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.

One thought on “To those who think I’m lucky

  1. I hate when people think I’m lucky because I get to stay at home and not work. First off, I would love to work to help make ends meet (we’re pretty blessed with Justin’s job, but as you know, with medical bills, we could always use more bill money.) Yeah, there’s nothing like laying on the bathroom floor with low blood pressure and nausea. Nothing like avoiding meals because nothing sounds good that you actually have the spoons to cook, or eating really weird foods for the same reason. I try to read, but I don’t have the mental capacity some (most) days. It’s so frustrating. 🙁

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