bitsofash-phoenixborne

[bitsofash-phoenixborne]

People telling me I look so good. Asking what my secret to weight loss is.

You know what the secret is?

~ poverty ~

#chronic fatigue #chronic illness #chronic pain #chronically ill #eds problems #hypermobile eds #ehlers danlos problems #ehlers danlos syndrome #ehlers danlos type 3 #ehlers danlos zebra #food insecurity #poverty #weight loss #best way to lose weight #except not actually #at all lol

[bitsofash-phoenixborne]

"a joy to have in class" aka This Child Will Not Be Diagnosed for at least Eight Years

[bitsofash-phoenixborne]

my nana wants me to fear getting old so bad. “before you know it you’ll be 30!” and WHAT. and what. am i supposed to be sad about that. am i supposed to run from my life forever. so many people don’t even make it out of their fucking 20′s. and the expectation that i should be upset if i do, because my tits might sag a bit more or because i won’t exist in the enigmatic throes of youth anymore, is beyond ridiculous. the glory days are an entirely fickle made-up concept that never really served me anyway so excuse me for not constructing my entire self around them. i don’t care about the anti-aging agenda. it’s a good thing to live a long time

[bitsofash-phoenixborne]

Life is complex and people are complex and there's no universal quick fixes that will fix everything and everyone. So don't beat yourself up for having complex needs and complex experiences which can't be fixed just by changing your mindset and trying harder.

[bitsofash-phoenixborne]

they should invent a type of sleeping where you wake up and feel rested

[bitsofash-phoenixborne]

sometimes it’s too much to sit with. So you put it on a leash and you take it on a walk

[bitsofash-phoenixborne]

PSA: it's wholly acceptable if your reason for living happens to have fur and not speak the same verbal language as you

Pictured below: my grey fuzzy reason for living

#chronic fatigue #chronic illness #chronic pain #chronically ill #eds problems #hypermobile eds #ehlers danlos problems #ehlers danlos syndrome #ehlers danlos type 3 #ehlers danlos zebra #chronic migraine #tw mental health #mental illness #tw suicide #spoonie

[bitsofash-phoenixborne]

the problem is that going to bed at night feels like a chore whereas lying down for a forbidden nap at 4pm feels like the pinnacle of decadence

[bitsofash-phoenixborne]

hey happy pride specifically to disabled people, especially those of us who wish they could go to a pride celebration but can't. Whether it's not wheelchair accessible, it doesn't have enough places to sit, you're too immunocompromised to take the risk with covid, it's too loud or overstimulating, or any other reason. I see you. I love you. You deserve to be included and have your needs respected.

[bitsofash-phoenixborne]

Every person need to be taught disability history

Not the “oh Einstein was probably autistic” or the sanitized Helen Keller story. but this history disabled people have made and has been made for us.

Teach them about Carrie Buck, who was sterilized against her will, sued in 1927, and lost because “Three generations of imbeciles [were] enough.”

Teach them about Judith Heumann and her associates, who in 1977, held the longest sit in a government building for the enactment of 504 protection passed three years earlier.

Teach them about all the Baby Does, newborns in 1980s who were born disabled and who doctors left to die without treatment, who’s deaths lead to the passing of The Baby Doe amendment to the child abuse law in 1984.

Teach them about the deaf students at Gallaudet University, a liberal arts school for the deaf, who in 1988, protested the appointment of yet another hearing president and successfully elected I. King Jordan as their first deaf president.

Teach them about Jim Sinclair, who at the 1993 international Autism Conference stood and said “don’t mourn for us. We are alive. We are real. And we’re here waiting for you.”

Teach about the disability activists who laid down in front of buses for accessible transit in 1978, crawled up the steps of congress in 1990 for the ADA, and fight against police brutality, poverty, restricted access to medical care, and abuse today.

Teach about us.

[bitsofash-phoenixborne]

“How can you sleep for 20 hours straight then have a full nights sleep that evening??”

[bitsofash-phoenixborne]

11 days ago I was in a head on car accident.

9 days ago my last living grandparent passed.

3 days ago I was fired without notice or any indication it was going to occur.

The level of pain that I'm in has put me about two years back on my journey of recovery.

I can't get my groceries without needing a cart to lean on.

I can't get all of my errands done in one trip because the fatigue is too great.

The amount of time it takes me to get ready in the morning has almost doubled because I can't physically move any faster.

I have a constant headache and brain fog, much reminiscent of the days in which I spent more wake time receiving infusions than not.

I have a to do list that I can barely make a dent in because I can't remember where I set down the pen that was just in my hand.

I'm grateful to be alive, I really am. I got extremely lucky that the engine didn't breach the cabin of my vehicle, that I didn't have broken bones.

But fuck I cannot handle one more shitty thing. And this body feels more like a prison than ever before.

#chronic fatigue #chronic illness #chronic pain #chronically ill #eds problems #car accident tw #back pain #whiplash #griefsucks #grief #griefandloss

[bitsofash-phoenixborne]

I just want to acknowledge this, not because I need anything in response, just because I need to get it out there.

I know there's absolutely nothing that can fix the past. But fuck if it doesn't gut punch me every time I hear something is permanently ruined in my body that could have been fixed years ago. Not only do I hold anger for all the adults (who could see something was off but never pursued it), my heart also breaks for my child self, knowing she didn't get the care she needed. And my heart breaks for my current self, knowing I've done what I can to improve my circumstances and it won't ever get better.

#chronic fatigue #chronic illness #chronic pain #chronically ill #eds problems #hypermobile eds #childhood

[bitsofash-phoenixborne]

I think it’s important for disabled people to know that its ok for us to mourn over the things we can’t do anymore or maybe could never do. It’s ok to remember times when you were a little more able bodied. It’s ok to lament the things you used to love doing. At the same time though, it’s important to not force ourselves to do what we know we can’t or shouldn’t do. Regressive disabilities are not the end of the world and it’s good to know that but it’s ok to mourn what could have been. Give yourself space for it.

[bitsofash-phoenixborne]

Single use items are always going to be lifesavers for disabled people and I think it's very important to remember that. You could have dishes piling up that you don't have the energy or strength to wash, or you could use paper plates and plastic silverware that you can just throw out. Don't leave us behind in your environmentalism.

[bitsofash-phoenixborne]

Are you alive

Don’t ask me no personal shit like this

[bitsofash-phoenixborne]

shout out to my homies who experience emotions and empathy in a way that is not conventional

you are not a monster for having low or no empathy

you are not sensitive for being hyperempathetic

you are not heartless for having alexithymia

you are not too much for experiencing emotional dysregulation

you are not clingy or a bad person if you have no emotional permanence 

the way we are, and the way we experience the world is just as beautiful, and just as human as the neurotypical ideas about emotion