spooniecats

[spooniecats]

“Why aren’t you using a mobility aid now, when you were using one earlier in the day?”

Pain medication

I was preserving my limited physical ability so I could use it later in the day

Another part of my body is hurting and preventing me from using that mobility aid and I must bear the pain

I  forgot to use it and now my brain and body are on fire

I chose not to use it and completely regret it and now my brain and body are on fire

[spooniecats]

reading letters from 1818 is wild

“it’s that time of the year when I get colds for no apparent reason again” have some Clairitin hon

[spooniecats]

subtitle regulations really need to catch up to modern day productions on youtube

when you have big professional companies like bon appetit, or geek & sundry, or microjig, or americas test kitchen, and theyre producing content to put on youtube and other sites, they shouldnt be allowed to rely on auto captioning, or fans captioning it for them

closed captioning regulations had to be implemented for tv and film because otherwise, we just…. didnt get any

and now that they can get away with not doing it on the internet, theyve gone right back to not captioning anything because nobody is making them

those regulations really need to catch up

tl;dr im hard of hearing and im pissed that closed captioning isnt required on videos on the internet

[spooniecats]

im very grateful for the lessons in photography i was taught in stop motion class because just now they made it possible to photograph the stars with my phone in spite of the camera usually not detecting the light of stars because theyre so dim,,,, enjoy these shiny motherfuckers

[spooniecats]

The best sleeping positions when you are injured.

[spooniecats]

I was just watching a video of a disabled person talking about PIP assessments and omg someone commented ‘don’t you think you’re biased on this subject?’

Oh god forbid a disabled person share their experience and expertise about a topic which is exclusively about disabled people!!!

This is what ableism boils down to, people dying due to a god awful disability benefits system, and then when disabled people share their invaluable knowledge on it, we’re told to shut up because we’re biased?!

The world is fucked.

[spooniecats]

Me @ my body: I don’t take 21 pills a day for you to behave this way.

[spooniecats]

sorry what

[spooniecats]

hey so it’s march now aka the beginning of endometriosis awareness month and i feel obligated to remind you that debilitatingly painful periods are not normal. if you or someone you know is ending up sick or bedridden every month, you are not crazy and deserve medical attention from someone who will take you seriously

[spooniecats]

Please help raise awareness about a serious illness that hides in plain sight

My name is Ang. If you’ve been following my story then I’m sure you’ve heard about this, but I’ve come down with a chronic illness. I have severe-spectrum MECFS. Myalgic Encephalomyelitis, or cruelly called Chronic Fatigue Syndrome, which downplays how much of a devastating, horribly disabling and terrifying disease this is.

It is an illness that affects millions, leaving a good portion of us housebound or bedbound, some so sick they are paralyzed and need to be tubefed and others die from the illness or complications.

I’ve been bedbound almost 3 months now since my illness has been progressing (which is nothing compared to how quickly it can become years), so sick some days I cant lift a spoon to feed myself, talk, or tolerate light and sound. I can’t draw anymore which was my passion in life as an artist, let alone take care of myself. I can’t even tolerate watching TV or play games most days to distract myself from the trauma caused by being confined to a bed in this sort of agony.

I got ill like this after getting the flu in January, and it’s been downhill from there as I started having bizarre neurological symptoms and collapsing episodes where I was unable to move, the energy draining from my body as the days went on until I needed a cane to walk, then a walker, then I was housebound with a wheelchair, and now I am bedbound and the severity steadily worsens with no let up so far despite doing everything I can to stop or slow the progression.

It is a level of sickness that is overwhelming me and my life is uncertain, but it’s looking grim from this point. I’m in severe pain constantly, on top of having horrible dysfunction in every other part of my body. I’ve only been steadily declining.

I lost my entire life right as it felt like it was starting. I was an artist working my dream job at Cartoon Network, and now I may never be able to return to the animation industry or live out my dreams of telling the stories I wanted.

The worst part is this illness could have been treatable by now! But it’s not, due to a deliberate choice of abuse and neglect by medical institutions. Most doctors aren’t trained to treat or diagnose M.E. and it gets practically no funding. Most sufferers are told it’s all in our heads (wrongfully diagnosed with conversion disorder or functional neurological disorder) even with evidence coming out that it’s a physical neurological disease and the only treatment we are given is get told to take anti-depressants, see a therapist, and exercise (despite exertion intolerance being the hallmark symptom and dangerous).

So the only way people like me have any hope of getting better is if we get a surge in awareness and understanding, and hope it leads to more funding and research. With decades of neglect and lives lost, this can’t go on.

At first I asked for donations when I was trying to figure out what was happening to my body as I threw money at doctors appointments begging for help only to get turned away and given no help, dwindling away my savings from when I used to work. And while donations were loved and helped significantly in my financial situation, it will not give me access to effective treatments if they don’t exist.

That is why I am asking you to help spread awareness. Please educate yourselves and donate if you can to organizations that research M.E.

People like me are suffering with a monster illness as debilitating as late-stage AIDS or cancer, hopelessly sick and dying with little help and living in severe medical neglect. I can’t even get a caregiver which I need now because my family can’t care for me longterm, all because my illness isn’t taken seriously by health insurance companies!

We need help. People with M.E. need help so bad because a lot of us are even too sick to advocate for ourselves.

If you want to know more there’s a wonderful documentary on Netflix made by M.E. sufferer, Jennifer Brea called Unrest (2017). Please give it a watch.

Here’s the trailer:

https://m.youtube.com/watch?v=JvK5s9BNLzA

You can also see her speaking here on TEDtalk.

https://m.youtube.com/watch?v=Fb3yp4uJhq0

Here are organizations you can donate to:

https://solvecfs.org/donate/

https://www.meaction.net/donate/

Please share this. I am one of the #millionsmissing and while I have not been suffering with M.E. for very long compared to others, the trauma and destruction this illness brings is great and no one should have to go through this. I would not wish this suffering upon even my enemies.

We need awareness. We need advocacy. We need understanding. We need funding. We need diagnostic markers. We need research. We need effective treatments and hopefully one day a cure.

I may never have my old life back, and I don’t want anyone else to keep suffering the way I have since I’ve gotten sick. The pain is indescribable. I want one day for someone to get sick like I and others have, only to learn they can be diagnosed and effectively treated or cured.

Please help bring our stories to light. Please help save our lives.

Thank you.

[spooniecats]

If you are organizing an event please, please put accessibility information in an easily found place. I cannot tell you how frustrating it is to search a website for ages only to realize the information just isn’t there. Then when I call to find out the information, no one answers the phone or returns my phone call. Sometimes for days. Having accommodations available for disabled people is amazing, but if you don’t have the information posted anywhere how are we supposed to know???

[spooniecats]

what to expect if you’re a young first-time cane user

Experiences from a bitter college student spoonie

1) So I bought my cane in late September, and since school started in mid-August, people were used to me not having one, so I got a lot of “omg are you okay??” and “what happened??” and stuff like that, even from people who already knew I had knee problems. I have a lot of great friends who were really supportive and let me rant to them a lot about how people are dicks, which was extremely helpful; I hope you have people like that in your life, too, but if not, feel free to complain about ableism to me anytime.

2) Something I didn’t really expect and that’s been weird to deal with is that people will open doors for you all. the. time. Like, people will go so far out of their way and backtrack and shit so they can feel good about themselves for helping a disabled person. Sometimes it’s helpful, but sometimes it’s just annoying, especially because there are some buildings where the wheelchair button opens two doors, so if someone opens the first door for me, I have to open the second one myself, whereas if I’d pressed the button, it wouldn’t have been a problem.

3) Speaking of wheelchair buttons, they suck. I’m on a college campus and like half of them are broken, if there even is one to begin with. (I’m compiling a list of shit to report to the accessibility office.) Outside of campus in the “real world,” it’s even worse, because like nothing has a button so if you have something in your free hand you’re screwed. I try to plan when my hand is full for a time when a lot of people will be walking out of whatever building I’m going to so someone can get the door for me, but it doesn’t always work out. As a trans dude, I’m like weirdly dysphoric about purses, so if you’re the same way then I suggest a messenger bag or something like that that can hold all your shit and leave your hand free.

4) If you already carry a bag for school or work or whatever, make sure it has enough space to hold what you’d normally be carrying in one hand, because that hand is now gonna be occupied holding your cane. That was a really hard adjustment for me, and I accidentally tried to carry two hands’ worth of shit in my free hand on several occasions; it doesn’t end well, especially since I can’t bend down/squat to pick stuff up from the ground, so people had to do it for me, and that’s embarrassing.

5) People ask nosy shit and it’s exhausting. Be prepared that it’s gonna be doubly exhausting if you’re trans and out to any degree, because people already ask ridiculous personal questions about trans people’s bodies. A random cafeteria worker asked if I’d had surgery the first week I started using my cane. My favorite so far is “is your knee really that bad?” People also say generic encouraging shit that’s no help at all since no, it’s not going to get better soon. Again, feel free to rant to me.

6) Apparently people stare at me all the time, which I usually don’t notice because I’m too busy trying to get where I’m going with minimal pain, but one of my friends who walks with me a lot mentioned that. She glares at them aggressively, which is nice. I usually go with the “they’re just jealous because I look so good” response because my personality is 90% bravado, but it does get tiring, especially when a lot of people give you openly rude looks, not just curious stares or whatever. Again, compounded with being trans, that’s a lot of negative attention from total strangers.

7) Your arm will get kinda sore sometimes, so that’s fun.

I know that seems like a lot to deal with, and it is, but I honestly can’t tell you how much I love my cane; it’s made things so much easier for me and it was one of the best decisions I’ve ever made, so if you think it would help, I strongly suggest trying it. There are a lot of posts and articles out there about what kind of cane to buy and how to measure for one (from the inside of your wrist to the floor), and if you need any advice or need to be convinced to buy one or just want to talk, feel free to hit me up. Good luck <3

[spooniecats]

PSA

if you’re living in the united states and have a formal disability diagnosis—including autism spectrum disorder and maybe even ptsd—you’re likely eligible to open an ABLE Account.

it’s a tax-advantaged savings account that is also exempt from means-testing, meaning that anything you put in there can’t be counted against you for medicaid, SNAP, SSI, or SSDI.

you can pay for a lot out of an ABLE account, including basic living expenses (rent, utilities, transportation), medical expenses (whether or not they’re related to your disability), and education expenses. this account is likely going to enable me to pay for my own grs. please look into it!

[spooniecats]

[spooniecats]

I don't get seasonal depression, I just get slightly sleepier and more irritable and mopey when I don’t get any sunlight, but when I said this to my doctor she was like “you should still get a lightbox” and I did and now I have way more energy.  The moral of the story is, if you spend time thinking to yourself “well I don’t actually have [diagnosable problem], I have [milder version that I can just ignore]”, you could instead of just ignoring it get the accommodation for the problem and see if it improves your life. I do not expect to remember this next time I “don’t actually have the real problem”, but maybe eventually I will learn.

[spooniecats]