Fixed the slow colon/ constipation.

So I fixed my slow transit colon and I now regularly use the toilet and deposit healthy, softish, stools in the round porcelain vault.

My clue was this: a scientific case where Crohn’s disease was healed by restoring the balance between gut neurotransmitters Dopamine and Serotonine.

In Crohn, it was assumed and proven in this case, there’s too much serotonin and not enough dopamine. Serotonine speeds up gut motility. By comparison I assume dopamine slows it down and this echoos my experience as a high dopamine person.

This is the scientific study: Amino acid-responsive Crohn’s disease: a case study. A patient of 22 years was healed just by taking in precursors to both dopamine and serotonin in a good ratio.

I mentioned this to my GP and he said that a regular side effect of Anti-depressants is loose stools. AD enhance the levels of serotonine. Serotonine is produced and used in the gut, for about 90-99,9 % of the bodily production.

So I set out to up my levels of gut-serotonin. For this I now take 5-HTP, a plant and precursor of serotonin. Currently I’m taking about 100 mg twice a day. I also stopped eating any and all fibres since I think my case of constipation is definitely not helped by adding fibre to hold the water. I’m better helped with relieving the digestive system of as many burdens as possible. No fibres, no vegetables, no raw foods, no nuts, no tomato skins et cetera.

I also apply the tummy massages I outlined in my previous post, both for the colon and for the Hepatic Flexure. And do the kettlebelling now and again.

I squeeze out lemons and drink the juice. (Acid stomach = better bile? Lemon juice relaxes the gut muscles? The increased salivation is important?  I know there’s a link between adequate saliva production and adequate adrenal function/stress resilience… I don’t know, it just feels good. I can’t say yet what is important in the palette of solutions I’m trying right now. Fresh lemons do seem important. Store bought lemon juice didn’t do the same for me.) I also take 1000 mg vit C. Sometimes twice.

Lastly I only eat proteins twice a day. I don’t eat any more after half past three in the afternoon. I believe the gut -or my gut at least- fares better with rests and pauzes. Not the constant bombardment of food morsels that the five-meals-a-day-brigade advises.

Those five meals a day are meant to keep your blood sugar level. I know other ways of doing that (see dr. Bernstein: eat nothing that triggers insuline nor any volume bigger than your stomach/fist. Or do a ketonic diet (but at the moment I’m enjoying my slices of white bread with lots of butter and just a hint of ginger jam too much)).

My gut has relaxed.

Suddenly my guts all fit into my pelvic bones. Everything is neatly folded up there. No bloating. I stand taller. Find it easier to sit up straight.

I have more energy.

I’m not sleeping through the night yet. But bodily stress has lessened. I have been sleeping 5 or 6 hours instead of 4,5. When I wake my guts want to move. I think they do not move while I’m asleep, it seems like they are waiting for me to wake. Or they are waking me. I need to do the laying on my right side to assist the Hepatic Flexure. It works. I can hear stuff moving and gurgling. I pass a bit of gas.

I have more energy.

However. The upped serotonine makes MAO A and MAO B work harder. This siphons away Dopamine. I have noticed that my ability to concentrate diminishes on days of high 5-HTP supplementation.

So I’ve taken a new supplement to up my dopamine while I do this experiment with serotonin. This supplement is called Methylphenidate, better knows as Ritalin. Ritalin causes the brain to produce more dopamine. I take 2,5 mg twice per day. Dosage for ADHD is usually 40 mg per day.

I had a big booboo with the doctor about wanting to try ritalin in this context. It’s a new GP, my trusted GP has stopped his practice to focus on orthomolecular science, specializing in the Methylation Cycle (!!!).

The new one didn’t understand one jota of what I was saying. Didn’t try either. All he saw was “a depressed housewife, looking for some happy pills”.  He thought I was on way too many supplements (didn’t bother to notice how low and tailored my dosages are). He suggested I exercise to battle depression. I’m not depressed. I already exercise. Fuck off.

I tried to steer the conversation into engineering territory, explaining how I approached this black box of a disease. How I had figured things out. How I had devised trials, to get more data. I mentioned Methylation Cycle and how messed up mine is due to faulty vitD and vit B12 receptors (I oversimplified things to get a common point of reference).

I asked him if he was familiar with the Methylation Cycle in the mitochondria, as part of the Citric Acid Cycle

All he heard was “Methylalalallablabla” and he proceeded on a rant about how way too many people take Methylphenidate and no one in Spain is taking it and here in the Netherlands everybody and their mum is shovelling pills, all because we want to keep up with Instagram and Facebook and things.

Yeah. It does have the same word in it, “methyl”. But I don’t think it means what you think it means.

So we parted. He did give me a prescription for Ritalin. He was reinforced in his idea that women my age are just sorry people looking for a quick fix. He never got to see beyond his blinders and see that in fact there was a smart engineer sitting opposite him, one with an interesting experience and an open approach to both life and health. Someone who he could have an interesting conversation with about healing and medicine.

Perhaps I’m a depressed housewife too, just like he assumes, I can’t say because I’m living my life from the inside out and have blinders of my own, but I know for a fact I’m also that smart engineer and he never knew.

The ritalin works. But it’s a crude dosage. I easily get hyper. It’s a nice feeling, for sure. I feel alive and productive and I want to dance and run. I do dance and run and try to change gears afterwards and rest (do that stomach massage while I’m resting).

I even started fitness. Powerlifting! Starting very slowly. I’ve been doing Fit20 since March and my core muscles have been build up precisely and with attention. Now I’ve joined a generic gym and do some cardio as warm up and cool down. In between I work on 7 or 8 machines, working on muscles and strength. It’s lovely! Endorphines ahoy! Lyn White from Reverse Therapy would cheer, I’m sure.

In a few weeks I’ll go work with the loose weights, barbells and such. Squat, Push up, Pull up, that sort of thing. It’s something I’ve always planned: weight lifting once I hit 40.

I couldn’t when I hit 40, I was too ill and weak. Now I’m 45 and I’ve started. Thanks to adequate cortisol replacement and now relaxed gut yielding more energy.

Still, I’ll be fine tuning the ritalin-dosage. 2,5 mg is too much in one go, I get too hyper. It’s the same kind of hyper I feel when I eat something fried in vegetable oil. It’s some sort of feverish greed. It feels as hippetyhop as having a little caffeine but with caffein I just get very chatty and fast-brained. With ritalin/vegetable oil I also get a feverish glance in my eye (and brain).

Estrogen-hype is different yet again. There it’s more Popeye-bam!bam! Rosie the Riveter. And lots of energy. I suppose its testosteron related. Of which I scored very low at the last blood tests by the way. I now have a DHEA supplement which converts into estrogen and testosteron, courtesy of your own body to chose how much of which. I do need more testosteron because I need to build up muscle. It’s a weird sensation to work my muscles in the gym but not have the building blocks to actually build them. Strange indeed.

For all HRT it’s: go low, go slow. So I’m just taking a little dab of DHEA every few days. In a few weeks there’s a whole battery of blood tests again. Before that I am to meet my new GP, a woman. I’ve prepared an introduction to my case. I won’t be hood winked by a biased GP again. I hope.

In the mean time: colon is happy! I am happy.

There’s more amplitude between activity and rest. The ritalin is a bit too high at the moment, I’m adjusting dosage. But it’s not so high that I get dopamine-excess symptoms such as head ache from tyramine rich foods (such as cheese). Although they do tend to come on sooner though but that can also be because I’ve been off tyramine for months if not years now. The system may have grown very sensitive (aka it’s not something I’m very worried about). The other day I had just a few organic corn chips for their salt content (It’s a heat wave over here! I’m very vulnerable to heat wave I found out.) The corn chips were made with olive oil (which are not the vegetable fried oils I meant earlier, those are from commercial shops and fast foods) and I got a splitting head ache afterwards. Olive oil contains tyramine. Same with Mascarpone cheese.

If I get the highs and the rests a bit more under control I’m hoping the sleep will follow too. I now -again- have come back to the notion that sleep is made during the day, just like I learned in the sleep study and the psychologist that helped me as part of that. Relaxing, mindfulness, during the day pays off at night.

I experiment with foods but most make me tired. I long very much for salad and sprouts and I eat them in small quantity. But mostly I eat a slice of white bread with lots of full fat butter (Demeter quality) and a hint of jam. Or a thick slice of white bread (artisanal bread, without sugar. Just flour, water, salt and yeast.) with four or five egg yokes on it, warmed in coconut fat. (I won’t say fried because I like to keep the yoke runny.)

I have a piece of chocolate, 75% or more cacao. But only one or two small bits in a day because I’ve noticed it kicks my adrenals and I will lie awake when chocolate was consumed.

For dinner (at 3.30 AM) I have drumsticks or a piece of steak or 150 grams of minced meat with tomato juice and spices. Or fish with creme fraiche.

I also eat pancakes, with jam or slices of apple. But only one or two a day. Instead of slice of bread or dinner. As a pick-me-up I drink decaffeinated Earl Grey tea with unwhipped cream or full fat milk.

Overall I just don’t eat that much, in volume. I do eat enough in calories, what with the butter and all. I have gained some layers of fat in the past few months. These will disappear now that I’m more active. I’m not worried.

I have found that ritalin/dopamins will keep you going and will take away the desire to eat. This can be a seductive tool in the hands of someone who’s not level headed. I know I have an addictive DNA-characteristic and I feel the appeal. Reverse Therapy keeps me grounded in what’s important. As do the physical activity. I need to go out every day, every morning, to move and to clear away the toxins and cobwebs that have accumulated in my body and mood. My body is helped by mB12 and Phosphatidylserine. I need to pay attention to clearing the junk away properly, now that I’ve kickstarted the methylation process and am egging it on with the ritalin.

So these are interesting times for me. I’m deadly afraid I’m wrecking something and for this I’m monitoring my body all the time which is not good, in terms of relax and trust (Reverse Therapy primary points). I take comfort from the knowledge of and my experience with “Go Low and Go Slow” which has always worked for me up until now. I find that I seldom burden my body beyond what it can clear away in a day. Now that the gut/colon is falling into this rhythm too I get more and more confident. Confident that I am a friend to my body.

I wish my former new GP read this. We could’ve become a team.

 

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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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.

Drawing up the map of my health and plotting where to go.

Right. Time to get an overview of my health and identify the various aspects and their symptoms. In order to have a clear understanding which daily medicines and measures are targeted at which aspect. In order to get a clear view of topics that are not covered and need more research.

My personal collection of issues, in no particular order:

  1. Progesteron deficiency. Not clear whether it’s ovary-caused or an enzyme issue. Clear is that I lack the hormone and, over time, my adrenals have not been able to keep substitute production up. Substitute; HRT. 10 mg per day blood level. Perimenopause is acting up lately, moodswings. Up to 20 mg.
  2. Nervous System not well instructed, tendency to do Fight or Flight as default. Three decades of this caused some damage and infavourable habits. Habits countered with therapy, Amygdala retraining, hypnose, EMDR. Daily conscious attention needed.
  3. some food and other sensitivities. Some are caused by gene make up. Gluten, dairy, green leaves, whole grains. Vanille flavouring, garlic, glutamate, caffeine. Blood sugar (and insuline) react intense to sweet tastes.
  4. immune system. Very robust, I don’t get colds or the flu. Needs more research though because I have a sore throat every night and react badly to dust. Gets influenced by cortisol-intake. Skin doesn’t heal well.
  5. adrenal insufficiency, acquired. They need fortification. Taking hydrocortison, 20 mg per day.
  6. explainable other things: cold extremities when I don’t take enough Iodium; crankyness when PMS; crankyness when not enough sleep; light headiness when not enough salt/BP; shoulder impingement
  7. unexplained symptoms since birth: sleep pattern. Pillow = zonk! 5 hours later I wake up in a state, takes 1,5 hours to calm down and get normal body temperature. Then I can sleep another 1,5 hours. Wake up unrefreshed. Sore thoat every morning. Slow heart rate (42 bpm), it sped up since 2010, at 60 bpm now.
  8. unexplained symptoms since 2008: fatigue; difficulty maintaining homeostasis; not able to function long in upright position (standing or sitting); brain fog; duodenum uptake only works when lying down; “heavy” limbs and body; not able to handle sounds, stress, surprises or temperature changes. Liver and bile problems (not working). Some awful thoughts due to faulty brain chemistry. Something with vit D. I need to seriously pace myself, it’s a necessity. No pain, grateful for that.

There we are. An interwoven complex of symptoms. I can assign most of the things I notice on a day to day basis to one of these (and act accordingly). Apart from the things at points 7 and 8.

The other things require a constant managing. From my stress levels to my food, from my house chores to the choices of social interactions. Which pill to take when and how much. Monitoring thoughts and feelings and allowing some and blocking others.
It’s a drag and a full time job!

But I need to step up my game because new things need my attention:

Lately the Progesteron thing is getting more difficult, where the feelings of despair are more intense and the HRT doesn’t resolve it.
This needs some more research since it’s probably time to look at oestrogen replacement and the connection with vit D, considering my age (menopause is looming). Before, any oestrogen would give me endometriosis and phyto-estrogen (soya yoghurt) would cause spotting. This may have changed.

The immune-system: I have only a basic understanding of. Cortisol dampens it and this is desirable but not too much. Stress dampens it (via cortisol) and this is not desirable at all.
I’d like to get down to the details. Learn about the various cells (T-cells) and what they need to function. I bet the lymph system is involved and it’s fond of fat so that’s interesting. What proteins and enzymes do the immune system cells prefer? Do I have those in abundance? Are some gene mutations hindering functionality? Why does anti-histamine work so well to relieve sleep problems in people with ME?

Do I have chronic infections that could explain the rest symptoms? My onset of this chronic fatigue and other problems was typical for an infection: a short bout of “flu” in Spring 2008 and I never got up from the bed. Crippling fatigue, brain fog, not the strength to keep my head up and eat something.
Adrenal issues played a role in that, back then. Some symptoms, especially the not (mental) responsiveness until some (salty) food touched my tongue is illustrative of adrenal crash. My husband had to physically put something in my mouth, while I lay drooling in my bed, before I could open my eyes, think and talk.
But weeding out those symptoms and the ones caused by Progesteron deficiency leaves me with some that indicate chronic infection. My overall body system is hindered by something. Something clogging the system in the core. Clogging cell functionality. I just don’t seem to produce the ATP I did before.
There are some parasites who interfere with ATP production. Some bacteria such as Chlamydia Pneumonia and Rickettsia.

I’ve encountered the following parasites for sure, because my husband and my cats are proven carriers: EBV; Herpes; Chlamydia Pneumonia; Rickettsia. Coxiella burnetii.
I’ve also been bitten by ticks when I was 23 years old. No signs of infection have emerged back then. I got sick when I was 37 yo.
I got sick 3 weeks after visiting a sheep’s farm with fresh lambing that later on turned out to have Q-fever (Coxiella burnetii.)

Ah and there is one thing I do not wish to research at this moment. My heart. I’ve been experiencing weird rhythms and tight feelings. But I know the heart does this in many people. And I know people with ME are prone to develop collapsed matrial valve. And I have long term high cholesterol, due to my medicines.
These heart things are recent, the last 5 weeks. They occur daily now. I’ll let my GP listen to my heart when I see him in 3 weeks. But I will not research this topic.

Lastly I came up with three theories of what has happened to me in 2008 and after that. Trying to explain for the weird bout of healing I experienced last year:

  1. I got infected in 2008 and now have a chronic infection that wrecks my body. This is what ME seems to be, a chronic infection with a bug that hinders normal cell functionality. Akin to malaria, Lyme, HIV, EBV, Hepatitis and the lot. It comes and goes. But it never leaves.
  2. I got infected in 2008 and conquered the infection. But somehow a switch got turned and now my body operates in a different way, not allowing for maximum health. These switches could be genes that were turned on. Or habits/modus operandi the body settled into. Perhaps I flipped the switch on May 1st 2014 but the stress of Spring 2015 flipped it back.
  3. Whatever happened in 2008 for certain is that on May 1st 2014 I healed overnight (the night I started 100 mg of daily Progesteron and Gupta Amygdala Retraining). I was slowly but certainly healing from that day on until Februari 2015. Then the cat got sick, I experienced some major stress and subsequently fell ill again (bile gave out, liver pain). Have not recovered. Did I get infected by her eye conjunctivitis bacteria back then? Is this nothing but a second stint of intracellulair parasites?

Just three things to keep in mind. To keep my mind open about what’s happening. To consider alternatives and not get stuck on one particular idea about what my illness is and where I am in the process.

My research topics for the coming months, in no particular order:

  1. HRT for peri-menopause: oestrogen, vit D
  2. immune system: T-cells and their sisters, fat digestion and distribution through body (skin, collagen), lymphe system, reaction to chronic infections, tools for intracellular parasites
  3. intracellular parasites. How do they live, what environment and nutrition do they want. What are the likely culprits in my case?
  4. are there alternatives to long term anti-biotics to battle intra cellulair parasites. Can cellulair environments be altered to annoy the little buggers for example? (acidity; flush out certain amino acids; ketogenic energy modus; aid T-cells)
  5. the liver problems. This is a specific thing in me. Bile production stops with stress. I want to help my liver. Research the amino acids Glycine, Taurine and Niacin.

Three and five are subjects I am genuinely interested in. Intellectual curiosity. I want to learn about these topics, regardless of my personal situation.
This is good. I need some topics of thought to direct my attention to when I start moping or thinking about the grand scheme of things (which leads to depressive fatalistic thoughts). Part of the mental hygiene routine that’s required when you’re dealing with chronical illness, moodswings and/or life in general when you’re a sensitive and alert human being.

Well this is it. The map. The routes. Better get started.
I estimate to ponder these things for about three months.
In between there will be that GP visit (main goal is getting psychiatric help for the brain chemistry thing).
And the manure factory plans are coming to an all high in the coming months too, it’s at the highest court of my country at the moment and the engineers’ rapport I wrote (in February 2014, right in the middle of the stress!) is one of the key features. I expect to write some more documents and meet with experts on a moments’ notice. This will put me to bed without a doubt.

I heartily hope no other stress factors emerge in my life because I do not have the reserves to cope. Please no family crises or friends in danger or cat-astrophies. In the mean time I shield myself from world news and noise and bad foods
I’m addressing the known health factors in the numbered list at the top like nobody’s business, doing all the right things. I can’t go out, I’ve already cancelled all wooly meetings I had planned, I’m resigned to being housebound again. Only with careful pacing will I meet the two challenges described (GP and court case) and preserve the current level of health.

Hopefully my research will unearth some new things to try and give me a leg up to get to better health again. I’ve also mourned the fact that I’ll never work again. And that I may never get to another level of health. This is behind me now, I’m now sailing through a blissful bout of denial about the latter thought. The realisation of a dwindling life comes and goes. But never leaves. The Nile is a lovely place to visit every once and a while.
pic by Sarah Corr

update 1 november: six months of recovering from ME/CFS

Today is six months after the first day of my leap in recovery. This is an update on how I’m doing. Because I am doing well!

For me, recovery suddenly started on the first of May when I started to take 100 mg of body-identical Progesterone (not “the pill” or your typical HRT but the daily dose of bioidentical Progesterone that all human beings need, regardless of sex or age) daily and lowered my chronic bodily stress overnight by stopping the constant worry about it (through Gupta Amygdala Retraining Program).

This leap in health was possible because I had set the scene: my digestion track was in optimal health after years of no vegetables, no sugars and no grains. In those same years I had managed to shed some of the toxins that had build up in my cells during a lifetime (due to DNA damage to the normal waste disposal processes) and I had supplemented all minerals to sufficient levels.
I had also learned to take two horizontal rests every day, to facilitate digestion and to let my nervous system experience rest and calm. (get out of Fight or Flight and into Rest & Digest).
On top of all this I had reduced all life stresses (work, noise, mother-in-law, social gatherings, having to make decisions and choices all day) and I was supplementing two hormones I do not have enough of at the moment: Cortisol and Progesteron (the sex hormone. Not the basic building block all humans need that I reference in the first alinea). I supplement these two according to symptoms and time of month.

Recovery in the last six months has been steady and continuously and today I live bussier days and get more things done while maintaining a calmer mood. My house is cleaner, I’m better fed, better clothed and take showers more often. I go and visit friends. I drive my car more. And I’m thinking about working again.

And it’s not easy, being in better health.
I now realize that besides the hardships of being ill it makes for pretty easy days, when you’re very very ill. Your priorities are few and pressing. There’s getting out of bed. There’s getting food and keeping it inside. There’s trying not to crash. There might be some washing of bodyparts. And then there’s getting back in bed again.
All other things fall from the plate. No need to spend a thought on them. That’s easy living. Bleak but easy.

(Not that being ill is easy. Besides the practical difficulties there’s the disappointment and despair and frustration to deal with. Not an easy task by far.)

Being in better health piles up opportunities to fill the day. I have great difficulty sifting through them, deciding what’s important. Often I’m knackered from the contemplating and choosing, not even from doing.
I had not counted on that.

The other thing that surprises me is the emotional luggage that’s come tumbling off this vehicle now that I’m gathering speed. There’s all kinds of things emerge and need to be cleaned up and repaired. Things like my lack of basic safety or coming to terms with the nonsense of the world and of life and of time.
I wonder if I had stowed these issues away while I was so ill, just because there was no reserve to deal with them at the time.

Now a summary by subject:
FOOD
I still eat chicken soup as my main staple. Two or three times a day. It’s home made stock, I make it once a week. Fatigued people can make it too because you can take many breaks in between the preparation.

recipe ME chickensoup

needed:

  1. chicken (whole chicken, with bones but without intestines, feathers, feet and head. PReferably organic. Can be a mean old chicken)
  2. stalk celery (preferably organic)
  3. ginger (big piece, as potato-like as possible. Gnarly ginger is tiresome to skin)
  4. vinegar, salt, pepper

utensils:

  1. large pot. 5 litres?
  2. small plate
  3. paper towel
  4. colander
  5. cutting knife
  6. schuimspaan
  7. perhaps scissors to cut the celerytops and perhaps oven mitts if the top of the pot gets too hot. A chair to sit on.

making the soup:

  1. fill a large pot with water (luke warm of cold), add a lot of salt, two large glugs of vinegar and the chicken (don’t add the pepper yet). Put it on heat. Go lie down.
  2.  chop up the celery (by scissors or by cutting on the small plate) and put them in the colander. Go rest.
  3. rinse celery in the colander. Leave in colander in sink.
  4. cut up the ginger on the small plate. Small enough to eat in a spoon of soup. Put the ginger on top of the celery in the colander. Go lie down.
  5. Place the paper towel on top of your small plate.
  6. open the pot with the simmering soup. See if there’s any scum rising to the top. Scoop that away with your scoop and dispose of it on the paper towel on your small plate. Repeat this process untill almost all of the scum is gone. This scum is white or yellow or brown froth. It consists of nasty big molecules of protein that your body doesn’t like. It’s not fat. Fat is good.
  7. When the scum is mostly gone tip the colander in the pot. Add pepper. Put on a simmer and leave for a couple of hours.

 

The gelatine in the soup is the main health benefit. And something warm. And fat and some protein. The ginger facilitates digestion as does the vinegar. The salt is very important for the adrenals and for the low blood pressure.

I keep the big pot in the refrigerator and take out small amounts that I warm up on the stove in a small pan. Just two big scoops, enough to fill a small bowl. This is my break fast and my dinner.

At lunch I eat chocolate ganache and whipped cream. Once a week I eat fish, I make a stew of it with zuccini and koreander (again a gelatineous dish).
As I am more physically active now I eat more carbohydrates: apple pie; commercial chocolate figurines and salted chips (crisps if you’re British). I also eat chips once in a while (fries if you’re American). Sushi once a month.
Oh, I should tell you about my MarvelSushi!

recipe Marvelsushi

  1. place a slice of roastbeef on a plate
  2. sprinkle salt on it
  3. add a slice of pickled ginger
  4. add wasabi
  5. add a third of your finger in full fat butter
  6. roll up. Let it come to room temperature. Enjoy.

I take care to choose ginger and wasabi (and meat) with no additives. The ginger has a bit of sugar in it but that’s ok.

So still I don’t eat a lot. That’s ok because digestion takes a large portion of my energy and I’d rather use it for something else.
I’m also convinced human bodies are better off without carrying around a pound of food in their tummies. I have no bloating and my belly doesn’t hang over my belt. I’m not skinny either, oh no. And I’m never hungry, except when I’ve snacked too much or too sweet. Right there is an illustration of dropping blood sugar that rose too high. I probably got my insuline flowing than and am storing fat. (it’s what happens with the “food coma” people sometimes mention) I try and sit out these rides. I go outside, have a look around. But whatever I do, I try not take another bite. (I don’t always succeed)

My poo is excellent. Small dark marbles, all soft squished together. A sign my bile is flowing and digestion is good. I aid my bile with HCL during meals.

Sometimes my belly hurts. It’s any time I eat something with vegetable skins (oats, nuts, seeds, vegetables). I get bloating and it really hurts. It will easily take a week for things to settle again and during this week I’m tired and sluggish. This now has made it easier for me to stay away from these food stufs.

AGING
I’ve noticed I’m entering middle age. My belly skin is getting that papery fragile look. If I eat more calories than I use up it settles in little soft bags on the side of my upper legs. If I don’t eat enough protein my muscles grow weak and my hip starts to hurt (also if I don’t take enough magnesium supplement or have had too much dairy products)
I finally got a set of glasses that addresses both my double vision and my need for reading glasses.

I know I’m entering middle age not because I need reading glasses but because I settle for “good enough” instead of optimum.

SLEEP
I sleep better now. After all these years!
I’ve participated in a sleep study. It ruled out sleep apneu, snoring and restless leg syndrome as causes for my insomnia. They could not explain why I lie awake and have done so all my life.
They did establish that I do get through all sleepstages. That’s good to know. I did get to REMsleep after the bout of insomnia which is a bit weird because usually you wake up after REM and before you dive back into another cycle.

I’ve gone into Sleep Restriction Therapy because it’s an effective therapy although experts don’t know much about sleep or why it’s helping. SRT is all about restricting the time you spend in bed so your body realizes it better utilize that time and sleep. I go to bed at half past ten every night and rise at half past five.
This is a harsh therapy and should not be done by anybody suffering from full blown CFS.

I started it over the Summer when I had time during the day to be sleepy. (Didn’t take any naps though, that’s part of the therapy).
Whatever the results, it taught me that sleep is malleable. Pliable. And has much to do with your every day state of mind.

I don’t sleep through the night. But I might.
Whenever there’s a mosquito or a snoring husband or a whining cat or inconsiderate people outside I’ll wake up and have my usual insomnia for an hour and a half. Then I go back to sleep.
Also when my body is out of sync (because I overdid it or have eaten wrong foods and upset my stomach) I’ll lie awake.

However, when my intestines are fine ànd I am calm and peaceful then I will sleep through the night. And my bed/my body needs to be clean and of comfortable temperature. (dust, dust mites, kelp, thyroid)
I’m no longer trapped in that fixed rhytme of 4,5 hours sleep, 1,5 hours awake and then a couple of more hours of bad sleep.
Things are pliable. Sleep is pliable.

I’m continuing with the restricted sleeping times. My light goes out at 23 hours and my day starts at 6.30 hours. It seems I’m someone who does better on fewer hours of sleep. 7,5 hours are good. Longer makes me sluggish. But I’m not sleeping all night every night. I’m still in the process.

What I hadn’t reckoned on is the importance of emotional state on sleep.

EMOTIONAL STATE
I had early on realized part of my chronic tension and my insomnia had to do with not feeling safe. Not in the world, not in my body.
The Sleep Therapy Psychologist gave it its name: lack of basic safety (“basisveiligheid”)
With that I found a psychologist’s world of knowledge to explore. I’m summarizing what applies to me, not others:

My lack of basic safety has lead to an unhealthy way of attachment (“onveilige hechting”) meaning I’ve resorted to living strong and aggressive and not needing my parents. I’m alert all the time and have emergency plans and contingency plans for every eventuality. Also for every absurd eventuality like a meteor coming crashing in or a long time neighbour suddenly drawing a gun and going berserk. I’m prepared for worst case scenarios. Living like this takes a lot of energy (hence adrenal exhaustion in later life)

I’ve done EMDR to deal with the hurt and grief of the baby that missed out on feeling safe. EMDR is amazing! My GP marvels that it’s the only therapy that works and he explains it likes this: you occupy your working memory with the clicks or the visuals while you revel in the (dire) emotions of the trauma. The brain cannot facilitate both processes and somehow dampens the emotions in favour of the occupation of the working brain.
I did it on my own, sitting under the tree. I watched my thumb while I moved it in front of my eyes. Then I went into the emotion. It was not nice to be in the emotional place of that baby again. Not nice at all…
But I had faith in the therapy and after a couple of minutes I felt the grief and desperation lessen. The whole process took maybe 15 minutes. It was hard.

After that I could look back at that babylife of mine and new thoughts found room to blossom. Thoughts about my parents, how much it must have hurt them, not coming to my aid. Thoughts about how clever that baby was -and its body- to come up with a solution to survive in spite of missing that basic premiss of all good living: being at home in your body and at home on the planet.

Having dealt with the emotional side of things I wanted to connect with the subconscious and/or nervous system side of me and install that sense of basic safety. I think it will bring my nervous system much ease and calmness. Processes will run smoother.

Not wanting to go to think/talk therapy because I’m too clever in my head I looked for ways of connecting to the subconscious that didn’t involve psychotherapy or the rational approach.

The Sleep Psychologist proposed Motoric Therapy. He explained what it was and it send me screaming for the hills. “A therapist will slowly close in on you and in the end he will hug you.”
After some research I understood why this idea makes my skin crawl: it is contra-indicated for people who are negative attached the way I am. It will make things worse.

I proposed Hypnotherapy.
I felt really ready for that. I found a therapist and we clicked.
But unfortunately she didn’t deliver what I had hoped. Not knowing much about this kind of therapy I had asked her to instruct my subconsciouss it is safe. My subconscious loves an authority figure and any instruction echoing the truth would be welcomed.
But the lady has not done so. She was afraid it might skew my assesment tool for general safety. She had an example of a man with diabetes who felt so safe he stopped taking insuline.
Clearly I had failed to explain on what plane my problem is. Preparing for unprobably meteorite crashes is something else than denying existing illnesses.

Instead she guided me on two trances, with strong shamanic colouring. This I can do on my own easily. Effects did not linger and it was a waste of expensive money. :(

A friend brought Body oriented therapy to my attention.
That’s where I’m at now, I’m working through the book of Levine.

AUTISM
I was up for diagnose at the Autism Centre in Utrecht that specializes in Autism in (adult) females. But after reading the surveys I can tell I’m not in the middle or the extreme of the spectrum. I have traits of the start of the spectrum for sure. Even traits I did not realize where indicative such as pulling on my eye lashes which will calm me down.
However I decided not to pursue a diagnosis with them. For one the treatment they offer solely consists of explanations of Autism and courses in Mindfullness. Both of which I do not need from them.
Secondly, the survey that a close friend had to fill in about me was horrible. The words, the atmosphere. Awful.
Thirdly, I don’t have a close friend or relative who could fill in questionaire …. no one has spend enough time with me in the last couple of years to be able to answer their questions. Which were horrible anyway and wouldn’t want to expose my friends to.
“When you come and visit the female, does the female offer you something to drink?”

I spend time at AspergerExperts.com and learned a bunch.
Good site.

I concluded my “autism” is malleable. I don’t think it’s ingrained in my brain structure. I think it’s more in the software: in the neurotransmitters and in the hormones.

HORMONES
I think I had an encounter with perimenopause…. Twice. Got my period a whole week early, twice. This has never happened in 10+ years (and I’ve been tracking!)
First time was after the EMDR/emotional week. Might be connected to that.
Second time was after an amazing weekend at a retreat with the Dutch National Wool Spinners Guild. I met all my friends, had a lovely time, extended my stay, drove to and from the venue myself, ate weird things.
And afterwards, I’m a little bit ashamed to say, I did not take to the couch.
Instead I embarked on a full week of spinning wool which requires me to sit up straight.

Lots of people get ill after these weekends. Little colds flare up. Exhaustion. People need a pyamaday. So it’s to be expected.
But getting my period… I was not pleased. Because I dread perimenopause.
Oh well.

Otherwise I’m handling my hormones acceptably.
It is hard though. I can’t take anything I feel seriously. Any feel of dread, doom or despair is hormonal in essence. I have to weather it. Keep breathing. Don’t try and solve it.
The one thing to do is to get physical active. That will aid the body in levelling the board.
But it takes willpower to make it happen, physical acitivety.

LIFE
Trying to keep an emotional balance in spite of fluctuating hormones and experience how I’m basically safe and also something another person might call mindfullness nowadays I’m thinking at every turn: “I am here. I am now.” It helps to be (in) my body. It helps to see en enjoy the things around me right now instead of the things in my future where my mind usually dwells.

Often my thoughts and my feelings stray away and I see how life unfolds, how things are, and I feel sad about things we are losing. Species, spaces, traditionals, stories.
I try to turn my thoughts around, focus on here and now, on the wonders that surround each of us in the here and now. Hoping my feelings will follow.
But it’s hard.

The mind keeps predicting what will happen. We will get more traffic, more people, more houses.
More people will escape into their monitors and game devices and enjoy a mental life online or emerged in games or documentairies.
I will grow old and loose more of my bodily abbilities and one day I’ll end up in a facility where other people will determine what I eat and when I eat. Overthrowing my optimum diet.

I see that’s how we live. And that’s ok. We live mediocre. People in extremes

I see how people fill their lives. How cat fill their lives. It tells me something about the essence of life. The essence is not getting a goal.
the essence is in being in the moment. Experiencing the and through the body.
but words fail me. And I don’t want this to be al sagy and life motivating and atracking more people who make money by getting followers online and dishing out life wisdom in one liners.


JOB

These six months were meant for me to flounder around. Do nothing. Enjoy the day.
That has been a hard task. I find it hard.

Especially now there’s more room in my days, in my head, to do something. Suddenly having a job is back on the table.

I’ve been thinking about it. What kind of a job. What would suit me. I dabble in some activities. Fell flat on my face because ambition creeped back in and sucked all the joy out of the activity. I felt guilty. I feel guilty.

I still struggle with this.

THE NEXT SIX MONTHS

The next six months are meant for more floundering about. More healing, more recovery.

Install that better sleep permanent. Come to terms with doing more in a day yet still balancing rest and pacing. Clearing away more of the emotional clutter (there’s still a portion of relationship-stuff to be addressed and revived). Getting the house and the cabin in good shape.

Getting through the dark winter months. Managing hormone levels. Hoping to get some sort of health level established, as a base for approaching middle age.

Dealing with the tremendous fear and worry I’m wrecking my body. Yes, I’m still scared.

So see you back on the first of May 2015, when I’m one year in recovery.

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