Montag, 5. Dezember 2011
Head hurts. Thoraic spine is all fucked up again.
But for the rest.
No inflamed ligaments, no random joint pain.
Even managed to convince myself that my new skin care regimen helps with the micro inflammations on my facial skin.
Got some time for random thoughts. At work of all places... I mean, were else would I start thinking about special needs?
http://www.schuylersmonsterblog.com/ got me thinking.
I´m a very faithful reader of this blog. One of many I´m sure.
ANd today it got me thinking about special needs adults.
I mean... everybody is talking about special needs kids.
Are there special needs adults?
What actually are we?
Do I have special needs?
I don´t usually think of myself as disabled.
Often less than full funtioning, absolutely.
But special needs?
I don´t even have a disabled person´s paper. (You get those in Germany to proof that you really apply for disabled benefits like reduced prices and such)
I can´t truly wrap my head around this idea.
But then... I function. Most of the time nobody notices that something is wrong, or just how much is wrong.
Not even my man.
And he is the one who lately lamented, that he couldn´t stand the pain I was in anymore and there had to be something to help me. (isn´t that sweet?)
So, do I have special needs?
I don´t need a wheelchair (yet and wont hopefully ever), I sometimes need some of those fancy joint support things (mostly wrists, since I haven´t yet found one that really helps in keeping my shoulders settled and I am just too freaking stubborn to wrap my feet, ankles and knees and there just isn´t anything to keep my pelvis/spine joint in line), I need alot of walking time at work, because sitting for prolonged periods is hell for me and what I truly, desperately and totally need is a little downtime now and then... and just a bit of understanding.
Is that special needs?
I might have gotten through my childhood with those just fine, since I didn´t have any of it and through just as well.
Seems, like I´m not special needs at all.
Just a little more broken than others.
But then, why I do feel so much at home, when I read about all those kids who need a little more, a little something else, than the rest.
Would I be as broken, as I am now, if anybody had notice, what was going on inside my crazy body?
Now, I´m just walking on, no matter if the nerves in my hand are acting up, as they´re doing right now (and there goes the feeling good. Bleh), no matter if my joints are killing me, my muscles are spasming like there was no tomorrow.
I just go on. Just like everybody else.
Question still not answered. Perhaps I need a little more. But I can get by, just like the rest.
It´s December already, btw. January is Lothaire time.
Yay, Kresley Cole!
*whispers* and soon it´s Christmas!
Freitag, 2. Dezember 2011
Her eyes narrowed in annoyance.
Everybody seemed to just expect women to fawn, whenever a manly piece of well built flesh told them, they were pretty. To her? It never had mattered.
She had never cared for being pretty, had never been the princess, always only the heroine who fought, saved people and, most importantly, won.
And no matter how good looking, ruggedly, sun tanned, ruffled good looking, the guy reducing you to your looks was, she still didn´t care for it.
Grabbing the handles of the wheelbarrow, she cast a quick glance over her shoulder.
"Thanks, so are you"
When you buy a set of keyboard and mouse, in one package, how can you complain, that you didn´t receive your mouse yet, just a keyboard, and demand proof of delivery for the mouse, when you haven´t opened the package yet and checked, if there is a mouse inside, because after all IT´S a FUCKING BUNDLE PRODUCT!
Sorry, had to get it out of my system.
Donnerstag, 1. Dezember 2011
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!
Mittwoch, 30. November 2011
Not today though.
Today was an extremely shitty day.
Crazy customers, crazy boss, crazy colleagues and stupid friends who just keep complaining how taxing their school is and that they want hollidays, while I don´t even know how to START reducing the pile of work that has been dropped on my head.
Thanks, guys, but I´m not the world´s dumpster.
It´s not my job, to make you feel better, no matter how bad I´m feeling and it´s NOT my job to be nice about it.
I want to be a bitch today.
What got me through this week was Nalini Singh. Thanks for that.
And for a bit of inspiration.
But Characters are from her Psy/Changeling series. If you haven´t read it yet, start now.
Freitag, 25. November 2011
Wow. It´s been that long again.
Had some major health troubles. Lots and lots of work.
Didn´t write. Going through one of those "I´m not good enough at writing anyways" phases.
But I´m still around ;)
Just need to make the time, to write.
Since I spend every spare minute reading right know, that´s difficult.
Right now It´s Nalini Singh.
But from January to May, it will be Kresley Cole.
LOTHAIRE IS COMING!
And good god, I read the excerpt. That is one batshit crazy hero.
I´m in love.
Dienstag, 19. Juli 2011
I'm a huge soccer fan. No secret there. And as 90% of soccer fans i'm supersticious. We all believ e, that somewhere out there is a deity, handing out impossible wins to those who deserve it.
Now and then much needed miracles happen, when we all wipe our eyes and suddenly believe in something bigger.