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.

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health holding steady at 75%-80%

It’s holding! My health is now steady at 75 or 80% of what a normal healthy person has.

Sleep is continiously good now. Unless I eat something wrong.

Belly is good. Unless I eat something wrong or have days of excitement/stress such as the winter holidays.

Since it takes days if not weeks for my gut to heal it’s now not very hard to decline things I shouldn’t eat. As long as I remember to bring butter, chocolate or whipped cream I don’t feel left out either.

The hardest thing is to concede to the limitations of this life. Of course everybody has them, limits to their life. Nobody can do everything they want to, there’s simply not enough time in a day!

I have found I can do now 5 things in a day. Not more. Anything more I plan must be assumed a frivolous wish.

The list I must chose from:

  • take a little walk
  • take a shower
  • change the bed sheets
  • draw something
  • sew something
  • design something
  • write something
  • felt something
  • spin wool
  • wash wool
  • write a letter or card
  • make a phonecall
  • drive somewhere and back
  • visite the shops
  • clean the house
  • do the laundry
  • cook dinner
  • bake something
  • have a visitor
  • be a visitor
  • write a long blogpost
  • have a bath

only five things a day, I must chose carefully. All boxes need to be ticked: self maintainance, house maintainance, “career”things, social things.

I’ve started a little notebook or gratitude journal to note the 5 things I do each day. So I have something to counter the feeling I’m doing nothing and failing my to do list. It’s a simple tool but it works for me.

You remember the Spoon theory. I have five spoons now. And luckily they are much bigger than they were before. Getting up or getting dressed no longer requires a spoon. What luxury!

 pic by P�ivi Rytivaara

I still follow my own tips for preserving energy which I wrote down 2,5 years ago. I just realized as I stumpled across them.

Which is why I’m not offering the link to the Spoontheory right now. Because I couldn’t find it right away. And you now how to work the Google.

Learning to be well.

It’s been 4 weeks now since I figured out my ME. I’ve been recovering ever since. My activity level compared to a healthy person soared up to 70%.
I’ve been doing stuff!

The last two weeks I had several knitters over for day long visits. I baked cakes for them and cleaned the house and had gone out and bought gifts and did the groceries and returned to the store the same day to pick up something else I needed. I showered.
It was amazing!
Last Friday I topped it with a visit of my own: I took a 2,5 hours train ride to a knitters’ house. Stayed there all day at the wool party and then took the train back.

That was a bit too much for me and my body.
At the end of the party I burst out in tears because I was too tired. I was much embarrassed because tears did nót fit the mood at that party. Luckily they know me and my condition and knew it was my body crying, not me.
But I still had to travel back to home, cradling my overwhelmed body and exhausted mind. We did it, my body and me. We arrived at my home town and my husband was there to pick me up at the station. He brought me home, he had already put tooth paste on my brush, and 4 minutes after I stepped over the threshold I was in bed, asleep.

Now I’m in the recovery zone, recovering from these two weeks in which I pushed the envelope. I’m not complaining (much).
I’m amazed how well I spring back from all the tiring things. Even with the collapse in Friday -which wasn’t a crash so well done, team me!- I managed to drive to the cabin by myself on Sunday. And I’ve been busy here. Doing laundry and cooking yesterday, both on the same day.
I skirted a dirty sheeps’ fleece on Sunday!

This is really weird.

So yes, lots of activity, even while recovering from two tiring weeks. My digestion is not well, with all of the cakes and wonderful stuff I ate. So it’s back to chicken soup, I made a big batch yesterday.
I have all kind of aches, my body would really like a warm bath. I’m picking up my daily walk again today, movement will help getting rid of aches and waste drifting in the blood stream.
I’m doing well with the Hydrocortisone, judging by the mad skin reaction to mosquito bites and oven burns (baking cakes) I have not suppressed my immune system.

The most wonderful thing about all this is that I actually have to LEARN to be well again.
First thing was imagining how it is to be well. I had not done so in many years. Not that I was lamenting in all the things I could not do all the time. Comparing what I wanted to do to what I actually could do was just not something that took up residence in my mind. There was the regular disappointment when I had to decline an invitation, again, or back out of engagements. Those were times of hot tears.
But hot tears dry quickly. I never laid around for long, pining for the time when I used to be able to do alllllll these things and now I can’t and boohoo.

Now I do. Now I’m mentally exploring what a healthy person can do in a day. What I can do, soon. What I would like to do. What would I like to do?
What now, will make me sing and cheer and jump out of bed and start the day eagerly?
It’s a freeing line of thoughts to follow.

(Again I’ve stumbled upon an area of thought that shifts the way I see the world, making it once as big, without actually changing anything in the physical world or in my daily reality. I’m amazed at how much there is to explore in the mind’s world.)
(Other such experiences I had were:

  • when I first started to see a city/architecture as a sequence of spaces instead of masses. Spaces allow movement through them, people moving, with their eyes seeing and their bodily mass associate to the masses around them, being it architectural or human masses.
  • when I used magic mushrooms -one time only and it aroused a dangerous interest in a repeat experience which luckily I did not pursue, more by chance than by smart- and I realized my eyes do not portray the world as it is. I saw colours and shapes in ways I’d never seen before. It told me the world is more than and different from how I see it and it started thoughts about being an entity in a world but not off this world, not in the way the senses suggest. Basic philosophy stuff, but quite different when approached from an emotional perception than dry intellect, as I had done up to that moment.
  • when I finally slowed down, here in the cabin, ill, dazed. Finally stopped absorbing the news and caffeine and the urban way of life and career opportunities and getting ahead and having goals and planning my days. When a day would just float by and I’d be. Just be. Just like the cat is. Like the tree is. No stress, no plans. There’s a whole world opening up once you just “be”. And I’m of a mind that it may be the true world, the way of our planet through all its scales and subjects of science. The world all other life lives in. Ought to live in. And that humans are the odd ones out, running our monkey business because of that brain we’ve got.
  • first time turning a heel when knitting a sock. Forging a 3D shape out of plane constructions is magic. A magic you can tailor to the specifics of your body. Suddenly you are a creator and a fashion designer. Linked with all garment makers that came before, which goes back straight to the very beginning of human existence.
  • first time driving my own car on the motor way. Freedom! I could just keep on driving, I could I could. And: operating a machine to bypass the body’s limitations. It’s what we humans do. It’s what female aviators did, a hundred years ago.

Anyway… )

LEARNING TO BE WELL
Now I find I have NOT gotten more hours in a day with the more energy I’ve gained.
If anything, the process of choosing and setting priorities has become more pressing. Because there are more opportunities and options.

Luckily I’ve trained a bit for this, while being ill.
I now realize I could pour all my new found energy and time into getting my house clean, into getting a well coordinated garderobe or into knitting all the yarn I have.
It’s so easy to loose your day in chores, administration, keeping up with people, keeping up with the news and getting things done.

Instead I will have to live in a house that’s not much more tidy then it was 4 years ago nor will I have perfect garments and I will probably die, a hundred years from now, in possession of some of the same skeins of yarn I already have.

Instead there’s that one golden hour a day, right after breakfast, in which I can do the thing that matters to me most.
I have to learn to leave all the other stuff for later. And figure out what it is that matters to me most.

You already guessed it has to do with art, illustration and producing something. The weird thing is that for the past 3 days I’ve set aside that Golden Hour for just those things. But I don’t use it.
I squander my hour on stuff. The internet. Letters that need to be written. Appointments that need to be made. Laundry that needs to be done.
And I find myself at night, sitting at the edge of my bed, quickly scribbling the drawing I had planned for that day. Or any drawing.

It seems I am afraid of doing the one thing I like to do most. I excel in distracting myself. In finding excuses.
Like today. Today I wrote this post and now I need to rest up (remember the past two weeks). Surely there’s no occasion to draw today…

It probably has to do with assigning to much weight to the choice I want to make. I’m planning again. Not being. What a strange new world!

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

Running Scared

I’ve got two kinds of scared going on at the moment.

One is a result of the gruesome murder mysteries I watched on my first night of a fortnight alone in the cabin in the dark, dark woods. Not so smart.

Two is having some success at treating my disease but not finding many people who recover from it permanently. As in… there may be a hand full of them out there. World wide.
Most people who make a good recovery only find themselves crumbling to pieces a couple of years later.

I am really, really scared.

pic by Ron Jeffreys

WATCHING SCARY MOVIES WHEN YOU’RE ALONE:
It’s the first night I’ll be sleeping alone again. I’ve been spending the last couple of weeks together with my husband, with me being in the city and all. There’s a good comfort in sleeping in a room with someone else. At least there’s one other pair of ears to hear trouble coming.

But I needed some time alone. To recuperate from the city impulses. To experience silence. To be alone with my thoughts. And to please the cat who loves to be here, in the cabin, and is pretty bored in the city.

So here I am. Two weeks in the cabin. Shifting from city-glamour-fairy to nature-knitting-gnome.
I was a bit bored on the first night, having to lay on the couch, so I watched some British murder mysteries. That’s allright.
Then something out on the porch went “boonk.” And the cat woke up from her slumber, looking worried. When she does that, that really freaks my out.

pic by Angel Norris

I had to relearn all the things I learned the first time I started spending time alone in the cabin here. That I am like a bird, hidden away in it’s nest. That I am invisible to most of “the people out there”. That I have a leftover habit from childhood of not having a basic sense of safety. That statistics are on my side: as I have seldom experienced a night with a burglar or fire in my life, chances are that this night will be a repeat of all those tranquil nights. Put your fate in probabilities, darling!
Put in your earplugs, make like a woolen blanket burrito and go to sleep.


BEING SCARED WHEN YOU’RE HEALING

This is the real thing. This doesn’t go away with a solid bit of reasoning.
I’m scared because the things I do seem to be helping.

pic by Andrea Kratzenberg

The egg yokes and chicken soup I eat nourish me. The Zinc level I restored over the Summer works so well, I now crave Zinc every day. The Atlas Profilax, I now crave a walk every day. The laying down I do, my small intestine is so grateful. The HCL I take, my bile is working. The Progesterone I take, I am more at ease. The Progesterone pill I take at night, I am sleeping through the night. The diet I have, I have more energy and less moodswings. The mB12 and Folinic Acid, I’m working towards daily equilibria. The pacing I do, it gives me more good days and rekindling of some of my basic interests. The stress(y people) avoidance, works like a charm.

I’ve more or less created all the conditions for healing. There’s not much else I can do, it is now up to my body and time to get better.

That’s one scary thing right there: I’ve tapped into all the resources available. Conditions for healing are now pretty much optimal. Meaning: there’s nothing else I can do, I have no options left. This is the one basket, these are all the eggs.

Let’s hope this hand basket is not going anywhere bad…
pic by Slawek Ujma

Of course I’m hopeful that I am on the right track here. That I will continue to get better.
I even started dreaming of healing fully. Of growing old healthily.

But when I search for people recovering from ME/CFS I find but a few of them.

A lot of people make recovery. Some quite remarkably! They find a magical thing that works for them and they recover and start living life and raising puppies and running marathons.
But then they deteriorate again. Over time they grow worse than they were before.

There are not enough people permanently healed from ME/CFS out there! There should be more!

There’s a myth on the ME-boards. The myth of the invisible recovered people. We don’t see them because, when they recover, they leave the boards and start living again. They are enjoying their health. They have no time to return to the boards and tell us what worked for them. The myth is that people dó recover. But we never hear from them again. With good reason.

The recovered people who do return and tell their story are often met with skepticism and loud demands for solid medical proof. Or they are told to come back in five years because only then can one really claim to be recovered.
Or there’s just plain denial that they were ever properly ill to begin with. There’s a real ME-mafia out there that wants to be taken seriously by doctors and therefor shuns all associations with Adrenal Fatigue or CFS. They are quick to deny someone the diagnosis of ME.

But even if they don’t return to the boards to tell their story, recovered people must be somewhere. And they must be reminiscent and voicing that somewhere online. I want to find recovered people!
Because I have not yet. And that scares me shitless. Because all the recovering I do can be just that: a prelude to a disheartening relapse in my future. And if there’s one thing I never want to go through again, it is the first phase of this disease. When all systems fail, your personality is wiped out and you are withering away.
Especially now that I am all tapped out on resources. This is all I’ve got.

I’m scared.

pic by Maciej Perek