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

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.


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


3 thoughts on “Running Scared

  1. I know of people a short distance from my home who have managed to fully recover from ME/CFS… all of them have different stories, different things worked for them, for the most part it was a case of TIME… some it was five years, others more… I believe someday I will join this group… there is always hope through the murky pile of this disease. xx

    • that’s so good to hear! I am hopeful we’ll both recover, we both approach this with sanity, patience and humour. That’s the way to go, no fast magic healing and then crash. We have a good chance!

      It’s just that I have all my ducks in row now, there’s nothing left up my sleeve. No great mystery left to solve (except for maybe mitochondria). Now it needs just time and dedication…

      I give it about 5 years to work. And I have amended my goal. Full recovery no longer means living like I used to live. I’m sure you understand that one! :)
      Sure’d like to run again some day though

      • Totally agree with you re the readjustment! I would settle for a lot less than I previously had, and not only settle, Id be delighted!!! Fingers and toes crossed for us. We deserve it!

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