Reality check

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?!

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9 thoughts on “Reality check

    • What makes you think I haven’t tried yoga and meditation? I’m not a fan of yoga, but meditation is good… but I can’t do it when I’m doing other things (I know some people can and do, but I can’t).

    • I wear blue lenses always and sunglasses in bright (fluorescent) environments. I had a hat and sunglasses on in the therapist’s waiting room, and I couldn’t put sunglasses on in Mad Mex as it was already dark. Yes, they take the edge off, but more often than not they aren’t enough anymore.

  1. do you do regular sensory-diet kind of activities throughout the day? Like at set intervals? Even when you feel like you don’t need them, I wonder if they’d be helpful for when you do? Some people say those sensory breaks are like a resetting of the body. Just an idea. I can imagine how frustrating this is for you!

  2. The mexican restaurants I’ve been in have been overwhelming for me so I ‘m not surprised you found it tough! The music, the patterns, the smells… and that’s before you get to people and food! Carry-out or delivery sounds like the best way forward for now.

    Are you still sleeping on the couch? If you’re sleeping in odd positions that’s going to put you all wrong so could just be that – I get blinding pain in my hip when I have to sleep in with Scrumpy because of the way she makes me lay.

    Bad as this is, you know it’s a phase that will pass the way all other phases do. You have an amazing mum and I know she’ll help you get to the bottom of it.

    Thinking of you

  3. goodfountain, that’s something I have been thninking about. I don’t really have a place to a way to do them or know what I could do. I have some things built in- I swim 3x a week, and I frequently roll on the floor (deep pressure). I’m planning on getting a rocking chair too… other than that, I don’t know what to do for myself for a sensory diet.

    Manda, yep, still with the couch. I just don’t sleep in my bed! I love to wedge myself into the side of the couch and wedge my head into the corner by the armrest and it just feels so good. A bed is too big and free for sleeping. But, I’ve had these pains for many, many years (like 10, 15 even now that I think back), so I’m not sure couch is the culprit. For that matter, I may be getting a futon for my birthday, which is meant for sleeping, as couch is, erm, not the most supportive couch anymore.

  4. Lydia, If you want some sensory diet activities, it might help to read The Out of Sync Child by Carol Kranowitz (might have spelled her name wrong). It helped me immensely in working out Hannah’s sensory diet. It’s geared towards kids, but you could adapt most any of the activities for an adult. Since you don’t have regular OT you could just kinda do it trial and error and see what works for you. As far as the joint pain, I’m so sorry to hear that. I have Sjogren’s Syndrome and Fibromyalgia so I can relate somewhat. It stinks! Good luck figuring things out and getting back into the swing of things.
    Natalie

    • Natalie, that’s a good idea, and I will get hold of that book. Sjogren’s is one of the things I may have… and actually, I think my mom may have it too (she has super dry eyes, joint pain, and another symptom I won’t advertise on the internet!).

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