spaceyrose.bsky.social
19
Lover of birds
I stand with 🇵🇸🇸🇩🇨🇩
I discuss disability a lot
Witch
I make stuff
47 posts
40 followers
30 following
Regular Contributor
Active Commenter
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What a cutie!
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Alternatively, if it's just my sjogrens giving me my bi-monthly scare, I'll also be pretty upset 😭 don't get me wrong it's better than covid but it can't keep getting away with this istg
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Every single time 😭 it's not just infinite time off, and it ensures I'll always be too broke to be truly comfortable
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My lungs are super weak so at least I'd get paxlovid for sure? And I've been vaccinated a lot since. Idk trying to not stress too much about it, but my lungs and body are super weak so I'm worried 😕
#CovidAware #CovidConscious #CovidCautious #WearAMask #Disabled #ChronicallyIll #ChronicIllness
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I'm glad it went well!
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Tbf it probably didn't help insurance didn't cover it...at least my pain treatment SOMETIMES gets paid for. But my sleep study showed that during insomnia episodes my quality of sleep was depressingly low so at least I got that validation 😭
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I don't think that though. I've met many wonderful disabled people, and the light they brought into my life was not diminished by their illness. Disabled people are worth knowing. We are worth understanding. We are people too. And I will never not appreciate the beauty of my disabled friendships.
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The worst part is being accused of being self obsessed and "making everything about me" for wanting someone to care. Says it all, really. It's human to want to be understood, unless you're disabled. Then it's selfish. B/c to know you is to be burdened by you. Least, according to society
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Most of my "friends" don't even really feel like friends. Not since I got "too sick" for most people. It cracks me up whenever I encounter someone who assumes I just get showered in attention 24/7 for being sick b/c in all honesty no one cares. People care less about me now than they did before.
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I also feel like there's some questions I'm just not allowed to answer honestly. No one, and I mean no one, wants to hear about my day. And that really disrupts your ability to connect with other people. It feels like I spend my whole life listening to other people and no one knows a thing about me
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I go to my friends homes and their families ask me about school. Driving. Work. Things everyone else my age do but I just don't. I can't. I stand out at every event b/c I'm always the only one masked. They're so kind and they ask it so innocently and I think that makes it hurt more.
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All good ideas! And yes I do have my own HEPA filter I can take, thank you
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I still use it all the time because everything interesting is in the city anyways, still sad though.
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I've got EDS, Sjogrens, VonWillebrands Disease, POTS, Small Fiber Neuropathy, VCD, and more!
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(5) and it's SO discouraging too. Right now I'm trying really hard to be independent and it just, is reminding me how much I'm not. How much I rely on help from others. And how much of a disadvantage that puts me at compared to my peers. I don't hate myself for it, but god is it frustrating. (End)
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(4) at least online if I struggle to get my point across I can just delete it or ask a friend for advice. Irl its so much harder. I get so much more overwhelmed. Verbal words are so much harder to get out at times and that causes so many issues I feel its better to not interact at all
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(3) I also think it's contributed a lot to my debilitating social anxiety. Not being able to communicate, especially to people in positions of power is scary. So is knowing that I can't ask for what I need without fearing my message getting warped.
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(2) S/Os are the only other option I have but I can rarely leave the house so most of them are some degree of "long distance." The truth is, as long as I live with my family, they're the ones with the most control. And that feels so suffocating
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I don't like having to rely on my mother so much. She always co-opts things to push her own agenda instead of focusing on what I'm trying to say. But I genuinely have no one else to turn to. Can't hire anyone I'm too broke. (1)
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Okay, thank you 💚
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I can only speak for myself of course, but I also feel like it gives off the impression that whatever you have is "mild" or "in your head."
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I swear if I have to reschedule this after waiting months 😭