On the Way.

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


pic by David Ritter

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

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

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


pic by Alison Taylor

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

pic by Enrica Bressan

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

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


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

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

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


pic by Alan Witikoski awitikoski

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

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

pic by Michael & Christa Richert

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

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

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

 

 

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

pic by Jean-Paul Brouard

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Settling Dust.

I’ve settled down a bit.

10 days ago was the first day that I found peace with -once again- being able to only do one thing per day. I was “a good little patient” once again. Resigned to spend my day keeping my priorities in check:

  1. safety (check gas, check locks, check where you walk, no multi-tasking)
  2. food (enough, healthy, easily digestable)
  3. hormonal balance (progesteron, cortisol, no stress, managing weird brain chemistry)
  4. everything else

I was plenty busy keeping the first three in check. Anything else (a hobby, a blog post, social meeting, working, keeping the house tidy, being presentable to the rest of the world) only came about if there was time and energy left. There were not many days with either.

But 10 days ago things changed. I had settled. My body had grown accustumed to the new regime and had -hopefully- shed some of the worst heavy metals. Especially the Zinc that brought about Copper detoxification (which looks remarkably like ME or Chronical Fatigue with a big side of PMS)was doing its job.

Which was when I decided to up my dosage of Zinc to speed up the Copper shedding….  The day I did that was awful! I was ridiculously tired, ridiculously wired and totally hormonal. To which no progesteron cream helped. Which is a sign that this was pure brain chemistry running wild. I cried and cried about stupid things and silly things. I was desperate. All the while knowing it must be Copper excess. But knowing something doesn’t make you feel different. Not with chemicals doing pinball in the brain.

In the end all I could do was cry on my husbands shoulder, drink lots of water and go to bed early to leave this day behind me.
Saturday I was still a bit shaky. Sunday I was at peace again.

It is a very tricky process. But I feel lucky that each time it is confirmed: as soon as my body manages to get rid of the waste, I feel good again. I feel very fortunate that my recuperation time has sped up too. One, two days. No longer weeks or months like it was the last few years.

This Methyl-B12, Folinic Acid, Zinc, vit D, Lithium etc. are really working.

Then last week a little miracle happened. I was back in the cabin after a few tiresome days in the city. I drove myself (and the cat) to and from the city which was a victory all by itself. The plan was to rest hard because there was a birthday party I was looking forward too and after that another busy week in the city with a wedding party as its finale.

But something was bugging me: in the fields near me they are planning to build a manure-factory. A big installation that converts all kinds of manure into some usable gas. It’s one of the biggest plants in Europe that they are planning. 50 trucks of manure will come by my house every day, the stuff has to be transferred into the plant, has to be treated. It’s A Big Thing. With lots of noise and odour emission.

The process is in the planning stages. The first stage has been concluded: the permission has already been granted. Now is the final stage where people can object in court and that stage is nearly finished. The last day to file any claim was Wednesday.

I didn’t know they were planning this thing as I don’t follow the news because it stresses my system too much. And none of the neighbours had thought to inform me. It’s a strange dynamic when something like this happened. Everybody feels alone, on their own. And inadequate to battle something this big.

I only found out about the plant the week before. Of course I was stressed by this but I too had resigned to fate, I had chosen to be a supportive neighbour. Farmers would be able to get rid of their manure. It’s a piece of technologie. I could learn to appreciate it. Especially when given no choice.

pic by Nino Satria

That Wednesday I woke up with a dilemma. Today was the last day for an objection to be filed. I have a background in both planning and engineering and I could study the technical and policy reports and see if there was something there to object to. Even though I had never done such it thing. But it would mean a busy day, without the rest. I could get ill. Jeopardy the birthday, the week in the city, the wedding. There was no garantee for succes.

My husband advised me to stay out of it. “Choose your health.” This was the responsible thing to do and my inclination. Although I find it very difficult to let a chance pass I have learned to do so. It only stings until you say the word. Once you’ve made the decision there’s disappointment to deal with but no longer the strain of coulda-shoulda-woulda.

Just to get a little extra confirmation I posted the situation on Ravelry.com where my fellow knitters reside. They know me. They have seen me crawl my way back to better health, they know how fragile it still is.

To my utter surprise they said: “Go for it.” Unanimously. “Don’t hold back, go do your research and file a claim. You are the one that can do this.”

I didn’t do as they said per se but their views did open up the possibility in my head to spend one or two hours on the material. See if something’s there. If there is, proceed. If there is not, rest. (strangely enough I had not thought of this approach before. I was all GO/NO GO)

Anyway, that’s what I did. I ploughed through the county policies. Devoured the technical noise reports. Chewed on the technical odour testings. And nearly choked. There was something verrrrry weird there!

I checked and checked and could not believe it but it was 100% true: the technical research that had facilitated the county to stretch the legal odour limits which was necessary for the plant to be allowed to operate and douche 1km2 with its stench was solely based on ….. four people….. sniffing three odour samples. Resulting in one number (10,9) that was used in all the legal documents and policies as prove that the plant would not smell that bad at all. Research had proven it!

Yes.

Research had indeed proven it.

10,9 was the mean in a range from 2,2 to 22,5. Anything under 5 means people cannot stand the smell and no one should be subjected to it. Let alone to use this number in areas where people live. By taking the mean all those values under 5 had been conveniently disregarded.

4 people. One of them must have had a stuffed nose because there were some weird results in the spread of their findings.

They each sniffed 3 samples. Two smelled terrible, as all four people seemed to agree, even the one person with the stuffed nose. Numbers ran from 2,2 to 8,6. The third sample was odourless so it seemed because it got much higher numbers and that one person even gave it 22,5.

This was the sample that dragged the mean from below 5 up to 10,9 and gave the council and the county a political stick to force this plant upon us with. This was not a sound use of either math or the sniffing results.

I was thrilled! And exhausted. By now it was midday. I had not rested. I still had hours of work to mold this knowledge into a legal document. I took a little lie down. After that I called one of the neighbours whose number I found on a document from the previous stage. He was so friendly! He encouraged me and I found a second wind.

I wrote the paper. It’s not 100% clear, it has spelling mistakes, it has some internet-generation language in it. Frivolity even. I lost valuable time and health trying to find my way through the administrative process (where do I file, how do I file).

In the end I had a few minutes left, no time to proofread anymore, I pressed SEND. I was exhilarated!

I called more neighbours. I emailed the action committee of whose existence I had just learned. I wrote my knitter friends. Called my husband. Everybody was cheering. It was such a rush! I had found a gem, deeply hidden in the technical reports, and now there’s a serious change the judge will revoke the planning permission. Who would have thought that in that little patch of woodland, there was a little engineer that could?

pic Mateusz Stachowski

It took another two hours for my heart to stop pounding and me settling for the night.

The next day I drove myself to the birthdayparty and had a lovely day. I had my priorities for the day all checked: safety, food, balance. One hour into the party I did discover I was wearing my dress inside out but that’s a thing that is firmly placed in priority bullet number four: everything else. My friends didn’t mind. Neither should I. (of course I do! I felt stupid. And well on my way to becoming that weird little old lady…)

pic by Alan Eno

All in all this has given me an appetite. I really had fun, studying those reports. Writing their conclusions in my own words. I never told you, did I? That my Master thesis was a design with a Philosophical treaty about how planning engineers should approach the different parties ethically. And which language they should use (the language the other party understands, not the jargon one is used to use oneself)

It was a bad thesis anyway, filled with young cockiness. But it does illustrate my love for understanding something technical and rewording it in a language the reader understands.

I’m sure this experience and the joy I got from it will lead me somewhere and you will recognize it in my future and can say: “I knew it!”  :)

All in all I did a full days work. And I LOVED it.

Now I’ve even started dreaming about having a real job for real. One of the first warnings that comes to mind is that I should do what I want, not what I can. So making cat illustrations should be a more likely choice of direction than consulting for people who want to take on planning permissions. Please try and remember, Anna.

Well, isn’t that a miracle week?

pic by C. Graat

here now a few tidbits I’ve been meaning to share:

– I’ve bought a car. For me. It has brought me out of my isolation. I’m no longer trapped in that piece of woodland. I’m no longer dependent on the weekly trips to and from the city my husband makes. I can go when I want to. driving itself it still very tiresome but the idea that I can really lifts my spirits. I put an emergency knitting project into the glove box.

– driving the car in the Summer makes me think of my mother’s mother a lot. I admire her.

– I still mourn my grandmother very much. I am annoyed by how this surprises me. And how familiar these feelings are. And so unfamiliar too. I am deeply sad by losing this connection to the women who make up my family.

– each day is a struggle healthwise. But it’s no longer an uphill battle.

– my GP was delighted by the results and course I presented to him. I got warm handshakes and a request for help for one of his other patients. I was so relieved he understood everything I said. To him, biochemical talk is normal.

– Only last week I thought about the french numbers for 7,8,9 and 10: sept, huit, neuve, dice. They align with the months: Septembre, Ottobre, Novembre and Decembre. Too much similarity to be a co-incidence! Which would mean they are meant to be month nr. 7,8,9 and 10. Not 9,10,11 and 12.

A little googlygoogly affirms this. Roman years started with March. There you go. I thought I had an interesting thought but it was nowhere unique.

– Should I tell you about my thought about penstrokes and numbers or would that be too obvious too? See, Japanese numbers 1,2 and 3 are made out of one, two, three penstrokes. I think our Western numbers are too. One is a vertical stroke. Two is two horizontal strokes but someone forgot to lift their pen/stift from the paper/clay. Three is three horizontal strokes, again dragging your pen/stift.

I could go on, I’ve thought it through for quite a lot of numbers. Four is supposed to be a little square box. It’s botched.  Five could be a box too (or two vertical strokes). Six is a circle. Zeven is a long vertical stroke with a strike through. And on.

– I’ve found a way to write and not get stuck: do it in blog form. Perhaps I shall start a blog about the bacteria. I have all the information and the fascination. Weirdly enough I might have to wait until Novembre again. It seems my interests follow the seasons too. Just like my preference of colours.

– I am sewing couture dresses for myself. I’m teaching myself and have now finished two (practise) dresses. They are acceptable. And their fit is amazing. Having a nice dress, handmade and customfit, is a very pleasant luxury! I wear it with glee in the city. I wear it in the house, sitting up straight and feeling good.

– I’m really bored with how long everything takes and how little I can do. In my mind I have sewn five dresses already, in reality I have to wait for the day that I can sit up one hour at a time and have my first priority-ducks in a row before I can get anything fun done.

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