you're so pretty. like, you're absolutely gorgeous. have you thought about tidying your room slightly to temporarily but significantly increase your quality of life? you are so beautiful

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@chronicallydee-blog
you're so pretty. like, you're absolutely gorgeous. have you thought about tidying your room slightly to temporarily but significantly increase your quality of life? you are so beautiful
Do you support minor self diagnosis?
I started cracking my knuckles in fifth grade. My parents asked me why, and I told them it made the pain go away. My parents told me that I was too young for my joints to hurt, and that I would ruin them if I kept cracking them.
By the time was fourteen or fifteen and entering high school, I hadnāt stopped cracking my knuckles. The hurt more, and the relief was more. I was convinced that I had arthritis.
My parents told me that I was too young to have arthritis.
Fast forward thirty seven years when my joints take a dive and I cannot even get out of bed on some days. I take chemo therapy pills twice a week, and I have two injections of chemotherapy ever four months. I have to take two medications every day just to manage the pain the chemotherapy doesnāt cover.
This at least allows me to get out of bed and on most days it allows me to go to school. It doesnāt make the pain go away, and on bad days I want to cry it gets so bad.
The diagnosis? Early Onset Rheumatoid Arthritis.
It went unchecked for twenty five years, my immune system eating away at my joints like a buffet even though I wanted to go to the doctor from day one.
If I had gone to the doctor and I had been wrong - they found nothing - well, we would have been out a few bucks for the doctorās visit.If I was right - and I wasĀ right - I would have been treated for 20 years.
If I had gone to the doctor on my insistence that I had arthritis at fifteen, I would not be in pain today. This would have been treated twenty years go.
Do I support minor self diagnosis?
Yes. Absolutely.
I would rather a minor self diagnose and be wrong than a minor ignore their body and suffer for 20 years like me. No one is harmed by listening to a minor and taking their concerns seriously. But that minor might be harmed for the rest of their life you ignore them.
My choice is always to listen to the minors about their bodies.
My choice is always
to listen to the minors
about their bodies.
Beep boop! I look for accidental haiku posts. Sometimes I mess up.
beep beep sometimes when you have been in survival mode for a long time the parts of you dedicated to Wanting Things atrophy and you forget how to envision a future that feels rewarding because you are busy with the business of staying alive, and it can seem like your life must be pointless because you canāt imagine any long term goals. sometimes even when you leave survival mode you canāt remember how to Want Things. that doesnāt mean you need to give up on having a good and fulfilling life, it just means that Wanting Things is a muscle you need to gradually strengthen. the part of you that has dreams and aspirations is still there, it just fell asleep, but if you wiggle it enough it can and will regain feeling. itās okay to start small
Just a friendly reminder for those who need it
When no weekend is long enough to recover from the previous week...
When fatigue makes you learn how to be super efficient...
When Iām trying to get to sleep and the shooting nerve pain starts...
Things I say to the nearest wall...
What people think of when they call me a fighter...
What it actually looks like toĀ āfightā a chronic illnessā¦
Meirl
š¤£š¤£š¤£
When abled peopleās health is at risk, suddenly all the accessibility and changes that disabled people have been fighting for is immediately put in place.
This is a great take on the issue by @autistictic on Twitter!
i hate when i feel sick and weak and i cant do things deemed "basic tasks"
i hate when my hands cant hold my coffee cup to my mouth because my fingers wont curl around it and keep the pressure needed
i hate when a headache flairs and all i can do is cry
i hate that i need your help
i dont want to be too much, i dont want to hold you back or burden you or make you feel overwhelmed
i hate this
i hate being a mess
Hey, you. One spoonie to another, I'm really glad you're alive.
I believe you're hurting and doing your best. You don't deserve to be sick or the shit you get for it. Symptoms fluctuate, it doesn't mean you're faking or unworthy of help.
Being sick, we're under so much pressure to not only fake normalcy but to prove we have a right to exist and be worthy of love. It's exhausting. It's to the point where we feel we need to ask permission just to practice self care and rest.
You don't need permission but I'm giving it anyway. For me, please take some time for yourself. Engage in hobbies you like, they don't have to be productive. If you wanna just rest and watch tv, that's okay. Please have some water, something to eat. Stretch your back, relax your shoulders, take your meds, go to the bathroom.
You don't have to be productive or thriving or even functioning to be worthy of compassion or self care. You don't have to be an inspiration or a warrior, you can just be.
āYouāre tired because you donāt exercise.ā
Considering Iāve had the worst symptom week in months since being approved for excercise - gentle tai chi - and feel shittier than ever, I beg to differ
here's a list of things i think abled people should know,, especially since it's disabled pride month!
don't touch someone's mobility aid or try to take it away from them! just because they look "too young" or whatever excuse you make up, doesn't mean they don't need it
don't ask what someone's disabilities are. just,,,,don't
"disabled" isn't a bad word!! most disabled folks get very uncomfy if you use phrases such as "differently abled", "physically challenged", or anything of the sort
don't give unsolicited medical advice, especially if you're,,i don't know,,,not a trained professional??? i don't care if your great aunt ruth got better with yoga, i tried, it makes things worse
if you're on a bus, give up your seat for disabled people
don't use the disabled parking spots and accessible bathrooms, it would help a whole lot
don't make fun of how much/little we sleep. insomnia, fatigue, and not being able to sleep because of pain are all very real (and very shitty) things
i know it's hard but like,,don't stare at people with mobility aids? oh and don't act super awkward around someone JUST because of their mobility aid
if we say we can't do something, don't say "just try harder!" or any variation of that. truth is, we're probably already trying our hardest
listen to disabled people! if we say something is ableist, take time to reflect on yourself. if we say we need help with something whether it be because of a mobility aid or not, try and help out. if we say we can't do something, don't push us to do the thing.
make your stuff accessible!! add captions to videos and movies and add image descriptions to art and pictures!
remember that death is not a fate worse than being disabled and that disabled people are not disposable!
that's all i could think of,,but feel free to add on! :]
Disability Pride Month 07-07-20
This is All They Tell Me: Part VIĀ [Part I] [Part II] [Part III] [Part IV] [Part V]
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