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… )

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!


Ain’t this grand, I have a cold!

The sniffles. A snotneus. Inflamed throat. Just the common cold.

Haven’t gotten one for years, what with my immune system all in harms through lack of soothing cortisol levels. Used to get them all the time before I got Adrenal Fatigue.

Now I’m even more confused than usual about how to get through a day healthily.

My body clearly is under extra stress now so I should take more hydrocortisone, right? But more cortisol will dampen the imune system more, crippling its ability to fight this cold. The third side of the coin is that I am under extra stress to be in optimum health PRONTO because we’ve planned a family trip and I’m not well enough, even without the cold.

I feel stupid. Because there’s no clear strategy to be decided upon. And the more I stress the more vulnerable I get.

In the mean time I’ve been waken up from bodily stress after only 3 hours of sleep for five nights in a row now. (normally I get five with perhaps another two hours later in the night). Going that long on that few hours of sleep isn’t good. And it impairs my thinking even more.

One thing it does make clear is that I need that cortisol. I now take it at night, when I wake up in that fit of sweat, coughs and sniffles. It takes two hours for my body to calm down, I aid it with progesteron and hydrocortison because the first few nights taught me that without it my body will not calm down. Or have intestine motility.

It’s a strange experience to get to a calm place by taking hydrocortisone… An activating hormone. Calm enough to perhaps doze off for another hour when morning comes. Calm enough to tend to other bodily functions such as digestion. Relaxed muscles.

But is it a calm from rescuing the body from a shortage of cortisol or a calm from oppressing the imune system andthusly disabling the fight it needs to fight?

I really am without a clue.

being a Copperhead….

Taking Zinc releases excess Copper into the bloodstream. Or: already free floating Copper cannot bind to receptors because Zinc is wrestling it for them. This causes Copper toxidity symptoms: madness, fatigue, liver pain. Caused by skewed brain chemistry, an overtaxed body, detoxifying efforts. Copper is toxic in high doses. As are all things.

But Copper is invigorating also. There’s something like ‘a copperhead’, a type of person that shows behaviour coherent to high levels of Copper. As I am shedding the last of this unexpected Copper overload my Copper induced fatigue has now gone and I am riding the Copperhead wave: my mind races, I’m thinking a 100 grand things at once, I’m witty, full of plans. No time for sleep, I’m a genius! (I also exhibit behaviour my friends more readily recognize as autistic.)

you see, Copper is like cafeïne. It pokes around in the neuro transmitters. Altering who you think you are. Just like estrogen does. And MSG. And LSD. And Nicotine. And sugar. (how about their antagonists? The stuffs that sooths the mind such as Zinc, Magnesium, Progesterone, kittens. Do they too alter who I think I am? a question for another day, when I’m not running around in my own head!)

Since the treats of ‘a copperhead’ pretty much describe how people know me I may have had high Copper levels all my life… I do know I’ve had low Zinc for years.

And as the symptoms this excess Copper gave me this week look ridiculously like my symptoms as they occured from 2009 untill 2011 I wonder if Adrenal Fatigue is rooted in high levels of Copper.

hmmm, I wonder…

PS: here’s what happened to me for the past 7 days:

Took the Zinc pills (Biotics, 23 mg) for 3 days in a row. This released surplus Copper I had stored in all nooks and crannies inside. Copper floated through my blood, poisoning my tissues and my brain. Basically I was thrown back three years healthwise and was severely brain fogged, mentally impaired (PMS to the extreme, not able to make decisions or even simple choices) and extremely fatigued. Laid on the couch, had only two spoons left for a day.

‘Luckily’ it also brought back my cortisol peak in the middle of the night. After 5 hours of sleep I awake with a racing mind (and a body craving more sleep). The peak enabled me to surf extensive on what was happening. I found out about the Zink releasing the Copper. I found a lot of Adrenal Fatigue patients who have experienced this same reaction. They all listed the same symtoms. People warned that this reaction will cause people to stop with the Zinc pills. It’s what I did, a few years ago.

But really, we shouldn’t. We should shed that excess Copper because even stored in nooks and crannies it is not good to have. I suspect I may never recover to an acceptable level of health if it’s still there. There needs to be a healthy balance between the Zinc and the Copper. So I set my mind to detoxing in the near future. But not in the way it was going on now. I never want to go back to how I was two or three years ago!

I was fairly scared I had already undone the good work because I felt utterly rotten. But I decided to give it some time. I  stopped all Zinc, went back to absolute healthy basics in foods and activity and wanted to help my body to get rid of the Copper floating around now as much as possible. I laid on the couch. Took my cortisone and progesterone. Cheered on my liver. Took a bit of fibery meat to add some gristle to the digestion track. Took 1000mg of vit.C. And I drank lots of nettle tea. I have one brand (Jacob Hooy) that agrees with me very well. Better than other brands. (You just have to find out what works for your body. Without letting your mind run interference or telling you what should be working. I’m not arguing with my body anymore.)

After three days of despair and fatigue I slowly started to feel a bit better. The fatigue was still there but during the day I now felt more like myself, more cheerful. But in the evening the doom and gloom would start coming in again. On the fifth day I could take a shower. On the sixth day I smelled awful (must be waste leaving my body). I still wake every night and this is exhausting during the day. I’m now where I was a year ago, I think.

I am VERY PLEASED to notice that my body recuperates. And so fast too! It only took 7 days. It was a scary episode. The despair was so black…. The disappointment with being sick and canceling nice meetings was heart breaking. The grieve over my brother was scary. But that all has passed now. I’m back to being fairly optimistic. Still brittle though. The wind outside tires me, I’m wearing earplugs all the time, I can only knit simple knit stitches. And I have not taken a second shower. But I’m here again. Found myself a new puzzle to solve for distracting my racing mind, as you’ve seen in my previous post. (I’m not thinking about writing, jobs or bacteria at the moment. It would make me cry. Ambition has creeped in there you see.)

I now feel I can take Zinc in a controlled way and shed the excess Copper. As a matter of fact, I took 5 mg of Zinc today. Even though I’m still hyper from the previous pills. I still wake up every night.

There’s an anomaly in that pattern, btw.

So normally it goes like this:

  1. go to bed, fall asleep as soon as you smell the pillow (ew! it’s just figure of speeeeech)
  2. wake up after five hours
  3. lie awake for an hour and a half, surf.
  4. get drowsy again and sleep for another 2 hours
  5. wake up groggy, take hydrocortisone
  6. wait for hydrocortisone to kick in (45 minutes) before getting up

only that’s not happening!

it now goes like this:

  1. go to bed, fall asleep as soon as you smell the pillow (ew! it’s just figure of speeeeech)
  2. wake up after five hours
  3. lie awake for an hour and a half, surf.
  4. get drowsy again, put the dimmed light out, close eyes……
  5. after 30 minutes decide you’d rather read some more than wait for sleep to come
  6. after another hour of reading decide the night is lost and take hydrocortisone to start the day
  7. wait  for hydrocortisone to kick in…
  8. in 30 minutes fall fast asleep!
  9. wake two hours later, remarkably refreshed.


I’ve got two guesses working theories:

1. my body is overstressed by something (like free floating Copper) and is producing cortisol. This wakes me up and as the stress continues so does the cortisol. As I have a shortage of natural cortisol this induces stress and the demand for more cortisol which my body does not have. The moment I insert hydrocortisone into my system there is enough cortisol to meet the demand and the system relaxes. I fall asleep. (HPA-axis)

2. it’s like an insuline reaction. It does feel like one (meaning I cannot fight it. Well, I could if I wanted too but I really don’t want to. I want to go to sleeeeep. It feels like an addict reaction. I even get a happy smile on my face as I give in.) The hydrocortison directs all kinds of stuffs (sugar?) from the bloodstream into my cells, much like insuline does, and I fall asleep because of a lack of energy/stimulant. Untill the reaction has subsided and some energy is hustled back into the bloodstream and my brain. I awake and because I still have a bit of cortisol help from the pills I don’t feel too shabby.

1. is good. 2. is very bad. I am worried. But I cannot think my way out of this at the moment because I’m busy being a genius! Also, I forget to go to the bathroom all the time.

…two long posts in two days…is my hyper showing? To be clear: only my mind is hyper, my body is pretty fatigued.

Oh, and I’m not saying I’m autistic. I know it’s all fashionable to be autistic and we do lack a quirky female tv-detective with autistic treats but no, I am not autistic. (House, Sherlock, Elementary, Hannibal…wouldn’t it be interesting to see how a real autist would solve a murder case? I bet parents of an autistic could paint a good picture of how that would pan out. Not a viewing hit amongst the masses, I’m guessing)

photo credits for the copper heads: Michael Grunow, Sam Rusling, Penny Mathews and Nathan Bauer