unmaskingdisability

[unmaskingdisability]

just wanted to share the National Down Syndrome Society’s message for this year’s World Down Syndrome Day (21st March) 💛💙

[unmaskingdisability]

The true answer to how am I doing lies somewhere between "still haven't unlocked a micropet I got the day of the election on finch bc I have brushed my teeth that few times since," and "have missed most holiday hangouts this year due to high pain and sheer exhaustion and redoing things here meaning everything has been a slow slow slow slow tread of progress towards things not being in total chaos."

I think I've only cried once since then? I think everything feels so unreal, like a doomed timeline in an early 2000s webcomic. The man you watched on Celebrity Apprentice with your mother is going to be president, again!, instead of two women and meanwhile your partner's mother 'only found out he was anti trans???' in the days after the election when I hit her up to let her know her son was suicidal.

And meanwhile you haven't talked to your grandmother in ages and that's the thing that matters the most and is also the hardest bc every time is a reminder of how bad things are and how much worse they are getting and the man who abused me over half my time on earth is there, hovering in the background and getting windows into my life and

I had to leave the family snapchat group bc it showed him updates on my garden my dogs my partner even though I blocked him on it Even Though he'd told me to fuck off and lose his number and even though it's the 6th time or so he's kicked me out or otherwise told me to fuck off and even though that's ridiculous it sure doesn't hurt less or feel

Real. It was cold for a couple of weeks there and every day is work on the bedroom the first bedroom with walls and paint and not open studs in years and every night was numb fingers and hair stuffed in hats and a week without running water bc the pipes froze over.

Winter officially started this week. Christmas chanukah a missed celebration with friends and trying not to vomit from pain and failing and cleaning that up on top of it all and your therapist challenging you to ask someone to come over to help move furniture so you don't hurt yourself and you can't bc if you could just get to the end of the chaos for one day one week then when things were In order yu can ask for help (???)

And you are so afraid and you lead with fear and you see it and hate it and hate the gulf it and your own body's inability make between what you want to do and who you want to be and the many many many many steps you are have been are always taking tontry to get there and just

Never being enough to get that one day where everything is in place and you can still show up afterward and you know the answer is to let people in but

There's a million books and songs written on how difficult that is

[unmaskingdisability]

i think when you're physically disabled in a certain way it gets to the stage where, at some point, you are left in your own filth. and this is an affront to dignity.

either because of an additional illness, a flare up, neglect, cancelled support services etc. either you don't get enough help, or any to manage your basic needs, and it's not possible to manage them yourself.

going days without showering, being in a dirty bed with your body fluids, or food detritus. fuzz on your teeth, unwashed tangled hair. feeling sweaty and grimy and unclean and not being able to change that - regardless of how much you want to change it, how much you try to do anything.

and in all honesty there's no guarantee that on a good day or a good few hours - for those of us who have those - that we will even successfully redirect our attention and energy to what we actually want to do to clean ourselves up.

and this can play hell on someone's mental health, and self image. it can become traumatic to be dirty. it doesn't make us worth any less, deserving any less to be forced into these positions but it sure highlights how much we rely on the support of others, and how that support is not guaranteed

[unmaskingdisability]

[unmaskingdisability]

So you want to die (but shouldn't do that)

A list of ways I force myself to keep going even when my entire body is on fire & my brain feels like it's going through a cheese grater

MAKE A PLAN WITH SOMEONE YOU ACTUALLY LIKE - Not a friend you have to gear yourself up to hang out with. A good friend, that will cost low spoons, and plan to do something you enjoy. Nothing extravagant that requires a lot of energy, and it doesn't even have to be in the imminent future. Make a dinner plan for next week and think about that lilac lemonade you've been wanting to make for them. Make a plan to hang out later this month and watch anime with your friend that's good at bullshitting and making you laugh. You won't want to do this when you can't imagine leaving your bed. Do it anyways.

DRAG YOUR EXHAUSTED ASS OUTSIDE - Dress in as many layers as you need or just wrapped in a blanket. Wear sunglasses and headphones if you need. Don't force yourself to do anything, except being outside for at least a few minutes. Sometimes it's cold and wet and all I can handle is walking out for a minute. Sometimes it's warmer and pleasant and now I'm exhausted slumped in the sun or under a pine tree instead of in a dark dirty (mine is anyways bc of the wanting to die and pain) room

VENT - Look I'm the master hypocrite. I run a disability group and I still haven't told pretty much anyone in my life I had to quit my job after my body broke down too far too fast. I advocate emotional vulnerability all day and will legitimately enact it constantly, about everything except how fucking miserable and hopeless and depressed and in pain and scared I am. You don't want to tell anyone because you're convinced they already hate you or are about to leave. I'm not gonna say you need to get over that tonight. But you gotta get it out of your head and your muscles and your body. You've gotta write or draw or splash paint (I will literally fingerpaint just colors sometimes) or hack up invasive plants or make poetry or cry to the person you do feel comfortable talking to. You've gotta get it out You've gotta get it out and also! If being honest about your life and difficulties does push people away fuck them!! Community is everything and that's something they never were, so it's space for something real

GO SOMEWHERE NEW AND BEAUTIFUL - This is one of the hardest things to do when depressed, but if helps so much when you can get yourself somewhere new & exciting and show your brain good things are still happening. For me, this looks like going to a new park, or science/art museum, or to see some pretty lights strung up for the holidays. Nowhere so crowded or busy it'll be too overwhelming, you just need to show your brain everything isn't awful static and get some dopamine pumping.

I'll keep adding to this because I'm full of too much spite and exhaustion and reluctant extreme caring so much to leave you all alone in this shithole

[unmaskingdisability]

I just have dishes left... but it feels like so many dishes..... slowly working through leftovers to make sure they're all frozen or eaten and clean out the fridge, but I have to tackle these dishes at some point. Maybe a tomorrow point

The past month or so has been really bad. A whole room full of (at least) cleaned laundry waiting to be put up, both sinks and the counter full of dishes, the only available table covered in piles on piles of things. My partner has been sleeping in until 5, 6pm in the afternoon - in the bed that is the center of the only real room in our trailer - and it makes it even harder to do anything or keep from dragging further into my own depression. Plus any energy I could drag out of myself had to go to getting the garden ready for the new round of greens coming in and pulling tomatoes and herbs and the like.

But my partner is out of town and it's the first time I've had alone time here in a few months for longer than a couple of hours. I'm recharging social spoons and slowly making my way through taking out the trash and making the bed and actually getting this laundry done. I'm trying to pace myself but I still know I'm gonna be suffering this weekend, but it's so depressing and so overwhelming and so many extra spoons to live in chaos bc you're both too sick to do anything about it. The bed had been unmade for I don't even know how many days, and I finally have it made. The trash is out and laundry is put up (mine anyway) and surfaces are slowly becoming usable again. It feels like a major victory.

[unmaskingdisability]

The past month or so has been really bad. A whole room full of (at least) cleaned laundry waiting to be put up, both sinks and the counter full of dishes, the only available table covered in piles on piles of things. My partner has been sleeping in until 5, 6pm in the afternoon - in the bed that is the center of the only real room in our trailer - and it makes it even harder to do anything or keep from dragging further into my own depression. Plus any energy I could drag out of myself had to go to getting the garden ready for the new round of greens coming in and pulling tomatoes and herbs and the like.

But my partner is out of town and it's the first time I've had alone time here in a few months for longer than a couple of hours. I'm recharging social spoons and slowly making my way through taking out the trash and making the bed and actually getting this laundry done. I'm trying to pace myself but I still know I'm gonna be suffering this weekend, but it's so depressing and so overwhelming and so many extra spoons to live in chaos bc you're both too sick to do anything about it. The bed had been unmade for I don't even know how many days, and I finally have it made. The trash is out and laundry is put up (mine anyway) and surfaces are slowly becoming usable again. It feels like a major victory.

[unmaskingdisability]

[unmaskingdisability]

people are so stunned when I tell them that saying stuff like “oh, you have a real medical issue but these other people are faking it” doesn’t make me feel safe or comfortable at all. I have just as easily been considered “those other people.” The rhetoric around “those other people” is just ableism and it always has been, you are just adding an exception because it makes you feel better about being cruel.

[unmaskingdisability]

[unmaskingdisability]

Shoutout to disabled people whose pain management can’t make up for their pain level. Shoutout to disabled people who can’t afford to treat it adequately. Shoutout to disabled people who don’t have much pain management, and not because they don’t have chronic pain

[unmaskingdisability]

Shout out to the ten year old who just got diagnosed. Shout out to the housebound fourteen year old. Shout out to the eighteen year old who can’t go to the university they wanted. Shout out to the twenty two year old who can’t get a job. Shout out to the twenty six year old with a caretaker. Shout out to the thirty year old who can’t buy their own house.

Shout out to young disabled people. We exist.

[unmaskingdisability]

Shout out to the ten year old who just got diagnosed. Shout out to the housebound fourteen year old. Shout out to the eighteen year old who can’t go to the university they wanted. Shout out to the twenty two year old who can’t get a job. Shout out to the twenty six year old with a caretaker. Shout out to the thirty year old who can’t buy their own house.

Shout out to young disabled people. We exist.

[unmaskingdisability]

Wishing all undiagnosed/partially diagnosed people a very doctors listening to you and providing you with more testing than a blood draw and even possibly providing treatment 2024

[unmaskingdisability]

In case you're wondering it DID take me a full month to call and reschedule bc I have so much anxiety around this shit and barely any access to cell, so 4 months + 1 month disability tax + the next in person appointment is in DECEMBER and I have no other choices so + 3 months

8 months on top of the lifetime of having doctors tell me it was my weight/in my head.......

..

..

Great

My gastroenterology appointment for severe gastroporesis was CANCELED the day before by them after I waited 4 months to see them and my digestion has gotten so bad I'm falling to the ground at least 3 times a day

Been on hold for 10 mins already and the music is some ghastly classical music that sounds like a funeral dirge????

Interesting Choices abound

[unmaskingdisability]

your time is worthwhile if your disability means you have to rest most of the time. if you can only do a few events a month, or a year, that's alright. if you need to sleep a lot, lie down a lot, that time isn't wasted. it doesn't make your experiences any less meaningful. feeling like you're missing out on different activities doesn't make the ones you do any less worthwhile. being disabled and restricted in activities doesn't make you boring or diminish your worth. there's no threshold for things you have to do to "really experience life" - you experience it by being alive. and every disabled life is a life that's worthwhile

[unmaskingdisability]

My gastroenterology appointment for severe gastroporesis was CANCELED the day before by them after I waited 4 months to see them and my digestion has gotten so bad I'm falling to the ground at least 3 times a day

Been on hold for 10 mins already and the music is some ghastly classical music that sounds like a funeral dirge????

Interesting Choices abound