Managing Adrenal Insufficiency

So, now that my ME is under control by applying the things I learned from Reverse Therapy (RT) there remains the adrenal issue.

The ME is gone, I’m in recovery. The past three months I no longer had the Wired & Tired and general “I’m so dead why am I still breathing?” feelings that go with ME.
But I did have the consistent nausea, especially in the evenings, and I did have to pace myself severely. I even had an adrenal slip up on March the 5th. When I was in a new surroundings, was too cold, had been upright for 5 hours on end and was too stressed.
I started crying uncontrollably which is an alarm signal from my body that I need to make it safe asap or otherwise an adrenal crisis is in the works. It’s a scary route.

I cried. Took my pills. Took a long lie down in the car. Then drove home and went to bed. Took three days of rest.

Me resting in my car. I was wearing my hand felted princess dress and handknit socks. You should always be warm. And being wrapped in wool gives you a feeling of safety.

I’m not too good in the RT thing yet, I have to practice over and over again to relax, feel safe, and calm down the nervous system. But I’m well enough now to address the adrenal thing.

That’s why I had a battery of blood tests done, talked to my GP and had a consultancy with Adrenal expert Dusty Hardman from AddisonsSupport.com.

Dusty is not a doctor and will not make any decisions for you. But to the educated patient she’s a welcome sparring partner with lots of experience and knowledge. She herself has Addison’s and runs marathons -even wild ones, which lasts days and days- and researches Addisons’ medical info.

The blood tests were: hormones, electrolytes and more hormones.
My primary goal was, for both GP and Dusty, to find out whether I was wrecking things the way I’ve been supplying Hydrocortison until now. Secondary was to learn how to improve my protocol.

The risks of long term corticosteroid use involve loss of bone density; getting too high eye ball pressure and some other scary things. There’s also suppression of residue adrenal function, if you take too much.
When your adrenals cannot produce cortisol when you need it, say in an emergency like a trauma or dehydration, you run the risk of death. Quite quickly too.

As Pathology Personified illustrates it:

when vomiting twice, call the emergency services. Addisonian crisis is life threatening.

When vomiting twice, call the emergency services. Addisonian crisis is life threatening.

Addisonian Crisis: Medical emergency
14. Severe vomitting
15. Severe chest, abdominal pains
16. Back pain
17. Severe diarrhea
18. Syncope, fainting

Refs: 1-13 Merck Manual 18th Ed (2006); 1-4 Souhami & Moxham ‘Textbook of Medicine’ 4th ed (2002); 1,2,8,13 Goodman & Snyder ‘Differential Diagnosis for Physical Therapists’ 4th Ed (2007); 1-15, 12 Gray & Toghill ‘Symptoms & Signs of Clinical Medicine’ (2001); 1-3,7,14,15,18 Ballinger & Patchett ‘Saunders Pocket Essentials of Clinical Medicine’ 3rd Ed (2004)

But I haven’t had an Addisonian crisis yet. I’m still in the process of determining how my system is doing.

The electrolytes showed that calcium-magnesium was ok-ish but low on magnesium. Natrium-kalium was perfect. My kidneys are troopers!
I’m having a bone density scan done soon (DEXA) to tell me more about the bone density. In the mean time I have started to do weight bearing exercises. It’s the only thing left to do at my age.

Don’t go taking calcium enriched supplements!
You’ll only put your bone-cells into overdrive and exhaust them before you’re old. Have you never wondered why the country that drinks the most milk, the Netherlands, has the highest portion of osteoporosis? Calcium from dairy is bad for you. Lies:

This is all lies!
Don’t eat so much calcium. At least fill up on Magnesium if you do take some calcium. It’s such an easy and unlogical assumption to think that because your bone is brittle and it’s made from calcium you need to take more calcium.

My GP taught me about a complicating factor: that the bone cells needs vit D receptors and these decline with age. You should have maximum receptors at age 30 because after that they dwindle and cannot help your brittle ass enough.
I asked whether I was perhaps lowering my amount of vit D receptors with the large amount of vit D I take. Just like you lower the amount of Progesteron receptors when readily supplementing. He found it an intelligent question.

The eye-thing has been checked by an optometrist and the eyeball pressure will be checked in two weeks by an opthmologist.

The hormone ACTH is the hormone the brain releases to get the adrenals to produce cortisol. My value is 19 in a reference scale running from 0 to 50.
With my supplementation of 20 mg of Hydrocortison my brain is still asking my adrenals to put out more cortisol. Hence: my brain has not shut down my adrenals. And: my adrenals/supplementation do not provide my body with enough cortisol.

Not enough cortisol also explains my residu symptoms:
– nausea (not enough stomach acidity. Not enough HCL in the world to help with this)
– not able to make choices. See last posts. Who’d knew this was a symptom?!
– crying inappropriately
– dropping blood pressure
– losing words when tired. I especially lose my Dutch nouns and verbs. English ones pop up instead.
These are all adrenal symptoms.

My blood work showed I don’t supplement cortisol enough. There seems to be no damage with the supplementing I’ve done so far.

Talking to Dusty and reading everything on her site has given me a new look towards Addison’s. Doctors still know very little about it. And what they know they haven’t thought through very well it seems. They are so scared of suppressing adrenal function that they rather have people on too low a dose, causing them to have a poor quality of life.
Whenever someone needs an acute higher dose they linger to give it to them, wrecking their body unneccessarily.

I have educated myself and have started a trial of higher cortisol replacement. I’ve upped my dose, with blessing from my GP. And boy, do I feel alive!

pic by St.Mattox

Suddenly the quality of my life has shot up. I’m nowhere where a healthy person is, who runs after the children or doesn’t think twice about getting some groceries before cooking dinner.
But I can take a shower when I feel like it. Not make it the one thing I do on a day.
I’ve just been outside, puttering about in the garden. It’s a gorgeous Spring day out there! I came inside and sat down to write this post, I didn’t have to lie down first.

I’m now on 25 mg HC per day. And I’m going to up it to 30 mc because over the past few days I needed to stress dose each and every day because one day we were taking a drive of 1.5 hours. The next day the optometrist was about to put painful drops in my eyes which would annoy my body for three days. The day after I had stomach pains. And today I worked in the garden.

These are all activities/events that require a little bit of cortisol extra.

Yesterday I was hormonal. I was cranky, weepy and aggressive. Looking at the calendar I saw it was ovulation day. I never have these symptoms on this day. At best I can muster up a little bit of arousal but overal I’m a very tame woman.

With the upped HC I am pouring extra hormones into the adrenal hormone cascade. Less of my Progesteron is needed to make cortisol and it’s probable that it flows into Estrogen and Testosteron production. (Test. was low in the blood test btw)

I took extra Progesteron to counter it. Problem solved.

This HRT is all a delicate dance. Luckily I supplement physiological doses so anything I overdo or underdo leaves the system within a day. And I’ve danced with my Progesteron and Estrogen for a few years now, all the HRT things I learned from that I get to apply to cortisol replacement.

Lots of things happening, in just these 5 days since my trial started. For example I also noticed that my thyroid is picking up. I had it tested too and it is within range but not optimal. Which explain the residu thyroid symptoms I had:
– poor digestion
– poor intestines motility
– hair loss

With only a few days of extra cortisol my thyroid is feeling more comfortable: no hair loss and a more warm body. No more cold from the bones!
I do need to take my Iodium/Kelp supplement every day though.

Kelp by Donna Adenine

Adrenals and Thyroids are the battery and the gas pedal of the body. I’m revving and going through my minerals and co-factors faster.
I now take diligently daily: Zinc, Magnesium, Selenium, Kelp, vit D and Q10. If I forget any of these the system bucks.

I also take Lithium (the mineral, not the drug) and Progesteron (and Zinc to keep an even brain chemistry.

The action plan I wrote out with Dusty:
1. take two weeks to figure out correct HC dosage.
2. in two weeks test to see if Florinef is needed. This helps blood pressure. The test to take is: Renin, at 8 in the morning, sober without breakfast and without having gobbled salt the previous day.
3. in two months test Thyroid values. They should be better than they are now. If not supplement.
4. around that time: test sex hormones. They should be ideal. If not I should supplement. We’re talking DHEAs, Estrogen, Progesteron and Testosteron. Testosteron for females should be a 0.2% solution.
5. in 6 months time retest the whole shebang as these are the values I need to monitor my supplementing and my well being. DHEAs, Renin, electrolytes, FREE T3, FREE T4, Total and Free Testosterone, Progesterone. All of these things need to be supplemented if deficient.
6. Repeat this monitoring battery of tests every 6 months.

Also. Now that I’m probably on full replacement of the adrenal cortisol, I’m now in danger of my life should anything happen to me. Addisonian crisis.
Because of this I will ask my GP for an emergency injection kit for 100 ml of Solu-Cortef. It’s a cortisol you inject into a muscle in case of adrenal crisis. It’s pretty much like an epi-pen and it will save my life in the same fashion an epi-pen saves someone with sever allergies..

I’ve also ordered two wristband tags that state my needs. I hope, should I ever end up unconscious or wounded, a smart bystander will find me, read the tag and do what’s needed.
In my case: reach into my bra and feed me the pills you find there. Then call the emergency services.
Or give me the shot.

OMG feeling alive again is serious business.

by Mark Aplet

two more things to tell you:

  1. the court case about the manure plant was lost. Don’t know how that happened, I had such solid and scientific arguments. I guess we lost to political agenda and biases. I will now learn to live with a manure plant next to my cabin. But I did manage to write three engineer rapports last year, when I was still ill from ME and adrenal issues. That’s something to be proud of.
  2. I still wake up after 5 hours of sleep. I can’t find a consistent factor. But the stress system is involved, that I know. I’m now looking into problems with the intestines, specifically the Ileocecal valve, which lies between the small and large intestine. This bit hurts, at night. And I have circled towards a dietary habit that is THE diet for problems with the valve. Two coincidences that prompt me to look into this ileocecal valve.

How come I end up talking poo to you again? Twice!

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Reverse Therapy: recovering from ME/CFS

Had my first session last week, a Skype session with therapist Lyn White in the UK. This works.
It’s the way to keep the body (autonomic nervous system) out of Fight or Flight. I’m no longer wired. Instead I’m relaxed, chill, happy. Without pain, without tiredness.

I’ve just spend four days on a road trip and a midwinter wool fair. First day I drove for hours and hours. Second day I stood on my feet in a wool booth and talked to people for 7 hours. Third day the same. Fourth day drove back. All the time was spend with a friend, I was seldom alone.

No crash, no pain. No worries, no strain.
This is unheard of.

I did have my usual insomnia (and then some due to mosquito bites) in the night but I performed wonderful all of the days nonetheless.
I was not overly sensitive to noises, smells or the presence of my friend.

Back home there has been no crash. There was tiredness, of course. There were bouts of head aches because of all the impressions and things I’d seen. A bit of a hoarse throat because of the unusual amounts of talking. My feet tingled.
But I’ve been so cheerful all these days! And the days after, here, back home.

Reverse Therapy and Mickel Therapy are what works for me.

I’m not going to talk about their medical opinions about what ME is. Just know that both therapies give a tool box to keep the nervous system calm.
And whatever their, mine or your own theory is about the relation between nervous system and ME/CFS, keeping the former calm helps to alleviate symptoms of the latter.

I am VERY GLAD to be back in the calm again. I had lost it when life stresses hit us in January/February of this year.
(I had found it in the course of the years I spend at the cabin, alone. Well fed, warm and finally without that stupid ambition. Once I did Gupta Amygdala Retraining I was without symptoms too but the calmness hadn’t ingrained. With Reverse Therapy it has.)

For the past few months I tried DIY Reverse Therapy, having read all the things that have been written about it and understanding its principles and its ideas. But it was not the right way. Having a coach is much more efficient. Because my twittering brain is always trying to keep on top of things it kept getting in the way of actually applying Reverse Therapy. A chatterbox in the head is precisely the thing the nervous system doesn’t need.

Long story short: a whole new world has opened up to me. I’m calm and am experiencing bouts of happyness from the very core of my bones. Symptoms are dwindling. I’m without worries. I had a wonderful weekend with my friend.
I’ve started dreaming about (and planning) holidays.

Reverse Therapy and Mickel Therapy are precisely the thing I need. On top of all the other things I’ve learned to do over the years to support my body:
– take vitamin D because of where I live on the globe
– take extra vit D because my receptors are wonky
– dabble in mB12
– keep levels up from minerals Zinc, Lithium, Magnesium, Molybdenum, Selenium and Iodium
– avoid cruciferous vegetables (onions, kale, garlic etc.)
– supplement hormones I lack (Progesteron, Cortisol)(all body identical in physiological doses)
– supplement Progesteron to counter Estrogen highs during the cycle
– avoid blood sugar spikes and stress and practise sleep (restriction) therapy to sleep through the night
– avoid foods difficult to digest (boiled egg whites, raw food, nuts, leafy vegetables)
– avoid foods that “feel bad” (vegetable oils, caffeine, sugars, fried foods, vanillin, commercial chicken and vegetables that never saw soil or sunlight)
– avoid tiresome people or learn how to deal with them without investing energy
– rest flat for one hour, one hour after the last bite
– eat small portions
– aid the acidity of the stomach with HCL
– aid the lymphatic system with stretching, yawning and lots of full fats (butter, coconut fat, fatty animal tissue)
– keep the nervous system relaxed (Reverse Therapy, doing fun things, be cheerful, having cups of tea, dancing in the living room, cuddling the cats)

What else?
With the cortisol pills and the managing of my own stress levels I can tune the immune system a bit and have it be extra vigilant at times when I’m surrounded by lots of “germy people”.
I have gotten only one cold since I fell ill in 2008. And that cold was when I was severely stressed because I wanted to go on a cross-Europe train tour. Extra stress = extra cortisol = suppressing of the immune system = invitation to opportunistic viruses and bacteria.

And finally: I’m a firm believer of practising Mental Hygiene. You are not obliged to think what you think. If what I think makes me feel bad (worry, disaster scenario, reliving bad memories, focusing on bad aspects) I can and I should correct myself.
Think of something else. Anything else. Think of ants. Think of blue things. Think of the fun thing that happened the other day. Go watch David Armand mime the lyrics of Queen’s Don’t Stop Me Now.
There is no thought police in my head, I am free to think about something else.

 

PS I’m listening to a Norwegian podcast. For the first time since I fell ill. I can now listen to Norwegian again without feeling sad :)

As a result I’ve just started thinking about visiting that country again too. I can’t say this feeling will stay. I can’t yet claim I am in recovery. But I sure am happy and healthy, right this minute.

Found my train of thought: intracellular parasites

I lost the plot in this post about theories of ME  but I found it again.
First I want to say: I’m dropping the “CFS” term. It’s too close related to adrenal problems and besides that people tend to think that fatigue is the main issue to be overcome. It’s a small step to then start talking about remedies that work somewhat for that other “fatigue illness”: depression. And before you know it laymen and experts alike are talking about having to increase exercise or do psychotherapy to heal from ME/CFS.

Neither depression nor ME is fixed by these two options. Especially exercise will make ME worse.

Well, let’s move on to the train of thought:

  1. body is an ecosystem
  2. we have numerous cohabitants on board (bacteria, virusses, worms and bugs).
  3. with some we co-exist to mutual benefit (mitochondria, gut bacteria). Some are parasites (rickettsia, legionella, EBV, HIV, tape worms).
  4. Parasites dwell in numerous places in the body (eyes, throat, intestines, lungs, blood, cells).
  5. let’s focus on intracellular parasites. These buggers live in human cells. Destroying them to get ahead. (malaria, HIV, Chlamydia, Lyme)
  6. These destructions have eerily familiar aspects of ME: incapacitating the vit D receptor; dismantling the mitochondria for spare parts; low T-cell count; immune system out of whack.
  7. some ME experts have success by giving patients long term anti-biotics. They now think ME is a disease of intracellular parasites (dr. De Meirleir, Marshall protocol, dr. Jadin)

I’m going to take a new fresh look at my health. Unravel the various aspects that coincide and then focus on the ME part.

I then might find it beneficial to have some tests to find out what bug is present in me. I’m sure there’s some. I’ve been bitten by ticks and fleas in my life and my ME onset was sudden and flu-like (a few weeks after visiting a lambing herd that turned out to have Q-fever).

Besides, nearly everybody has EBV.
My cat has had conjunctivitis for 6 months now and it’s the type that reacts to the anti-biotic for Rickettsia and Chlamydia Pneumonia. I’m sure I’ve been in touch with them.

I may go to dr. De Meirleir. He’s in Belgium. Only it’ll cost well over 3000 euro for the fist visit + lab tests. I’m not ready to pay that :(
After that he’ll propose long term anti-biotic courses. I’m not ready for that either.

I wonder if there are other ways to fight intracellular parasites. Perhaps change the environment they live in (the cells). Perhaps aid the immune system. I have no idea. For this I first need to learn more about intracellular parasites and how they live.

It’s a nice topic of research, to keep me occupied. I need such a topic because moodwise I’m not well and diverting troublesome energy to such a topic is a good habit.

 

New theories on ME/CFS

The body is an eco-system. I visualize it as the Great Barrier Reef, with all kinds of species crawling about and living in nooks and crannies.

 pic by Vincenzo Piazza

There’s all kinds of bacteria and virusses living about our bodies. The imune system picks out the obvious offenders but it’s still pretty much a Wild West scenario where bad boys run and hide and the killer T cells hunt them down. Remember that awesome little movie of that white bloodcell gunning for a lone bacterium?
That’s how they get them, one at the time.

Unless there’s a full invasion getting on, then the whole body response is needed and the place is set afire (fever) to exphixiate the culprits. With considerable damage to the furnishings but hey, the goal justifies the means.

Here now are 3 theories of ME/CFS building upon this image:

  1. infection makes it literally impossible for the ecosystem to function normally. This is every infectious illness you can think of. It hinders bodily processes. Solution = eradicate the infection.
  2. infection induces the body wide Sickness Behaviour Response not because it’s a body wide infection but because it bugs the very wiring that tells the brain to engage in the body wide response. This would probably be the Nervus Vagus, its cells infected by a particular invader and thus thinking the whole body is under attack. Solution = get rid of bugs OR block this signalling to the brain
  3. this constant battling against invaders tires and strains the system so much that the very stress of the situation hinders its function overall. Since the ecosystem cannot be rid of its occupants a solution could be to teach the system to learn to live with it without assigning stress to it. Probably on a less intense level of life then that’s advertised. Solution: stress management aimed at the CNS and its brain components in particular.

It’s also possible that infection occurs in a particular part of the body that induces the very symptoms of ME/CFS. One such part are the endothelial cells that line every blood vessel in the body.

….

I’ve lost my train of thought. grrr

here’s the research paper on infection of the Nervus Vagus in relation to ME/CFS: http://www.pdf-archive.com/2013/06/23/vanelzakker-vnih-cfs-in-press/vanelzakker-vnih-cfs-in-press.pdf

here’s the post on infection of the endothelial cells: http://forums.phoenixrising.me/index.php?threads/what-is-the-mechanism-of-fatigue.38556/#post-616737

 

 pic by Mark Morcom

 

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.

Monday: Spring, Art and Methylation

Today is Monday. I just went for my daily little walk and the air was soft. Spring! The birds were calling it too.
Suddenly I remember Spring and Summer. The smell. The joy of just being amidst green grass. Bugs flying about. How could I have forgotten that feeling?

It’s the same in the Fall. In Fall there’s that first day when suddenly you remember how it is to have cold in your body. Being cold. Somehow you forgot about it in Spring and Summer.

Today was that day for me: Spring! With that smell.

Today is Monday. Last Wednesday and Thursday I had switched to another pill for Methylation Cycle Protocol. Untill then I had been taking Methylcobalamine (mB12) and Folinic Acid. Both processed forms of the foods that are so good for you: vitamine B12 and Folate. Both of which I do not process well in my body cells due to mutations in my genes. (MTR and MTRR to be specific)(to be totally specific: I’m homozygous for MTR A2756G and for MTRR A669)

I had been taking 1200 mcg of mB12 and about 800 to 1200 mcg of folinic acid (the pill Leucovorin). This fired up my methylation cycle nicely. My cells suddenly started using “B12” and “Folate” and started detoxing.
On Wednesday I read about another form of already processed folate: Metafolin (brand). The nutriënt Folate goes through numerous steps before the cell is able to utilize it, about 12 of them. Folinic acid is the third step and Metafolin is the last. Making Metafolin the form easily absorbed.

So on Wednesday I took a pill that combined mB12 with Metafolin. I had already noticed I’m quite vulnerable to the folinic acid and thought I’d safe my body the trouble of converting it.
Thursday too: 1200 mcg of mB12 and 800 mcg Metafolin (this is pretty much the correct ratio although I think it’s empirical found, not theoretical)

Boy.
By Thursday evening I was stark raving mad. Very hormonal. Desperate. Tired of life. Convinced it was all to no good anyway. Convinced I had thrown it all away, that I was useless and that from here on it would only get worse. Life.
Luckily I know what this is. This is toxification of the brain because the body cannot process the toxins fast enough and/or there’s die-off. Here’s a good description of how it works.
I breathed through it, cognitively. I took extra Valerian, extra HCL and extra Progesterone.

On Friday I took a break from Methylation. I had that workshop Enamel the next day and wanted to rest up a little. During the day my good spirits returned. I got energy. I even withstood the bout of stress that the legal papers about the manure plant brought. Double Progesterone got me through the night.
On Saturday I took no Methylation. I did the workshop just fine. Was utterly tired afterwards and just about made it home.
On Sunday I took no Methylation protocol. I was soooo tired.

But a curious thing happened while on a break from Methylation. Art happened.
On Friday I studied online about enamelling. Found lots of art. Thought about them a bit.
On Saturday there was a piece of copper plate waiting for me to saw into a shape. This was possible because I was the only participant in the course, there was time for me to learn the techniques and deeper details. Usually they work on preshaped circles or squares. Now I got to saw.
Inspired by the workshop and having to make various pitstops on the drive home I got to think about shapes a lot ánd got to draw them on parking lots along the motor way.
Sunday I could do not much more than lay in my bed and surf and learn about enamel and think about shapes. About art! It all started humming! A lot of the old fascinations with shapes and contours and counter shapes came back. All the stuff that intrigued me when at the Art Academy. And before!

There was a small bout where I thought out a masterplan to become a professional enamelist.
But soon I realized this was one of those crazy, ambitious routes my mind takes when it wants control and assertance. (why this not english? you understand what I mean nonetheless, I hope)
So I shut down that train of thought and focussed on what ties this to my other fascinations: shapes, contours, countershapes, spaces. All my old friends.

I am ASTONISHED that this all came back to me yesterday. That it’s all still there.
It came together with the eagerness to explore. To sketch. To draw. To look. To explore with paint and fingers and scissors and colours.

Today is Monday. This morning I spend my golden hour thinking about shapes and sketching. I feel an artist again. I feel like me again.

But today is Monday. I have started Methylation Cycle Supplements again. I need to get rid of all the toxins that have built up in my body for decades. I have entered detox state again.
But at half the dose now. 500 mcg mB12 and 400 mcg Metafolin. (together with all the other nutriënts needed for this protocol: Mg, Mn, Se, I, Li, Zn, Mo)

I think this will kill the artist in me. No, not kill. Put to sleep. Wintersleep. Alive. But silent.
Soon I will enter brain fog again. Hormonal state even. Then all I can do is muddle through the day, eat my soup, take my supplements, take my walk and shed the toxins. Untill it goes better.
It will go slower at this lower dose. But I may be in a better mood.

All in all. Monday.
Spring is promised.
Artistry too.
If I can keep doing it slow, keep to two things a day, I will get there.

PS because I like it when everything makes sense I’m putting this link here, it explains why people with ME or Chronic Fatigue Syndrome need days (or weeks) to recuperate after a tiring day/event.
Especially the alinea below the middle called “Explanation of the Fatigue Problems in CFS Patients”. With all the talk about ATP.

For me recuperation time used to be three months. Then two weeks. Now two days. (6 if my gut health is involved, say with gluten)

By now it’s Monday afternoon and I can report that it seems my body has dealt with the detox of today. (I take my supplements in the morning, together with a very hearty breakfast brunch lunch). I feel the energy picking up. My brain is turning to art once again, I might do some reading. Who knows, another scribble?

5 year plan to heal from ME/CFS: year 1

I fell ill in spring 2008.
pic by Jason Antony

It took 3 years for the panic to subside and to understand a bit of what was going on and to learn that doctors prefer to have one thing clearly wrong in a body. They do not so well with multiple system failures. They were 3 years of brainfog too. I was at 5 or 10% activity level. Getting out of bed didn’t happen on most days.

The next 3 years were used to get a grip on things. To educate myself. I didn’t know what I was doing but slowly I learned about how they work: my digestion, my sleep, my hormones, lymphe, cell function, mind etc. Slowly a coherence emerged. In these years I made significant recovery. Brainfog lifted, stomach pains became less and overall energy level increased.

Especially the last year has seen me leap forwards, both in knowledge and in energy. I bought a car, I learned about my enzyme (dis)functions and only a few weeks ago I finally got to grips with my life long insomnia.
I’m now at 30% activity level of a normal healthy person while I detox. I’m at a better level when I don’t.

Now I’ve got a plan for more healing in place.

I give it 5 years, at least, since I acquired this illness over a long period of time -even if the final straw in 2008 was a virus- and my body is fragile.
I’ve seen many people make a remarkable and fast recovery only to crash a few years later. Pacing myself is going to be the biggest challenge.

PLANS/GOALS FOR YEAR ONE: 2014

  • brush teeth every day (and evening)
  • keep the house a bit tidy (vacuum every week and pick up after myself)
  • work methylation protocol (with a break every few weeks)
  • aid digestion and detoxification (eat well, take hcl, lie down and take little walks)
  • organize nice clothes to wear (sew them, buy them, trade them, felt them)
  • enjoy the more supple body (take walks, dance while putting the kettle on, shower, lift weights perhaps)
  • lie down every day, enter into Parasympathetic mode.
  • pacing. Only two things can be done on a day. Also pacing through the year: especially in May/June, in September/October and in December.

These are all tailor made goals, specific for my situation.
And they all have greater significance than you’d think upon first glance.

For example, brushing the teeth before 2 o’clock in the afternoon will get rid of bacteria that are happily growing there and will become a burden to my body during the day. I have noticed. Brushing really helps my body, I get cranky otherwise. Yes, a brain chemistry symptom for not brushing teeth… I’m weird.
(I don’t need to brush for teeth health because my diet has no sugars in it, brushing and flossing once before I go to bed is enough to keep my teeth healthy. Your milage will vary because your diet is different, the make up of your saliva is different and you probably don’t think brushing teeth is any effort at all)

(if anybody is interested in the significance of the other goals, please let me know in the comments and I’ll write them out)

This post marks a point in time. I hope in a year I get to write another one.
I sure hope I remember to take things slowly, all through the year and avery day.
It is very tempting when you feel a bit better to bite off big chunks of life. But they won’t sit well in my tummy. Two things baby, two things a day.

Hurry slow.
pic by Michael & Christa Richert

Living the plan.

I think I’ve got all my ducks in a row now.
pic by vanora

I’ve got a pretty good theory about why I fell ill and what I can do to get well. I’ve devised a plan that will get me there, in about 5 years I estimate. (better hurry slow)

Now all I have to do is live it.

Which is pretty hard to do. I’m more of an event kind of person than a structural one. I’m the one you get for thinking up a businessplan and dressing the store. Actually manning the store and enjoying the day to day runnings is not my strong suit.

This morning I learned about Angel Adoree. A remarkable woman who secured investments from The Dragons Den for her Vintage Pastries Experiences.
She’s also loved by Dick Strawbridge, another entrepeneur who gets me all excited.

Both are enthousiastic people, daring to show who they are and making a living out of their passions. And they enjoy a quirky appearance, which always gets my appreciation.

At the end of the sequence that shows how Angela pitched the Dragons and viewing her website and activities, I was crying.
huh?

Of course I’m a bit unhappy that they live the life I so long for. Doing fun things, building new businesses, doing eco-engineering, hosting vintage tea parties. But crying??
It’s these damn hormones and this sensitive brain chemistry.

I know.
My body is detoxing every day now, with the Folinic Acid and the B12. Heavy metals are floating all about. With my brain chemistry make up (MAO A mutation etc.) and my Progesteron defficiency I respond to the slightest imbalance.
I cry. I feel deplorable. I don’t want to live.

Which is why I am doing this slow, this healing plan.
Which is a drag because I’m impatient by nature and loose interest once I understand a thing. It’s new things to learn and puzzles to solve that keep me enthousiastic.

But here I find myself, dripping tears and heaving with misery. Grinded to a halt and no power left to move.
Best thing to do when feeling like this is ignore it, to make sure Progesterone and Valerian are on board, get the bile is flowing (take HCL or vinegar) and help the body move these toxins into the bile and out of the body.
That means: move. Get outside. Take that walk. Or take a shower.

Which is what I did. I went outside and did my walk.

I want to state publicly and clearly that going outside and taking that small walk in that state of mind is a mighty great accomplishment.
I deserve an award.

As a matter of fact, here it is:
Awesome-Award
which I totally ripped from this site and am too tired to figure out who made it and should be credited.
I’m awesome with flaws, like that.
But Chuck, Honey Badger and I don’t care, not today.

now swim, you bastards. Swim every day for five years and watch me win this fight in slow motion.
pic by katelyn thomas

PS stopping the N-A-C worked. I’m back to sleeping. I try and time the detoxing for daylight hours
Am slightly worried about too low cysteine levels. However, am banking on slow processes and full spectrum amino-acids (also known as runny egg yolks) giving the body plenty room for handling things.