my gut to heal it’s now not very hard to decline things I shouldn’t eat. As long as I remember to bring butter, chocolate or whipped cream I don’t feel left out either.

The hardest thing is to concede to the limitations of this life. Of course everybody has them, limits to their life. Nobody can do everything they want to, there’s simply not enough time in a day!

I have found I can do now 5 things in a day. Not more. Anything more I plan must be assumed a frivolous wish.

The list I must chose from:

  • take a little walk
  • take a shower
  • change the bed sheets
  • draw something
  • sew something
  • design something
  • write something
  • felt something
  • spin wool
  • wash wool
  • write a letter or card
  • make a phonecall
  • drive somewhere and back
  • visite the shops
  • clean the house
  • do the laundry
  • cook dinner
  • bake something
  • have a visitor
  • be a visitor
  • write a long blogpost
  • have a bath

only five things a day, I must chose carefully. All boxes need to be ticked: self maintainance, house maintainance, “career”things, social things.

I’ve started a little notebook or gratitude journal to note the 5 things I do each day. So I have something to counter the feeling I’m doing nothing and failing my to do list. It’s a simple tool but it works for me.

You remember the Spoon theory. I have five spoons now. And luckily they are much bigger than they were before. Getting up or getting dressed no longer requires a spoon. What luxury!

 pic by P�ivi Rytivaara

I still follow my own tips for preserving energy which I wrote down 2,5 years ago. I just realized as I stumpled across them.

Which is why I’m not offering the link to the Spoontheory right now. Because I couldn’t find it right away. And you now how to work the Google.

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.

the day before a health update

this morning I took a shower straight out of bed.
I know! First time since 2008.

So there I was, in the shower, congratulating myself with the recovery I’m making. Planning to blog about it because it’s a nice opener for the update on six months of recovery I want to post tomorrow.

Then I opened the shower door and realized: no towel.

Also no deodorant, the wrong underwear and ripped tights, But these things I only discovered later, one by one. So that’s four trips through the house before I could complete the shower.

Pfff, I’m gonna lie down for a bit now and curb my cockiness about recovery ;-)

but yay @ shower homeostasis!

 duck by Niels Timmer

End of this blog.

With the past post I think this blog has come to an end.
This blog was intended to help me straighten out my thoughts. To document what I want to do with my life. To navigate through my life, given the restrictions imposed.

I have found what it is I want to do. It’s still the same as it ever was: illustrate, write, art, design, engineer, create. All at once and none of them accumulating to something great.

There are still the same old things holding me back: ambition, perfectionism, fear of failure, fear of choosing, the need to be seen, the need to be acknowledged. Ah, such child’s needs… I may never grow out of them.

Watching me take these hurdles and me documenting this struggle will be tedious and with lots of repetition and small victories and never ending in a big crescendo.
I’m not going to write it down.
You’re not going to need to read it.
It would be equally exhibitionistic and boring, for all concerned. And really not that interesting.

Through this blog and the time that’s passed I’ve learned that there will never be enough hours in a day to do all the things I want to do. No matter whether I’m bed bound, brain fogged or running around drunk with sunshine.
There will always be choices and priorities to be set.

I have learned to think my way through some faulty assumptions I was carrying and building my life upon. Assumptions about life, about society and about what makes for a meaningful life. There’s that.

And as of today I glimpsed another truth. The truth about existing, meaningful, without giving account. Without given witness.
Without catching meaningful thoughts in a sentence. Without blogging, tweeting or writing a book about it. Shedding that urge, the urge to visibly exist. Using the time and space that it frees up to cuddle the cat, to share its place in the sun, examining something rustling in the tall grasses.
Because that is living.

I have a confidence that living unforced like this will bring out the drawings too.
Or it may be a tree house I build. Or an urban space I design. Or a cake I bake for a friend who loves owls.

20140603-103959.jpg20140603-104016.jpg

Learning to be well.

It’s been 4 weeks now since I figured out my ME. I’ve been recovering ever since. My activity level compared to a healthy person soared up to 70%.
I’ve been doing stuff!

The last two weeks I had several knitters over for day long visits. I baked cakes for them and cleaned the house and had gone out and bought gifts and did the groceries and returned to the store the same day to pick up something else I needed. I showered.
It was amazing!
Last Friday I topped it with a visit of my own: I took a 2,5 hours train ride to a knitters’ house. Stayed there all day at the wool party and then took the train back.

That was a bit too much for me and my body.
At the end of the party I burst out in tears because I was too tired. I was much embarrassed because tears did nót fit the mood at that party. Luckily they know me and my condition and knew it was my body crying, not me.
But I still had to travel back to home, cradling my overwhelmed body and exhausted mind. We did it, my body and me. We arrived at my home town and my husband was there to pick me up at the station. He brought me home, he had already put tooth paste on my brush, and 4 minutes after I stepped over the threshold I was in bed, asleep.

Now I’m in the recovery zone, recovering from these two weeks in which I pushed the envelope. I’m not complaining (much).
I’m amazed how well I spring back from all the tiring things. Even with the collapse in Friday -which wasn’t a crash so well done, team me!- I managed to drive to the cabin by myself on Sunday. And I’ve been busy here. Doing laundry and cooking yesterday, both on the same day.
I skirted a dirty sheeps’ fleece on Sunday!

This is really weird.

So yes, lots of activity, even while recovering from two tiring weeks. My digestion is not well, with all of the cakes and wonderful stuff I ate. So it’s back to chicken soup, I made a big batch yesterday.
I have all kind of aches, my body would really like a warm bath. I’m picking up my daily walk again today, movement will help getting rid of aches and waste drifting in the blood stream.
I’m doing well with the Hydrocortisone, judging by the mad skin reaction to mosquito bites and oven burns (baking cakes) I have not suppressed my immune system.

The most wonderful thing about all this is that I actually have to LEARN to be well again.
First thing was imagining how it is to be well. I had not done so in many years. Not that I was lamenting in all the things I could not do all the time. Comparing what I wanted to do to what I actually could do was just not something that took up residence in my mind. There was the regular disappointment when I had to decline an invitation, again, or back out of engagements. Those were times of hot tears.
But hot tears dry quickly. I never laid around for long, pining for the time when I used to be able to do alllllll these things and now I can’t and boohoo.

Now I do. Now I’m mentally exploring what a healthy person can do in a day. What I can do, soon. What I would like to do. What would I like to do?
What now, will make me sing and cheer and jump out of bed and start the day eagerly?
It’s a freeing line of thoughts to follow.

(Again I’ve stumbled upon an area of thought that shifts the way I see the world, making it once as big, without actually changing anything in the physical world or in my daily reality. I’m amazed at how much there is to explore in the mind’s world.)
(Other such experiences I had were:

  • when I first started to see a city/architecture as a sequence of spaces instead of masses. Spaces allow movement through them, people moving, with their eyes seeing and their bodily mass associate to the masses around them, being it architectural or human masses.
  • when I used magic mushrooms -one time only and it aroused a dangerous interest in a repeat experience which luckily I did not pursue, more by chance than by smart- and I realized my eyes do not portray the world as it is. I saw colours and shapes in ways I’d never seen before. It told me the world is more than and different from how I see it and it started thoughts about being an entity in a world but not off this world, not in the way the senses suggest. Basic philosophy stuff, but quite different when approached from an emotional perception than dry intellect, as I had done up to that moment.
  • when I finally slowed down, here in the cabin, ill, dazed. Finally stopped absorbing the news and caffeine and the urban way of life and career opportunities and getting ahead and having goals and planning my days. When a day would just float by and I’d be. Just be. Just like the cat is. Like the tree is. No stress, no plans. There’s a whole world opening up once you just “be”. And I’m of a mind that it may be the true world, the way of our planet through all its scales and subjects of science. The world all other life lives in. Ought to live in. And that humans are the odd ones out, running our monkey business because of that brain we’ve got.
  • first time turning a heel when knitting a sock. Forging a 3D shape out of plane constructions is magic. A magic you can tailor to the specifics of your body. Suddenly you are a creator and a fashion designer. Linked with all garment makers that came before, which goes back straight to the very beginning of human existence.
  • first time driving my own car on the motor way. Freedom! I could just keep on driving, I could I could. And: operating a machine to bypass the body’s limitations. It’s what we humans do. It’s what female aviators did, a hundred years ago.

Anyway… )

LEARNING TO BE WELL
Now I find I have NOT gotten more hours in a day with the more energy I’ve gained.
If anything, the process of choosing and setting priorities has become more pressing. Because there are more opportunities and options.

Luckily I’ve trained a bit for this, while being ill.
I now realize I could pour all my new found energy and time into getting my house clean, into getting a well coordinated garderobe or into knitting all the yarn I have.
It’s so easy to loose your day in chores, administration, keeping up with people, keeping up with the news and getting things done.

Instead I will have to live in a house that’s not much more tidy then it was 4 years ago nor will I have perfect garments and I will probably die, a hundred years from now, in possession of some of the same skeins of yarn I already have.

Instead there’s that one golden hour a day, right after breakfast, in which I can do the thing that matters to me most.
I have to learn to leave all the other stuff for later. And figure out what it is that matters to me most.

You already guessed it has to do with art, illustration and producing something. The weird thing is that for the past 3 days I’ve set aside that Golden Hour for just those things. But I don’t use it.
I squander my hour on stuff. The internet. Letters that need to be written. Appointments that need to be made. Laundry that needs to be done.
And I find myself at night, sitting at the edge of my bed, quickly scribbling the drawing I had planned for that day. Or any drawing.

It seems I am afraid of doing the one thing I like to do most. I excel in distracting myself. In finding excuses.
Like today. Today I wrote this post and now I need to rest up (remember the past two weeks). Surely there’s no occasion to draw today…

It probably has to do with assigning to much weight to the choice I want to make. I’m planning again. Not being. What a strange new world!

Looking back at my CFS/ME

HOW I THINK CFS WORKS:
I feel that any major accident only happens when about 7 factors line up and go wrong simultaneously.
Small factors that are not really significant in themselves. But combined they can cause a train crash, or a melt down in a nuclear facility or someone getting CFS.

Furthermore I view CFS as an illness where the bodily system is overwhelmed and can no longer cope with normal life.
What causes an individual body to get overwhelmed varies from person to person. Everybody has their own 7 contributing factors that ultimately cause CFS. That’s why for some of us Lyme is key, for others mitochondrial stuff and to another it’s all about the stress response.

The 7 factors and the overwhelming are two different things in CFS. The overwhelming needs immediate attention and for this the body must me relieved from as many burdens as it perceives. Otherwise the overwhelming will continue and the body will be in distress and despair all the time. It’s probably stuck in a loop of automated stress responses from the brain (the very loop the Gupta Program tries to break).

The 7 factors are the ultimate cause of the illness and they need attention along the way and in some cases life long alertness/treatment.

BODY BURDENS
When we fall ill all persons with CFS/ME share an incapability to deal with body burdens.
These burdens can seem “silly” but they aren’t.
They should not be questioned but removed from ones life immediately.

A “silly” example from my own life: all of a sudden showering exhausted me and I had to go to bed directly afterwards. Often I could not even towel myself dry any more and had to call my husband to do so.

This burden felt silly and I reprimanded my body. Which did not make the burden go away.
Later on I thought up a theory that explained why my body couldn’t cope with showering (blood pressure problems, difficulty maintaining homeostasis, external change of body temp, whatever)

Whether a burden is rooted in sillyness or a plausible theory, it doesn’t matter. All that mattered was that showering was a burden to my body.
So I removed it from my life and my body was grateful for it.
(I started to wash myself seated on the floor of the shower, or with a bucket and a cloth in the bedroom. Once a week.)
Not having to deal with the burden alleviated my body.

Removing as many burdens as possible in the heavy stages of illness will help the body save its resources.

Don’t argue with your body about what bothers it, just get rid of it.
Is it light? close the curtains. Is it cheese? eat pears. Is it your job? resign (yes). Is it your family? say: “see you in 5 years.” Is it the city? go live in a cabin out west. Is it noise? wear mufflers. Is it boredom? start knitting (it soothes the nervous system and is tactile and technical and there are patterns for everey degree of brain fog).

Some solutions may sound silly or impractical. But they are not. They are what’s needed. (I pretty much did all of the above.)

LOOKING FOR THE 7 FACTORS
The second thing I did, as soon as I had some breathing space from getting rid of body burdens, was investigate what my specific 7 factors are.

I had some things ruled out via standard blood tests: vitB12 shortage; vit D3; Lyme disease; Thyroid; cancer markers; liver problems. The usual your doctor will think of.
Then the doctor could help me no further, he threw his hands in the air and said: “We’re used to seeing patients with one major thing wrong. You are all over the place! I have no idea what you have!”

With this I realized it was all interconnected. It would be very hard to determine what was cause and what was effect. So I didn’t even bother trying.

I listed my symptoms/problem areas:

  • My hormones where weird
  • My digestion was bad
  • I was malnourished
  • My bloodpressure was way too low
  • My brain did not function any more
  • I had slurred speech
  • I could not keep balance
  • I had insomnia every night
  • PMS was through the roof
  • My blood sugar was extreme and erratic
  • My body was no longer able to keep its temperature or its homeostasis in check
  • I was anxious and wired and supertired at the same time
  • I could not lift my head or speak upon waking, someone had to spoonfeed me a bite to eat before I’d respond

Because there was not one obvious starting point I thought this: “It doesn’t matter where you start to focus on. Anything will do. As soon as you improve on one area, the body will react grateful and heal (some) in other area’s. The body is great that way.”

FIXING DIGESTION
So I chose to fix the malnutrition. On a whim.

I knew I wasn’t taking up the nutrients from my food. Digestion was minimal (grey, floating poo with recognizable food morsels). And what nutrients I did absorb my low blood pressure wasn’t able to deliver into tissues and organs (that’s why the malnutrition).

Slowly I fixed nutrient uptake.

By taking stomach aids (making it more acidic), by eating every 20 minutes (keeping blood sugar level), by eating only foods that are -to me- easy to digest (no fibers, no veggies) and by laying down when the stomach empties into the duodenum (40 minutes after chewing). I also chose to eat a ketonic diet which requires minimum effort for maximum nutrients, I chose Homo Optimum Diet. With this you get your energy from fats in abundance. It also normalizes brain chemistry (it is used to treat epilepsy). And it keeps blood sugar level. I took pancreatic enzymes and a multi-vitamin. I had my husband buy organic chicken soup  and rice (I wasn’t able to cook back then)

I aided my low blood pressure with Cortinef and by laying down a lot.

I aided/indulged my brain fog by doing only 1 thing per day. I lived in a daze anyway so getting out of bed or ordering a supplement was enough for one day.

HAVING A LUCKY BREAK
I had the good fortune that my insomnia each night is of the kind where I am very alert. For one hour and a half my brain fog was gone and I was able to read medical journals and research my case. I wrote little notes to daytime-me about what supplements to buy or what to eat. I had to be very specific as daytime-me couldn’t even remember my name most days.

I think everybody has a lucky break they can employ in this stage of the illness. For me it was the alert insomnia in combination with my intellectual drive (willing and able to read scientific papers). But it doesn’t need to be any of this to get ahead with this illness.

~ Your lucky break may be your background as a care counsellor: you speak the language of doctors and you know how the field operates. You can use it to get what you want from them far more efficiently than I can.
~ Or it may be your knowledge of yoga: you can aid and stretch and calm the body while bed bound. It will soothe the nervous system, aid digestion and the lymph system and preserve your health much better then I ever could.
~ It may be that you’re a mum: you can ration your daily cuddles with your kids and you can empower them by delegating the tasks you cannot do yourself. You’ll have daily bouts of love and you’ll learn that life in your house can unfold in ways you couldn’t have imagined when you were in total control. I was very lonely on a daily basis and it took a long, long time before I learned that another way of doing things is a good way too.
~ Or can it be something as “insignificant” as that you have nice long fingers? They are excellent for tatting. Or you could just admire them against the filtered light from the window. Taking in the shapes, the colours. Being at peace. Perhaps your hands prompt you to take up photography as a hobby. In your bed, one photo per week, just with your phone, celebrating the shapes and colours your beautiful hands show you.

Just look at your life, there’s bound to be an edge you can use.

I set aside a year to get better digestion. I got rid of ambition, of the pressure or the need to achieve. I stopped explaining to people what was the matter. They couldn’t understand anyway and having to justify myself was very tiring.

FIXING HORMONES
When my body responded a bit to the better digestion and I was ready to take on the next subject and I chose hormones. Again, any subject would have worked. Again I set aside one year. This wasn’t as much a conscious decision, it just turned out it took about a year to focus on one subject and get some headway on it.

With a good endocrinologist I found out I lack Progesterone, probably from birth.
Over the years I’ve learned this is not a female hormone at all but the precursor to most adrenal hormones, including cortisol.

By the time I fully understood this my adrenals went bust, I had now acquired Addison’s disease. I was 4 years into ME and got a new disease. Gradually I learned to live with it. And again: stopped explaining myself to people.
To my new friends from the knitters’ site Ravelry.com I did explain how little energy I had. They (and I!) needed to know this so it would be clear how and why I was choosing to spend it. Pacing has always been a problem for me.

FIXING SLEEP
Sleep I have not been able to fix. But I do not care so much about it any more. I’ve found a way to wake up rested even though I toss and turn for 2 hours in the middle of every night.

 

THE ACTUAL 7 FACTORS THAT MADE ME SUSCEPTIBLE TO CFS
Now, May 2014, I can look back and identify the 7 individual actors that made me fall ill back in 2008.
Some of them I treated without knowing so when I chose one subject/symptom to focus on for about year. Others I stumbled upon or they grew suspiciously appearant in my life. I researched them and found they not only make theoretical sense but also all empirical testing in my life confirms their existence. On these 7 factors I have not found anything debunking their existence, in my case.

  1. I’m a go-getter and overachiever. Ambitious, quick, adrenalenic. Never resting, never loitering, always productive, always plans. (Tiresome to be around, no doubt. Tiresome to be, to be honest.) Besides rooted in character and upbringing this is also influenced by a MAO A mutation I carry. It makes for high levels of noradrenaline and serotonin and intense focus (making me the opposite of AD(H)D). I’m a hyper piece of quicksilver by nature.
  2. The individual make up of my intestines. They don’t like particular foods (due to individual gut flora and enzymatic build up). But also literally: the way my guts are tangled. They lie such that they press against my liver which causes pain. Which causes stress (and perhaps my insomnia?)
  3. Hormones. It seems I don’t make enough Progesterone. This caused Estrogen dominance (PMS from hell). Adrenals had to replace the shortage from the start which put a heavy burden on them all my life. As all endocrine organs slow down after age 25 this caused more and more problems over time making me very weak. And at 37 years old suspectible to CFS.
  4. CNS (Central Nervous System). I lack a basic sense of safety and was in constant Fight or Flight modus because of that for all my life. It seems my CNS was not calibrated well at birth. This is a physical thing, not phsychological. Being in Fight or Flight constantly seriously taxes and weakens the body.
  5. DNA mutations. I lack enzymes for proper use of vitD, vitB1 and Folic Acid. Lifelong shortage on those present problems which standard blood tests won’t explain. (my GP recognized the symptoms but was stumped when the blood work didn’t reflect it. He cheered when I presented the DNA evidence, he was right after all, the tests were false positives)
  6. Insomnia. My whole life I’ve woken up after about 5 hours of sleep. I lie awake -very alert!- for about 1,5 hours. Then I get another 2 hours of broken sleep. This pattern robs me of REMsleep including the boast in Human Growth Hormone and GABA it provides.
  7. various smaller things: very sensitive insuline response; sensitive to Tyramine; dust mite allergy; no hobbies and never learned to relax; Atlas Profilax needed; etc.
  8. unknown factor. (mitochondria? virus? bacteria?)

I can now see how my body was hollowed out, made weak, by this factors combined.

So when 2008 came about with its usual life stresses and then a little virus… I fell ill.

Some of these I’ll have to treat for the rest of my life: the hormonal shortage, the DNA mutations, my easy flammable character. If a virus was a factor in my case, I would have had to treat it with ongoing anti-biotics and hope I’d beat it one day. Some people with CFS who have this as a factor go this route succesfully.

MY PROGRESS AFTER ONSET OF CFS
Over the first few years of CFS I slowly regained my digestive and mental functions, just by throwing out of my life anything that burdened my body. This included noise, fruit, raw vegetable and my mother in law.
The first two to three years I lived in a daze, not knowing my name, and very anxious and stressed out from trying to fight this disease. Or just understand it.

After the first 4 years I had learned enough about digestion and nutrition; about the lymph system and the bodily stress response; about CNS and hormones, to actively combine them into a daily routine that didn’t made me worse than I was.
Only at that time did I stop getting worse.

(that’s also about the time I got Addison’s, as a funny coincidence. As a consequence of getting Addison’s  I gave up, I gave in to the CFS, thereby stopping the stress and anxiousness which taxed my adrenals so much. So there’s a major happy consequence of a funny coincidence right there. Because giving in made me sit back and accept that this was to be for a long ride and that’s when I started to learn to enjoy the moment. It is the time I started to experience calm happy moments for the first time in my life. As a quicksilvery person I had never took the time to smell the roses. Or spend an hour without purpose. I had never allowed myself to bumble about, wasting time. I had never relaxed, actually. And I had never experienced true, existential happyness, in the moment. I would never have learned this without CFS, without acquiring Addison’s and without giving in to them. This alone has been such a gift. Who knew that major life experiences hide in such weird places? And that you don’t have to do hard work to gain them?)

Over the last two years I got to understand and address the underlying factors: I started to structurally supplement Progesterone and Cortisol. About a year ago I learned about DNA and had my genome checked and things started to make even more sense. My doctor was right about the shortages in vit B12 and vit D3 all along.

Last Summer I corrected my Zinc levels (had a horrible time with Copper Dump but very worth it) and only 6 months back I started experimenting with mB12 and methyl-folate. (go slow, go low. I take one tenth of a pill twice a week and that’s all I can stand and all I need. I’m here for the long run.)

SLIPPING UP
I did slip up spectacular a couple of times since last Summer, at times when I should’ve known better.

One was stress related, I had to take to bed for 6 weeks last fall only because I didn’t manage my own stress levels when planning a trip to a foreign country.

Another one was cheese related (tyramine) back in September and I did damage my kidneys a bit with that one. Ouch.

Then last February I nearly killed myself because I was so depressed only to find out it was caused by a stupid shortage of vit D. That one really hurt my pride and self esteem. (Let’s hope it taught me not to take either one so serious)

Then last month I had two splitting head aches only a week apart before I figured out I shouldn’t eat 10 chocolate bonbons in one sitting (again, tyramine. And frustration about not being able to attend all knitter parties.)

Luckily, each time it took me fewer and fewer days to recuperate. These experiences make I’m less scared now of the next slip up. Or the next plateau or even dip in my recovery. Which will undoubtably come. (And if it doesn’t there’s menopause to look forward to.)

THESE DAYS
It’s only a couple of weeks back that I started to take 100 mcg of Progesterone each evening, even if it doesn’t help me to sleep. Also at the end of my insomnia stretch I now take a morsel of hydrocortisone.

These two things insure I wake up better rested then ever before, even though I lie awake from 3 till 5 AM. (theory: the supplements cover the wake up response my adrenals cannot provide anymore and this prevents the body from experiencing stress which it would otherwise have due to lack of cortisol just before waking up)

These last couple of weeks I’m very active during the day. This is by design. I believe movement will normalize hormone levels. And help the body to get rid of waste (which is extra generated through the Methylation Protocol). I also eat very little (but a lot of calories) to preserve energy. Basically it’s chicken soup, cream, butter and chocolate. And eggs. And fish with veggies, I crave fish with veggies. I take lots of HCL as that will relieve the adrenals a bit and the bile will remove waste.

Another significant thing these past few weeks is that I worry less about my body. This is an angle I pursue actively too, to keep my system out of Fight or Flight. (to aid this I have started Gupta Amygdala Retraining this week as this suits my theory of my particular case of CFS)

I take lots of valerian. I walk outside every day. I’ve gone shopping with friends in busy cities all day. I’ve driven my car for hours to a knitters’ party and back again. Twice in one week! I take a shower whenever I want. This is all very novel.

I still take my horizontal rest every day, 45 minutes after lunch. It’s the only time my intestines gurgle = work. I still take stomach aids (HCL). I take time to smell the roses. I try not to think about my body or the illness. I stop any worrying by actively intervening and directing my focus on another subject (knitting problems are always good).
I found I can do with less Hydrocortisone, as long as I remember to take my Progesterone Cream throughout the day.

I’m stumped that I get my period even when on the Progesterone daily. I take it every day, including the eve of my period and its first days and it happens anyway. Normally and healthy as …. a normal and healthy person. I feel good too. No PMS, just the littlest of cramping. The theory is that this HRT (Hormone Replacement Therapy) covers my base levels. That is has nothing to do with female cycles. Since doing this my body is at ease, both at nights and during the day. (HRT needs to be with bio-identical hormones. None of these progestins, only real Progesterone will do. In Europe Utrogestan is the brand you need, 100 mcg per day. It’s a generic drug which means your doctor has not had it actively promoted to him/her. But it’s out there. Get it.)

Right now I’m a bit intense and hyper, probably on too much vit D and cortisol. Or too much chocolate. What can I say, it’s a work in progress, a balance I need to find.
But it feels like I’ve figured this out finally and I’m on my way to better health.

It will take years. That’s ok, I’m not in a hurry. It took me years to get ill so that’s fair. And I’ll have to learn to be healthy again anyway: how does one fill a day? What does one chose to do and what not to do? How did it feel when the body was buzzing and fluent and ready to run and jump and cheer?
And: how do I keep a calm pace and enjoy happiness, every day, without feeling the need to give an account of it? To document it? To justify my existence?
I’ll learn in time.

THIS BLOG
In the mean time I hope to stop talking about CFS on this blog. I want to talk art. Illustration. Stopping the manure plant. Share original sleeping Beauty stories. Weird things my cat does. Things that interest me. Things I enjoy.

Here’s to high hopes!

pic by Andreas Krappweis

PS
a smart person over at phoenixrising.me informed me of existing links between hyperglycemia, hyperinsulin, insulin resistance, vit D and progesterone. I didn’t know but it all ties in beautifully. These enhance each other’s working.

I was diagnosed with hyperglycemia back in 2004 and have had erratic blood sugars all through 2004-2008. Only a ketonic diet has cured me of those and it wasn’t untill a few weeks back that it all started to come together and add up.

Now that I supplement Progesterone every evening, including when I have my period, ánd vit D ánd have level blood sugar ánd keep calm at night with hydrocortison ánd aid digestion with HCL ánd practice a Happy Go Lucky attitude it seems I’ve stopped the continuous stress reaction in my body. The Fight or Flight response.

I’m on my way to better health, I’m already suddenly on a 55% level (compared to 40% level all through 2013).

started Gupta Amygdala retraining

Today I started the Gupta Amygdala retraining.

It may look like mumbo jumbo another nlp guru life coach praying on gullible people but it’s not. It’s a very clear approach of a physical system.
It makes sense to me as an engineer and it fits my own research and theories into CFS and my own case in particular.

My (para)sympathethic nervous system not feeling safe is something I’ve identified as one of the factors in my illness years ago.
I had some influence on it by becoming aware of it and by having some rituals performed (the subconscious lóves rituals) but it has not made me feel fully safe and therefor recover fully. My own improvements go slow because it’s hard to design a program and follow it at the same time. So why not follow a program some other CFSer has made? Ashok Gupta had CFS, hypothesized about it, tried things out, found what worked and made it into a sound structure.

For the next six months I’ll be doing the program every day. And on Nov 5 I’ll be having a New Me Party, I guess. I’m buying into this:

I just watched the introduction/first session and it all looks good. It fits very well with my mental approach of this illness. I’ve already been doing most of this his way, it seems. Good.

The only thing new to me is recording negative thoughts in order to show the mind that they are noticed and noted. No need to repeat them, thusly.

As the way my CNS is callibrated is only part;y cause of my illness I foresee my recovery leading to a new life, different from the one I was persueing when I fell ill. Actually, when I’ve recovered, my life will not be very different from the one I lead now, only without the fatigue.
I’ll still supplement Progesterone. I’ll still have to work around certain DNA-mutations and pacing and calm happiness will be essential building blocks of my day. As is curbing my ambition and definition of a life well spend.

Imagining my life how it will look when I’m healed does not have the things I thought I wanted before: wild parties, stamina of a 17 year old, loud exciting things happening or being rich/famous/having my own wiki-entry.

Instead there’s: having a day out with my knitter friends, visiting a sheep or yarn event and laughing a lot.
and: going on a bicycle ride and stopping somewhere to have an ice cream.
Making love, with my husband, in our own bed, on just a regular Tuesday.
Hiking through nature together. Going on a kayak tour. Visiting Norway…
Visiting a spinning group in the evening and driving there by car.

Little things. Big things. Enjoyable things. Mostly that: enjoyable things. Enjoying my body and my friendships. Just being alive.

a dream I refuse to participate in

In my dream last night people were suspiciously holding me up on my way out of the supermarket. It was as if my head wasn’t done yet thinking up the street and the storyline and it was stalling me.

I refused to enable this dream.

So I turned towards the produce aisle
and crawled among the apples.

pic by sheridanck
There. Make a storyline out of that, dream master!

in other sleep related news:
1. the doctor’s office forgot to send a fax to the sleep clinic two months ago and my request wasn’t processed. I discovered this last week and fixed it but have been waiting for naught for months now.
All the while having bad sleep.
Tomorrow I’ll ring the clinic, check that they did get the paperwork. Then it’s a three month waiting period and then I can go and have a sleep study.

2. while I do lie awake now again every night I am waking up better rested. After my hour and a half insomnia I take a morsel of Hydrocortisone and this makes my body relax and allows for two hours good sleep. Instead of the broken snooze I used to have.

I have two possible explanations for this: one is that the cortisol dampens an allergic reaction or CNS alarm that otherwise keeps me from sleeping. This could be something lung related or throat related or gut related as these three areas give me pain/trouble at night.
Or this cortisol covers some of the usual awake response in cortisol levels, making me not dip too low.
Either way: I wake up feeling not too bad and I do not have to wait 45 minutes to come from a very very bad place.

I have better stamina during the day, presumably because of this. I also cover my cortisol and progesterone needs during the day better. (I now take 100 mcg of Progesterone every night. It doesn’t help me sleep -no allopregnanolone for me- but it does seem to cover my base line need for the hormone better)

Because of better stamina I try to be more physical active during the day. Having just spend 2 weeks in the city I’ve been walking and walking and showering and cooking. Doing multiple things on single days.
Physical activity is the best way to get hormone levels in flux and in balance so I’m really pleased.

I’ve had the opportunity and stamina to meet various knitter friends during these weeks and we had lovely cups of tea and chats and wool and spindle fondling. This makes me wildly happy.
Wild happiness is the best companion for a chronic illness.

PS
taking 50 mcg of vit D3 also helps. It really does. Never ever ever do I want to go too low on vit D again.