thatspooniefeel

[thatspooniefeel]

Hey Spoonies

Sorry for lack of content recently! I know I shouldn't feel guilty about needing time, studying and sleep is all I've had time for recently and I'm just low on spoons 24/7! My studies are over tomorrow though and I should hopefully be back to posting regularly over the summer! Love and spoons, -G

[thatspooniefeel]

When you have a chronic illness that no one seems to be able to diagnose and you develop a new symptom

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do you ever just forget that some people are like….not….depressed?????????

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Just venting a few of the ridiculous things that abled people say to people with disabilities. I find making these really cathartic for getting out some of the frustration I feel about being told these things - hopefully it can be cathartic for other spoonies too!

The spoonie community on Tumblr is the reason I got up the courage to make videos about disability/chronic pain, and I’m so grateful to you all because I love making these and joining in the conversation.

[thatspooniefeel]

Dos and don'ts on designing for accessibility

Karwai Pun, GOV.UK:

The dos and don’ts of designing for accessibility are general guidelines, best design practices for making services accessible in government. Currently, there are six different posters in the series that cater to users from these areas: low vision, D/deaf and hard of hearing, dyslexia, motor disabilities, users on the autistic spectrum and users of screen readers.

[…] Another aim of the posters is that they’re meant to be general guidance as opposed to being overly prescriptive. Using bright contrast was advised for some (such as those with low vision) although some users on the autistic spectrum would prefer differently. Where advice seems contradictory, it’s always worth testing your designs with users to find the right balance, making compromises that best suit the users’ needs.

[github]

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shopping tip for people with misophonia

Spoonie friends, do you sometimes get that thing when any amount of noise just makes you want to FREAK THE FUCK OUT?  I was always a constant noisemaker, always have music or TV on for background sound kind of person, but in the past year or so I have become increasingly intolerant of ambient TV or video game noises, the window AC kicking on, my husband on voice chat with his gaming buddies, etc…  And we have a very small apartment.

These ear plugs are pretty great!  I also have a very small inner ear, I guess, and I can never keep ear buds or regular size foam earplugs in without a lot of discomfort, so the fact that they have sizes is fantastic because the small ones fit me perfectly.  And they’re reusable, for $13?  Not a bad deal.

The “sealing” on your ear part is a bit of a thing to get used to, not gonna lie.  My first response to suction in my ear drum was “NO, BAD,” but I’m adapting to it pretty quickly and it’s definitely less uncomfortable than a bunch of noise when noise is driving me crazy.

[thatspooniefeel]

That spoonie feel when you realize that your illness(es) prevent you from having/achieving literally every career, school, and job opportunity you ever wanted...

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chronic illness problems: “what are you so tired from” “sitting upright”

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I think “Congratulations on finally getting your diagnosis” cakes need to be a thing.

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Abled person: so if you just change your mindset you'll feel better

Me: my :) autonomic :) nervous :) system :) is :) broken :)

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I’m always a slut for lying in bed for hours on end doing nothing productive.

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Is there a way I can make homemade braces? They're more than I can afford and I don't wanna feel like a bother to my parents to ask for them Sincerely, A fellow spoonie

Hi! I don't know what kind of braces you mean, but I know you can get knee/elbow/wrist/ankle braces on ebay or Amazon for super cheap! If that's not an option, I don't personally know of any homemade ways, maybe some of my followers know of any?? -GLeave comments if you've got any tips!

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when you’re in therapy and you feel fine but then you get home and your mental illness is like ‘welcome home honey how was therapy’

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“At least you’ve got your health!”

[Image Description: GIF of Chandler from Friends slightly nodding while smiling sarcastically]

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do you ever forget that something bad you experience regularly is like, A Symptom™, to the point at which you casually bring it up in conversation and the other person is like “uh, have you seen a doctor about that??” and it takes you a solid thirty seconds to understand why on earth you’d need to see a doctor about such a normal, everyday, run of the mill, totally debilitating and generally quite painful problem

[thatspooniefeel]

On another note

I'm almost on 1k followers! I really never imagined I'd get more than a few followers. My goal when I made this blog originally was to create a community of spoonies, where we could all share our experiences, relate to each other and feel safe and understood. Now my little community is getting close to 1000 of us and I'm so so happy. Hopefully we'll grow more and more and continue to share all our spoonie feels! I love you guys, hugs and spoons, -G

[thatspooniefeel]

I posted this because I was just venting and frustrated, I didn't expect that it'd get over 1k notes in a few days and have so many responses of people discovering that this is even a thing for the first time! I really hope I've helped anyone, even just one person, realise they're not lazy. I love you all, my spoonie children 😆

Executive Dysfunction

The more I find myself having to explain executive dysfunction to people the more I realise it’s near impossible. There’s a thing. I wanna do that thing, I really do. But no matter how hard I try to tell my brain to do the thing, it won’t do the thing. I can’t tell you the amount of hours I’ve spent scrolling mindlessly through social media wanting more than anything to stop, but I can’t. This concept is so ridiculously alien to abled/neurotypical people and makes awareness/acceptance for it so hard to achieve. If an abled/nt person wants to, say, have a shower, or get some food, they just up and do it, no second thought. But the amount of mental exhaustion that goes into getting myself to get up and do one of those things can honestly be disabling in itself. It’s not laziness, or not caring. It’s a total mental block between wanting something and doing something about it. I really wish the concept of this was more widely acknowledged. We are not lazy.