One Of The Worst Parts For Me About Chronic Illness Is Not Having Answers.

reaching out for help feels like this:

“hi, i know i need help and i am not coping.. and i dont know what to do that will help me”

“well what do you need from us exactly? what do you want me to do?”

“i dont know…?”

“well i cant do what you dont ask for”

“great.”

this is a controversial opinion and I’m not a gamer but I don’t need my graphics to be that good. I don’t need to see every individual feather on a bird. my poor computer doesn’t deserve to carry that weight either.

blog info 🌷🍯

hi my name is bee, welcome to my main blog! it’s basically my diary.

here i talk about my experience as a LSN disabled/chronically ill person! i am medically complex and have medical PTSD. i also talk about abuse and childhood trauma. if any of those topics trigger you this is your warning ♡

all about bee 💌

art blog + art tag

chronic illness/disability + life updates

mental health + diary

human rights

music

books + reviews + writing

fandoms 🍰

barbie ever after high marvel precure strawberry shortcake tangled winx club

Free Palestine.

THIS IS GENIUS WHY HAVE I NEVER DONE THIS

slay ty to ur partner for accidental allyship

People who spend a lot of time in/on bed, I have a recommendation for you... Go to some big and cheap store like Kmart and get yourself a kids activities tray!

My partner got this for doing crafts on the couch but we've repurposed it to be a writing surface for my bed-rot days. It's not perfect (I'd prefer a surface a bit higher, and it squishes these thicc thighs a bit) but it's a pretty good stop-gap for $10-20

really struggling with this atm.

ive lost all the strength i fought so hard for the past two years. it doesnt seem fair that it can all be taken away so fast.

im exhausted. trying is exhausting.

disabled consistency prt. 2 prt. 1 here (u dont need to read it to understand this post)

what happens to consistency, to habits, when you have a dynamic disability?

i want us to understand the differences between having a consistent body and having an ever changing one. sometimes you could be so healthy you are working/studying, exercising a few times a week, socialising, and independently caring for yourself. but other times.. you’re bedbound? can’t even shower and brush your teeth twice a day? can’t keep up with texting your friends or social media? what habit is surviving that.

you work so hard to build habits and follow routines you and your doctors have set, and then you achieve it, but then it all gets taken away in a flare-up. you wonder what the point is. its a constant vicious cycle. even abled people know its hard to build habits. it takes time. and you might not have that time.

for abled people, theres no time limit on building a habit. they might have a goal in mind of when they want to achieve it, but theres no actual clock ticking in the background.

for me, and for other dynamically disabled people, we are on a time crunch. you may not be aware of it, but you are. it’s always a race to get things done while you can, build those habits and routines and get consistent and get your life together while you can. because even if you’re not thinking it, you are living on a countdown until your next flare-up. until the next crash, the next time you lose all your progress.

and that cycle, is exhausting. it’s like building a sandcastle right on the shore. you build it and you get to revel in it for a second. then it’s gone. there may be a little bump in the sand where your hard work had just stood, but essentially, you are starting from scratch. while the abled people are up the beach a few metres and their sand is perfectly wet and perfectly dry and the waves never reach it.

then those same people, tell you to just keep building. “eventually you’ll get there!” “keep trying!” “habits take time!” they say. but how? there will always be another wave.

understanding this difference in experience is so important if you want to understand why you can’t just tell a disabled person to form habits or be consistent and expect results.

people dont understand the boredom of being disabled.

i see a lot of people suggest to people to embrace boredom and creativity will come from it. that to improve your attention span and get your life back from the trap that is quick form media you need to be bored more.

but i dont think that is the case for many disabled people.

its not the case for me.

i am SO bored. EVERY day. i cannot do all the things i want to engage in. i cannot play games i cannot read i cannot do art i cannot bake. these things arent being stopped by a social media addiction, they are being stopped by my health.

and my attention span isnt struggling for the same reasons as many abled people. mine struggles because of my symptoms. my fatigue, my pain, they are distracting and fog my brain.

so disabled people, when youre looking for tips about how to improve your attention span, and engage in your hobbies more, keep in mind that the reason for your struggles may be completely different to the people who are sharing suggestions and tips on the topic.

My “my songs” 🎀🎧

“my songs” are songs where you go “this song is for me it is mine.”

people can have the same “my songs” that doesn’t make them any less yours, they’re just also someone else’s mine.

its just songs that get you on another level, songs that represent you!

Do not really know what to say. A year ago we were making posts about how Gaza was being bombed through Christmas- how the oldest Christian community was being bombed- how the birth place of Jesus was being destroyed and his people murdered. A year later, it is going to be Christmas again soon, and the bombings have not stopped. But the news, and the attention seems to have died down considerably. It feels terrible and scary.

guys what wards do young people go to, im always the only young adult in my wards, im clearly missing out on the cool areas 😔😔

I feel like most able bodied people see wheelchairs as the worst thing that could happen to a person. When I discuss my want to have a wheelchair for various reasons, most peoples first reaction is to be surprised that I could voluntarily consider that.

But what they fail to consider is that, unlike them, I very much hate walking. It causes me pain and fatigue, it is a miserable experience.

So to any able bodied person reading this, yes some wheelchair users like walking, some want to gain that ability back, but that does not invalidate the feelings of wheelchair users who absolutely hate walking.