spooniestrong

My Spoonie Strong Selfie for this week!

I had six hours of surgery on Wednesday, and now I have two weeks of very chill recovery. After that is another 4 to 6 weeks of being careful.

But! Thanks to the mystical powers of Ativan, I haven’t had a full meltdown-style panic attack yet!

Sending good vibes to all my fellow spoonies, especially those who are also laid up with stitches and pain.

Just a PSA that calling disabled people “differently abled” pisses a majority of us off. We’re disabled. Sugar coating it treats us like who we are is something bad. There are things we CAN’T do, not things that we do “differently.” People need to accept that.

Shoutout to the spoonies who are struggling to make ends meet.

To the disabled people who have to choose which medical treatments to pursue based on cost.

To the spoonies who are choosing between food and necessary medical care.

To the disabled people who have can’t get necessary medical treatment because of cost.

To the disabled who are constantly worried about how they are going to make things work.

To the spoonies who go to work every day because they must in order to support themselves but can barely function by the time the workday is over.

It’s messed up that we live in a country where medical treatment is so expensive. It’s terrible that you must make the choices you do. 

I see your strength and your bravery. I see how hard you are trying. 

It is my hope that one day soon it will all get easier for you. I hope that you find a way to afford what you need. 

To all my fellow chronic illness friends:

“No means No” does not only apply to sex.

If you tell someone you are unable to do something (because you are unable to, you feel it may cause you harm/damage) and they push you, that is NOT okay.

When you say no, that should be the end of the conversation. When someone pushes you, they are saying that they don’t respect you, and that what they want, is more important then your wellbeing.

Please don’t think that it’s okay for people to push you to do something you don’t want to do/are unable to do.

Your wellbeing is very important, and don’t let anyone think that what they want, is more important than your health.

6

It’s time to make the INvisible VISIBLE by proudly and publicly talking about our experiences as invisibly disabled people.

Despite popular belief and community infrastructures,  #InvisiblyDisabledPplExist. This ignorance and reduced community recognition and assistance can cause us lots of unnecessary difficulty, pain, and even death. 

This means it’s time to start a movement to end the ignorance about what it “means” to be disabled.

Please use the hashtag #InvisiblyDisabledPplExist to not only make signs over disabled seating and other areas, as mentioned in tweet 4 above. 

We must also talk about our many many stories of being invisibly disabled in a world where the public doesn’t recognize our existence (like mine).

Please Tweet & Boost!!!

Me: I actually feel okay right now, just a bit hot. 

Body: *whispering*  One - Nothing wrong with me
Two - Nothing wrong with me

Me: *stands up*...wait a second…

Body: *whispering* Three - Nothing wrong with me
Four - Nothing wrong with me

Me: Don’t you dare….

Body: *whispering louder* One - Something’s got to give
Two - Something’s got to give
Three - Something’s got to give

Me: *feeling really dizzy* I think I just need to…

Body: Now!!! 

Me: *Passes out*

Body: Let the bodies hit the floor!!
Let the bodies hit the floor!!!

“But you don’t look sick”

As an invisibly disabled person inspired by a post called “13 Reasons Why “You Don’t Look Sick/Disabled!” Is Not A Compliment” by @soooyeahanyway, I just want to say that I cannot wait until I no longer have to hear about (and pay for) how I “don’t look sick”.

Take the disabled seats on the metro/bus for example. 

I mean, nobody will EVER give up their seat on the metro for me and in fact, whenever I do manage to get a seat meant for the disabled (i.e., MEEEEEE) and I’m having a hard time, other visibly disabled or pregnant people will ask me to get up OR will stand near me and other ppl will give me the evil eye. 

SO even if I really REALLY need the seat, I will give it up.

But believe me, I don’t do it without making sure EVERYONE in the car hears me gripe very loudly about how I actually AM disabled and need the goddamn seat and that invisibly disabled people actually do exist on this fucking planet and that if people REALLY cared about us disabled folks they’d give the visibly disabled person their seat, regardless of whether or not they’re in the seat “meant for” the disabled. Not that that will ever happen for me (the invisibly disabled), but I care about my fellow disabled folks and it’s not their fault that the world is this way.

The moral of this story? 

No one (even the pregnant & visibly disabled!!!) should assume that ppl using the disabled seats are “abusing them” by using them without being sick/disabled. If someone you think isn’t disabled is in those seats, do all of us disabled folks a HUGE favour and STFU and let them sit there. I don’t care how healthy or abled you think they look! If they are using it, I’d rather risk that they don’t belong there then make someone move (or feel horrible) who needs the seat. 

TL;DR - STFU & MOVE ON!!!!!!!!!!

PLS READ & BOOST!!!