Sunday, February 21, 2010

Coke at 1:38am

I know. Caffeine at night, not good unless you need to stay up. And I don't want to stay up.
Sleep is great. I love it. No pain when I'm sleeping. Well, sometimes my dreams end up with me stubbing my toe or something, but its not real pain. Not as bad.
Lately, though, sleep seems like a pointless use of time. at least during the night. Is that weird? Yes. it is. But I'm half sleeping all day, but as soon as the sun goes down, I can't make my eyes stay closed.
So I take my laptop downstairs, pop open a coke, switch the TV to something decent (late late show with Craig Ferguson is always a good choice, and then Will and Grace, then an episode of NCIS, then House, then Much Music video flow.), and write.
I quite like writing. I think I like it because it changes things. I stop being myself, and I become whoever I'm writing about, and that's just... a great feeling. Sometimes I don't even feel the pain, and it seems like my hands stop shaking, even though I know that's impossible. The nerves in my hands are messed from the CMT (charcot marie tooth) and they shake, or tremor.
But i think the weakness in my arms has gotten worse. I had a doctors appointment for my pre opp check up last week, and my main doctor, Dr.Lindsay, was testing the strength in my arms and hands, the look on her face...
Look, I'm not good at reading faces. It got me in trouble a lot as a kid, because I couldn't tell when someone was getting annoyed, or mad, or hurt by what I was saying or doing, so I would keep doing what I was doing till they yelled at me or started crying... but I can tell a little bit now, mostly from actually memorizing faces, and Dr.Lindsay's face was mixed between shock and concern... I think.
Well, add that in with the fact that I wasn't strong enough to keep her from bending my arm.
But anyway. A friend of mine came over today, and its getting really depressing to see her. For the past few times she's came over, she just acts so... different. I became friends with her because she reminded me so much of myself.
But I've changed so much since then. I became friends with her in the middle of grade 7, and now we're halfway through grade 10. Back in grade 7, I was younger. Okay, obviously, but I was younger in not only age, but in spirit.
Since then, I feel like I've aged so much. I like lists, so heres one about all the things that have added to my aging spirit;
-Basically being told that I have a uncuravle, untreatable disease that will get worse and worse and will hurt more and more until I die.
-My mom going back to work, leaving me to look after the house, even though I have a stay at home stepdad. He's majour injured, so he can't, like go to work or do anything around the house. Ya, he hurt his back. Yup. A hurt back. My mom has rhumatoid arthritis and fibromialga, and she worked full time, but he has a hurt back!! Sorry. I'm a bit bitter.
-I had soem problems with anxiety and depression. I spent the last half of grade nine not leaving the house.
-The woman my dad was dating stopped taking her medication for her mental illness, and she lost her mind, and left my dad, and took him to court for the house, then again for the van, then again for freaking spousal support, when they weren't married. I really liked her, i thought of her as my stepmom. I got pretty damn close to caring about her, and for me, thats a big thing. And then she just leaves and makes my dad move out of our house, and now I can't ever see him because he has to stay with a friend that I'm not really all that fond of (meaning when I'm in the same room as him, i get twitchy and nervous, like I do with all people I don't know that well.) and he lost a lot of money.
-My aunt died. She had a bit of a drinking problem, like a lot of people in my family, but she was about to go into rehab. Then one day, she went to go phone my mom to talk to her, and she had a heartattck two feet away from the phone. By the time anyone found her, she had gone intto a coma from hitting her head when she fell. They tryed really hard to save her, but her brain swelled so much she couldn't breath on her own. She was on life support for three days, then she was taken off. She lasted a day off it, then passed. To tell the truth, it was harder to watch my mom go through that then for me to actually go through it. My mom is really the one I care about most in the world. Shes not like other peoples moms, with rules and stuff. And she loved Leanna (the one who died) a lot. It was really hard for her. I don't understand the death thing, but more on that latter.

And my friend has gone through... well, she got a boyfriend, but she got annoyed with him and dumped him. Yup. Must of been tough.
but whenever I hang out with any of my friends, i end up feeling like I'm babysitting. Sigh. Well, I've been typing this for an hour, so I'm gonna post it. If anyone actually reads this ever, sorry for the rant.
24 days until surgery.

1 comment:

  1. Phew, what a lot going on in your world!
    I can't answer everything, but I wanted to write because I have CMT. I was diagnosed at 13 and the whole incurable, degenertive, scary future thing clouded my sky a lot when I was young. What the doctors don't say though is that there is a lot of time to explore and have fun no matter what physical challenges we face. I had that gloom (still do) but I also have tremendous creativity and a wonderful loving family. No one can predict how your journey will progress. But I have had symptoms fade, strength return, etc. when I changed my lifestyle- got more rest and less stress. It is a dance.
    I laughed at your desciption of the doctor's face- I've seen that many times! One time she said, "oh, the range for your age ends at 36 pounds of pressure (or whatever). You're at 34."
    "That's good. I'm close."
    She gave me that look. "You're off the chart. That's not good."
    Oh, well, what can we do?
    Keep being creative and have fun!