sleepysleepysleepybaby

[sleepysleepysleepybaby]

brainfog girlies make some noise if you're fuckin uhhhhhhhhhhhhhhh

[sleepysleepysleepybaby]

[sleepysleepysleepybaby]

[sleepysleepysleepybaby]

‘bread is bad for you’ ‘rice is bad for you’ sorry im not subscribing to the idea that staple grains that have been integral to cultures for centuries are evil. i love you carbs

[sleepysleepysleepybaby]

Oh, to be horizontal in a vertical-centric world

[sleepysleepysleepybaby]

My first disabled role model

When I was an undiagnosed teenager, dealing with all kinds of symptoms, I discovered Claire Wineland. I learned from her that I didn’t have to wait until I was healthy to start living my life. As she once said,

‘You can have a painful life, you can have a difficult life, and you can still have a good life.’

That message changed everything for me. It made me realize that waiting for a 'better' version of myself wasn’t the answer—life was happening right then, even in the middle of uncertainty and struggle. Claire didn’t romanticize being disabled, but she also didn’t let it define her joy. She showed me that life isn’t just about survival; it’s about finding meaning in the now.

Years after her passing, her activism still lives on in me.❤️ (Red heart emoji)

[sleepysleepysleepybaby]

I copy pasted parts of this but I do hand letter everything, because while I'm trying to work easier as I'm chronically ill, I am still chronically stupid

[sleepysleepysleepybaby]

I basically live my life in bed when I’m not actively doing other things. That’s the only way I have the energy to do anything at all ever. When I do one of my hourish rehab classes, I’m usually flat in bed for most of the rest of that day and the entire next day, because delayed-onset fatigue is a thing my life is defined by.

It’s not remotely what people think of when they think of “pacing”, but it’s much closer to the daily reality of most people who live with fatigue disorders than the “I take a break for half an hour then I’m fine to go on” people picture when they hear the phrase.

I have heard the word “pacing” at almost every medical appointment I have ever mentioned fatigue at, and never yet had the slightest advice on doing it. Not even the ongoing CBT and Mindfulness websites recommendations I get if I ever mention low mood etc. The term is applied as a panacea by people who have zero understanding of what “pacing” is, how to achieve it, or what it actually means in the context of most fatigue disorders. Or how much pushback most people with those disorders will have when actually trying to implement it, because most people, including healthcare professionals, parse resting as “not trying”.

For people with fatigue disorders, pacing is *radical* in its effects on capacity. It lets you actually have some life, which is the big thing fatigue disorders feel as if they take from you. But we are stuck figuring it out for ourselves against enormous pushback.

[sleepysleepysleepybaby]

Being sick for anything longer than three days is unreasonable. Like okay, I get it, let's fucking wrap it up here

[sleepysleepysleepybaby]

Take care. All of us have a limit. We can't be productive all the time. Just because someone works longer does not mean they're superior. Only you know what you're going through. Only you know what's best for you. Take care.

[sleepysleepysleepybaby]

ok. "early diagnosed vs late diagnosed" is a spectrum, lots of experiences do not fit into neat categorization. like what do you call someone diagnosed at age twelve? or what to do about someone who grew up with a behavior plan/speech/OT for "severe OCD, sensory processing disorder, and expressive language delay" who was later rediagnosed with autism at twenty-five(hi!)?

but also. i think it's important for all neurodivergent people who are serious about forming community with other ND people to acknowledge that some ND people grow up with everyone around them assuming that they will never have any modicum of independence. so some people are never taught how to write a check, or never taught that you need to tip, because it was just assumed that they'd never handle their own money. or were never taught to read. or were never allowed to go to the bathroom on their own. or were never given any sex ed beyond "don't put your h ands in your pants." and therefore enter adulthood lacking all these skills, regardless of what their actual capabilities even are. and they spend their entire lives being restricted and limited based on others' assumptions about what their disability means, far beyond the inherent limitations of their disability.

and some ND people have repeated trauma from not getting enough help and told to "just try. harder" and failing over and over again, and being blamed for classic symptoms of their mental disabilities, and called lazy or defiant or crazy, and just told they're innately bad and wrong and horrible people, while their lives fall apart around them, because they truly can't calculate tips, or manage a trip to the bathroom without accidentally locking themself in or leaving the sink to flood, or can't keep a job and just get fired over and over for social mishaps or can't read at grade level no matter how hard they try and are just called lazy for it. and develop trauma around being told "you can do it" or "just try" or "you're fine" and start believing that they're inherently terrible people

and honestly:? both groups deserve grace. both experiences are devastating. both experiences are damaging, and miserable to live through.

[sleepysleepysleepybaby]

I’m at a point now where I never want to see another doctor again. I’m so tired of telling my story and being met with confusion, apathy, invalidation and blaming. Even if it’s subtle, every single doctor I’ve seen in the past few years has reacted like that. Not to mention I go into PEM for several days, up to a week for every single appointment. I’m actually done. If I had the energy to study for my own medical degree and just treat myself I would.

[sleepysleepysleepybaby]

Some days some of my symptoms alleviate enough (not even all of my symptoms. Sometimes I’m still feeling like shit, but just not in the way where I want/need to lay down and take it easy.) that I find myself just…doing stuff. Like, getting up and moving around and doing stuff that needs to get done. Without even thinking about it really, just seeing it needs done and doing it. Don’t even have to psych myself up or come up with a plan of action to optimize my energy expenditure and movements.

And it always strikes me, when this happens, that this is how most people live all the time. Or most of the time, at least. People who aren’t trudging through umpteen layers neurodivergence and physically disabling symptoms. They can just get up and do stuff.

And I find it really comforting, because it’s like “oh! Right; I’m NOT lazy and terrible at life and riddled with character flaws and moral failings.” Because yeah, I spend a lot of fucking time laying down and doing nothing. But not because I WANT to; because that’s the only way to feel slightly less terrible. If I felt up to doing more, I would. And I do. I’m always doing as much as I can, because THAT’S the kind of person I am. I get shit done, I like taking care of things. But I do what’s best for me and my body. It’s just that a lot of times that means doing very little.

But it’s hard to remember that, and to really FEEL it (despite knowing it, cognitively) when you don’t have those occasional doing-stuff days to compare it to.

[sleepysleepysleepybaby]

As a licensed therapist, let me tell you that the most success I’ve found with patients is not being uwu soft happy thoughts guy, and instead being someone that validates all the rage, anger, frustration and sorrow they have. Curbing it with fake positivity is unhealthy and self-destructive. Express it. If you need to cry, you cry, if we need to rage, we rage, if you aren’t good with words, we can do something more physical; I bought cheap plates one time, for this 16 year old girl who just couldn’t communicate and convey properly, then we smashed them together whenever our slow conversation touched on the things that truly hurt her, the idea being that giving a physical component to speech could help her organize ideas better, and it worked.

And after we get all that rage out of you, after we validate and shape it into something that’s nothing to be ashamed of and that needn’t be kept in a little cloister until it blows you to kingdom come, then we talk about how beautiful shit can be once rage and frustration are things you can grab by the throat. Yeah it’s not going to solve everything because a lot of psychological issues are symptoms of a greater root problem, and a lot of times, you don’t have mental illness, you simply don’t have money, but with that wholly on the table? Yeah it becomes easier to navigate potential solutions and increase resilience.

But seriously, “fake it until you make it” has a lot of merits but there’s a big red line that says “FAKE HAPPINESS” that you shouldn’t cross. Can’t blame you if you do, because we are taught “negative” emotions exist (they don’t) and that we have to repress and never ‘fail’. Fuck up a lot, and learn from it, learn how to get angry in a way that helps you and doesn’t hurt others. Way more productive than thinking happy thoughts.

[sleepysleepysleepybaby]

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while we're at it, people are such dicks about older ppl with dementia. i was at a meeting a few months ago and a woman was full of apologies bc she had to take her mother (with alzheimers) with her but like??? she's a person??? can't help but think how many times that woman has been made feel like shit bc of her mother being a bit chatty and slightly incoherent at times, for her to feel like she needs to apologize every 5 minutes. meanwhile her mother was just a person like anyone else who just had forgotten some social norms and tended to repeat stories. it is SO not a big deal and people who act like it is actually scare the fuck out of me. like tell me more about what are we supposed to do about people who don't behave exactly like you want at all times?

[sleepysleepysleepybaby]

One thing that becoming severely disabled has taught me is that i absolutely can, and will, find the humour in everything.