*sits in a cardboard box*

Lee's side blog a space to journal about my life, disabilities, chronic illness, and struggles. collecting the demons and casting them into the abyss✌️

[autisticlee]

✨️new pinned post✨️

click to learn more about the rat writing words on this blog and attached disclaimers➡️

hi i'm lee, they/them, USA, 30-something disabled rat just trying my best!

this blog is a dedicated journal space where I ramble and rant and vent my inner thoughts that threaten to affect my mental health if I keep them in. I have this ability where if I write my thoughts and throw them out into the world (post online) they instantly stop plaguing me in that moment. perhaps they can be caught by someone who needs them, someone who realizes they aren't so alone in the world. (I also post here to share my thoughts with my therapist since talking is hard for me)

I post a lot about being autistic and my social struggles caused by being autistic, and my struggles being medium support needs. my trauma related to growing up undiagnosed until adulthood and not getting my needs met. my struggles with unmedicated adhd. struggles with probably having DID or something form of dissociative disorder. my struggles with my disabilities, chronic pain, and chronic illnesses (diagnosed with POTS, hEDS, suspecting MCAS and possible autoimmune). my experiences being lgbt (trans/nonbinary, aroace, and all the fluidity of a cat between everything else). occasionally ranting about religious trauma and politics because my conservative family is obsessed with it and shoves it into my face.

if any of that sounds relatable to you, you're welcome to follow along this messy journey. i'm not am advocate or a write. just a random person with a blog using writing to cope and sharing with the possibility other lonely souls will find comfort in my words somehow.

some things to note/disclaimers:

i'm not here to make friends and be social on this blog despite what i post about. this is a coping journal. i've recently realized that I dont enjoy making or maintaining friendships though bonding over similar traumas or shared negative experiences. it affects my mental health poorly unfortunately. i prefer shared interests and have lighthearted interactions! also when I talk about wanting friends, most of the time meaning in person, local friends! that's what I currently need most 🥹

i'm going to turn off messaging on here because of the point above. I just dont have the energy to give people the attention they deserve, and i feel bad when someone reaches out and i forget to respond or dont have energy to 😭 i'll leave my ask open for anyone who has a genuine question....but keeping anon off for now because I keep getting spammed my bots 💀 might turn on again later. apologies for that. (imo you're already anon by hiding behind a computer screen, i dont know who you are and too lazy to look at your blog if that helps lol)

unless i explicitly ask for advice or opinions, i'm probably just venting. I appreciate all replies though and know people just want to help so i wont yell as you for it. but please dont get upset if you give advice and it seems like I ignore it or "shoot it down" (I probably been told, tried, or thought about it already) especially if I didnt explicitly ask. i'm trying my best! I appreciate encouragement a lot though, if you want to help!

i'm also not here for validation or anything else specifically. it's just easier to convince my brain to forget about problems (at least temporarily) if I cast them out into the world like tossing a letter in a bottle into the ocean. goodbye sad thoughts! into the internet abyss you go! no longer inside my head or in my room. yippee!

I tag things like "#autism #autistic" and other general tags, it usually means i'm posting with the intention of sharing with others. if I dont use those tags, it's just random brain explosion i'm not expecting anyone to read lol

I decided to unlink my other blogs from this one and keep this a separate, more disconnected space. if you want to know more about my interests or hobbies, I guess you can ask in my ask box!

remember these are my personal experiences and yours will be different. i'm not trying to invalidate you in any way and some rants are just to vent out frustration. sometimes i want to say mean things to assert dominance over my trauma rather than saying them directly to an actual person. please never respond to me to argue. I dont like arguments, especially caused by misunderstandings. words are hard, feelings are hard, life is hard, so dont take everything to heart. step away if you need to!

[autisticlee]

being the poor kid in school always sucked, but besides the bullying and ostracizing it caused, one of the worst parts was when the school had some sort of money-exchange thing for students to buy stuff. like the book fair or bake sales or pizza day. I feel like schools shouldn't have things like that unless they can provide at least a small thing for the poor kids that had no money (or even kids who forgot) because it sure sucked. being the only kid in my class whose parents couldn't even afford to give me a quarter. all the kids got to buy cool toys and books and stuff. or on bake sale day it was the worst because theyd all get baked snacks like cookies and muffins they were allowed to eat in class and I went hungry. especially since that always replaced our snack time so I wasnt able to get a snack out of my lunch for those days. or pizza day if I didn't convince my parents that I needed a dollar then i'd go hungry while everyone else had pizza for lunch. it always felt so cruel.

[autisticlee]

the only solution to my memory issues people can suggest for me is to set an alarm on my phone. i've tried that. things that happen when I try to use alarms:

-turn it off immediately as soon as it starts going off and go right back to what I was doing because how dare you interrupt me and loudly tell me to switch tasks!

-still somehow get distracted before I get to the thing the alarm was for and forget to do it

-do absolutely nothing while staring at the time waiting for the alarm so I can turn it off a minute before it goes off. sure I might do the thing it's for, but it also makes me waste so much time and not do the other things I need to do (like sleep. I cant sleep if I know i have an alarm set. i'll wake up every minute to check the time for HOURS)

-get a some sort of fight or flight response? at the sudden intrusive sound and be angry or unable to do anything the rest of the day and dont do the thing the alarm is for nor anything else 🙃

[autisticlee]

the more i'm forced to be "independent" and do everything by myself with no help, the more I struggle and get hit with burnout. the more i'm in burnout (while still being forced to be independent with little to no help) the more I face regression/loss of skills. the more i'm forced into a burnout regressive state, the less likely I am to recover lost skills and become even less tolerant to stress from being forced into helpless independence. which then causes me to burn out even more and the spiral continues as I continue to get worse and need even more help!

but no one will understand that. no one seems to care even when I try my best to explain that. i just need someone to help me in life. i need people to understand i'll never be completely "independent" at least in the ways they expect me to. i'm disabled in a way that I require help with things to survive in this world. i'll never be able to live alone and do difficult things without explanation and guidance. theres things my disabilities cause that I cant just fix with practice or by learning how. and no one understands that!

I have a case manager who is supposed to help me with things. I was told theyre supposed to help do things by assisting where I am unable like making phone calls. my auditory/verbal processing makes those stressful and impossible most of the time. I cant fix that! and instead if accepting that I will always need help, she keeps telling me her job is to make me set goals and work towards them so i can gain independence and no longer need her or anyone to help with anything. thats just not how it works for some disabled people!

I hate do much that the society we live in values abaolute independence over anything. even abled people would benefit from more help. but no one wants to be inconvenienced and help others. the healthcare system is so obsessed with making people "get better" and "cures" that the people who will never get better or be cured get dropped and forgotten! theres never anything made for people who will always need assistance. theres never anyone who wants to be there for someone who needs a helping hand through life.

having any kind of help is always seen as bad and we need to learn or be trained to never need it again. autistic people are taught aba so they can mask and pretend to be independent while suffering burnout and trauma caused my it and meltdown constantly and are miserable because not needing help is seen as good. people who use wheelchairs are taught they need to learn to walk because using a tool to help is seen as bad.

society and the healthcare system dont seem to understand that having tools or having help of another person CAN GIVE US MORE INDEPENDENCE THAN WITHOUT. for some, independence is simply getting to make our own choices and decide what we need help with. I can be and feel much more independent if someone could do things I ask them to help me with like phone calls and driving than I feel if i'm forced to do everything alone. especially when i always do it wrong and/or burn myself out trying to do it all alone. the choices are independence. asking for help doesnt take away my independence. thats how I feel about it and no one cares or asks or accepts it. I really dont understand why people cant accept and understand that! not getting a choice is what takes away my independence. people forcing me to be "independent" in their definition and taking away or denying my supports is what takes away my independence! because then they are the ones making the choice for me!

and the more I try to explain it, the more i'm told i'm just being difficult, lazy, inconvenient, self-doubting, not trying hard enough, etc. i'm none of those things! I know my limits, I know what i need help with, I know what i can and cant do and what the pros and cons if doing everything alone vs with some help. but ~they know best~ and I need play nice and make them happy while i'm unhappy and suffer because no one wants to help. and professionals whose job is to help need their paychecks for making me reach independence goals and learning how to mask and hide my burnt out stress/trauma responses to my struggles being ignored and my needs not being met.

I wish there was a way to prove to society and healthcare that reaching goals for independence and making progress towards no longer needing help isnt realistic for SO MANY DISABLED PEOPLE without lowering our quality of life or causing negative consequences!!!!!!!

[autisticlee]

whenever i hear someone with adhd and not autism talk about their adhd, it sometimes feels like a completely different world than my own experience. especially different aspects like social experiences. my autism combines with my adhd so much that it forms a secret 3rd thing.

[autisticlee]

the more I have to go to my horrible job that does nothing but cause me pain and disrupts my entire life, the more angry I become every day and it dont know how to stop 😭💀

[autisticlee]

so funny how I can get along so well with and feel so secure with people who actually want to communicate and aren't avoidant of everything! so funny how people who refuse to communicate to me and avoid everything blame me for failing friendships and act like innocent victims. funny how that happens 🤔

[autisticlee]

I always end up being the first patient every medical professional works with who has some condition/symptoms they either never heard of or dont know much about. so I either need to teach them about it or let them tell me to try very unhelpful (or even harmful) things if they're the type that dont listen to me. it's so frustrating! it stresses me out and makes my health worse! i've had to teach therapists about autism/adhd/cptsd/other mental health issues (the only ones who ever listen/learn), i've had to deal with doctors that know nothing about eds and misdiagnosed me, dont know how mcas works and refuse to look into it, tell me all my issues are "constipation" even though I usually have the complete opposite issue.....im so tired of doing doctor's jobs for them and diagnosing myself and arguing with them for years before they finally listen or send me to the correct person 😭

[autisticlee]

I keep trying to search online for any information about or people with experience having eds and working a janitorial job and how to ge through it. but there's nothing. I guess i can just assume other eds people know cleaning jobs are bad on our bodies and avoid them????? it's destroying my body but I have no other choice unless I can get on disability (and i wish I knew I could apply 10+ years ago instead of wasting my youth in constant pain and exhasution just to make it become severe and unfunctional in my 30s). I feel like the only person with eds that has a cleaning job. especially when the only results I get are about how to do house chores with eds and how much people struggle to do them. so that just tells me I need to get out of this job. commercial cleaning isnt meant for us! but cant get any other job! ugh. this one is autism friendly, sure. but not chronic pain/illness friendly at all!!!!!

[autisticlee]

I have several spots on my body that are numb. some getting worse over time. some some and go. but some are constant. I need doctors to take me seriously becasue if this is more than just pinched nerves on my spine from my horrible posture due to my job, then I need to figure it out. i'm hoping it's just pinched nerves and if I can get on disability and quit my job, I wont have to be hunched over anymore to clean and can maybe do physical therapy to strengthen my back muscles into a better posture and release the pinched nerves so it doesn't get worse! I dont have hope the long term numb patches will ever return to normal. just hoping for things to not get worse at this point. ugh

[autisticlee]

"i want to do *good thing* because god would appreciate/want me to!"

no. do it because YOU want to be a good person and do good things! not because you were told to make some invisible sky father to do it or becasue you'll be rewarded with "heaven" or whatever 😭 it's hard for me to believe someone is truly a good person if they only do good because they feel like they have to/are told to 😭 especially when it's because of religious belief. if you didnt have that belief and were told by a book, would you still do good things? I know many would not for sure.

[autisticlee]

i've researched my nose/breathing issues for years and keep coming to conclusion I need to see ENT. been asking doctors for years to send me to one but they won't??? previous doctor actually did refer me 2 or 3 times but they never called. current doctor said it's allergies and sent me to allergist. allergist says it's inflammation from non-allergic rhinitis and said keep using allergy nose spray even though it's not working and even making it worse maybe? I know it's a nostril collapse issue and/or deviated septum. when I breathe in my nostrils collapse inward. both sides feel like breathing through straws. when I pull my nose ring outward and breathe, it opens up and I breathe so much easier. I think my nose just needs a surgery or something at this point because ugh

[autisticlee]

my sister is moving out soon and her bedroom will become the guest bedroom. I know it's selfish but I wish my parents would let me make that my bedroom and my current bedroom be my office space so I have more room to actually do my hobbies and not have my entire life confined to a room thats smaller than a walk-in closet 😭 especially since we only have one visitor like every 3-5 years!

[autisticlee]

shout out to all the autistic people (especially ones that arent cishet white boys) who got diagnosed with anything but autism for so much of your life. it's rough out there and I wish they did better for you :(

[autisticlee]

you dont realize just how frustrating and exhausting it is to try to talk with people who are afraid or refuse to communicate, until you interact with people who WANT and DO communicate! being the only one who wants to communicate and repeatedly being the only one initiating conversation or addressing problems and constantly reminding/asking people to try at least a little makes social interactions and communication WAY more frustrating and exhasuting than it needs to me! avoidant people are the norm in my experience. and I dont realize how much I need to walk on eggshells and try to develop mind reading skills until I talk to people who actually say what they mean and mean what they say, or are willing to without much if a fight when asked. the amount of worry and anxiety that is saved when people just use words and voice their thoughts/feelings/opinions and hear others out and try to compromise and understand each other....instead of lying, avoiding everything and keeping to themselves, ghosting, or playing manipulative mind games hoping everyone will figure out how they think and feel. I get it. some people have anxiety so it's hard. you what makes it hard? avoiding everything and making it worse for everyone! doing the big scary talk will work things out way easier and quicker than avoiding or lying. the amount of times I heard things like "im afraid to lose the friendship if I say how I feel" but those people ruin fhe friendship with their lack of saying anything, especially when they get upset at the people theyre avoiding fir not reading their mind. ITS TIME TO FACE YOUR FEARS AND ANXIETIES AND PRACTICE COMMUNICATION. I promise you will find things work out way better if you talk about it honestly and straightforward and as soon as possible! most people are willing to talk and compromise and understand! I know someone i've been working on a project with who admitted to anxiety with hard conversations/confrontation and has muted their mic during them because of panic attacks/crying. BUT they STILL stay and participate in the conversation (through text) and work it out and feel better at the end and the problems get solved! THATS HOW ITS DONE AND I APPRECIATE THAT SO MUCH. IT MAKES ME SO HAPPY. 😭 I hope more people learn to do this. it makes everything better to face those fears and just communicate!

[autisticlee]

I always thought you had to not be working at all to apply for disability until very recently when I learned they apparently dont consider it "working" if you make less than like $1600 a month and cant handle getting a better job or more hours. in all their info and even on the form, the wording is only about if you *are/are not working* and doesnt mention anywhere that making under the income limit monthly counts. so I answered a lot of questions as "yes i'm working" and tried to answer that yes i'm *technically* able to work because my family forces me to work with my mom in family-owned cleaning service because they refuse to help me pay my bills and provide all my needs for me. but apparently that doesnt count because I make half of the monthly income limit? and I only found out because I convinced my case manager to call the social security office to ask why it gave me an error when I answered "yes" to "are you able to work" and we were told the answer should be no because my tiny income doesnt count...AND IT DOESNT SAY THAT ANYWHERE ON THE APPLICATION OR EASY TO ACCESS INFORMATION ON THEIR WEBSITE! 😭

so all this time I could have applied. instead of thinking "I cant apply because i need to pay bills so cant quit my job to qualify." and "how do I convince my parents to let me quit and help me financially for the next few years." they (purposely i'm sure) make it so you dont get the information you need and avoid applying. I suffered through almost 15 years of this hell job, getting progressively more chronic pain and health issues, thinking i had no other choice nd would die doing this job, all because they dont make it clear that working part-time minimim wage doesn't automatically disqualify you like they make it seem!!!!!!! 😭😭😭😭😭

[autisticlee]

submitted my disability application. only took me like 6 weeks to do. it was so stressful and confusing ugh. it said i'm supposed to collect all my medical records. no clue how to do that lmao (google results is mostly "pay us and we will collect them for you!" ads. no!!!!) I doubt they'd accept me anyway so maybe it doesnt matter. now I wait a million years for them to reject it so I can complain to my case manager for not helping me get a disability lawyer when I asked her to and instead making me fill this all out by myself! (very stressfully and definitely incorrectly)