9:14pm April 9, 2013

So I just got up to the commode.

And earlier today I got into my wheelchair.

People wanted to give me more help than I really needed. Funny how that works. They spend all this time calling me lazy and giving up and then when I want to do it myself they won’t let me do that either. But I did it. And I’m getting more confident in how to move to avoid horrible pain.

So next the big battle is getting used to this, and then getting home without some asshat from either of the agencies that serves me trying to fuck up my living situation because they’re afraid of the EVIL TUBE MONSTER.

I was trying to explain today. It’s just a mouth it’s a mouth on a different part of my body. It doesn’t mean anything. It’s not that hard to take care of. I don’t need twenty four hour care instantly just because I have a tube. I don’t need to move out of my house to some “home provider” who will set all the rules of the house and create an institution of one. I don’t need a nursing home. I just need people to get trained in how to handle a tube and not wig out at the very prospect.

(I swear I told my case manager about this new suppository I can get that will reduce my nausea meds by a lot. Instead of being happy for me, she freaked out about who would give it to me at night. As if I can’t stick my own finger up my butt. I may not be able to clean back there without a bidet, but I damn sure can find my own asshole. Seriously. WTF. I haven’t become this huge health risk just because I have a tube. I haven’t changed. But everyone around me is changing in alarming ways, they want to change my entire life just because they’re afraid of the fucking tube.)

On and bonus points? I’m not so deconditioning from a week in bed that I can’t shuffle to the commode and back. Seriously. What do they think would happen in a week or two? I’ve gone longer under worse circumstances and brought myself back. And I brought myself back from this one without a single damn physical therapist doing a single damn useful thing for me. So they get no credit and I get all the credit and every person who pushed me to do this is responsible for keeping me back, not helping me forward. Leave me alone and I’ll figure things out, get up in my face and I can’t do a damn thing.

Not that it wasn’t hard. Not that I couldn’t have used the help. But what they tried to do to me wasn’t helping. And if any of them think their constant nagging did me any good, that’s why I practiced in the middle of the night where nobody could see me. Because nobody would leave me alone if I practiced in front of them.

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