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).

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5 thoughts on “Looking back at my CFS/ME

  1. Impressive! It makes so much sense. Such an encouraging story for anybody: never give in! In the tiniest inner space some kind of Rose will find us, somehow, some day. Hope that you will start your arty posts real soon.

  2. Pingback: 1 Augustus: looking good | Alive At 42

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