It’s been a while since I posted about chronic pain primarily because I still feel like a whiner even on my own blog, somehow. I’m blaming German stick-to-it-ed-ness and the fact that my grandparents lived through the depression as farmers in the Dust Bowl and probably ate pickled tumbleweeds without complaint. They were the boss.
I have a new medication. It gives me about three hours of low pain twice a day. This is good news. I now have six hours a day where I can be productive in a way I haven’t been in a while. There are some side effects. I can’t concentrate very well and I get super tired. I forget things and get flustered and double book and am generally not the best friend in the world to anyone. However, I get six hours where I can crochet, or read, or do chores, or play with the kids. Six hours when I can see movies or friends.
I am not sure when I began measuring my life in hours. I suspect it started after Michigan when I first got medication that gave me some relief. All I do know is I now think of my days in terms of how many low pain hours I can get. Do I schedule a movie? A party? Dinner with a friend?
I am blessed to have these hours. I have far more hours now than I used to. I am also sad I don’t have more hours and envious of those who do. You healthy people with your bodies who don’t prevent you from being anything you dream of. You people who can be at parties all night, see any movie you want, go to a rock concert or night club. Your vibrant lives flash before me and make my previous self cry out in recognition and despair.
I miss you! She says. I used to be like you! I want to be like you again!
You don’t measure your life in hours. You may not even measure it at all. I know I didn’t used to. I had the luxury of a limitless existence with nothing but my own ingenuity to stop me. Now I struggle to carve out a happy existence in a world increasingly defined by limitations.
I envy the freedom of your limitless hours even while I am happy you have them.
He used to play by himself quite well. If fact he would spend hours imagining entire worlds with his stuffies or even rotting his brain playing video games. He used to be self-reliant. Then he lost his favorite playmate.
She didn’t die or anything horrible like that, she simply grew up. The 5/12 year old who was there at his birth and grew to be his favorite person in the world became a freshman in high school and stopped wanting to play games with her now 8 year old brother. It’s a normal transition for her even if it is horrible for him.
He has never lived a life without a playmate – until now.
Which is why he now spends every waking moment of his time with me at my side demanding my complete and total attention to everything he does from changing the name of his character on the ROKU game we play to watching how much juice he has already drunk from his glass since the last time he asked me to look three seconds ago.
He is a velcro child, a snuggly burr, stuck to my side and refusing to let go without pain and discomfort.
He honestly feels he isn’t getting enough attention from me and his father because he used to get this huge additional attention from his sister who would now rather listen to music and read than pay much attention to anyone. Those rare moments when she calls him to her and asks him to join in an activity are like sunshine in England. He rushes to her side and soaks up the time and attention like a dry sponge dropped into a lake. The he dries back out in tearful spurts as she inevitably moves onto something he is welcome to participate in. He returns resignedly to me and I resignedly welcome him, setting aside my work/play/whatever to spend some time on only him.
I keep waiting for it to pass. I encourage solo play and even parallel play with me so I can get stuff done but all the self reliance in the world won’t replace what he’s missing. He is missing his sister’s childhood. His fellow adventurer and play pal. His best friend. His very favorite person in the whole wide world.
And she is never going to return.
This is some serious bullshit. I would love it if this post were about my sudden and inexplicable ability to shoot fire from my nose like a bad ass dragon but it’s not. Instead it’s about the sudden shift in my trigeminal neuritis.
Today when I woke up it hurt to breathe in through my nose and out through my mouth. It hurts badly enough that I have been contemplating non-death causing ways to stop breathing.
So far I have been unsuccessful in finding a way to cease breathing without risking death – which appears to be a serious design flaw in my body albeit one I have never contemplated before.
I am currently just pissed and trying to breathe as little as possible…
Yeah, I seriously just said that. I am actively trying to breathe as little as possible.
In self-care distraction news:
Tracy came down to take me to lunch and put up with dining with someone who seems to be trying really hard to hold her breath the whole time. (Thank you for your eternal patience and vast love!)
I tagged and organized all my jewelry for sale next week:
I blogged (See this blog post).
Now I am thinking absorbing video game or bout of serious drinking. Your vote?