#before anyone comes at me I am PHYSICALLY disabled and have level 2 autism I’m just hot and well spoken leave my ass olone

[barbreypilled]

ykw I’m all about being aware of other disabled ppls experiences and acknowledging ones privilege but it is absolutely deranged and nasty behaviour to tell a multiply disabled person that they’re lucky to be hireable enough to be worked to death for minimum wage i hate internet disability olympics so much

[my-autistic-things]

What exactly does the whole spoon thing mean? I’ve been wondering for a while but I didn’t want to seem stupid for not knowing but now I just want to know

No worries about not knowing this stuff it’s a little complicated if you’ve never head a good explanation before.

I did a search on Tumblr and found some good posts and did some extra digging and found the origin (I think) of The Spoon Theory, too! (Links below)

Sorry this is gonna be long, but I hope you’ll find this worth reading (or someone will appreciate this :))

I think the most important part to understand that being a Spoonie can be because of any reason.  That means that this theory applies to people with various mental illnesses (specifically pointing out depression because that’s characterized by having lower energy levels), neurodivergencies (I’m talking about people who have sensory issues with various stimuli including interacting with people and being overwhelmed by everything in their daily life; pointing out autism), and also physical disabilities (which would incorporate the physical ability to do things as well as the pain level; pointing out pain-related physical disabilities like fibro/lupus/EDS).

My definition of The Spoon Theory is that you start of each day with a set number of spoons.  Each spoon represents x amount of energy and ability, and how tired/sore you affects how many spoons you have for the day (you can’t get more until “recharging” at night).  For me, “waking up” involves getting out of bed, going pee, and brushing my teeth.  Since that is all part of my routine to get ready, I don’t/can’t separate those things out.  For me: Waking up = one spoon. Getting dressed = one spoon. Putting socks and shoes on = one spoon.  Getting my school bag ready and filling up my water bottle = one spoon. Now that I am ready for school, I have used up 4 spoons.  This is standard for each day; every morning I go to school/work and do all of that I lose 4 spoons regardless of how many I have for the day.  If I am extra tired or extra sore, I may only have a few spoons left over for the rest of the day after just getting ready.  That means that I am physically and/or mentally unable to do as much as I want. On really good days, I may not even have to think about how much spoons I am using up because I have so many that losing one or two here and there (walking to class, doing homework, making a meal, etc.) won’t exhaust me. Think of able bodied/neurotypical people like they are rich; if they lose some of their money, that’s fine, they can still afford rent/mortgage/a fancy meal/maybe even a new car. If you’re a Spoonie, it’s like you’re very poor.  Some days, like if you just got paid (got a good night’s sleep and not stressed and also limited pain), then you are able to afford rent and possibly even eating out/buying enough groceries/a small present for yourself/etc. If you had an unexpected expense (= extra stressful/demanding yesterday, not enough sleep, etc.), then you might not have enough money to buy literally anything extra for yourself and only have the absolute bare minimum to survive.  So, in Spoonie terms, sometimes you only have 4 spoons for the day, and that would mean for me that I would only be able to choose 4 simple tasks to do for the day; going to school all day = about 2-3 for me, so, on a bad day, I would be in the negative spoons and have to immediately come home and crash (sleep for 6-8 hours) before even having the energy to have a conversation with my mom or think about the homework that needs to be done.

Here is the original posting of The Spoon Theory

Here is kind of a good explanation/relatable post about it (as in, it may be helpful in understanding but doesn’t define it)

http://oursystemlife.tumblr.com/post/175342204091/being-chronically-ill-is-like-being-a-phone-that ">This a post about how it feels to be a spoonie

http://chronicillnessproblems.tumblr.com/post/153717677970/i-think-an-important-thing-about-spoon-theory-that ">This post is aimed a bit more towards able bodies/neurotypicals (but mainly about how it feels)

I hope those links work...I know for sure the top one does but the others are linking to Tumblr posts so who knows.  Searching up “spoon theory” on Tumblr will also generate a bunch of good posts and I got those 3 from the results.

I hope this post is helpful for you and also anyone who isn’t familiar to The Spoon Theory! :)

[thenightisland]

you know the drill:

this is becoming like its own series but idk how else to explain this awful year i don’t even feeling like properly linking so here’s just the URLs of the other ones in the series: 1. http://thenightisland.tumblr.com/post/161087786689/explanationsupdates-under-the-cutmore-i 2. http://thenightisland.tumblr.com/post/161920216354/additional-updatesexplanations-under-the-cut 3. http://thenightisland.tumblr.com/post/163767959805/updates-under-the-cutmore-post-one-post-two-on 4. http://thenightisland.tumblr.com/post/164398486219/on-the-fourth-edition-of-what-the-fuck-is

one of the assessors got jumped a while back. she was just walking past a pt in the main assessment dept and he jumped up, punched her in the back of the head, took her to the ground and beat the fuck out of her. she was out for weeks and weeks and had broken facial bones. i can’t believe she didn’t quit.

our nurse executive quit though. not like, went prn or gave two weeks notice, like just straight up was like I’M DONE and walked out which honestly is the closest i’ve ever come to respecting him.

while having more psychologically unstable pts isn’t new, having more medically unstable pts has been a problem lately. like our crash cart is not like a medical hospital’s crash cart it’s like. an ambu bag some iv supplies and a stethoscope no lifesaving medications. when a pt has a medical issue we send them out to a medical hospital because obv we don’t have the resources to treat complex medical issues where we work. which didn’t used to be an issue because you’d used to see maybe two medical codes a year on my unit. we’ve had /ten/ since my last update post /just on my shift/. two of which weren’t even “pt is going downhill fast” codes they were “pt has no heartbeat and isn’t breathing” like we had to fucking bring two people back from the goddamn dead /within ten minutes of each other/. we’re all like we’re psych nurses man if we wanted to do this shit we’d work er. [and the er we’re required to send these pts to is awful like they sent us back a guy who had almost died twice in three days who had an /untreated brain tumor/ bc obv he’s totally fine]. or we’ve been doing mash unit style medicine like the suicidal kid with partial thickness burns all over his chest and neck that literally no one was doing anything about. we were debriding burns with a mixture of different PO IM and SQ drugs to achieve the same effect as IV morphine because debriding is extremely painful but not doing it will just make things worse and no one else seemed to care so we just fucking did it. like we’ve done so much medical nursing lately. like the one with the uncontrolled severe seizures that led to the medical hospital labeling her first break schizophrenia despite no family history of mental illness but /five different medical issues that all cause psychosis/. or the one they let on the unit despite being on the do not readmit who has untreated hiv that he actively tries to give to other people and /active tuberculosis/. or the one with the aneurysm. or the one with severe CHF. and on and on and on. and remember: we’re not the most medically unstable unit in the hospital because we have a 40 bed /geriatric psych unit/ so you can imagine the kind of pts /they’re/ getting. on the plus side, all of our ten odd codes lived.

my personal life is still a goddamn mess, of course, but that’s a given. don’t even know where to begin with all that. and i can’t talk about a lot of it which makes it that much more fun.

i had an entire crisis about the odyssey [which tbh is still kind of going on even after /weeks/] because i’m getting so cagey in memphis because i fucking hate this town. and i just got back from new orleans which is the closest thing i have to an ithaca at the moment and it killed me to come back to this fucking city.

i’m also really paranoid right now because after i come back from vacations, something terrible always happens and i’m not exaggerating it’s like clockwork to the point that the bad things have all happened between friday and sunday after i’ve returned from my vacation, each time, without fail. well that would be this weekend so i am just waiting to see what great horrors await me this goddamn time. [last time, it was the whole coworker killed in vehicular homicide thing]. but i guess paranoia isn’t the right word. you’re only paranoid if you’re wrong, and my life has already set the precedent. so i guess anxious is the better word.

the anxiety is increased given that my mother has been out of work all week because they’ve had trouble regulating her blood sugar and so she’s been really sick and even said so herself she’ll probably end up in the er over the weekend because she doesn’t think she can make it till her next doc appt because she’s miserable, and she’s already been in the er once when this weird shit started happening a month or so ago so the Vacation Curse has me even more concerned than usual, which is saying something. 

there’s a new psych doc working now and everyone is really unsettled by him and we’re pretty sure he’s a genuine psychopath like completely without exaggeration and he’s already done a lot of really creepy things to/with staff members and one nurse said in passing “i’ve known a lot of doctors like him he’ll end up fucking a pt at some point” which we initially left to hyperbole but he’s been doing shit like transporting female pts to other units without the staff’s consent in his own car which is like all kinds of not allowed, and the way he talks to some of the staff is just downright rapey honestly. and so we had a rough case this summer who, through the combined efforts of my squad, we got her from a diagnosis of intellectual disability with schizophrenia, nonverbal, self harming all the time, history of physical and sexual abuse, constantly in restraints and on a 1:1 obs level to a new diagnosis of autism spec with ptsd because her “hallucinations” were /flashbacks/ and she ended up very social and verbose and like fucking read william blake for fun and had a great sense of humor and was off all special observations and had a transfer to another facility pending so she could get more 1:1 long term therapy, and the creepy doctor was covering her case while her actual doc was out of town and he rode all the way to the other hospital with her which is another thing you do not do, and we found out from a coworker that she is now a /2:1/ [two staff members within arm’s reach 24/7], self harming again, in full shutdown/meltdown mode, and nonverbal. and it was such a rapid deterioration that all of us lost sleep over the possibility that this creepy doctor might have done something because even after she was at the other hospital and therefore no longer our pt, /he kept going to see her/. which fucked us up a lot because we were the ones who worked so hard for so long with her. like even the thought of it.

recently had 25th birthday so naturally had a crisis about that because i’d always said my goal was to be out of memphis by 25 and yet here we are. 

another of our fave pts, esp one of /my/ fave pts, died out of literally nowhere. the day before my birthday. so that was great.

also felt really surreal to see the news about the convictions in the holly bobo case, which i found out about when one of my coworkers was reading the news on his phone during a lull one night i forgot that to him and everyone else it’s a national news story [hell it even has its own wikpedia page] but to me it’s just /holly/ because she was /in the class above me in our nursing program/. my first semester in college i remember seeing her face on missing posters on every building on campus. so it was really a weird moment of dissociation for me. glad the motherfucker was found guilty on all charges, obv. 

the tech of mine who got his skull slammed into the floor, the one who’s been out with what can only be called severe psychological trauma, is supposed to be coming back the third week in october. which i just. i mean i’m glad because he’s one of our best guys, but i’m also like /why the fuck would he come back/ because he could be a fucking english professor again. motherfucker spent part of his youth growing up in italy and montreal, lived on the west coast for years, /was/ a college professor, did time as a script doctor in LA, and was a fucking thriller novelist who just gone girled himself for whatever reason and ended up working with us. there’s literally a reddit thread asking if anyone knows what happened to him and i want to be like don’t worry it’s fine he works with me. but so we’re like why would you come back to this place after what happened to you when you have so many other options available to you????? what are you running from that makes you so desperate to keep centering your life around a locked acute psych ward???? why did you gone girl yourself to begin with??? like he was screwed up enough there for a while that he wasn’t even answering his calls or texts and our boss had to send the police to do welfare checks on him because he lives alone so it’s like man why not go back to the life you had before and /get away from all of this/ it’s not like my situation where i’d rather be living a different life but have never done so, he already has the foundation because he’s already lived a different life he has an in that i don’t have and i can’t for the life of me figure out why he thinks working as an acute pysch tech is the better option. 

but i mean. we /do/ call our unit the hotel california for a reason.

[sigyn2012]

The Emergency Debacle

I knew going into my position at work that it would be stressful because self-advocacy can be a very stressful situation; particularly when dealing with outdated attitudes and ideologies across all spectrums(politically and sociological). It’s even more stressful when the person who is doing this position has a disability of their own as well. I have autism and I know all too well what happens when you don’t get the proper diagnosis in a timely fashion as I wasn’t diagnosed until I was a teenager and therefore didn’t get the help I really needed. I also know what it’s like to be royally screwed over on a constant basis by teachers, counselors, administrators, providers, county/state agencies, psychologists, psychiatrists, and the community at large; this has resulted in me nearly dying multiple times while I was in an extremely abusive group home, only to be blamed for said abuse and no one getting in trouble for what happened(not even a written reprimand), having to fight for the right to be my own guardian in 2008-2009, finding out nearly twenty years too late that I have a rather extreme case of PTSD due to incomprehensible amounts of bullying in school, an unstable home life, the group home from the nth gate of hell, the horrible experiences at a sheltered workshop, being sexually abused as a child, and enduring a few domestic abuse relationships and therefore I’m considered to have a chronic form of the condition, and being hepped up on so many medications over the years that it’s a miracle I don’t have liver damage. I got involved in self-advocacy so that no one else would ever go through what I went through; I even became a whistleblower in Minnesota because I found out about extensive fraud, embezzlement, and extortion going on in groups/organizations connected to self-advocacy and even though I was barred from being in self-advocacy in Minnesota and lost nearly all my friends as a result, I know that I did the right thing(it’s also one of the few areas where I have a decent amount of ethics which may or may not be a good thing). You would think that with all the shit I went through in Minnesota that I’d be a hot mess stress-wise on a good day; you’d be wrong because the job I’m currently in is actually starting to cause physical issues for me stress-wise. Three weeks ago, I started having pain in my abdomen and it kept getting worse. I didn’t have a fever and my bowel movements were fine so I thought maybe it was something I ate and I was dealing with food poisoning. I was nauseous however and no amount of TUMS was getting heartburn to go away. It eventually got so bad that I could barely get out of bed and I went to urgent care as I’m still on a waiting list for a regular doctor due to few places taking my insurance(I’ve had that problem for many years). I was seen right away and the doctor was concerned about my blood pressure as it was 165/110 and I’ve never had it that high before. I had to have an emergency EKG because of this and everything turned out normal. I then had to have a bunch of bloodwork and provide a urine sample. The bloodwork came back fine except for the usual issue of high iron levels yet laughably low hemoglobin levels and the white blood count was a bit low. The urine sample was fine and even though I haven’t been with anyone since January 31st, 2014; it was confirmed that I wasn’t pregnant. I then had an emergency ultrasound on my abdomen and they looked for everything you could think of because they didn’t want me to have anything life threatening. The ultrasound came back normal with only a couple of things that were considered age related; I have fatty liver and there was some residualization/vascularity in my pancreas. The doctor gave me omeprazole for two weeks and I had to do a bland diet to make sure I didn’t have an ulcer or something related to that. That was grueling because I was so hungry the whole time and things got boring fast. The omeprazole cleared up the heartburn and it was confirmed that it was indeed stress that was causing the issues. When the doctor asked me if I was under stress, I told the doctor everything that was stressing me out and I was told that I need to find another job as he’s afraid that I will have a cardiac issue of the stress gets any worse. I didn’t mention the stress I get from family because there’s nothing I can do about that. To give you an understanding of what is stressing me out so much; I’ll give you a brief overview followed by going into further detail about everything. The stress has nothing to do with my job as a whole because if that was the case, I would’ve stroked out a long time ago. The stress is being caused by two people: the board president and his dad. Normally I would be more than happy than to name them, however, because the board president’s maternal and paternal families come from a decent amount of money and have major respect and reputations throughout North Dakota, I can’t do it because I’ll be kicked out of yet another state in terms of self-advocacy. The board president is in his mid-20s and has cerebral palsy, an extreme case of generalized anxiety disorder, and no intellectual/cognitive issues. He has a baclofen pump due to extreme spasticity and because he has swallowing issues. He also drinks a rather unhealthy amount of water and if it’s really because his phlegm is so extensive, I’m surprised he doesn’t have cystic fibrosis or diabetes. He is a college graduate with a bachelors degree in theology. He may be nice and innocent in public, however, he is manipulative, sets impossible expectations which set people up to fail, and he’s creepy. When I have a meeting at his house because it’s much more accessible than my apartment(plus I’m not lugging his wheelchair up and down a flight of stairs), he dismisses his staff for the evening and then I’m forced to be his CNA/LPN because when he dismisses his staff for the evening, the college age staff people immediately go to the bar and turn off their phones. The head nurse is unable to be reached as she has a dozen other clients in the building and several of them have complex medical issues. I’ve talked to the head nurse, the board president, my supervisors, his provider, and even his family about this and I’m brushed off because even though I’m not qualified to that in any capacity, whatever the board president wants, he gets. He’s done this to me dozens of times and if I try to leave, he’ll call people and I’ll get in trouble because ‘l’m not being a good liaison and I’m not doing my job’. The board president also expects me to get groups going in all cities with at least 50 people and have 100% participation at all times. I don’t have the time, money, and manpower for such a thing. Also, the smallest city in North Dakota is Ruso, which has 4 people in it; how in the hell am I supposed to come up with a minimum of 50 people in that community? When I try to give him a sound reasonable explanation on how that is impossible for me to do; he’ll call his dad and his dad will drive from Belfield to Bismarck and yell and scream at me for hours at end and I’m not allowed to leave because I’ll get reprimanded by my supervisors because they don’t want to have to deal with him or his dad at all. The board president is named after his dad and his dad served two terms as president before the current board president was elected. His dad has a very mild/mild intellectual disability, a rather severe case of stammering, one of the worst cases of generalized anxiety disorder I’ve ever seen, and is a malignant narcissist. He is very tyrannical and is a major dictator on everything and anything. He is extremely manipulative, money hungry, power hungry, and a dirty old man as well. The only person who is glad to see him is the board president; everyone else’s blood pressure goes through the ceiling when he walks in and I’m surprised his wife has managed to not kill him after all these years(the board president’s mom was his first wife and they divorced when the board president was three; she also has an intellectual disability caused by a TBI when she was 2 months old, one of the worst cases of generalized anxiety disorder I’ve ever seen and one of the worst cases of obsessive compulsive disorder I’ve ever seen; I had to ‘babysit’ them once due to a medical emergency that someone in the family was going through and I was heavily debating on how big of a prison sentence I wanted because I was at the breaking point. Thankfully, the second wife is really decent, although, she rarely speaks due to her fear of her husband). His dad is basically using his son as a puppet to further his agenda. The board president has tried on several occasions to hit on me and when he tried to get really close to me the last time I had a meeting with him, I walked out of his apartment because I’d had enough. I talked to my supervisors thinking that they’d understand as they’re women and I’m sure they’ve dealt with this before; it got brushed to the side once again and he still gets to keep his job, I’ve even been told that because of the strategic planning session we had on the 30th(virtually nothing got done), I’ll have to spend more time with him; even though they’re aware of how creepy he is and they know that he and his dad are the source of the stress that is causing physical issues. It’s like they’re trying to see how much I can take before I resign, have a major medical issue, or end up in prison because I couldn’t take it anymore and didn’t care how long of a sentence it’d be. I can totally see why they’ve lost nearly two thirds of their staff in three years and why the places that give us grant money are nervous as hell because this is just a walking disaster and then some(not to mention the shockingly high amount of potential legal issues). I really need to find another job because if I’m forced to have a major medical issue, have the permanent mental breakdown that’s been looming for over 10 years, end up in prison for multiple life sentences, or die in order for this to be looked at; I’m going out in a blaze of glory and I’ll be in ‘nothing to lose’ mode something fierce.