I don’t want to write this post. In fact, I already wrote it and deleted it.
But here’s the thing. This life? This story? It’s real. I can’t pretend that autism is all rainbows and butterflies to prove a point. I also won’t buy into the fact that it’s a soul-stealing evil monster, either. Balance, is what I say. There is good and bad in it.
And these days, my sensory issues are really getting me down. I’m a girl who loves go, see, and do. I love to experience the world. From the mall to church to horses to going to get Elsie P’s cat food, I love it all.
Loved, I should say, because it’s no longer so.
Someone turned up the volune on my sensory issues, and now they’re stealing my quality of life.
Yesterday I went to the doctor. I’m having joint pain, sometimes in my hip to the point that I have to stop wherever I am and not move. And then I hobble. My elblow, my ankle, my knees, my wrists, and my fingers all periodically hurt… usually on and off, and it’s either fine or it’s all on at the same time. We don’t know what’s causing it yet. Could be RA, could be lupus, could be Sjogren’s… blood tests and x-rays will tell. Could, in fact, be nothing (that’s my hope).
Anyway, the doctor’s office lights hurt me. It was SO bright. And I got a flu shot while I was there…
So last night I had a fever. No big deal, right? Except for the girl who can’t handle her body feeling “wrong” but doesn’t know what feels wrong! I was yelling and whining and crying and hitting and banging my head on the floor and crying… on and off, all night. I’m not sure what, if anything, or if everything hurt. I was just a mess.
I woke up this morning and the fever was gone, but I’m still super quiet and cranky. Still not sure what hurts, unless nothing hurts. Anyway, Mom’s best friend B (because Mom won’t be back from vacation till tonight) picked me up to bring me to my therapist’s office… and I hate that waiting room. More lights. I only sat in it for maybe five minutes, but it gave me a hefty migraine.
After a wonderful session with Jannette (because how great is it to be able to sit and talk with someone who really, truly gets you?), we stopped for lunch, as it was nearly 3 and we hadn’t eaten yet. We chose Mad Mex, as I love Mexican. I went to a Mad Mex, oh, eight years ago, perhaps, and totally and completely shut down mid-meal. Also melted badly when I got home (this was before I had words for things like shutting down and melting down, though)…
Come on, self, I said to me. It’s just a restaurant. You’re doing so well and conquering so many things. One little Mexican place isn’t going to conquer you!
Except, it sure did. Oh, my gosh. I was literally seeing swirls and flashes of light, on top of my throbbing head, eyes, and ears. I don’t know what it was- lighting, music, what have you. I do NOT like something in there, whatever it is. And so, despite excellent service and a waitress who loved my hat and tail, and despite delicious food, there will be no more Mad Mex for me.
And I’m frustrated. Sometimes I feel like there’s a very typical girl stuck inside a body that just will not cooperate. It used to be that I could handle the everyday world, just not things like, oh, a haunted house or an IMAX movie. Now, every little thing sets me off, and most of those are basically intolerable.
This is my world too! How do I make it a place I can belong, when I can’t go anywhere?!