disablednotdifferent

[disablednotdifferent]

Just saw "adults with diverse abilities" as a euphemism for disabled and I think I'm gonna hurl.

Disabled. The word they're looking for is disabled. Just call us disabled. Please.

[disablednotdifferent]

hello friends!

today, i finally picked back up my gorgeous old guitar and decided i wanted to try and learn how to play again.

since chronic pain overtook my body for a long, long time (not saying that it doesn’t anymore, i am just learning how to cope with it), and i had no way to handle it for such a long time, i gave up playing guitar, as it hurt my hands far too much. my joints would be on fire for weeks after playing guitar once.

but today i decided to face my fears, and i’m currently learning how to play Remember Me, from the movie Coco.

so this is just your friendly reminder that eventually, you will be able to do the hobbies you once loved but had to stop doing once again.

remember to love yourself today folks <3

[disablednotdifferent]

"you talk about your disability too much"

it permeates literally every single aspect of my life, it has literally taken over *everything*. my entire brain chemistry changed. i will talk about it as much as i fucking want.

"you cant talk about your disability so much and not answer questions, thats just looking for attention"

im allowed to choose what i share and who i share it with. its not attention seeking, its just basic boundaries. maybe reasses why you feel entitled to information someone doesnt willingly give 🤷🏻

talking about your disability isnt attention seeking. it's literally just like talking about how your day went. and trust me, i hold myself *back* talking about my disability so i dont come across as "too much"

[disablednotdifferent]

Reminder that people with invisible disabilities aren't the only ones who get ignored and accused of lying by doctors. People with visible and severe, even deadly disabilities aren't automatically believed. Some severely and visibly disabled people die because doctors won't believe that they're really sick, accuse them of faking or exaggerating and deny them treatment. This kind of treatment isn't unique to any one kind of disability, it's something that most or perhaps even all of us have faced at one point or another.

[disablednotdifferent]

becoming ill/disabled is hard. changing your whole life around to a new routine and new normal is hard. complaining is okay. being angry or upset is okay. it's normal. all that matters is that you prioritize yourself and keeping yourself safe. don't let that anger turn too far inwards. don't let the grief drag you under. there will always be things in life to enjoy and love that will be within reach. always.

[disablednotdifferent]

Anyway,

You deserve family who try to understand your illness.

You deserve family who try to accommodate your illness.

You deserve family who respect your decisions regarding your illness.

You deserve family who nicely listen to you vent about your illness.

[disablednotdifferent]

sometimes i feel like nobody understands that i’m so tired and that i’m tired of being tired. i can’t work because i’m so tired, but i’m supposed to not be tired because i’m not working?

[disablednotdifferent]

if you've spontaneously become disabled be gentle with yourself. it takes time to adjust to your new normal and that's okay. it's not a race to refigure out your life, you have time. it's okay to grieve and it's okay to mourn, it is a loss. your life is not over and you can get through this. it's hard and it's unfair but you will learn to live again.

[disablednotdifferent]

[disablednotdifferent]

I always see those “you’ll get better”, “it won’t be like this forever”, “you will heal”, etc. positivity posts and like- some of us won’t. Some of us will never get better, some of us will never heal, and for some of us things will be like this forever. We need more positivity posts for those of us with life long conditions and problems.

[disablednotdifferent]

[disablednotdifferent]

able bodied people will freak out when they see an ambulatory mobility aid user not using their aids but won't question it when a hiker only uses a walking stick or trekking poles when they're hiking. they're the same thing.

[disablednotdifferent]

One of those things about chronic illness nobody ever talks about is just how much it makes you feel like you have to apologize.

Sorry I'm late; I couldn't get out of bed. Sorry my weird breathing kept you up all night. Sorry I couldn't make it to your party; I was half conscious on the floor all evening. Sorry I keep forgetting everything you tell me; I promise it's not because I don't care. Sorry I seem so out of it all the time. Sorry I'm not "present" enough when we hang out. Sorry I need to be taken care of sometimes. Sorry my body is breaking and it seems like it's inconveniencing you more than me.

[disablednotdifferent]

Hello Friends!

it is I, Orion. It has been a while since I have checked in with you all, and I am so sorry for that! However, I do have a reason.

Just today, I found out that i have covid. I am currently writing this post curled up in bed, fighting off Nyquil because I do not want to sleep. I have been sick for a few days now, but JUST tested positive for covid today. This is my 5th or 6th time getting covid, so while I’m used to this, it still is awful.

The kicker is, covid affects me differently than most people because of my chronic illness/pain.

So you might be asking, “Orion, How does it affect you differently ?? I thought everyone got sick the same way!” Dear reader, I am glad you asked! Here is a list of 4 things that happen to me when I get covid, and why this is my actual living nightmare right now.

1. My Pain

Because I have covid, my tolerance for pain has decreased, while my pain has skyrocketed. This means it’s very difficult for me to get around, and especially makes going up and down my stairs hurt more than it usually does.

2. The Length

Most folks only get sick for a few days, normally averaging somewhere between 4-6 days ill. However, for me, I can be sick for up to two weeks, sometimes even longer. Last time I had covid, I was sick for a week and a half. I have no clue how long this time will last, but I will keep you updated!

3. My Symptoms

Like a lot of other chronically ill persons, covid symptoms tend to stay with us for up to a month after we get over covid. This means my cough, runny nose, and terrible headache can last for a long long time, even after I’ve tested negative more than once.

4. My Fever

Yes, technically a fever falls under symptoms, but I’m also giving it it’s own section for a reason. At the moment, I’m in a pain flare up, which already causes me to have a low fever pretty often. With Covid, this fever can possibly shoot up to 102* F (38.3* C), or sometimes even higher. Once, I got up to a 105* F (41.1* C), and I had to take a lovely trip to the emergency room that day.

So, with all of those and more combined, what do I do to stay safe and comfortable during these nightmare-ish times ? I’m glad you asked!

1. Stay hydrated

Currently, I keep a big water bottle full of water with electrolytes in it next to me while I’m in bed, to make sure I stay as hydrated as possible. It helps that the electrolytes are flavored to be lemon, which is a flavor I quite enjoy, especially when I’m sick.

2. Stay Cozy

I will admit, I have not changed out of pajamas and a hoodie all day today. I like to stay comfortable when I’m in pain & very sick, and so I usually end up rotating the same several pajamas (washing the ones I’m not wearing if I’m able to get up) to make sure I stay in clothes that I like.

3. Wait it out

This one is my least favorite. No matter how comfortable or hydrated I am, in the end, I have to just wait it out until I feel better. This part sucks, as I’m in pain and violently sick, etc etc. But, at the end of the day, time will eventually be on my side, and hopefully this will go away shortly.

So again, I apologize for my lack of posts. Covid kicks my butt every time!

I will hopefully be able to keep up with posting a little more consistently once I’m over this, but until then, I am giving into my nyquil, and giving up on staying awake.

Lots of Love!

~Disabled not Different

(QUESTION OF THE POST!

What are some things you do to take care of yourself when you’re sick? Let me know!)

[disablednotdifferent]

Oh my god I can’t believe I have to say this but:

DISABLED PEOPLE CAN HAVE GOOD DAYS!!

Just because I had one day when the pain wasn’t there for long enough for me to enjoy it doesn’t mean I am suddenly “cured from my issue” or that I don’t need accommodations anymore.

[disablednotdifferent]

one major thing ive had to learn about my pain and fatigue is that overexertion does NOT result in more sleep. a healthy person might have a busy, physically active day and then have a really good sleep as a result. When I do this, I can’t fall asleep at all, and i’m often in terrible pain. So I end up being miserable twice, first when I pushed myself past my limits, and second from the resulting pain and insomnia. So here’s my message to you, chronically fatigued person: don’t push yourself when you don’t have to.

[disablednotdifferent]