PERSONA DANCING ALL OVER MY SOUL
"I generally just tumble around."

If you have a physical disability, please consider giving me 5 minutes of your time to contribute to my research!

I was thinking about the impacts of disability on aspects of life and sense of self, and because I become dedicated to answering questions that enter my brain, I’m doing a personal research project regarding disabled people and would appreciate if any of you would be willing to participate! It will take 5 minutes of your time to fill out and I’ll analyze the data and release a report once I receive enough responses.

https://goo.gl/forms/au8g9sz9NKpF0cjB2

Please reblog this; I’d like to get a decent sample size to ensure significant data instead of an analysis of a few isolated cases.

My Stomach: I'm really fucking hungry.
My Brain: You haven't even in like 7 hours.
My Body: Nah, I'm good. *doesn't get up for another several hours*

youngchronicpain:

youngchronicpain:

stop by the new young chronic pain chat! everyone is welcome, we talk about pain, meds, more pain, our pets etc 

go to https://discord.gg/xFRRbWj and join the fun

we are from all over and have a large range of ages, chronic conditions, and backgrounds

hey HEY if you’ve ever wanted to hang out with a bunch of super cool people that also deal with unbearable body trouble you are in luck! 

I 100000% recommend this server; I joined about a week ago and it’s been such a supportive community. There’s places to talk specifically about illness, introduce yourself, and just chat in general. Overall, it’s just nice to be able to hop into a chat server and immediately feel welcome.

Whether you check it or not, I do implore you to give this a signal boost so more people can find out about it!

Education Grumps

This is gonna be long, but I implore you to bear with me.

Today’s episode Paper Mario: The Thousand Year Door was fantastic!

…except for a passive joke Arin made towards the end. You can say I’m being overly sensitive, but at least hear me out before you do so.

NOTE: I fucking love the Grumps and have been watching them for years. I’m not trying to draw hate to them or anything of the sort. I just wanted to take this scenario to raise awareness, because I believe this came from a place of ignorance and not an intent to harm.

In today’s episode (July 2nd, 2017), Admiral Bobbery joined the party for reals this time. For those who watched the episode or have played the game, you’d know that Bobbery is convinced he’s going to die, and thus closes his eyes so he drift off to the afterlife. Except… he’s not dead. He’s asleep. Take note that he closed his eyes of his own volition, purposefully laying back to “die” (fall asleep in actuality).

“Cut to the chase- what was so offensive?” said the Straw Man™ across the room.

Before I put it to words, I’ll first put the quote here as well as its context:

[A Sleepy Sheepy item was used on Mario and Bobbery, though only Mario was affected. Thus, Mario fell asleep while Bobbery remains awake.]

“Bobbery the sleeping fucking narcoleptic bomb doesn’t fall asleep?”

Okay, let me do some explaining. For starters, “narcoleptic” is not a casual adjective. It should never be used to describe someone unless you are talking about someone who does have narcolepsy. The reason is simple: narcolepsy is a serious illness. Throwing around the term as if it’s nothing trivializes a condition that will affect 1 in 3,000 people for their whole life. There is no cure.

As you may have surmised by now, I am someone who has to live with narcolepsy. It’s something that affects me every day, some days moderately and some days extremely.

Someone proposed a possible explanation to the effect of: “Well, Bobbery abruptly fell asleep earlier so maybe they actually think he has narcolepsy.”

That is a good thing to consider, but I earlier explained how he fell asleep of his own volition, not against his will. Not only that, but he was (more or less) easily roused from his sleep. Furthermore, people with narcolepsy cannot be forcefully woken up from a sleep attack; they have to just wait it out until they wake up. That aside, I do not think Arin actually thought Bobbery had narcolepsy. He has made a handful of passing jokes about someone being narcoleptic in past Game Grumps episodes.

The media either never talks about/shows narcolepsy, or when they do show it they show it as a trite stereotype. If that’s all people see, of course they won’t know that it’s not a joking matter? I won’t preach for too long, but I’d like to describe a bit of what narcolepsy is really like.

Narcolepsy manifests differently with each person, so I’m describing what is typically the most common experience. That being said, let’s talk about sleep attacks. You don’t slowly lull into a sleep attack. With absolutely no warning, at any time or place, it occurs out of nowhere. Every time, there’s the risk of being unlucky and causing trauma to the head (I am fortunate for this to not have happened). My body is consistently spotted with bruises from the falls caused by sleep attacks. When it happens in public, it’s mortifying. I become a public spectacle if someone I know isn’t with me to stop them from gawking. For me, these episodes last up to 20 minutes. Some of the worst places I’ve had sleep attacks are the middle of the mall, the grocery store, the middle of class, the hallway… you get the idea.

And that’s just a fraction of what narcolepsy really is. I figured this illustrated my point enough, and the reason that it upsets me so much when people throw around the term as if it’s a synonym for “sleepy”.

Once more: this is not meant to be vindictive or judgemental. Instead, I wanted to use this opportunity to make this post because I’m pretty certain just about everyone reading this also wasn’t aware of why it’s a big deal.

If you’re a Grumps fan and wanna pass some knowledge on, feel free to reblog. I encourage it!

“You shouldn’t drink so much caffeine, it’s terrible for you!”

image

Originally posted by dexterfuckingmorgan

Ah, yes, let me abruptly stop one of my sources of functioning, putting myself in the position for withdrawal migraines and excessive daytime sleepiness at full force. I wasn’t aware you were a doctor, but clearly you seem to know my medical situation and the best advice for me personally.

Bonus: “You wouldn’t need the caffeine if you had better sleeping habits!”

To My Spoonie Followers:

Pokemon Go has been a fantastic tool for many people, but remember to still look out for yourself even though it’s a hella fun game. I’ve been having to step back and keep tabs on myself to make sure I don’t over-exert with the walking around, even though I just want to keep going and catch them all…. save your spoons for what you need to do, and only go as far as you can as you’re enjoying the game, okay? //thumbs up//

So my girlfriend and I are tidying up the apartment since we’re having guests over tomorrow, and it’s kind of a lot to do. She keeps making sure I pause to take breaks, though, so I don’t overdo it and cause my back pain to flare up too bad. I often get carried away even when I know better, so I’m thankful I have a partner who looks out for me and helps me remember to respect my limits. 

Me: Boy howdy today was, in fact, a day if I ever did see one.
Friend: What happened?
Me: Nothing, I'm just at a point in my life where simply existing is an exhausting task.

It’s kind of exhausting that I’m often measured by my ability to mimic a genuine able-bodied neurotypical™.

Able-bodied People: “Don’t you wish you were….you know….normal?

ive-lost-my-spoons:

fightinginthenameofnothing:

ive-lost-my-spoons:

Spoonies: 

image

Are you kidding me?

All the bullshit I’ve been through with doctors, meds, physical therapists, school administrators and nurses, wondering if I’ll actually graduate, putting off college, the inability to celebrate my own birthday, missing out on important events with friends, having no social life, not getting my driver’s license until I was 18, not participating in normal high school activities like prom, becoming a jaded, apathetic, cynical person, and you think I wouldn’t trade all of that to be normal because of some aloof sense of superiority due to the fact that chronic illness isn’t a regular occurrence among the human race?

You think any of us wouldn’t trade all the pain we’ve been through, emotional and physical, just because we’d be like everyone else, normal, if we didn’t have it?

There is much more to myself and a lot of other chronically ill people than our illnesses, and if you would rather be sick than normal, well congratulations on being really special.

Before you flip shit at me and call me “really special” because that’s not offensive lol, maybe consider the way you take a post may not actually be the posts meaning.

image

Honestly I do often take the mindset of the original post- not because I want to be sick. On the contrary, I would LOVE to have days without chronic pain or the threat of collapsing in public. It would be incredible to not take a handful of pills every day just to function at a somewhat productive level.

But that’s not realistic. I can wish all I want, but my migraines aren’t going away any time soon.There is no cure for narcolepsy. I don’t want to be sick, of course, though I’m fed up with people acting like I should be constantly grief-stricken and loathing of my illness. There are people who will insist I’m not really as sick as I say I am because I don’t spend every waking moment hating my illness.

In reality, I try to keep that despair out of my mind, even though it is the first feeling to rise when I think about my illness. There is no cure for my illness(es)- giving in to the grief and frustration will do me no good. There’s nothing I can do to be cured, so why on earth would I let myself continue to be perpetually miserable?

I’m chronically ill. I don’t want to be, but I am. Me being ill won’t change any time soon.

I refuse to hate myself for something that I can’t control and can’t get rid of. I refuse to hold on to the daydreams of being healthy- all they do is make me feel worse because I know I can’t get rid of my illness. It’s just not realistic to constantly hope and wish I’ll get better. It just traps me in a desperate mindset.

So I swallow the truth. It takes a lot of time and I still am not perfect, but over time I learned to accept my illness while also acknowledging I’d give anything to be without it. I learn to be able to enjoy life instead of spending every waking second longing for an impossible outcome. Every day I do all I can to get away from that pitfall of self-pity.

And yet, able-bodied people love to drag us back to that awful mindset, whether they mean to or not. They expect us to live in that constant state of misery, as if we couldn’t possibly enjoy anything as long as we’re ill. And you know what? I would have been inclined to agree at some point. But I’ve worked my ass off to be away from that state of mind.

I am sick. I hate being sick.

Though do you want to know what I’m really sick of?

People treating me like my entire life has to revolve around pining for the impossible instead of striving to be as functional as I can- not focusing on the incurable, but how I can live a fulfilling life in spite of an illness I cannot get rid of.

College Chronicles

There’s a small Halloween get-together at the community center tonight for housing students, but I think neurofeedback took up the rest of my spoons. I really wanted to go, but at this point it’s 50 minutes away and I’m probably going to have to stay home tonight. vnv

I Need to Follow More People

justaprinceofthegalaxy:

I’m only following like 120 people and I need more non-fandom content on my dash. I mean, if you post fandom stuff that’s okay, I just need something to break up the Undertale revolution. :’D

I want to check out and maybe talk to more spoonies, non-binary people, and so on. Basically I’ll just list what I’m looking for- feel free to reblog as a signal boost, just tag it as ‘signal boost’. Tag otherwise or don’t tag and I’ll go check your blog! 

Looking For People Who Are or Who Blog About:

  • Spoonies/Chronic Illness ((All kinds, but narcolepsy, cataplexy, and chronic pain specifically are relevant to me.))
  • Transgender/Nonbinary People
  • Neuroatypical People ((Again, all kinds, but the ones specific to me are BPD, OCD, PTSD, GAD, and Depression))
  • College Students ((I just started college and I just keep blogging about my experience and would follow people who blog about their, too!))

So, if you’re any/all of the above, hit me up with a reblog! Mention in the tags which apply to you, and if you’re just boosting, tag as signal boost.

I Need to Follow More People

I’m only following like 120 people and I need more non-fandom content on my dash. I mean, if you post fandom stuff that’s okay, I just need something to break up the Undertale revolution. :’D

I want to check out and maybe talk to more spoonies, non-binary people, and so on. Basically I’ll just list what I’m looking for- feel free to reblog as a signal boost, just tag it as ‘signal boost’. Tag otherwise or don’t tag and I’ll go check your blog! 

Looking For People Who Are or Who Blog About:

  • Spoonies/Chronic Illness ((All kinds, but narcolepsy, cataplexy, and chronic pain specifically are relevant to me.))
  • Transgender/Nonbinary People
  • Neuroatypical People ((Again, all kinds, but the ones specific to me are BPD, OCD, PTSD, GAD, and Depression))
  • College Students ((I just started college and I just keep blogging about my experience and would follow people who blog about their, too!))

So, if you’re any/all of the above, hit me up with a reblog! Mention in the tags which apply to you, and if you’re just boosting, tag as signal boost.

Today I decide to try and explain the concept of spoons to non-spoonies. Fellow spoonies, let me know if you think this was an adequate description? If so, pass this around. Use it if you want- whatever helps get more people in the know, you know? 

~Follow me on the tumbles/Youtube and affirm my need to be an awkward disabled queer blogger.~

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