Donnerstag, 1. Dezember 2011

Still looking...

..for the rights words to express, what I want to say.

Last night was one of those semi long nights.
You go to bed, you try to sleep and suddenly are wide awake, heart racing, muscles spasming... and you have no idea why, only that you can´t go back to sleep again.

You hear me sigh.

And still no idea why.
People (read: the doctors) think, it´s anxiety.
I think, it´s something in my spine, that is very very weird.


Now you need to understand, my spine itself isn´t weird at all. It´s a spine. It looks like a spine and acts like one.

Only it has alot of joints. And that is where things can go terribly wrong, when you have Ehlers-Danlos-syndrom.
My ligaments are too soft. My joints are unstable.
My spine is, my rib joints are unstable.
And they move around like a bunch of four year old on caffeine.

And then they get stuck. And my muscles are pulled in alot of way, they were never ment to be pulled.
And they cramp.
And it´s godaweful and it hurts.
Ever tried to breath, when your upper torso muscles were stiff as wood?

that´s what I think is happening.
Und we´re kind of unable to put the joints back were they belong, because of the cramped muscles.
Actually we´re not even sure which joint is at fault.
How much does that suck?

Let me tell you.

Thank god for the internet. Thank god for knowing, there are always people worse of.
Thank god for knowing that in my little corner of the world of faulty genetics, there are neighbours like EB or Marfan Syndrom.
Thank god for understanding, it could be so much worse.
But still it sucks.

Yesterday was bad. The whole day. My neck cramped up so much, I had some kind of constant micro migraine going on, combined with the lack of sleep that amounted to some major depressive episode.
But sitting on my living room sofa at 2 am, hoping my man had at least a little chance of finding some sleep, without me kicking him awake all the time...

I decided that wasn´t worth it.
The anxiety that comes with being in pain all the time, the feeling that my body is totally failing me, the uncertainty of not knowing what the fuck is going on...
It was time to get back some resemblance of life. Bit by bit.
It´s not worth to hand your whole being, your whole sense of being over to an illness, to your broken, malfunctioning body.
Be ill if you are.
Be broken, if you are.
But don´t be your illness.

Wow, the scraps of wisdom, you find at 2am in the night.
If only they survived in daylight.
I will see.

For the record: I´m tired. I need sleep!

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