Disability Blog run by a Trifecta Gal (EDS/POTS/MCAS) | Please ask to tag (I reserve the right to refuse, but most requests will be approved. I will provide an explanation for any refusal) | My art can be found at @pastelterrors
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Can we erase the idea that low-wage workers being visibly human on the clock is "unprofessional." It does not hurt customers to see cashiers drinking from water bottles or sitting on chairs. But water deprivation and forced standing are both established forms of torture. Hope this helps 😘
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i find it hard talking to abled people because so many of them can’t comprehend not having the energy to do the dishes or brush your teeth
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heyy guys could we please not use alt text for funny extra comments. grits teeth
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Disability acceptance ≠ forgetting being disabled can suck btw.
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Some people don’t want to hear this but sometimes accessibility is not sustainable or eco-friendly. Disabled people sometimes need straws, or pre-made meals in plastic containers, or single-use items. Just because you can work with your foods in their least processed and packaged form doesn’t mean everyone else can.
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POTSie poll because I'm curious, but 21+ please because heart rates are often higher for people younger than that!
#depends on if I'm doing something that would warrant a high hr or not#anything over 110 if I'm just chilling#over 120 for mild activities#anything more than that I go based on symptoms not hr#like if I feel dizzy or faint or short of breath#postural orthostatic tachycardia syndrome
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the thing about disability is it really does sometimes boil down to "wow i wish i could do that" and then you can't. and it sucks.
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[ID: A screenshot of a tweet that reads
" 'hey, I would like to buy a candy bar with my membership card.'
'Sure thing. that will be $345'
'WTF?! $345?!!!!'
'Well, without the card it's $5,450 dollars.'
'Oh... that's not bad I guess.'
^ That's the American Healthcare system." /End ID]

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If you're a disabled young person, you've most likely been hit with the "pfft you think you're in pain now? Just wait til you're my age" bullshit from older people at least once. Everyone talks about how invalidating it is
But I haven't seen anybody mention how it's terrifying, too. Yes, I know health deteriorates with age. I know that old age is a disability unto itself. I know that the healthiest person alive will start getting aches and pains past the age of 40 and may even need mobility aids
I know all this stuff. And it always makes me think "yeah, if I can't walk without joint pain even while using mobility aids AT AGE 21, how painful will life be for me at the age where it gets painful for everyone?"
And it's hard not to feel like I'm doomed, y'know? Where most people get a period of health that they wish they appreciated more when they start to lose it, my starting point was a body that doesn't work properly and it's only gonna get worse from there. It's worse every fucking year.
TLDR stop telling disabled young people that their pain will only get worse to the point of being unimaginable as they age, WE FUCKING KNOW
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i get happy whenever i see posts from u :>
So glad to hear that! I know I don't post as much at the moment (work, wedding, and moving houses are all going on at once), but I hope to be more active again in the coming months.
I've made a lot of strides recently in the non-profit that I work for. I am itching to share details, but I fear it would allow people to easily identify me IRL. So please settle for knowing that I am working directly with a large organization to make changes in accessibility for young people in my community and I am very happy to be doing it.
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It's funny having a very high tolerance for pain but a very low tolerance for other forms of discomfort. Like yea tattoos piercings cramps shots cuts bruises whatever thats nothing. But I better not get nauseous or hear a loud sound. Or I'll die
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"Disabled people can do everything abled people can!1!1!!" I'm gonna have to ask you what you think disabled means
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23, 33, and 35 for disability asks ? :3
23. Do you have any tricks for living with your specific ability/symptoms?
I have several!
Hygiene Tips: A shower chair is a must for POTS. Lower the temperature of your showers too, if you can stand it. I highly recommend getting a handheld shower head with a button on it to pause the water flow. I find that I can tolerate showers with much warmer water since I started turning the water off when I'm not actively using it. I also recommend putting your head down to rinse your hair. Face wipes and bath wipes are very helpful when you feel gross or stink, but you can't bathe. Using a bidet instead of toilet paper has made the time between showers much less unpleasant for me. Try your best to keep your underwear clean. Change them regularly even if you haven't bathed
Preservation Tips: Don't always work up to your breaking point. There are times when it is necessary, but it isn't ALWAYS necessary, and if you keep pushing, you will push yourself into a flare. Additionally, don't wait until you are already in a bad place to use tools that might help you, like disability aids and medication.
Community Tips: Meet up with IRL disabled people if possible. Having online disabled friends is great, but it isn't always an accurate portrayal of day-to-day life as a disabled person. People come online to share the best and worst moments of their lives, not their mundane experiences. That can be very intimidating. Certain support groups online make it seem like becoming disabled is the end of your life, and it's not! At the same time, it's ALSO not something that you should be constantly fighting against to achieve the same feats as abled people. Living your life to the fullest doesn't mean climbing Mount Everest "in spite of your disability," it means taking care of your mind and body as best you can.
Misc: Cooling products are your best friend!!! Also, firm mattress + tons of pillows for positioning is the best way to sleep with EDS!
33. What is one story related to your illness/disability that you'd like to tell?
I recently had a spine MRI that received such rave reviews as: “Why does it look like that?”, “I've never seen a spine shaped like that before”, “did you break your spine and not notice??” and “what the hell are you even supposed to do about this?” 10/10 would spine again. Also, they didn't find what they were looking for IN SPITE OF HOW WACK MY SPINE LOOKED, so now I have to go for a brain MRI on Saturday 🥲👍
35. How do you find small moments of happiness when you're struggling?
I have to compartmentalize my mind. Of course, there is a part of my brain that is very scared about the new symptoms that I don't have explanations for yet as well as my normal nonsense, but there is also a part that is getting ready for Christmas, and another part that is preparing for my wedding, and another part that is enjoying the work that I do… and all of these things are happening simultaneously. If I let my fear and pain be all that I experience, I would be missing out on so many amazing things!
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29 for the chronic illness asks?
29. What is your most positive moment related to your illness/disability?
Meeting my fiance! She said that one of the first things that attracted her to my dating profile was my mobility aids. She had recently been in a relationship with a sporty lesbian and said it was relieving to find someone who wasn't going to force her into doing activities that she couldn't handle. I later found out that she has been volunteering for a local disability advocacy group for many years. I've met so many great people through her, and we've managed to build up an amazing group of friends. We frequently go to the theme parks together, and it's so nice to be with a group where nobody is offended when someone says "I need a break" or "I can't do that."
She's so supportive of me, and it is an honor to now be helping her through her own diagnosis journey!
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Disabled // Chronically Ill Asks
I don't know if we still do ask lists on this platform but I'm doing it. Reblog to have your followers ask you any of these numbers! If you don't want to answer one, just say "pass".
What illnesses/conditions do you have?
How do your illnesses affect your life?
What medications do you take and what are they for?
Do you use any mobility aids? If so, what effect/impact do they have on your life?
What illnesses/conditions do you have?
How do your illnesses affect your life?
What medications do you take and what are they for?
Do you use any mobility aids? If so, what effect/impact do they have on your life?
What illnesses/conditions do you have?
How do your illnesses affect your life?
What medications do you take and what are they for?
Do you use any mobility aids? If so, what effect/impact do they have on your life?
Do you use any other accessibility devices?
Do you have any favorite disabled/chronically ill creators?
What is one thing you wish healthy/abled people would know?
Give me a personal confession about being chronically ill/disabled.
Do you have chronic pain? What does it feel like and where does it affect you?
Do you identify with the label "disabled"? Why or why not?
What hobbies do you have? Have any of your hobbies changed/adapted to your chronic illness or disability?
What is your flare day like?
Do you have a favorite comfort item for when you aren't feeling well?
What is something you would like to accomplish one day? (small or large, short-term or long term!)
Do you have any tricks for living with your specific ability/symptoms?
Do you have any chronically ill/disabled friends? (Do you want one ( ͡° ͜ʖ ͡°)?)
Do you receive support from anyone else in your life? What kinds of things do they help you with?
What is your normal day like?
Briefly describe your personal pain scale.
Have you ever experienced medical gaslighting?
What is your most positive moment related to your illness/disability?
What was your hardest moment related to your illness/disability?
What is a positive that your illness/disability has brought to you?
Are you in a relationship? How has your relationship changed surrounding your illness/disability?
What is one story related to your illness/disability that you'd like to tell?
What makes you feel better? What makes you feel worse?
How do you find small moments of happiness when you're struggling?
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Every time I see another ibuprofen post on this site I'm like STOP
STOP
Stop.
Take that after a meal. Take it with a big glass of water. Don't take it on an empty stomach EVER. Don't take it with alcohol. You will destroy your stomach. You will end up with an ulcer. You will vomit blood. I'm not exaggerating.
Yes, you. Yes, it will happen to cute little you. With your cute little bottle of miracles. Ibuprofen really does that to your body.
Love, an adult person over 35 who can't take NSAIDs anymore
#really not a fan of the way the og post was worded#yes OTC pain relievers can have very bad side effects especially if abused#but condescending fear-mongering is not at all helpful#you will not immediately get a stomach ulcer and bleeding because you took ibuprofen on an empty stomach once#long post
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