shout out to young kids with “old people” illnesses
PSA to able-bodied people dealing with disabled/chronically ill people
There is a large range of space between “not sick” and “a total invalid” so don’t assume people are one or the other. Many of us can do things, even if our condition makes doing the things more difficult. Also, this can vary by the day; some days we can do almost all the things, some days we can do some things, and some days we can’t do much at all. Please don’t assume we are all always out of commission. Let us tell you what we can and can’t do and when.
I think the people in my life forget that when I am doing things with them, I am usually pushing myself much further than I would if I was alone. Because I can ask for help when I’m with others, they can assist me and give me more energy to stay out longer. When I am by myself I have to rely completely on my own energy and ability, which often wanes rapidly. My planning for the day and how I ration my energy are completely different, they have to be.
The original tweet is in response to a tweet about Ellen Maud who sought out medical help and was routinely told to just lose weight. She later died of cancer.
This is something I cannot advocate for enough
chronic illness life hack
I’ve gone back and forth on doing a write up about it all (and about the eds society as well) but couldn’t find a way to do it without sounding like a dick so idk. It’s frustrating. Thank you for letting me know I’m not alone :)
It’s literally part of the definition of a chronic illness, it is by its nature incurable. Yoga may help some, but it is not a cure. Sleeping more may help some, but it is not a cure. Piercings may help some, but they are not a cure. Diet changes may help some, but they are not a cure. Praying may help some, but it is not a cure. A positive attitude may help some, but it is not a cure. Medications may help some, but they are not cures either. NOTHING CURES CHRONIC ILLNESSES because if something did cure a chronic illness, then that illness would no longer be a chronic illness.
I’m in a fucking mood about edsers on Instagram. Idk how to explain it without sounding like a dick 😂
I just need to get well enough to stop spending all day in bed on my phone mad at people doing things I can’t.
Things to Normalize in Disability Lit
- Inter-disability couples
- Multiple people with the same disability presenting in different ways
- Disabled people who do not have a specific diagnosis
- People with multiple disabilities
- People whose mobility support needs change from day to day or depending on activity
- People who don’t hate being disabled
- People with progressive conditions shown adapting rather than played for tragedy
- Disabled people who are not “good” or “innocent” (but not villains either!)
- Disabled people with multiple marginalized identities, rather than always being white middle-class cishet people who happen to be disabled
- Groups of friends with more than one disabled person
Feel free to add!
-Disabled people who aren’t cured or killed, but continue on living with their disabilities
-Disabled characters who aren’t only used to supplement abled characters
-Disabled people who thrive in life/careers because of their disabilities
-Destigmatising chronic pain, mental illness, rare diseases, etc. by using real and/or well-researched experiences of disabled people
-Disability that doesn’t function to only dramatise the plot
-Disability as a normal part of someone’s life!
-Repeated use of mobility aids, medicine, and other things that can imrove the quality of life for the disabled yet are stigmatized in real life. Young people using walkers, taking painkillers, diabetic needles, etc.
- characters coded heavily autistic as being “undiagnosable” and other blatant ways to have a character act autistic but not be called autistic
Hey so my queue is mostly dead and my brother is getting married (again, same person) this weekend so I’m super busy. Sorry if the blog is dead for a few days. I promise I’ll get the queue going again! It’s just been a busy week with all of this.
It is hard to wake up in pain every day.
It is hard to survive every day when you’re in pain.
You’re facing every day with bravery, even if you don’t think you are, or don’t feel so great. You’re still alive, still fighting, and that counts for something.
I am not an example of chronic illness for abled people to use.
I am not here for you to prove to someone that a chronically ill person can get good grades in school
I am not here for you to prove that a chronically ill person can be productive
I am not here for you to prove that a chronically ill person can be positive and happy
I am not here for you to prove that a chronically ill person can walk without a mobility aid
I am not here for you to prove to another chronically ill person that a chronically ill person can do something that they say they can’t do
I am not an example for you to use. Not when you don’t know how difficult it was for me to do these things.
Good question! So about 3/4s of my physical therapy visit is doing manual release which is basically massage therapy. The muscles are so jacked up on my neck and shoulders it takes most of the visit of massage therapy to get them well enough to move. I do exercises at home when I can but I can’t massage the back of my neck and head (though I do my shoulders and chest). I think it all goes back to those spasms I had after surgery that had me stuck facing downwards. It’s in the same area and my collarbones are still missing, my shoulders are slumped and dislocate if you move them above my chest a lot of the time. So right now we really need to be doing frequent work to fix those muscles. They may just be shocked from being cut and now having metal sitting by them. Idk. I’m on 2 different muscle relaxers which are enough to not force my head down still but not enough for the muscles to work well if that makes sense. So I do what I can at home but what I need is frequent one on one work with a physical therapist who understands eds and the type of spinal fusion I had. The longer this muscle issue goes on, the more it affects my posture and the more at risk I am for messing up the rest of my back. My insurance knows this and doesn’t care unfortunately.
Here’s a picture of what the spasms look like (you can see I have no collarbones, am stuck downwards, and slumped shoulders. You can also see the swelling at the side of my neck and in front)
Family member: I’ve done this, this and this today. So tired! What have you been up to?
Me to myself: I’m exhausted.. From having a shower and putting on clean pajamas.. 😒 I barely have energy to grab easy food from the kitchen
Me to them: oh not much, just normal odds and ends *fake smile* 👍
every goddamn morning
Me: okay, we got stuff to do today, let’s go!
My body: sweet! we’re out of energy btw
Me: ??? I just woke up???
My body: yeah uh well you see we kinda,,,, forgot to make energy
Me: you FORGOT-
Disabled girls with hairy legs are beautiful
Disabled girls with hairy armpits are beautiful
Disabled girls who are bald are beautiful
Disabled girls who are overweight are beautiful
Disabled girls who are underweight are beautiful
Disabled girls with loose skin are beautiful
Disabled girls with discolored and liverspots and wrinkles are beautiful
Disabled girls who are so thin their bones show are beautiful
Disabled girls with dont have flat stomachs are beautiful
Disabled girls with eyebags are beautiful
Disabled girls who have psychosis are beautiful
Disabled girls who use mobility devices are beautiful
Disabled girls with missing organs and devices in them are beautiful
Disabled girls with ostomy bags are beautiful
Disabled girls with anxiety and depression are beautiful
Disabled girls with paranoia are beautiful
Disabled girls on medication are beautiful
Disabled girls of any and all kinds are beautiful
Disabled girls are amazing and worthy of positivity.
Add more if you like