happy pride month to all my fellow queer humans who are in the chronically ill community!!! keep being uniquely beautifully you!

♥️🧡💛💚💙💜

Hi all, i need a bit of reassurance. I know none of you are professionals but, I've been having these strange attacks that are starting to scare me. This is what they're like:

Symptoms:

• Severe neck pain that radiates to the face and under the skull (right side only)

• Mild numbness on side of face/arm (right)

• Blurry vision in right eye only

• Sudden severe fatigue

• Mild disorientation and confusion

• Mild speech difficulty

• Moderate difficulty walking

Onset: Sudden - Duration: 30 mins to 1.5 hours

Frequency: Week of 5/26/24: 2 to 3 times (has occured prior to this)

Relevant conditions: Cervical radiculopathy, migraine headaches, connective tissue disorder

Relevant family history: Aneurysm (father, at 18), Stroke (paternal aunt, in 30s)

...Basically, I'm not crazy for wanting to get aneurysm/stroke/TIA ruled out, right? I should call my doc or insurance's nurse line? Even if it's a migraine, I shouldn't risk it given my family history? Last time it happened was yesterday and the pain was the worst it's been so far.

Also just need to write this out for my sanity cuz staring at this, my reasonable side says better safe than sorry. Ugh. I hate having been gaslit so much.

So a romantic partner and I were talking about my disabilities, chronic pain, and my excitement for a mobility aid. He mentioned that it was weird that I had been in pain so much lately, and I said something like, “weird for you, but my normal. Welcome to being disabled!”

To which he replied “for now.” He was very, very insistent I wouldn’t be disabled forever.

I didn’t know why but it made me so, so angry. When I tried to tell him no, my issues are degenerative and lifelong, genetic with no cure, he basically said he refuses to accept that to be “optimistic.” He got mad when I pushed back that he needed to mitigate his expectations because I’m working really hard on acceptance so I don’t push myself too hard and hurt myself more (which I 100% have been doing.)

My guy/gal/person/whatever: if you cannot accept me disabled, I am going to assume you can’t accept me in my entirety. Sure, I get being hopeful about new therapies and treatments - I always am! - but there is a point you need to accept that pain is a part of my life. Disability is part of my life. Sometimes those things are small, sometimes you can’t ignore them. There are plenty of days I’m walking around and seem fine, sure, but that’s only because people don’t see the aftermath. The pain management, the chronic fatigue, the fainting. People don’t see me on my bad days because I’m *not able to leave my apartment*. Not to pull a cliche, but if you can’t love me just as enthusiastically on my days when I can’t get out of bed from pain, you don’t deserve me on my days when I can walk around the store for 30 minutes and maybe do some craft projects.

More importantly, I tend to trust you less to help me on the former days if you can’t accept my disability for what it is and meet me where I’m at.

It’s taken me a long time to accept my pain and disability, a lot longer than I’d like to admit. While I do not love my pain and limitations and don’t pretend to, they are part of me. I don’t expect other people to love them, but I do need others to accept them.

My walker doesn’t mean an end to fun days with my friends on the Terrace splitting a pitcher of beer, it means more of them. Accepting my disability doesn’t mean rolling over and rotting, it means working with what I can do to make the most of my life. Accepting pain doesn’t mean I let it rule me, it means I do things to avoid triggers while still living my life. Limitations don’t mean I can’t do anything ever, sometimes it just means getting creative in how I do things (and I am aware how privileged I am to make that statement, because other disabilities or my current without needed support would be much more devastating.)

Disabled is not a bad word.

psa if you have bendy bitch disease a pair of spanx will change your life

Guys can disabled people reblog this with stuff your partner(s) and friends do for you that you really appreciate?

I'm doing some writing stuff so pretty much any disability goes, it can be invisible or visible, it can be a neurodivergencey i don't care as long as you are disabled in some way

You don't have to disclose your disability if you don't want to, I just want to see some things that the people around you do that you appreciate!

this meme is so niche

anyone else ever wish they could lie down harder? Like, I'm already horizonal, but I need more horizonal. I need to be absorbed by the floor. I think that would fix me

stop villanizing disabled people. stop assuming we're just being lazy. stop assuming we could be trying harder. stop assuming that we'll "feel better" in a few weeks. stop assuming that we have the same energy levels as everyone else. thanks for coming to my ted talk.

I think the reason why people want to know what's "wrong" with disabled people is because they want to reassure themselves.

They want you to say you were in a horrific accident or that you have a well known and treatable disease because they think they can stop it happening to them.

They think their health is a given because they aren't a dangerous driver/ an alcoholic/a drug user/obese/an unhealthy eater etc. Obviously this isn't true but it's easier for them to think of it like that.

Until one day they meet someone who did nothing. They're not really asking "what's wrong with you". They're asking "what went wrong" because they think they can avoid it.

So when they meet someone who made all the right choices, who was healthy, who was safe and one day woke up sick and never got better, it scares them because some part of them realises that it could happen to them.

They can exercise and eat a balanced diet and be as careful as possible and it doesn't do a thing and they can't do a thing about it. That terrifies able bodied people.

People like to look for something or someone to blame and they hate it when there's nothing there.

dear parents, if your child has "seemed fine this entire time" but is now seeking out diagnoses, mobility aids, medical help, more doctors, and is sharing their pain more. do not fucking shut them down? even if it ends up being nothing, showing them that support through all of that will seriously help them. if it ends up being something and you're a bitch to them, the joke will be on you and that strain on your relationship will never go away because. you didn't listen.

listen to kids. we tell you what we need, it's not that hard.

people with chronic pain and chronic fatigue will be like why does it hurt and why am I so tired

Earlier today I was thinking about how I'll be in pain every day for the rest of my life, but a kind gentleman today told me that I don't really know that. Yeah, I have chronic issues. Yeah, there's no cure right now.

But I still can't predict the future. I have no idea what kind of medical advancements will occur in my lifetime, or what treatments I'll find in the future. It does seem grim now, and I do know that as it stands, my pain isn't going away. There is no end in sight.

That doesn't mean I have to condemn myself for eternity, though. It just means I have to take each day as it comes, take care of myself as best I can, and just stick around to see what happens. Either way, my life is worth living. Disabled lives are not hopeless. There will be something good in each day, as long as I'm open to it.

I know its kind of silly to say “don’t feel bad for canceling because of pain, fatigue, etc” because I know guilt is a reflex you can’t easily refrain from. But you can reason with yourself so instead I’ll say this:

Nobody can feel what you’re feeling but you. Nobody knows the severity of what you would be putting yourself though if you were to “tough it out.”

If you do “tough it out,” the purpose for you doing the thing will most likely not be fulfilled anyway. You probably will not be mentally present or engaged. You probably will not have a good time or get much out of it. Etc.

If people really have such a problem with it, thats a huge red flag. Being transparent about your needs and boundaries is a great way to weed people like that out of your life.

If you have any kind of chronic illness or disability, remember that you probably have a very warped judgement of what is “reasonable” to endure in terms of pain, fatigue, burnout, etc.

You didn’t ask for this, you don’t deserve this, there is no reason you should have to bear the weight of it alone. I bet if someone else was in your position, you wouldn’t mind helping accommodate for them?

Low energy days are truly sacred, take them seriously. Please respect your body’s signals. “If you do not choose times to rest, your body will choose for you” or however the saying goes

It is so much pressure to have to deliberate what sacrifices are necessary for proper self care. Give yourself extra credit for having to deal with that stress on top of whatever is putting you in that position in the first place. Thats a lot at once

You are leading by example and showing others that you would never expect them to hurt or overextend themselves for your benefit. Putting yourself first always inspires other to do the same.

Please be proud of yourself for even considering canceling and putting your needs first. That is so strong of you <3

Accommodations are not special, they’re not a leg up, they’re not a benefit. They’re not putting anyone ahead in the race, nor are they taking anything away from others.

They exist to put us on a level playing ground to everyone else, and nothing more.

It me

PSA to stores:

If a wheelchair user is terrified to move around in your store due to clutter, you’re doing it wrong.

EDIT: Anyone is allowed to reblog, and disabled people are allowed to add on, so long as it doesn’t derail the point of the post! If you’re unsure, feel free to ask me!

Thanks for all the love on the post so far!