i am not ok

Just in case anyone else needed to hear this today-

Your health is not your fault. You didn’t do anything to “deserve” this. And you are right, it isn’t fair. You are allowed to feel upset, hurt, angry and jealous that your health, body or mind disables you.

It’s not fair, and that sucks. You are allowed to scream about that as much as you need to.

Doctor Beverly Crusher @SpaceDocMom The only people who think that painful, debilitating health conditions "build character" are the ones who don't have to deal with those conditions on a daily basis. emojis: black heart, blue heart, masked 3:41 PM · Apr 1, 2024

Trying to focus with chronic pain, fatigue, and brain fog is such a fucking joke. I want to remove my brain and punt it.

zelda and link’s house has stores of various hyrulean herbs and plants scattered about. a bundle of dried swift violets hanging by a window, for brewing into teas on days where one of both of them don’t quite have the energy to do their daily errands. crates of endura shrooms and stamella shrooms for making into stir-fry, for days when just getting out of bed is proving difficult. hearty truffles for times when the wear of the last century becomes too much for tired bones to bear. zelda will find herself in the hateno general store picking out various ingredients, and the inn keeper who just so happens to be stocking up on milk will notice, and she will jot down tried and true recipes that will be sure to soothe link’s aching joints.

Thing to remember if you are writing anything involving class and working class people, including game design: poverty is a major cause of AND a major result of disability and chronic illness.

If you write something where every working class person, every person who comes from a working class background, or every poor person, is healthy and physically strong, and just as much or more so if you bake that into a game system by giving people from those backgrounds high Health or Strength stats, you are making an active *choice* to erase a substantial part of the experience of and results of poverty.

Disabled people exist *everywhere*. In every setting - even when there’s magical healing or nanobots or whatever, frankly, erasure of disabled people and the experience of disability is an active narrative choice to erase us. So we *certainly* exist in *every* real world present-day and historical setting, and the fact that you don’t think so is due to active cultural erasure of disabled people and the experience of disability.

While disability is *absolutely* present in every strata of society, the experiences of disability and poverty are deeply and inherently entwined. Given that the vast majority of people are workers, and primarily physical workers throughout history - and if you don’t think disability massively impairs your ability to do call centre work, let alone food service, care work, retail work, or most of the other low-paid jobs in our current service economy, even if they are not habitually classified as heavy physical work, you need to massively expand your understanding of what disability actually is.

Poverty is generational in all sorts of ways, but one of them is that gestational and childhood poverty affects a person for their entire life. There are so many illnesses that one is predisposed to by inadequate nutrition during gestation and childhood, or by environmental pollution during those times (most likely in poverty-stricken areas). Disability and illness in parents and family members so often sees young children go without essentials and older ones forced into forgoing education and opportunities so they can care for family members or enter paid work. It’s a generational cycle that has held depressingly true in urban and rural areas, and that’s before even considering the impact of genetic illnesses and predisposition to illnesses.

Not to mention that a great deal of neurodivergence is incredibly disabling in every strata of society - yes, bits of it can be very advantageous in certain places, jobs, roles and positions, but the *universality* of punishment for not intuiting the subtle social rules of place and social environment again and again means most ND folk end up with a massive burden of trauma by adulthood. On top of the poverty that means in loss of access to paid work and other opportunities, trauma is incredibly shitty for your health.

Yeah; it might not be “fun” to write about or depict. But by failing to do so you are actively perpetuating the idea that the class system, whatever it is, is “just”. That poorest people do the jobs they do because they are “best suited for them” instead of because of societal inequality and sheer *bad fortune* without safety nets to catch people. It is very much worth doing the work to put it in.

How has your back felt since the surgery?

my upper back, my shoulders, and neck-- it's basically like they aren't even there lmao. unless I'm craning my neck to paint or something that's Very My Fault, the pain just. isn't there. Bc there really isn't any downward force from my bra straps, bc my boobs don't dream of the floor anymore. No more pinched nerves. Thank fucking god Lower back though!! That's a whole other city that the titty get riddy cannot fix. I'm gonna have that pain forever LMAO

One of the hardest things for me about being disabled that I don’t see many people talking about is the guilt of not being able to do the kind of activism I want to do. I try to educate myself as much as possible when I have the focus/energy to read up on things but no matter how much I learn and how many petitions I sign and how many creators I try to support it feels so small.

I want to do so much more for the causes I care about, I don’t want to be complicit in the things going on in the world when I see calls to action by people who need help, to be at protests and events lifting up peoples voices who need it as best I can. I have so much admiration for the people who stick out unbearable circumstances without any choice or those who choose to show up for months until change happens but I don’t know how to do that.

I feel guilty for not helping as much as I want to and not being able to donate either. It feels like I’m at the same level as the people who say things are awful and then ignore it and turn away and do nothing.

But I am fatigued, overstimulated, in pain, and barely able to keep up with my life. My job, self care, chores etc. are already too much to handle to the point where my therapist has even told me it would be a bad idea to try to volunteer because I just don’t have the energy.

There’s only so much I can sacrifice without destroying myself in the process but I feel like I owe it to the people who are being hurt to suffer with them, I’m not better than them, what excuse do I have to protect myself when they don’t have that ability themselves? What excuse do I have not to help?

I don’t know what the point of this post really is, just that it’s hard and if anyone else experiences this I’m sorry.

"erm you need to bring in a doctors note if you call out" Not to sound rude but what will a doctor say when I go in? First, Patient First on a weekend usually takes 4-5 hours to just leave the waiting room. Second, my symptoms are tremors, dizziness, nausea, extreme joint and muscle pain, numbness of the epidermis on a leg, fatigue, and a fever. Are you able to diagnose that? No? Your average doctor also can't, because it isn't that simple. This is result of my hEDS and possibly my undetermined autoimmune. You can't do anything about this. I'm not going to waste $35 for a doctor to say "idk" or "sorry, we cant do anything" when I can just be at home aware of whats wrong and resting instead.

If someone says they're chronically ill, don't expect them to always go to the doctor/urgent care. They more than likely literally know more than the doctors there.

MC Who Has Undergone Extensive Physical Therapy

Once again, I’m on my bullshit because it’s ROUND TWO of the Physical Therapy Mambo, and now I’m just imagining characters of various properties interacting with an MC whose worldview on pain and movement are deeply tied to them having undergone extensive physical therapy.

The brand of physical therapy I’ve been undergoing for years now (This is because my body in recent months crashed and backslid A BUNCH), can be summarized by the following problem-solving list in order; - Move the body part - Does it hurt? Relax the body part. - Does it still hurt? Challenge your body’s limits by continuing to Move That Way - Rest - Repeat I should stress here that my physical therapy is because my body wonks up my pain signals, so I get pain c o n s t a n t l y. It’s so bad that when I get sucked into my pain vortex, it’ll slowly restrict my movement if I listen to the pain signals and stop moving as much to try to recover to make the pain stop. I gotta keep moving in spite of the pain, and stretching and pushing my limits, or I lose mobility. And that does some funny things to a person’s worldview. So I’m just imagining an MC who carries those kinds of lessons into their everyday stuff. I’m talking “PAIN IS JUST WEAKNESS LEAVING THE BODYYYY” type beat when they’re sore after an especially rough activity. I’m talking an MC who knows their limits and will sit down to relax plenty of times. They’re not blindly challenging theirself to their limit every moment of every day, they’re challenging theirself in calculated ways. They’re not a workout enthusiast, but they have to maintain some physical work. This is an MC that the self-care and self-improvement characters who love taking care of and improving themselves will admire for their personal strength and approach to personal care. This would be an MC that’s reknown for their pain tolerance. Years of chronic pain and having to deal with the extensive pain of physical therapy has made them unafraid of pain. Characters challenge them with pain and MC’s just like “That’s all?” which shakes the foundation of characters who’re known for being more threatening/tough. This is an MC that I imagine would be hard to deter from anything. They know they can and will rebuild and recover from anything thrown at them. They’re confident in theirself. Shy/meeker characters admire them and/or fear them for their tenacity. They’re intimidating with all that confidence when facing a threat. Scratches and burns and intimidating surface-level injuries wouldn’t really register to this MC. It’s pain, sure, but it’s not like it’s stopping them from being able to use that body part. Their “Unless it’s broken, I can keep going” and “Slap some first aid on that injury and I’ll keep going” mentality coming in full swing, unsettling everyone who then is like “MC FUCKIN’ CHILL-” Gentle and loving characters being like “Please, MC, FOR ME, chill for like a minute” The flipside of the coin would be... This would also be an MC who struggles with experiencing comfort/pleasure. Chronic pain/extensive years of painful physical therapy would have burnt out a lot of their associations to touch and physical interactions with the world. They’re numb to most everything. Feeling physical comfort/pleasure would be like coming home from a long war. Characters who specialize in creature comforts would find that MC is hard to please, but when they’re pleased, they melt like putty. Characters who love to be touchy would find MC is averse to most touch in the area of their physical therapy, but would also find that MC craves positive touch in those areas. Light, tickling sensations, massages, gentle, soft caresses. This MC would likely attract a lot of attention of someone who is capable and can weather any storm, but is equally as weathered by the storms they’ve lived through. Characters who’re softer would feel MC’s exhaustion, gently doting on them and giving them special attention and treats and little gifts. Characters who’re responsible would find MC to be admirable as well, but they’d also see a need to reassure this MC that they’re doing well enough. Likely even learning the statistics of back-sliding and reminding MC of how far they’ve come from when they began their journey. I imagine that the characters that tend to always have to do everything themselves would have a respect for this MC, seeing how hard they work day in and day out. Characters that tend to take care of others would feel a yearning to help MC put their feet up and rest, or relax after an especially rough day of physical therapy.

Having severe anxiety and chronic illness is constantly trying to figure out if you’re spiralling or this is actually not normal for most people but you feel like shit 24/7 so you’ve just been ignoring for the past four years

I think it's immensely fucked up that I was forced onto a medicine for months that made me severely ill and didn't even work and pretty much the reaction of everyone I spoke to about it was "oh yeah, that happens." People thought it was fucked because the medicine didn't work but the fact I was being told to take it despite how ill it made me unless I wanted to be left high and dry was irrelevant to them. The fact I was not allowed to change medicines or stop taking the medicine wasn't important, and to the doctor, neither was the fact it didn't work.

It was awful. I was severely depressed, I could barely do anything, I had a throbbing migraine constantly, I had to wear dark sunglasses and stay in dark rooms and I could barely eat anything at all and what I did eat made me sicker. But apparently that's a price I agreed to pay when I started getting help for my migraines and all my other doctors agree that while it was a shitty unfortunate event, it was pretty standard.

And maybe it's just me but I don't think doctors should be allowed to force people to take drugs like that or refuse to try something else. You're not supposed to be taking control of my choices, you're supposed to be expanding them. I also don't think they should be allowed to leave me in that condition for months after causing it and do nothing. I don't think it was just fucked up, I don't think it should be allowed. At all.

Doctor Beverly Crusher @SpaceDocMom You're allowed to be angry at your disabilities and/or illnesses. You don't have to be, but you're allowed to be. Never let anybody police your emotions about your health. I'm here for you to support however you feel about all of it in any given moment. emojis: black heart, blue heart, masked 1:10 PM · Sep 4, 2023

Fun fact: The only way to get Alastor into a more relaxed, casual position is to take away his microphone (by which I mean take it out of his hands and give to either someone else or lean it against a wall or something. All the screenshots are from Hello Rosie! and The Show Must Go On because I noticed it first in Hello Rosie! lol)

If he has his microphone he's usually in a position where one of his hands or both of his hands are holding his microphone behind his back and if he's standing still he's usually leaning on his microphone, seeing him more relaxed and laid back is really fun lol

Modern au chronically ill Xiao is so funny to me because I can't imagine him being anything but a full blown martial artist/reabilitiang kid who was part of organized criminality or whatever.

So imagine Xiao, in constant pain and shit, having a spar with another student and getting sucker punched in the nuts or something and not even flinching because his baseline pain is soooooo low he cannot feel it basically. That would be hilarious.

About 12 million people in the United States – nearly 5% of the adult population – have chronic pain that is accompanied by anxiety or depression so severe that it limits their ability to work, socialize and complete daily tasks, according to a new study.

The co-occurrence of chronic pain with anxiety and/or depression (A/D) is well known, but little research has been conducted on its prevalence or impact. To see how often the symptoms occur, researchers at the University of Arizona Health Sciences analyzed responses from nearly 32,000 people who participated in the 2019 National Health Interview Survey.

Their findings, published in in the journal PAIN, show that adults with chronic pain are about five times more likely to report anxiety or depression than those without chronic pain. The risk is even higher in adults with “high impact pain” – pain severe enough to limit daily life and work activities -- who are eight times more likely to have A/D. "The study's findings highlight an underappreciated population and health care need -- the interdependency between mental health and chronic pain," said lead author Jennifer De La Rosa, PhD, director of strategy for the UArizona Health Sciences Comprehensive Pain and Addiction Center...

...Researchers say further studies are needed to see if people receiving pain treatment are also getting mental health care, and whether that care is helping with their symptoms. A recent study found that anxiety, depression and other mood disorders often precede the development of fibromyalgia, irritable bowel syndrome (IBS), and chronic fatigue syndrome (CFS). (Read more at link)

Yeah that was exactly my experience. Struggled with depression and anxiety from early teens and then by late twenties I started developing chronic issues starting with IBS, but also eventually including Fibromyalgia and a herniated disk. Although I did suffer from severe migraines in my teens too that aren't as debilitating now.

Also there is a risk of taking benzos for anxiety and opioids for pain together. Some doctors won't even prescribe opioids to people on benzos like Klonopin and Ativan. I actually managed to decrease the amount of Ativan I need monthly by just smoking marijuana daily.