chronicallyillphoenix

[chronicallyillphoenix]

Me: *to my therapist* I had the spoons, so I did heaps of stuff and now I'm so exhausted I feel sick.

My Therapist: This is where you got to treat spoons like cash. Just because you have them, you need to figure out if you have enough to spend, or else you're going to be in debt. Remember, you're autistic, so you regain those spoons slowly and use them quickly. Everything, good and bad, uses that cash for you. You may enjoy the activity but it's going to exhaust you just as much as a bad activity if you're not careful.

Me: Goddamnit....

[chronicallyillphoenix]

[chronicallyillphoenix]

''Doesn't know what it's like to receive love''

[chronicallyillphoenix]

They should make cat trees for humans. I think that would cure like 25% of my problems

#put together a cat tree for my cat and im just staring at it and wanna curl up in it myself #my cat laid in it for about an hour and then went to sleep on her usual spot on her chair

[chronicallyillphoenix]

The way you change your immediate reactions to things is that you catch yourself having an uncharitable/bigoted/overly judgmental thought and you catch it and replace it and then you do that a hundred times a day for your whole life and eventually one day like five years later you realize that you think differently now and you’ll always be working on something but that’s how life goes and that’s fine.

[chronicallyillphoenix]

can we talk abt disabled people without a concrete diagnosis. how diagnosis can be a privilege inaccessible for dozens of reasons. how even if you do happen to be fortunate enough to have access to doctors and specialists, it isnt easy to figure things out. how people dismiss invisible and undiagnosed disabilities. how the posibility of the issue being psychosomatic is used as a weapon to invalidate experiences. can we talk about how disabled people don't have to know why they're struggling for them to struggle.

[chronicallyillphoenix]

Ya know when people told me “when you’re finally safe enough that you can leave survival mode and start to let go of and process your c-ptsd/trauma things are probably going to get really, really bad before they slowly start to get better” I thought that was reasonable. I did not understand that by “things are going to get bad” they meant “you’re going to find yourself in the worst mental state of your entire life, but dw, that means it’s working” and tbh I simply wish someone had been more clear.

[chronicallyillphoenix]

When I say “school should be disability accessible”, I don’t just mean we need handicap rails and EAs. Kids should be able to miss a day without failing out of school. You shouldn’t be dismissed from clubs because your attendance record is “spotty” (true story). I once missed an entire week of school because of a terrible, unending migraine. I was expected to keep up with my studies despite the blinding pain that came with working on my computer. When I heard my teachers say that you couldn’t miss exams, I asked what I would have to do to be excused from them. Their response? “Either get a doctor’s note an hour before the exam or death of an immediate family member.”

I cannot express how rigid this expectation was. First of all, with my condition, I wouldn’t have enough warning about my sickness to go to the doctor and request a note. For many people, this is exceptionally difficult, especially with the current shortage of medical professionals. Next, it ignores the fact that my schedule may not line with theirs because of my medical needs. Once, I had to visit a hospital a province away (which I was on the waiting list of for over a year) on the same day as an exam. I begged my mother not to take me because I was so nervous that I would be marked as an automatic fail. I was lucky enough to make it work, but that’s only because of my spectacular support system consisting of family members and wonderful doctors.

Disabilities aren’t always about needing a bus that can accommodate wheelchairs. It’s already difficult enough for many of us to maintain school attendance without the harsh punishments involved for skipping a day. We need to be able to miss school without being punished. Only than can you claim that the school is “accessible”

[chronicallyillphoenix]

Sometimes i forget that my mental health is also shit

#chronically ill phoenix #tw vent

[chronicallyillphoenix]

I will be like "I'm fine" and then another fucking event will occur

[chronicallyillphoenix]

ily disabled people

ily disabled people who are dependent on aids

ily disabled people who are too scared to use aids

ily disabled people who have been bullied out of using aids

ily disabled people who feel like they don't need many aids or any at all

ily loud disabled people

ily quiet & mute disabled people

ily disabled people who "make being disabled your entire personality"

ily disabled people who are punk, goth, emo, scene, grunge, metal, vkei, decora and any "wierd" fashion style (especially if you decorate your aids to match you're the coolest)

ily creative disabled people

ily disabled activists

ily disabled people who need a helper

ily disabled people who want to be independent but can't be

ily disabled people who love your independent

ily disabled people who wish they could have a helper

ily disabled people who feel like you're not disabled enough to be valid

ily older disabled people who help younger disabled people

ily young disabled people who help older disabled people

ily overweight disabled people

ily underweight disabled people

ily disabled people trying to lose weight for health

ily disabled people trying to gain weight for health

ily disabled people with invisible disabilities

ily stigmatized disabled people

ily disabled people who don't feel like they fit into any of these phrases

ily disabled people !!

[chronicallyillphoenix]

Got a lumbar epidural this morning because my new pain doctor thinks that my MRI results are bullshit because we know for a fact i have congenital lumbar stenosis on my L4-L5, and the most recent lumbar mri said everything was "unremarkable" so my doctor is just going off the assumption that the radiologist didnt actual do a good job reading it because they were swamped, which according to my doctor is normal for the company i used and is why he hates using them. He said that doing the lumbar epidural will help both my back pain and the pain in my legs that happens after walking for 5-15+ minutes straight, even tho at pt we think the problem is focused in the ankles itself. But whatever i guess we shall see if the injection helps or not

The doctor said it can take up to a week to start working and that itll be a little sore at first and christ he was right. It hurts to both sit and stand and it hurts more than usual to walk and its annoying as fuck. I am hoping it ends up working by the end if the week, i am going to hopefully go on a walk every day this week (minus tonight because they told me not to) and see if the leg problem gets any better or not

If it doesnt i am going to be annoyed because i didnt even want to try anymore injections im tired of them because they either dont help, or if they do, they only last like 12 days max

We shall see i guess

#chronically ill phoenix #tw vent #tw injections #tw needle #tagging needles just to be safe even tho i didnt mention them specifically just because i am talking about an injection

[chronicallyillphoenix]

why does everyone want disabled people to be quiet? nobody cares about our struggles. nobody is excited with us when we get what we need. everyone feels so bad for us. but when we feel bad everyone says "well, get used to it" but dont care to change the inaccessibility. this is all blurry. my mind is blurry. idk anymore. do you understand what I'm saying? please dont let this flop. scream this from the rooftop. please.

[chronicallyillphoenix]

Something I want able bodied people to understand is that I don't wanna be sick so bad; I want a diagnosis because there is already something wrong with my body but I don't know what the fuck it is.

[chronicallyillphoenix]

Went to pt this morning and was told i only have 6 sessions left for the year that insurance will cover so my pt and i talked and decided it would be best to quit after todays and save the rest in case things get really bad that way i can come back if needed. I was not expecting this today and i am not doing great because of it. Going from pt 2x a week to 0 with no warning when i am still getting use to dealing with starting a job (which also causes so much additional pain) and the knowledge that im probably stopping pelvic floor therapy at the end of this month and also being stressed out because im working an afternoon shit today (5pm-10pm) when i have only worked morning so far (11am-3pm to 4pm) and idk. Too many things are different right now and im just so sad about pt suddenly ending and i just am doing worse today than i have been doing for the past few weeks. Cant even sleep anymore because my body has decided its slept too much so idk what im going to do for next 2.5 hours

#chronically ill phoenix #tw vent #idk. pt is one of the things i looked go most during the week and now its gone with no warning

[chronicallyillphoenix]

people say folks with adhd struggle with "delayed rewards" aka long term goals and as such we tend to focus more on short term rewards. what they don't talk about is that at when we Do accomplish long term goals we don't actually feel anything proportionate to the amount of work we did to achieve it. In my head I suffered for a while and then money spontaneously appeared in my bank account.

[chronicallyillphoenix]

things about my arthritis that i experience daily. making this post partly for enlightening, partly for seeing more people with this b#tch (arthritis) relating so i'd feel less alone

i'm in pain all the time, but when one specific joint decides to go ouch? yeah i hate it

i unlearned limping within years of having it

"can we sit down and rest? thank you. oh no i think i need more than a minute. okay fine let's go walking further. *five minutes later* can we sit down?"

holding onto armrests while sitting down/getting up. that includes clinging to walls when i try to sit on the toilet or stand up from there

joints cracks

"i walked a lot yesterday so i can't get off the bed in the morning. help me"

fatigue. all the time

you know it when people throw a leg over another leg to sit like that? i grab and hold the leg i'm throwing over another one. not always, but. it hurts less this way

jumping? running? haha no. can't afford it

i had to quit basketball and figure skating. i loved it :( but crying in pain was... too much to handle

when planning a meeting with friends i always need to make sure there are places to sit down

can't fall asleep, too much pain

pain killers? you mean my fashion collection of pretty pills? :3