Sunday, May 2, 2010

A Tirade. Long overdue, actually.

So the blog has been lost along the way... piled amongst all of the things left unattended in my existance. So, I blow off some dust and cover the last five months. I didn't even bother to read the last post, cause I bet I know what it says. It says what it always says. I hurt, I can't do it all anymore, something has to give or I'll break, and I'll cling on to this shred of hope to keep from going insane. Whatever. I'll keep telling myself this, as long as I, and others, keep buying it, but it's bullshit. There is no hope and no hope from going insane.

I saw the neurosurgeon. I liked him, he made sense, and offered no solutions. But, I knew there are no solutions, so I don't blame him for it. He tapped me and it was "normal" which makes him weary of shunting because I'm still symptomatic. Small theraputic window. I get it. He did offer to do it anyway, but I'm looking into his suggestion of seeing a Bariatric doctor. I almost see it as a professional courtesy. I don't know how I feel about gastric bypass, because as I've alluded before, there are no solutions. Just desperate grasping at anything that may make my existance more tolerable.

The tap did make my life much easier to live for a bit, but that has passed. This says a shunt probably could help. I sit now in a weird mix of discomforts brought on by events of the week. Wednesday I had to work about 12 hours. A few kind peers urged me to go home, but I didn't feel comfortable in making this request to my employer. Then the barometric pressure began to change. As it rains now, my head feels like it will burst, my neck is sore and stiff, I am sick to my stomach, and any change in the angle of my head causes my eyeballs to swim. I think I might have to have a talk with disability intervention. As this is a public forum, there is more that I wish I could just pour out, but such is the nature of discression. I'll just say I'm dealing with some shit.

And I've noticed my cognitive issues creeping back. I've gotten really good at glossing over it when it happens... like feeling completely disoriented or calling something by the wrong word. It used to freak me out that everything would stop until I could retreive the information from my ill-synapsed brain. Now I keep going as if it didn't happen. Takes me forever to write shit like this. This is the part that really saddens me, cause I've always had a love of words.

The neglect of the things I love are starting to show atrophy. There's the obvious... my children. The average day at work takes so much that there's little left over. And that's when it's not raining. I get why they are angry at me. I get the attention seeking behavior. I wish I had the strength to put my boot up their butts as well as cook dinner for them every night like I used to. I won't even get into the state of my house. When I do get up enough gumption to do something, it's never enough, and it only gets trashed again. Futile fuckin losing battle. And I realized tonight that I haven't painted in weeks. I've even gotten some new supplies, and am about to go to a conference, but nope. Not felt decent enough to get a cup of water and my paint and do something. Shit, I entered a challenge the day after my tap. I was pasty green, flat on my back, but I painted anyway.

I wish I just had pain. Only pain. I can deal with that. On the 24th, I'm going to drive to Florida. From Wednesday to Sunday, I'll probably try to push through 16 hour days to soak up as much art and knowledge as I can. Then I'm going to drive back. I hate highway driving. Speed over 60 mph makes my head worse... over 85 and I'm done for. And the mountains... oh. Changing pressures. I fear I may need to put the shunt in myself when I get back, but damnit, I deserve this for myself. I deserve a week in Florida, in the sun, learning and doing what I love. I hope I can survive it.

But I don't want to give the idea that I'm giving into despiration. I'm only giving a voice to what normally is spoke as "I'm about the same as usual." I will get up in the morning, at least I probably will, and push on as I always do. Keep moving, even though I'm not getting anywhere.

It'd be easier if people didn't keep making it harder. You know, I'm really sorry that my chronic condition is inconvienent. Or that it's lasting longer than some had hoped. Or that some of my symptoms make it difficult for me to remember to do something that really isn't in the realm of my responsibility in the first place. Or that some really don't care too much for the Americans with Disabilities Act. Or that I can't cook every night or even carry laundry up the stairs. If people can't see that I'm doing the best I can with what I have, then fuck'em.

And now... It's 9:59 and I'm sleepy. I'd like to lay down and get some rest, but being horizontal makes my head worse. I have to wait until I'm ready to pass out... but wait! There is hope after all. I just remembered there's some alcohol in the fridge (if my son hasn't discovered it anyway). That will help me pass out.

Good night everyone. All my dear friends who care enough about me to read through this mess. Who are present with me enough to match my volume when speaking. Who ask me how I'm feeling, and I know (even though I may respond with the usual) you really care. Who pay attention to my cues, even when I'm trying to fake to get through the moment. Who advocate for me. I love ya'll.