Adequate Hydrocortison Supplementation

The past ten days have been a wonderful, wonderful ride. I’m alive again!

I’ve upped my Hydrocortison daily dose from 20 mg to 35 mg.  It may sound like a lot but actually it isn’t. Anywhere between 20 and 50 mg per day can be normal for an individual. 35 mg seems to be my sweet spot. I can feel when it’s too much or not enough. Very interesting experience!

I also learned how to spread the dose throughout the day in a more physiological way (take 2/3rds of the dose before noon, take it in increments of 5 and 10 mgs)

Alive again! I’ve got energy! I’ve got stamina! I’ve been doing things I haven’t done since 2008. Things like taking a shower before bed. Just because I felt like it and wanted to feel the warmth of the water. I could never do that because it would affect homeostasis badly. I had to plan my showers. Each day I could chose to either take a shower or cook dinner. Couldn’t do both.
Now I can :)

I’ve taken walks into the city. I’ve started to do a little bit of exercising. One morning I just took the car and drove to my friend, just to have tea with her and eat all her chocolates, and then I drove back home and did some other things for the rest of the day. Without crashing.

Reverse Therapy is a tremendous help in keeping things fun. Doing things because I want to do them, not because I can do them.

Suddenly giving my body the hormone it lacks has affected other hormones. I’ve noticed changes in Thyroid hormones, Testosteron, Estrogens and Progesteron. Insulin too, probably.

I have the good sense to do HRT on a dose that doesn’t exceed normal daily production so any effects I have filter out of the system within a day. It’s interesting how I can influence it though. With food, with Progesteron cream, with calming the nervous system.

Today my medical tags arrived. I’m going to wear one of these whenever I leave the house and am in risk of getting in an accident or experiencing dehydration.
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I may order some new ones, with less info on the front but more readible. These tags are quite small in reality. I doubt anyone who finds me collapsed in the street will notice. And/or has her reading glasses nearby to read the information ;)

  • I will wear it with a white band with red crosses on it. I’m thinking of embroidering them myself. I could also learn bandweven…
  • I will wear these “upside down”, not in the way that I can read it but in the way that anybody grabbing my hand can read it. Seems more sensible.

I ordered these medical information tags from a wonderful company here in Holland: Healthband. They are very good, fast and reliable. They keep an eye out for optimum spelling and lay-out of the text and won’t start engraving until you give the final consent. Really good costumer service!

It’s a woman and husband company. She’s a diabetic and wears one of these herself. They noticed we lack a good supplier in the Netherlands for sport id tags and medical id and sos tags.

The tags themselves are good too. No sharp edges and quality engraved.

I chose to direct my information towards courages passers-by who find me collapsed or delirious from dehydration. I don’t dazzle them with the medical info, that’s all on the back. I try and tell them exactly what to do:

  1. feed me my pills. They’re in my bra. Do it! I’m in danger for my life.
  2. call the emergency services and say this: “adrenal crisis!”
  3. say the name and dose of the solution of injectable cortisol I need. I want the medical personal to know.

 

The hydrocortison is wonderful :)
I no longer need a wheel barrow to be carried around in to enjoy life:

It may still be a honeymoon period. I’m still figuring out a lot of things, for example this morning I woke up a zombie, I have difficulty getting things right through the night when I’ve had my insomnia again.

Insomnia!
Now I know for sure! When I/you wake up at 3 AM and are wide awake for 1,5 hors, that’s a cortisol surge. It is!
I can now reproduce it. It feels exactly the same.

The insomnia I have had my whole life is that: a cortisol surge at 3 AM. Puzzle solved!
Now onto the next: what causes this surge? That’s one of the queries I’m on now. That and the relation between homocysteine and my weird (scary) heart rhythms that I have since 15 months. Because I’m still doing the mB12 thing, now combined with Phosphadytil-serine which drives another keg in the same methylation system. My GP put me onto this.

It causes mild brain storms, literally. But luckily I can move more easily now and movement is marvellous for levelling hormones and weird brain chemistry. So, I’m off for a little walk now. It’s beautiful weather outside here.
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The inability to make choices

Watching an episode from BBC series “The Brain with David Eagleman” I realize that normal people can do something I cannot: make choices.

Vanilla or Strawberry? Go left or right? Wear the blue or the green shirt?

ehhhhhhh………
pic by Svilen Milev

I don’t know and I cannot chose. I am unable to. I’m physically unable to. It just won’t come. I am stuck.

The documentary shows a lady who has the same characteristics. We’re both engineers and we both start to cry when having to make a simple choice.

Eagleman confuses choices with decisions which muddles up the episode somewhat. Decisions are rational processes and can be done by anyone or a computer when given the options, the parameters and the values to attach to the various components. I do these fine. Excellent even.

Choices are something different. They are rooted in personal preferences, whims and emotions. No one else can make a choice for you.

Ofcourse these are two extremes on a spectrum, in real life most decisions and choices have elements of each other. Decisions involve emotional whims and choices get based on rational arguments. But fundamentally they’re different.

Eagleman illustrates that to make a choice/decision both the rational part and the emotional part of the brain are necessary.
The woman had suffered brain damage in a motor cycle accident. She had the emotional and the rational part in her orbito-frontal cortex disconnected. As a result she’s now unable to make choices or even decisions. I don’t think she can work anymore.

She’s seen standing in front of a wall filled with different kind of potatoes and she’s just unable to actively pick one. She’s overwhelmed by all the options. She feels like crying.
She says she can’t process all the information, there’s just too much of it.

Tatertastic pic by Teresa Stanton

I have the same. But different. I can process all the information, I can see all the options, I can weigh them. But I’m not able to chose.
When it comes to a choice, where the options are rationally speaking all equal, I am unable to chose.

I come to a halt. Literally. If I push through I’ll get stressed and will cry. Just like the lady in the program.

Like I said, decision-making I do fine. Give me parameters or a goal and I’ll set out the best path towards it. I’m here for mashed potatoes? We’ll grab this one, it cooks to mush.

But you asking me whether I want fries or mashed potatoes for dinner? We’ll be hungry till Easter because I cannot make up my mind.

Easter Bunny Pals Deconstructed Fish Tacos LunchBot Bento< pic by Sheri Chen

This documentary points me to a possible cause: lack of integration between the logical and the emotional brain parts.

In me, I don’t believe it’s a physical connection. With me I think it’s a life long habit of preferring the rational and suppressing emotional processes. Not the touchy-feely weepy infatuated emotions but just the basic emotional running of the bodily system: small preferences, little whims, a tendency to make yourself comfortable.
I don’t have these on my radar. But I’m sure they’re there.

Eagleman and Reverse Therapy both offer the same location where to look for them: in the body. Focus on the body, relax and it will tell you what your emotional preferences are. A small tension in muscles; a little hint of drool at one option; seeing yourself in the near future with the one choice and liking what you see. Those are the clues.

doors pic by Ivan Malkin

I’m still learning to pick up on these. In the mean time I had developed some rational fixes to get to a choice:
1. in a choice all options are equal in value. Meaning there will be no wrong choice, whatever you chose. (realizing this eases my stress)
2. chose the option on the left.

It’s not ideal and it certainly doesn’t give the emotional pleasure of making the best choice but it gets me past the inability that hinders the lady in the documentary and that causes me so much stress.

Interesting stuff. This too fits in with the diagnosis of my illness. And my recovery from it.

Here’s the description of the episode I saw:

“The Brain with David Eagleman –
4. How Do I Decide?

Series in which Dr David Eagleman takes viewers on an extraordinary journey that explores how the brain, locked in silence and darkness without direct access to the world, conjures up the rich and beautiful world we all take for granted.

The human brain is the most complex object we’ve discovered in the universe, and every day much of its neural circuitry is taken up with the tens of thousands of decisions we need to make. This episode takes a journey through the unseen world of decisions, and how they get made. We start with a simple one – choosing a flavour of frozen yoghurt – and learn that every decision we make is born of a ‘winner takes all’ competition between rival neural networks.

We meet a woman who is unable to make decisions because of damage to her orbito-frontal cortex – an area that is key to integrating the signals streaming in from the body – and discover that feedback from the body is vital to the decision-making process. Dr Eagleman reveals that something as simple as when you ate your last meal can even influence life-changing decisions, as a study on judges showed they were less likely to give parole when they were hungry.

So many of our ‘conscious’ life-defining decisions are actually steered by unconscious influences, whether it’s deciding whom we find attractive or how to vote in the next election. Professor Read Montague reveals that he can be 95 per cent certain about which political party we will vote for based on our brain’s response to disgusting imagery. The more disgusted a brain response is, the more likely that person is to vote conservative.

Finally, Dr Eagleman takes a look at how we can take better control of the decisions we make, and uses an exciting new technique called fMRI neurofeedback to retrain the brains of drug addicts who want to make better decisions, to say ‘no’.”

One year later, a second chance.

Today it’s one year ago that we brought the cat home after she’d just been at the vets for a week and had barely survived. The long phase of recuperation was about to begin. Eventually it would take months and it was deep september when Lillepoes started to play again and lost all the grey hairs that had appeared around her nose.

For me the recuperation from that stress took at least as long. In January/February 2015 I lost all the health gain I had known since that miracle day of the 1st of May 2014 when I healed overnight from my ME because of the stress. I knew it would take months even IF I was able to get it back. Beside the cat-stress there was the court case concerning the manure facility that is planned in the field next to my cabin in the woods. For this case I had to perform “engineerily” a couple of times throughout the last year, starting on the 6th of February 2015. It was a conscious decision to do the work but I knew it was going to cost me, health wise.

It did cost me. And the grey hairs that I have grown in the course of 2015 have not gone away but I’m OK with that.

I did bounce back. Somewhere in Octobre I refound the relaxed state of being that is so important to my health. Around the 8th of December I was able to have some fun again without suffering an ME crash. By then I had learned to cook curry. I had learned to make custard from just egg yolks, heavy cream, salt, pepper and vanilla. Two dishes that support my health and that are welcome next to the endless pots of chicken soup that I make. I had written three or four reports that held up in court, that were not as incoherent as the ones I wrote in the previous years (this case has been active since 2013 I think. The final ruling is expected later this year. No idea, I think we have a 50/50 chance). And I had been living in the city for 8 weeks and felt alright which is a miracle because since 2009 I’ve not been able to stay at the city for more than 2 weeks without getting all flustered and hyper.

Later in December I started Reverse Therapy that boosted my recovery from ME tremendously. I then lost my zen again. But a session with my RT coach put it back in place again.

Late December I also did a Living Blood analysis and it was very cheerful to see the contents of the smallest drop of blood magnified and all the cells still living, moving, active as if they were still part of my body. It taught me there were not a lot of parasites wriggling about in that speck of blood. White cells looked impressive, there weren’t too much of those around either so no raging infection anywhere in the body. Red blood cells looked healthy. There were little specks of light wriggling all about and the technician said those were nutriënts. My blood was full of it! Looking good. The shape of my red blood cells indicated a shortage in vit B12 so I will pursue my cautious course of supplementing it.

This healthy LBA did make me “cheat” afterwards a bit easier on my diet. Chocolate every day! Now, 4 weeks later, I’ve gravitated back to healthy eating again because I can feel how bad foods are a burden to my system.

The Reverse Therapy is marvellous! It’s my ticket to health again. Not the health I had ten years ago but that’s ok, I wouldn’t want to be that person again anyway.

It’s still early days. I’m still at the learning new habits stage and that’s not easy. But because of RT being so tailormade to a person and, really, just the personal message your body is trying to get through that thick skull of yours, it’s not hard either. It’s very fitting.

For me, personally, I’m one of the people who has to learn (that it’s ok) to slow down. It’s OK to just sit back, to let life happen and to smell the roses. To “loiter”. (there’s an excellent Dutch word for it: lanterfanten.). Be a playful human without second thoughts.

Most people in RT need to learn to not be afraid, to not be so cautious and to go out and have fun. And they need to learn to stand up for themselves, set boundaries and express their feelings.

I’m one of the 40% minority that has plenty of fight when it comes to fending off other people but instead has a hard time to calm down.

There are two secret messages that I need to hear over and over again until they are ingrained into my mind and soul. I am going to share them with you but this is a one way street. You are not to communicate with me about them. They are between me and my body and by telling them here I just want to illustrate my RT proces to you, I’m not interested in your opinion about them. Discussing your opinion will interfere with my proces so please refrain.

These are the two main messages my body would like my head to know. Two pieces of wisdom that are news to me. I have lived my whole life without knowing that:

  1. we are safe. Here and now: we are safe. We are warm enough, fed enough, there’s no noise, there’s no chance of assault. There is no need to prepare for eventualities because We. Are. Safe.
  2. it’s ok to sit back and “lanterfant”. To just enjoy the moment, to live here, live now and “be not-useful”. Living here and now really is the meaning of life. It’s what I, the body, was build for and in which I excel. Enjoy it.

There we are. News to me! I’ve lived my whole life not knowing this and instead obeying a set of opposite rules. I’m sure you can see how opposite rules put the Autonomous Nervous System on edge. Drains it. Cause failing adrenals. Causing system wide collapse. ME.

Whenever I remember these two messages my body relaxes. My ANS relaxes. There’s a lot of mindfulness involved. Meditation. However you want to call it. In terms of the ANS it’s the Relaxation Response that gets triggered. And that’s what healing me.

Still ill?

Well, yes and no. The Addisson’s won’t go away. And I’m still weak. The sensitivity to a lot of foods and atmospheres remains. I still need to lay down every day, both for resting and for digestion, but these days I’m looking forward to having an hour of peace and quite. The rest and digest is a lucky byproduct. It’s no longer a chore I have to perform in order to beat this illness. It’s a luxury, to just lay there for an hour and lanterfant (mostly knit. Or surf the internet.)

I still take HCL with my food. I avoid gluten, beer, sugar, raw vegetables. Take all the supplements people with ME are supposed to take. I still do all the good things that got me from severe ME to a housebound level. Most days I’m still housebound, if you look at it from that end of the periscope.

But that’s just it. Looking from the outside you’d say I’m still doing all the same things but my perspective is 180 degrees different and that’s why everything is different now. I’m no longer an ill person. It’s true!

I no longer define myself. I no longer let my head-voice be the narrator of my life. My body is the narrator now and it prefers living in the moment. I’m trying to comply. It’s a bliss when it works. There really is a whole other realm of reality, in the moment.

This must be where meditating people get their kicks. (I’m not the meditating kind). This must be why the mindfullness people can be such a cult. (I hate hearing other people breathing or rave about the grass under their feet)

I’m doing it via Reverse Therapy. Same difference. Tailor made to suit me.

The other bits of Reverse Therapy are making me gain stamina. Physical stamina. I’m going out, doing things. Driving my car, visiting friends, standing on my feet for hours. I’ve experienced physical tiredness for the first time again. Not exhaustion but just physical tiredness. The kind that goes away with a good night sleep. The one that might get you a bit of muscle pain the following day. A novelty!

I wholeheartedly recommend Reverse Therapy to anyone with a chronic illness. Especially when you’re a perfectionist or tend to rationalize everything in your life. It won’t heal you. Recovery is a byproduct from this type of coaching. It will make you happy. It will show you you have a life. And that there’s a bloody marvelous way to live it, a way you’ve overlooked if you’re anything like me.

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.

Paint me like one of your Dutch still lifes.

We trimmed the white rose outside and now I have a Dutch master painting resonating in my house.

I’ve been in the city for 5,5 weeks now and I’m doing ok.

I’ve started DIY Reverse Therapy and that goes very well. In the mean time I must not burden my body so I try to eat the good things. I’ve grown sensitive to chocolate (!!) and try to temper eating that. It’s probably the copper in it that makes me bad. I’m taking Zinc every day now and I need it.

I’ve been going out for whole days. Visiting a friend or attending a knitters’ party. By train. Walking in the city. Having fun, being happy

I do allright after such days. Do need vigorous resting afterwards but since one of my RT messages is that I am allowed to chill and relax for joy that’s working out for me. I do need to practise a lot though because the message is hard to learn. Being productive is so drilled into me, it’s our national Calvinism tripping me up.

we still see the influence of Calvinism in the values and beliefs of the Dutch.

Calvinism dictated the individual responsibility for moral salvage from the sinful world through introspection, total honesty, soberness, rejection of ‘pleasure’ as well as the ‘enjoyment’ of wealth.”  quote Eleonore Breukel 

I’m still very much a beginner. Make lots of mistakes. Mistakes take time with ME.

 

To sum it up: my ME, my 80% recovery, my relapse and recovery plan.

Hello, I was trained as an engineer and I’ve approached this black box of a disease as such: entertain working theories but only act upon results.

I was bed bound and brainfogged in 2008 and 2009. In the beginning it was very severe ME. I didn’t know my own name. I had to be spoonfed in the morning before I could even lift my head. I think I was at 10 % health of a normal person. Maybe 5%.

I took my recovery in my own hands when the doctor said: “There’s so much wrong with you, I don’t know where to start!”
My reaction: “Then it probably doesn’t matter where we start. I’ll start with digestion then.
Digestion was the only thing that gave us something to go at: my stools where grayish white and floating. I was malnourished. Something wasn’t working: bile. And with that the uptake of nutrients in the duodenum.

Because I had special bouts of insomnia at night (hyper-alert from 3 to 4.30 at night) I could read basic biology books and later on more specialized books and write to-do-notes to myself for the morning.
Thanks to these studies and some trials I devised for myself I managed to identify problem areas and what I should do about them. I worked my way through digestion; hormones; adrenals; nervous system; sleep and mental health. I tackled about one subject per year.

Whenever I started investigating a new subject I didn’t know what I was doing or where it would take me. But each and every year I made remarkable discoveries and, by applying them, progress.
Overall I slowly recovered to a housebound level, without brainfog or pain, just tiredness and no robustness for stress (bodily or mind). And I was being happy. For the first time I lived in the moment and I was happy with the moment, without planning the next one.

Then in May 2014 I healed miraculously overnight and got to 80% health at x-mas 2014.

My working theory:

  1. everybody has their own personal bodily signature that facilitates the onset of their version of ME.
  2. in every PWME the Autonomic Nervous System is perpetually scrambled.

My solutions:

  1. identify personal factors and address them. All of them. (Basically you have to change your life in every aspect.) (In my case: Progesteron deficiency + insuline hyper sensitive + always in Fight or Flight + never slept through the night + MAO A kaput + hyperalert personality + hear and smell everything + a virus/bacterie in Spring 2008 + shot adrenals by mid 30s + food issues + insulin issues)
  2. take away all (personal) stressors that bug the ANS + teach it to react different to impulses.

That last one is not so easy but the ANS and the brain are plastic and fluid, you can teach it new ways.
For me, I used Gupta Amygdala retraining; EMDR and am looking into dr. Goldstein methodes of influencing brain paths chemically. You could also try meditation or mindfullness. I also did some CBT and even hypnosis and am trying my hand now at Reverse/Mickel Therapy. All to try and learn new thought habits in order to influence neuro transmitters.
The goal is to influence the physiology of things, not the psychology of things. Psychology has nothing to do with the cause of the illness. ME is not a mind-thing, it’s a body-thing.

From the start I knew I had additional adrenal problems, on top of the viral onset Chronic Fatigue. That’s why I read a lot about the bodily stress responses, especially dr. Selye who coined the term “stress” (when he actually meant “stressor”).

The body has some powerful systems to deploy when survival is at stake. The Stress Response is one. The insuline response is another. These are The Big Guns the body has and they should be avoided because they alter the normal modus of the body and have a lot of collateral damage. These are two systems that you cannot fool around with or be careless about. This is survival stuff. When the body gets bloody serious about something. Don’t taunt it.
That’s why I eat for chronic neutral blood sugar levels.

For the bodily Stress Response I’m avoiding all the things that my body perceives as stressors. They can be as ridiculous as garlic, in-laws or warm showers. I’m not arguing with my body, if it’s bugged by it I avoid it. I use my high-sensitivity to check whether something is ok or not. This gets me results.

I’m addressing all the non-ME things that burden my body such as hormone shortages, a diet that provides level blood sugars and methylation-problems. These are not the cause of ME but I cannot heal if I don’t fix these. For these things I had tests done and am under doctor’s supervision.

That leaves the mysterious last piece of the puzzle: the ME-thing. The chronic thing that keeps causing problems.
Is it an intracellular parasite gnawing at my nerves or at my mitochondria? Is it some sort of unhealthy ANS-modus that my body has gone into and needs to snap out of? Is it a permanent eroding of the intracell signalling devices?
I don’t know. It’s the piece that prevents me from going from 80% to 100% health.
(My instinct says there’s an invader continually bugging my body. But my body can co-exist with it, if there are no additional stressors in my life.)

On May 1st 2014 I started Gupta Amygdala and taking 100mg oral micronized Progesteron every day, regardless of cycle. (I keep repeating: Progesteron is not a sex hormone. It’s an adrenal hormone and it’s a neurotransmitter.)

On May 2nd I started healing.

Understanding Gupta and practising it clicked everything into gear that day. On top of all the things I was doing right to address the other issues (food, posture, hormones etc.) I had found the thing to influence ANS. It relaxed at once and health was restored.

Healing is a slow process. I had to keep taking my rests. I had to pace myself very much. No weird foods. No sudden activities, even though I burst from energy.
Over the coming months I slowly build up my activity level and my stamina. Until I was at 80% health and could do anything I wanted and meet friends and take drives. I was thinking about work again, a career. (still not eating weird stuff etc., those things are changed for life)

Then in Spring 2015 my precious 80% health took a nosedive when two normal stress life events happened. Just normal things. It could have been anything (an accident, a robbery, falling pregnant, going through a divorce, getting married, death of a parent-in-law, moving house, graduating, etc. etc.) In my case the cat nearly died (10 days of extreme stress for us and months of fear and worries afterwards) and I had to write an engineer’s rapport for court to prevent a big manure plant happening right next to the cabin that is my place of peace out in the country. (as an engineer I’m not against plants or manure but the plant is not designed securely and the predicted odour emissions were not measured right). Writing was stressful as is participating in the judicial process that puts more weight on procedural integrity than common sense. Parties are not there to solve a problem together, which is an engineer’s point of view.

We’re now 8 months later and both issues are resolved (cat is healthy again; the rapport is at the highest court of the country and there’s nothing I can do anymore) and I’m severely housebound again. I’m at 40-45% health I think. I can leave the house once a week for groceries or I can meet someone (receive visitors or visit them) once every two weeks. I’m very wired and I react to all the small things.

But I didn’t fall back to bed bound nor the 10% health level where I was in 2008/2009. Nor do I have brain fog. I did have that awful experience with PMS-from-hell (PMDD) but that seems to have gone now too with Zinc-supplements.

Now I’m trying to get back into that relaxed mode I was in last year. Out of Fight or Flight.
Back to being friends with my body, back to embracing and carrying that small inner child that’s so afraid and feels so unsafe.
It’s frustrating that just thinking it doesn’t make it so. Getting out of wired-ness takes some time and practise. It’s not an intellectual mind-thing. You can’t plan it, you can only invite it.

But I’m sure I’ll get there again, into that pool of peace and ease. I’ve nearly never stopped doing all the things I need to do (all the personal signature things from point 1) so my baseline is still pretty robust.
I’m therefore confident that I will regain some health, now that the life events are dealt with.

Besides this future goal I’ve now experienced what happens when my system gets put under these kinds of life stresses again. It’s scary but I didn’t die and I don’t need to worry (much) about the future stress events that will surely happen in my lifetime.

What happens in my body and is not to be worried about is:
– my liver stops producing bile (this means a major waste removal pathway is blocked and nutrients aren’t being absorbed);
– my body usurps all kinds of minerals fast and from the lack of it I get depressed and even suicidal (PMS-from-hell and dopamine shortage caused because Zink was gone);
– I cannot focus (both eyes and attention);
– I cannot relax (both body and mind) (and therefor not digest my food properly).

This is all natural and won’t kill me. They do need to be addressed though because I cannot afford to undergo these things for long. That’s why attached to this post is a little reminder-note for myself. The things I need to do the next time life comes a’knocking.

I’m really confident about getting into that relaxed ANS modus again. Confident that I’ll get there and confident that it will heal me again.
On the ME forum Phoenix Rising I’ve been reading posts by James7a who recovered 100% and I’ve also been watching video’s by Neuffer who also recovered 100%.
They both practise according to my ANS working theory and they came up with their own version of it which makes their cases and experiences logical. I love logical. When things make sense.
I’ve also started reading on another ME forum called Health Rising which is more hopeful than Phoenix Rising and, amongst other things, collects recovery stories. There’s a lot of focus on the ANS there. And how to influence it even if this means deploying psychology-tools. But: psychology has nothing to do with the cause of the illness. ME is not a mind-thing, it’s a body-thing.

So I am going full throttle at it again too. Broad spectrum (addressing all the aspects of my life that need attention) and with special attention to getting the nervous system to calm the frick down.
Full throttle at a very slow pace.

Check out the short video’s James7a made on YouTube, telling about his illness and what he did to recover 100%. He’s a great, young British man who did it. He did it!
His video’s are short, 13 minutes and very natural (not rehearsed). And he makes his point very good.

———————————————————————-
just a little note to myself:
Next time a life stress event occurs such as moving house or death of a parent I will do the following regardless of where I am health wise:
– clear my calendar for the next six months;
– take all the minerals, take all the amino acids, take all the vitamins;
– drink salty water by the gallon;
– get massages or yawn and stretch like pets do and as often as pets do to help the lymph system to remove waste;
– eat gelatine by the bucket (cook chicken drumsticks in cocosfat and water, let cool). Gelatine is easily digestible, contains lots of amino acids and travels first through the lymph system instead of the liver;
– make chickensoup but also eat other things. Rotate.
– watch Bananaboy’s short videos again where he explains how he healed
– wear ear mufflers and rest rest rest a lot;
– remind myself I am safe. Here and now. I am.

the reason to live.

I did find the one reason to keep on living, a few weeks back. I’ve been test driving it and it works for me.

It’s because you provide a unique colour to the palette of humankind. A colour only you can provide. A colour your friends and your acquaintances would sorely be robbed of, if you took it away.

pic by Neil Gould

I got the idea from this Dutch post by Jacob Jan Voerman, written to a friend of his whom decided to retreat his internet presence.

“I’m taking myself off line because I’ve said all I want to. Anything else will just be a repeat”.
Jacob Jan writes to him that the crux of his internet presence is not the content he provides, it’s his mere presence. The unique colour he adds to the palet of the world. Of human kind. Of his friends.

I was very much comforted by this thought. I do provide something unique and it doesn’t require any effort on my part. Just being me is enough. Just showing myself a bit, on the internet, towards friends.

It has comforted me in times when I want to end this life because the pain has become unbearable. It did a couple of weeks back. I was driving home after having exerted myself beyond my abilities and running low on vit D and Progesteron to boot.
The pain, this life, it became unbearable.
Luckily I knew it was chem-induced and that it probably would pass if enough time flowed by. But the pain and this life, in which I have to manage this all while being crippled by the illness in a world that works in logical ways where decline is inevitable and love and beauty is only found in short vulnerable bursts, became unbearable. No longer worth it.

pic by Asif Akbar

I’m living in limbo now. Still shell-shocked from that episode.
I’m not about to commit suicide on an impulse but I’m clearly finished with the life I’ve lead up until now. It’s no longer acceptable. Something’s gotta give. And something will.

When friends and loved ones try to convince someone that life is worth living because they love him/her it always struck me as a selfish argument. Why should the tired-of-life-person be asked to keep on enduring the pain? Because you’d miss him/her? Because you’d get a hole ripped in your heart? What about the tremendous pain that person endures, day after day, minute after minute?
“Because we love you” is not the right thing to put on the scale.

“Because you are unique and you add something unique to our world” works better. At least for me.

What it also gives me is a sense of self worth.
Me becoming more ill every week it seems has send my dreams out of the window of a career. Artist; illustrator; engineer; writer; landscape designer. Anything I’ve talked about on this blog is not going to happen.
I cannot sit up straight long enough. I cannot hold my thoughts together long enough.

I’ve cried about this loss and I’m just about accepting it now. It gives me some peace of mind, that I can now finally let go of all ambitions that took hold in me.
I can let them go because I’ve found something else to connect my self worth to. Something that does not require any sitting up right or keeping my wits about to be for-filled. By just being myself and just sharing my unique colour with my friends and (internet) acquaintances I am worthy. Living a worthy life. Something to be proud of. Someone to be proud of. Even when I’m “doing nothing”.

pic by Neil Gould

(btw, I’m discovering a whole new array of beautiful and touching moments in “the limbo live”, where I no longer strive and strain for results.)

The need to reinvent myself. Again.

Here I am. It’s not going splendid. But it’s going.
I feel I need to come to terms with my current level of health. This is it. It’s not going to get better.

I’m worse than I was 3 months ago. But I’m better than I was a year ago. I can be thankful for that. Health wise, I think this is it. This will be my base level.

That means I can now, once again, take stock and identify my probable daily energy supply. And adjust my expectations and my plans to this level. And then start living them, instead of spending all my energy managing my life, my day, my body.
I’d love to live life again, even if it is within these limitations.

 pic by bugdog

I’m still a bit blue over the health I gained and lost again in the last 6 months. I have no illusions about making up for that loss. It truly feels like I’ve hit a ceiling. It’s in my bones, my gut. Not something I just thought up.

I’m also blue because I feel age creeping up on me. In a few decades I’ll be old and things will probably deteriorate fast. It’s not like I’ve got a lot of buffer, I have maximized my potential already. The thing I dread most is the extra time and energy I will have to spend when my body deteriorates further.

These past two weeks there’s also a lot of toxins floating in my brain which is a big nuisance to live with. And GOdamnit, I forgot to take vit D today!
that’s not helping the brain moods at all, that’s for sure.
I’ve been feeling awful, thinking awful things, wanting to snap at everybody (on the internet because I keep away from people in real life). All the while knowing this isn’t me. But knowing something doesn’t make the feeling go away.

 pic by Andrzej Pobiedziński

Also, I ate a lot of carbs over the past few weeks. Even made some custard pudding flavoured with commercial cookies and pine apple juice. I think my body sacrifices a lot of minerals when it has to cope with carbs and empty foods. I may have depleted the mineral supplies I’ve build up over months.

Well, back to chicken broth and mineral supplements (which might turn out just to be expensive pee) then. Sigh.
And I’ve got to kick my body into gear, get it moving, because nothing clears out toxins and levels hormone levels like moving does. Just a little walk around the block will do.

I’ll start by dragging myself of the couch now and get some broth and vit D in me. I hate how everything is a mental struggle, while I KNOW I’m an enthousiastic, cheerfull person by nature. I think I could handle the low energy and battered body better if I didn’t have that brain toxicity to deal with too. It just robs you of your identity, it makes you just drag an empty shell through the day, wasting precious time.
(But I guess it could be worse. I could mistake my false feelings for my true soul. At least I’m not confused about who I am, even though I do not get the chance to shine trough.)

pic by Sue Byford

Minor set back. Hopefully.

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

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

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

I had a peaceful day. Two of them.

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

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

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

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

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

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

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

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

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

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

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

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

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!