To those who think I’m lucky

Admin note: I am hella sorry for no image descriptions in this post. I am too tired, too sick, too much pain pain, and too out of it to post them. I am so sorry. Please forgive me. 

To this who think I’m lucky, who think I have it easy, let me tell you what it’s like.

You think I can sleep all I want? You think that it must be nice? Try going days without sleep – because it hurts too much, because I’m an insomniac, because anxiety is too high, because sensory issues are too intense. Try sleeping your life away, yet never feeling rested. Imagine the tiredest you’ve ever been in your life. Then imagine never getting a relief from it. THAT is what it feels like.

I can watch all the TV I want? This is what THAT looks like: the other night, I was watching Jimmy Fallon clips on youtube. It is literally what kept me alive. My pain was so severe, I wasn’t sure how I was going to make it. But, I told myself if I could make it through one more clip, I could keep going. And I kept doing that. And it kept me alive. It got me through the pain flare. Is that lucky? To literally use TV clips to keep myself alive?

And then there are the days I’m too sick to watch TV. Days when I don’t have the attention span to watch it. Days when I literally can’t because any sound hurts me. Physically hurts me. I can’t play video games, because it hurts too much to hold the controllers or handheld. This is what it winds up looking like. This is lucky.

I don’t have to work? My deepest dream is nothing more than to be able to work my dream job. I want, with all my heart, to work. To put in overtime. To do the job I have been dreaming of. To get back to school. But I can’t.

I am lucky not to work? Do you realize that what I do is a full time job? Constantly sending emails and making phone calls. Battling insurance. Going from appointment to appointment. Juggling people coming here. Battling sensory meltdowns. Getting into my routine, then having it thrown out and not being able to function. Literally.

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#walker #spoonielife #nf1 #criplife #selfie

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See me with my walker? Awake at 2 am? Tired as hell, but unable to sleep? Relying on a mobility device to get around? This is my “luck”. This is my “life”.

See my blood pressure here?

 

 

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So #overit. #selfie #doctorsofficefab #spoonielife

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See me stuck in yet another doctor’s office?

 

Or, you know, so sick that the cat won’t leave my side, because she’s convinced I need nothing more than her love to make my better.

I am lucky in some ways. I am lucky to have amazing friends, who understand that I do what I can. I am lucky to have people who love and care about me. I am lucky to have friends who send me random cards, random care packages, who check in on me on Facebook. I an damned lucky to have an amazing primary doctor, who goes after the asshole doctors I meet in ERs and the douchecanoe specialists. I am lucky that I have people fighting for, praying for, and thinking of me.

But it doesn’t mean that I’m lucky to be ill. It doesn’t mean I’m lucky to play medication roulette. It doesn’t mean I’m lucky to need and rely on PCA help, home nurses, homemakers, doctors, hospitals, medications, etc. I would do anything in my power not to be this way.

So before you tell someone they are lucky to be in bed all day, think about what you’re saying. Before you tell someone that they’re lucky to not have to work, think about what it would be like to not be able to do the one thing you would love to do more than anything else. Before you tell someone they are lucky to sleep all the time, imagine what it must be like to literally have no other option.

Because I assure you, it’s the farthest thing from luck.

Trapped and Scared

What you see is me rocking back and forth.
What you hear is me singing a Children’s song under my breath.
What you hear is my humming, my singing, my repeating words I like.

What you see is me fiddling with the bracelet around my wrist.
You think I’m a child. Young. By the way I cradle the beanie baby. By the way I’m acting.
You don’t realize that I’m 28, 28, 28, 28.

And scared.
You don’t realize that I’m overloaded. Overwhelmed.
I can hear that soda across the room.
I can feel the ink from my “tagless shirt” against my skin.
If I move so slightly, will it feel better?
If I squirm just so,  will it no longer itch?

Oh god. What is there’s a fire drill?
What if?
I’m trapped. I’m trapped in my head.
Over the anxiety. The fears. The pain.

Why is that soda still fizzing, even though the lid is on it?
Why can I hear it so clearly?
Why is the cat chewing paper? The sound is painful. It hurts me.

My senses are overwhelmed. I pull the weighted blanket over my head.
I hold the stuffed animal tighter.
I turn up the volume on Blue’s Clues, the one show that brings me comfort always.

I am scared.
I am trapped.
I am completely locked in my own head.

The sensory nightmare doesn’t stop. Nothing feels safe.
I am trapped. I am alone.

Everything is crashing around me.
I am scared. I am lonely.

I just want silence. Silence.
But I’m trapped. I’m overloaded.

This is my life. 

I sit here locked inside my head

Sensory overload.

It’s a phrase I use a lot. It’s something that happens to me a lot. It’s something that makes me feel trapped – so very stuck. It’s a part of the ASD/NVLD territory  but it doesn’t make it suck any less. It is part of what makes me me but it makes life so difficult. Here’s a peak at the thought process that goes into it.

The lights. They’re so bright. They hurt me. Why? WHY? Why do the lights need to be so big, so bright? Why are the words in my head so loud? So very loud! Turn them off. I can’t. I can’t. Quiet hands. Quiet hands, Nora. Oh, fuck quiet hands! My hands moving, my hands stroking, this is what’s keeping me grounded. Who cares if it bothers you? Would you rather me melt down? Keep your quiet hands to yourself. My words. My words in my hand are so very loud. Why can’t I turn down my head? Why can’t you turn down the music? Is it really necessary to blare both a TV and a radio? Stop. Make it stop. This shirt says it’s tag free and I like that – I don’t like tags. But the tagless label itches. Don’t tell me it’s not possible to feel it – I feel it rubbing against my skin. Don’t tell me I’m overreacting, I feel it against my skin and it’s very real. Maybe if I stim, maybe if I rub a fabric I like, maybe it’ll help. Maybe I’ll feel better. But I’m still here inside my head. I’m still completely overloaded. Someone. Make it stop. 

Sensory issues are why I have two weighted blankets – my big one and my travel one. Sensory issues are why I have to carry a beanie baby with me everywhere (at age 27) in order to ground myself. Sensory issues are why I don’t like bright places, loud places, so many different types of places.

But I have to go about life and I still haven’t figured out how to best live with it – how to fully embrace it and be proud of it. To love the fact that I can only wear certain fabrics, certain clothes on certain days. To rock who I am. It’s fully okay for me to accept this and say “yes, this part still sucks. This part still scares me. This part still overwhelms me.”