Chronically Ill POC

[bela40]

my attention span is so bad i cant watch something without being on my phone at the same time i always have to have 2 layers of activity when did this happen why is capitalism stealing my soul away the spectacle has me firmly in its grip

[liddelfolk]

Psychology time!

This isn’t having a short attention span (or well maybe thats part of it), but probably something called “Optimal Arousal.”(This is psychology, not anatomy, please keep your mind out of the gutter Xp)

Optimal Arousal goes like this: When effort is low, more stimulus is better. When effort is high, less stimulus is better.

I’ll elaborate. Whenever you do something easy (like maybe some homework as an example), unless something else is happening (like music or a show) you tend to get drawn away or doze off. In this homework scenario, the effort is low, so in order to keep at it and do well on working on it, you need a higher amount of stimulus, like a movie.

If something is hard, like for instance a test, you probably will try to avoid noise, going so far as to hush others so you can concentrate. The effort is high so you want less stimulus.

Keep this in mind. It can help you focus, and make life a lot easier. Dont feel bad for doing lots of different things while you are just chillin. Enjoy the knowledge!

[digitaldiscipline]

This is also the reason that when people get lost or are trying to find an unfamiliar destination, they turn their car stereo down.

[elainapoststhings]

Whoa wait turning down the music so you can “see better” is a real thing and not just something to poke fun at?

[baldursgatekeeper]

I haven’t made a post like this before, but I hope it’s helpful. It’s a (not comprehensive, feel free to add any places I haven’t mentioned) list of online places to buy stim toys. Here’s the post for online places to buy weighted products such as blankets and vests: http://baldursgatekeeper.tumblr.com/post/124128375872/this-is-a-post-listing-online-places-to-buy

For those who don’t know, stimming, also known as self-stimulating behaviour, is repetitive movements, actions or behaviours made by people with developmental disorders such as autism or sensory processing disorder for reasons such as it being calming, pleasant, and providing a predictable sensory stimuli to reduce the stress felt when presented with unpredictable/overwhelming stimuli.

Here’s the list:

http://www.stimtastic.co/ - good range of affordable stim toys and jewelry, run by and for autistic people, and 10% of proceeds go back to the autistic community

http://www.officeplayground.com/ - huge range of stress toys and fidget type toys

http://sensorycraver.com/ - especially the Fidgets section, but also has other kinds of items for people with disabilities

http://www.therapyshoppe.com/ - look in the Fidget Toys section, but also has other general items

www.southpaw.com - for stim toys look especially under the Sensory Integration heading for Sensory Enrichment, and Oral Motor (things for chewing)

www.therapro.com - look at Fine Motor Skills Activities, Oral Motor, and Sensory Motor

www.pfot.com - (Pocket Full of Therapy), has stim-type objects under a number of headings

http://www.pdppro.com/shop/shop1.php3?pt=8m&pn=&maincategory=8&subnumber=0&browsetype= - look at a number of different sections, clearly labelled

http://www.nationalautismresources.com/ - again, look through a number of easily labelled sections

http://www.sensoryedge.com/ - look at Sensory Items

http://www.sensorykidstore.com/ - look at all the sections, each one labelled for a different sense e.g. touch or sight

http://www.achievement-products.com/?domainredirect=true& - go to Sensory Stimulation

https://funandfunction.com/ - look at Calm & Focus, Sensory Regulation and Sensory Play

 https://store.schoolspecialty.com - hover over Shop Our Products, go down to the bottom of the list and click on Special Needs then go to Fine Motor and Sensory Processing

http://www.especialneeds.com/ - look under Sensory Motor

http://www.twistypuzzles.com/shop/ - twisty puzzles like the Rubik’s cube but lots of different shapes

http://chewigem.com/ - chewable jewelry for people who chew things they shouldn’t and need to redirect their chewing

http://shopau.sensorytools.net/ - Australian store, look under Fidget Tools

http://www.mydiffability.com.au/ - Australian store, look under Sensory, and Fine Motor Skills (there’s some overlap between the two categories)

Even if you are not autistic or yourself don’t stim, consider sharing this as some of your followers might have need of this list.

[spoonie-living]

WOAH, this is one heck of a list! Enjoy :)

[foxysmoulder]

but really guys

tampons/pads marketed to young kids who just started getting their periods

should be a thing

wrappers with dinosaurs and planets and glitter and cats and sea creatures 

make kids feel comfortable about something natural that happens to their bodies. 

and for goodness sake

don’t sexualize it

[spunkyy]

No. Actually. Why do you need this? You don’t. Getting your period means you are starting to mature, which means you need to drive them AWAY from needless things like that. Also, you all bitch enough as it is about paying for these things, imagine how much more money companies will charge for those things? Or, maybe EDUCATE them, so they will already feel comfortable about it. Jesus fucking christ. 

[jeancrocker-blog]

Tell that to ten-year-old me, who still hadn’t had the period talk yet in school. I was crying and freaking out because I thought I was dying. Then my mother comes up to me and says with a smile “You’re becoming a woman!” I didn’t want to grow up yet. I was ten. Fucking ten and was told to start to grow up. My mom wanted me to get away from silly little kids things because I’m fucking bleeding out my goddamn vagina.

Also some people are children at heart and like to be silly and having a dinosaur-patterned maxi-pad would be pretty fuckin’ hilarious and I’m sure there’d be a huge market for that.

Not all people with vaginas are stoic and serious and want the same frilly, swirly boring-ass pads and tampons.

[tafffypulller]

Plus if you’ve been having a miserable day and say you bought the character variety pack of pads. Sitting in the bathroom stall wanting to stab everyone and you open up some baby dinosaur pads. You’ve got dinosaurs in your underwear. No ones gonna ruin your day now.

[legolokiismighty]

U by Kotex has these, Tween pads. Sparkly box, cute designs on the pad and wrapper. There are even “period facts and myths” in each box, and the inner wrapper has instructions for how to use a pad properly. What’s more is they are smaller than standard pads. (I use these pads because I’m a petite person). Best part? Everywhere I buy them, one box of pads is less than $5. 

[saltwaffle]

^^^^^^^ THESE ARE THE BEST BTW. VERY SOFT AND FUN AND COLORFUL. DID YOU KNOW THAT EVEN SEEING PRETTY COLORS CAN LIFT YOUR MOOD? I DIDN’T. NOW I DO.

BUT REALLY THESE ARE THE BEST OK

BECAUSE WHEN MY TEN-YEAR-OLD SISTER GOT HER PERIOD SHE WAS SUPER SCARED BUT I GAVE HER MY PACK AND SHE’S LIKE THIS LOOKS KINDA COOL AND NOW SHE THINKS SHE’S SO AWESOME AND COOL BECAUSE SHE WEARS COLORFUL PADS WITH SHOOTING STARS AND HEARTS ON THEM AND SHE’S SO CONFIDENT IT’S SO AWESOME

SO YOU TRY TELLING ME THAT SEEING A TEN YEAR OLD GIRL DEPRESSED AND ASHAMED OF A NATURAL BODY FUNCTION IS PREFERABLE TO SEEING HER SHOWING OFF HER UFO AND SHOOTING STAR-PATTERNED PADS TO HER BFFS

YOU WOULDN’T GIVE A FOUR-YEAR-OLD BOY A BORING BEIGE BAND-AID NO YOU’D GO OUT AND BUY THE HECK OUTTA THOSE SPONGEBOB AND TOY STORY SHITS BECAUSE IT MAKES THEM HAPPY DON’T MAKE YOUR GIRLS GROW OUT OF THINGS THAT MAKE THEM HAPPY BEFORE THEY’VE EVEN LEFT ELEMENTARY SCHOOL

[she-wolveslord]

Ok but U by Kotex has got all of our backs. This brand dose great and empowering things for all women and even girls :)

[des-is-scum]

Why are people with vaginas expected to be grown ass adults at 10 but people with dicks aren’t expected to act like adults until their 20’s??

[lesbianrunner5-blog]

Also Party in My Pants makes dinosaur pads! You don’t have to be a kid to enjoy them. :) They also frequently have designs with spaceships and cartoon cats/animals and other cute stuff!

[chrmdpoet-deactivated20201207]

If companies can make brightly colored and glow-in-the-dark condoms for grown-ass people with penises, then companies can sure as hell make colorful and fun-themed menstruation products for young people (and all people, young or not) with periods.

[noitsnotjustaheadache]

This is such an awful thought to most people but if they don’t find anything on a test I get really discouraged. Healthy people are always like “ohh thank goodness that means everything is okay” UMM NO. That means I’m still as sick as I was & I still don’t know why, which means I went through that test for nothing & will have to go through at least one more to find a diagnosis so that I can hopefully start a treatment. I’m not hoping that I am sick…I already am sick & want to get better.

[thechronicstruggle]

YES.  this seems so hard for healthy people to understand! like no it doesn’t mean i want to be sick it means that i’m back to square one with no answers, as sick as i was before & i still don’t know why. sorry for not being overjoyed.

[sparklingkittycat-deactivated20]

Just like how they think you can’t be ill/disabled without a diagnosis.

Like, if getting test results/diagnosis was what made me sick, why on earth would I ever go to the doctor??

[spoonie-living]

A note about treatments

Something you should know: aside from really direct medical interventions, a treatment or health practice is only really going to be effective if you’re into it.

Some examples of things that really need some buy-in to really work for you: a medication, therapy, acupuncture, physical therapy, yoga, journaling, symptom tracking, diet, most alternative medicine… we could keep going.

This doesn’t mean you shouldn’t try these things, especially therapy and physical therapy.* It does mean that you shouldn’t feel guilt or push yourself if they’re just not working for you.

Everybody is different—and while, say, an anti-inflammatory diet might have worked wonders for your friend, there’s nothing wrong with trying it and deciding it’s not for you.

We’ve seen folks pressure spoonies to keep a symptom journal and give them crap when they say that doesn’t work for them. That’s totally not okay, and absolutely crosses a personal autonomy boundary.

So here’s your reminder that you are in charge of these choices. You know yourself better than anyone else.

*If therapy or physical therapy aren’t working for you, we don’t recommend dropping it immediately. Instead, try talking to your provider about why it’s not working—why you aren’t getting anything out of your therapy sessions or why you’re not keeping up with your PT routine. There’s nothing wrong with you; it just means that treatment hasn’t been structured to meet your needs yet.

Spoonie Living

[marauders4evr]

THIS SHOW IS SO PURE!

It’s worth noting that Kenneth spent the entire episode making the game (and the subsequent fight) as inclusive as possible for JJ and his disabled friends (all of whom were played by disabled actors/actresses).

[marauders4evr]

BONUS:

[marauders4evr]

Bonus #2

Of course I had to show the best part:

[stsathyre]

The show is Speechless. It’s on ABC.

[soloontherocks]

It’s a fucking amazing show. They also fairly regularly tackle issues of racism and intersectionality.

It’s worth noting that a LARGE part of its accuracy comes from the fact that not only Micah Fowler (the actor in this photoset) really has cerebral palsy, but so does their consultant, Eva Sweeney, and they deserve acknowledgement of that fact. The laser pointer AAC technology pictured here is one Sweeney invented for her own use (at sixteen years old!), and they rewrote the show to incorporate it. The show also works directly with the Cerebral Palsy Foundation, too.

tl;dr Speechless is one of the last great Non-Problematic Faves and fucking everyone should watch it. And, I mean, it has a 98% on rotten tomatoes and is considered a surefire bet for renewal. So there’s that.

FUCKING WATCH IT.

[wackd-archive]

“what accommodations can i devise to allow these gorgeous youths an equal-opportunity deathmatch” is quite possibly one of the greatest sentences ever uttered

[livebloggingmydescentintomadness]

FUN FACT

some people who are ill and/or disabled CANNOT DO WHATEVER THEY SET THEIR MIND ON! some people are LIMITED by their bodies and their health and they are UNABLE to “"just choose”“ to do something! you can’t STOP being disabled by DECIDING to have a ”“good attitude”“! I am PREVENTED from doing whatever I want because I am D I S A B L E D!! 

[livebloggingmydescentintomadness]

I would super appreciate it if healthy/abled people reblogged this post, because when people say these things it is so harmful to disabled, chronically ill, and mentally ill people

[goldpilot22]

also! saying “I can’t do this because im disabled” is NOT “negative self-talk” or a “bad attitude”!!

[thatadhdfeel]

“WOW IM SO GLAD MY DOCTOR TOLD ME ABOUT THIS” SAID NONE OF US EVER

[adhd-is]

I’d never heard of this but this is like my entire life.

Because it’s not just fear of rejection or feeling inadequate or disappointed in yourself.

It is an intense, rushing panic, or a fast downward spiral of depression, where I can go from “Today is great, I’m doing a great job!” to “I’m stupid, she hates me, why did I say that, I’m going to just kill myself” in literally seconds. Especially important is that it does not need to even be real rejection–perceived rejection (and related cognitive distortions) feel exactly the same.

This here? Is why I will cry my eyes out when some random person I’m talking to online doesn’t message me for a day, because I feel rejected. Why being told I didn’t clean something right at work makes me go home feeling like I’m going to be fired the next day. Why I procrastinate on projects or confrontation, because the very idea of possibly being rejected is terrifying, because I unconsciously associate it with a feeling comparable to flying off a roller-coaster.

[toenail-draws]

oh my god this explains everything tbh

[nineprotons]

“Why I procrastinate on projects or confrontation, because the very idea of possibly being rejected is terrifying, because I unconsciously associate it with a feeling comparable to flying off a roller-coaster.“

Oh man. This was a big part of why I was so terrible at doing projects on time or even turning them in (sometimes even if they’d been completed) because I was absolutely terrified of being a disappointment or being rejected or some such. And yeah, things just kind of snowball from there. :(

And though with ADHD medication (as well as Depression meds) things aren’t nearly as bad as they once were, I still struggle with this sort of thing, even in day to day married life. Fortunately I can better cling to actual logic than I used to, now, but it’s still definitely there just kind of lurking in the background.

[martymuses]

@coconutthegreater

[strangeerror465]

Ain’t this the goddamn truth.

[sorcyress]

Ohmygod.

[theweirdwideweb]

Reparenting Affirmations for Child Abuse Survivors

I am so glad you were born.

You are a good person.

I love who you are and am doing my best to always be on your side.

You can come to me whenever you’re feeling hurt or bad.

You do not have to be perfect to get my love and protection.

All of your feelings are okay with me.

I am always glad to see you.

It is okay for you to be angry and I won’t let you hurt yourself or others when you are.

You can make mistakes. They are your teachers.

You can know what you need and ask for help.

You can have your own preferences and tastes.

You are a delight to my eyes.

You can choose your own values.

You can pick your own friends, and you don’t have to like everyone.

You can sometimes feel confused and ambivalent, and not know all the answers.

I am very proud of you.

[clowncare]

when u used to be an overachiever but now ur barely running on enough energy to function and u dont know how to cope

[yayfeminism]

A New Hampshire Republican State Representative anonymously created the “Red Pill” subreddit.

Wow.

[sardonicblisters]

these aren’t just bullshitter dweebs in their mom’s basements trolling the internet, these are men who formulate the way we implement laws and who govern the way we live our lives.

[imamisfittoy]

^^^ Hello, yes, everyone needs to see this. It’s not always a bunch of nobodies trolling around on 4chan. It’s, doctors, lawyers, judges, businessmen, bankers, law enforcement, etc. People who have pulls on society. They literally don’t see other groups besides themselves as human or equal

[fangirlinginleatherboots]

if you’re an adult that works with kids of any age do me two quick favors:

learn the symptoms of adhd and autism and their presentation in all genders. you dont have to be an expert, just know a bit about it beyond popular knowledge.

learn to recognize signs a kid is being abused in any way. beyond bruises and black eyes. learn to recognize the fearful apologies and hesitation. do some research.

do me these two favors and save tens of lives.

that’s no exageration either. after teaching my mom basics about mental disorders, she started spotting neurodivergent kids in her classrooms and helped them get help. almost every child she’s helped has been diagnosed with the disorder she predicted and none of them would have been diagnosed at a young age without her help. knowing this stuff matters.

learn. save lives. don’t make kids grow up in fear of their symptoms and family.

[dontnuketheducks-blog]

in ALL GENDERS. very important. Girls present autism and ESPECIALLY ADHD differently than boys. and i don’t even know how it would work for an intersex kid. learn that shit.

[silversarcasm]

You cannot honestly believe that a person spending one night on WebMD has more medical knowledge than a trained professional that has spent 10+ years studying how to accurately identify mental illness.

No I don’t but here’s the thing: You are completely misportraying the reality of self-diagnosis

Every person I know who has self diagnosed has not just spent one night on webmd. People spend weeks, months, sometimes years, trying to work out what’s different about them, often referring to multiple sources.

Official diagnosis can be expensive, inaccessible, lengthy or downright impossible depending on who and where you are. Acting like only those with the privilege to be able to acquire an official diagnosis are disabled is ridiculous.

Doctors are not all-knowing. Doctors make mistakes, doctors have prejudices, doctors miss signs or misdiagnose, many doctors do not know a lot about specific illnesses and disorders or do not remember everything from those 10+ years. I had a psychiatrist who literally googled things on her tablet in front of me in sessions. 

 I’ve had various mental health professionals admitting to me they know nothing about Autism and asking me to explain things. (One place even turned me away from mental health care on the grounds that they ‘did not know how to deal with Autistic people’)

Disabled people know their minds and bodies better than anyone else. We are constantly denied agency and the refusal to acknowledge what we know about ourselves unless we have an official diagnosis from a usually abled medical professional is incredibly damaging. This creates a situation in which the medical system controls and gatekeeps the disabled community and does not help us at all.

Stop trying to simplify this issue and make it sound like something its not.

[silversarcasm]

Also: Professional diagnoses can in some cases be very dangerous and damaging to disabled people and can cause us to lose rights and be subjected to abuse

[baratheonbastard]

Like kinda related to the bottom thing: i told my therapist i thought i experienced psychosis (as in: self dx) & explained the things i experience that made me think that, and she goes “oh, yeah, that’s psychosis. I would refrain from telling your psychiatrist, you don’t seem to have enough going on to need medicating for it and it’s honestly better not to have that in your file if you can help it.”

so like, a mental health professional told me to hide symptoms from another mental health professional for my own safety

[kipplekipple]

Paincrastination: putting something off in the idle hope that you might be in less pain tomorrow.

[chronicpainpartners]

All day. Every day.

[cementforbones-deactivated20171]

it never works but I still do it.

[ciaocasper]

Things I've learned since becoming ill...

• It’s nobody’s fault. It is genetic. It just happened.

• Do not be too proud or stubborn to ask for help. You need it.

• Brush your teeth and wash your face (even just with a baby wipe) everyday if you’re able to do so. It makes you feel more human.

• Shower or bathe whenever you are able to. Good personal hygiene is good for your mental health.

• Some people will leave. You don’t need those people. Others will stay and they are wonderful human beings.

• You are not a burden. You are not useless. Do not be guilty. Please. Guilt will eat your insides.

• You have not lost who you are. You just now have to make adjustments to accommodate this new thing.

• Accept the fact that you have an illness. Being in denial will only make your mental and physical health worse.

• Clean pyjamas are a divine gift. As are clean bedding and blankets.

• Self care is entirely subjective. If you want to do yoga then do it, if you wanna sit and eat takeout in front of the TV in a squirtle onesie then that’s fine too. Whatever makes you feel good, or at least better.

• If you are tired then rest. Do not burn yourself out. It doesn’t matter what time of day it is, if you need a nap then you have one.

• Talk. Write. Sing. Paint. Draw. Dance. Do something to express your feelings. Don’t keep them inside. You’ll explode.

• Don’t worry if you can’t adjust right away. It takes time. A lot of time.

• Do not feel ashamed or embarrassed. Unfortunately illness often has embarrassing symptoms or such. It isn’t your fault. People who allow you to feel embarrassed about such things are terrible people.

• Keep your sense of humour. Some days it’s the only thing that gets you through.

• There will be good days. Grab them with both hands and enjoy them. Savour them. Spend them doing things you love, things that you can’t do on bad days.

• Prepare yourself to the best of your ability. Like…always have a hospital weekend bag packed for emergencies, keep a bed day drawer or bag near to where you sleep, have food or snacks close by, always have a water bottle…

• Take your meds. Please. If you have a serious illness for the love of god don’t listen to the “big pharma” conspiracy theorists. You need your meds. They keep you alive. They enable you to function.

• Research your illness. Keep yourself informed. But don’t dwell on what might happen. Please don’t scare yourself.

• It’s okay not to feel positive all the time. It’s okay to feel down. It’s perfectly natural. But try to be as positive as you can. For your own sake.

• Your own health comes first. It’s not selfishness it’s survival.

• Be kind to yourself.

• The bad days can be horrific but the good ones are beautiful, and so worth holding on for.

• Don’t give up on love. Just don’t.

• You are a badass warrior.

[marinaqua]

Now that I’m on an ableism-education spree, I might want to add this to the list.

To all able-bodied cosplayers:

Let me make clear, first and foremost, that cosplaying as disabled characters as an able-bodied person is okay. Just like cosplaying white characters when you’re POC or vice versa, is completely fine.

What is not okay, though, is using devices to aid these disabilities for your costume. If your desired character is in a wheelchair, please don’t use a wheelchair if you’re able-bodied. Because you’ll take up unnecessary space and get special treatment that you do not need from other people. I don’t care if the wheelchair is essential to the character. If you are able-bodied, don’t use one. Just walk.

If your desired character uses a cane, make sure you only use it for pictures and walk normally in public any other time.

Let me try to see if this metaphor works: If you’re white, it’s not okay to change your skintone to match a POC character (blackface ain’t cool yo), so please do not pretend to be disabled just to accurately cosplay a character, either.

Our disabilities are not a costume, they are cold, harsh realities. And our devices to help aid these disabilities are not props for your entertainment.

[myautisticpov]

Diagnostic criteria for autism are always so badly written.

Like, the trains thing.

I’m going to keep coming back to the trains thing because it baffles me.

So, the example used for special interests in a lot of diagnostic criteria is trains.

“Has an unusually strong interest in something - for example, trains”

And, like, sure. Okay. Special interests can be anything. Trains are a possibility.

But, like, special interests don’t appear out of nowhere. You generally have to be exposed to something first to get a special interest in it.

So, like, I know a lot of autistic people, and I know no one with a special interest in trains.

You know what the most common special interest is, in my experience?

Star Wars.

Yeah, go fucking figure, the ubiquitous movie franchise that almost everyone has seen at least one movie of is the most common special interest, in my experience.

Now, I do kind of understand the trains thing. The line between special interest and regular interest isn’t always super obvious.

Like, collecting Star Wars toys, or writing Star Wars fanfic, or marathoning the movies a bunch of times doesn’t necessarily make it a special interest.

And since it’s socially acceptable (especially in modern day nerd culture) to do all of those things, it’s not a glaring indicator of autism to outsiders.

If someone’s really into something obscure - like trains - however, it can make the fact that it’s a special interest super obvious.

But it’s still bad to have it be the go-to special interest example because it’s just not that common.

Plenty of autistic people don’t have obscure special interests. Their SIs are in the Marvel movies or Star Wars or Star Trek or Five Nights at Freddy’s.

Hell, part of the problem with women and girls not getting diagnosed is because no one notices their special interests in, like, makeup or boy bands.

When you use “trains” as the example, you’re sending the implicit message that special interests have to be obscure and out of the social norm, and that’s just not the case for most people - especially now that a lot of geek culture has gone mainstream and there’s a huge nostalgia cash-in.

Having a special interest in Power Rangers was weird for me when I was 14. It’s not now that it’s a big blockbuster movie and most people exposed to the internet review-sphere are at least aware of Linkara’s History of Power Rangers.

Special interests don’t have to be outside the social norm to be special interests. It’s how the autistic person feels about them and engages with them that defines it.