#and i just. i don’t know.
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I’m always scared of jinxing myself by opening my mouth and saying I’m ‘not physically disabled anymore’ or that ‘my cyclic vomiting is gone’; because there’s no cure and we don’t know why it sometimes just… stops. There’s not even really any medication to manage it you just kind of… try to work through it and manage symptoms and side effects as best you can. Namely, the dehydration due to excessive vomiting being the main concern. (Have had abdominal spasms due to becoming dehydrated from it before. Took me 5-6 minutes to army crawl six feet to the shower, wiggle out of my clothes, and stretch up to turn on the hot water to try and soothe the muscles I was in so much pain. It was also like 4am and I was at a homestay in another country so fuck me I guess lol. Fortunately my homestay actually spoke English; which worked out because I speak Spanish decently well so I was making an active effort to converse with her and practice before I got sick, she was extremely helpful because I mainly needed help with specific vocabulary/phrases and she could help me translate them, and then when I got sick and was so exhausted I could barely communicate in English anymore I was able to drop the Spanish and still be understood and given help. That’s a tangent tho lol sorry)
And that’s true of a lot of physical disabilities, sadly, so I’m sure many of you can understand why I’m scared of it. Because I’m one of the lucky ones, even when my condition was at it’s worst I had more good days than bad. One of the defining characteristics of CVS is that in between episodes you would never know something is wrong with us.
And sometimes people just… ‘grow out of it’, so to speak. It most commonly affects children, even being thought of as a pediatric disease, and then just goes away when they get older. I was a weird case, I had two sporadic episodes in high school and then it hit me hard basically as soon as I got to college; it only ever happened when I was an adolescent/adult.
During the worst of it I would have episodes as little as 3 weeks apart; I’d be in severe agony and vomiting profusely for around 24 hours, take several days for the pain to go away (the episode was over but I was sore after the vomiting), and about a week for the brain fog and lethargy to clear up. I knew my stomach was empty, I knew I had nothing in it, but it felt so swollen and I was convinced it was about to tear open like an overfilled balloon. The condition is believed to be related to migraine headaches and I believe it - my severe migraines are the throbbing kind where it feels like my head is about to explode, and that is the exact same kind of pain I was feeling in my stomach. Those same, unique qualities that differentiate the pain of a migraine from another headache were exactly what I felt in my abdomen. I was also light and sound sensitive, seeking darkness and solitude; although it didn’t cause literal pain to be exposed to light and sound like with a migraine headache, it stressed me out for ‘seemingly no reason’, overwhelming me and increasing my pain as a result of the stress and desire for the stimulus to go away.
My last episode was in 2019. I only even had frequent episodes for a little over 2 years.
And I’m still deathly afraid of every new medication I try because I don’t know why it stopped. Nothing about my lifestyle changed, nothing about my habits. I was never able to identify any triggers like with my headaches, it just sort of ‘happened’ as far as I could tell.
I have no idea why it started and no idea why it stopped.
And I’m constantly fucking terrified that I’ll fuck something up and it’ll come back, that this time of peace and ‘health’ is temporary. I’m so fucking scared because it hurts so fucking much and I don’t want to be in pain again.
I don’t want to be in pain again.
And I don’t know why I’m bringing this up or what I’m trying to say really. I guess I just want to get my fears written down because they’re circling in my head again.
And I guess I also want to say that I’m sorry. I’m sorry to everyone who suffers with a ‘hidden’ condition that no one believes you about, I’m sorry for everyone who is barely dragging themselves through it day by day; in pain, exhausted, and with the people around them burnt out on offering help because ‘why can’t you just get better already’.
I’m lucky, I’m so very, very lucky that for whatever reason my episodes just… stopped. They just stopped. And even still I live aware of the sword dangling over my head, never believing that the dragon is actually dead and is only just sleeping, still there to be reawakened if I mess up (when I don’t have the slightest idea what or where that invisible line I must never cross is), and I never dare to say that I’m ‘cured’ because I don’t believe in miracles like that. It’s a miracle that they stopped, and I’m grateful for it, but I will never dare to believe that they couldn’t come roaring right back any day.
Disability can happen to anyone, and I’m vividly aware that my old pain could be stumbled into at any minute, along with any number of other things, and I’m so sorry to everyone who still lives with their pain that is a constant companion. Mine is sleeping, but I remember it well for how it burned like the sun, to the point that I was able to identify sporadic episodes years after the fact that I had thought only stomach bugs because they were so horrible.
Pain is good, but not like this.
Pain is meant to be a teacher, a protector. A warning system of ‘hey! Don’t do that! We could get hurt!’ Your body’s way of keeping you safe and alive; don’t touch the fire because it hurts, don’t touch the fire because it could kill you. Pain is life’s way of steering you away from death, of keeping you safe and alive; letting you know there’s damage so you know to keep that part safe while it heals and use it less. Because when you’re about to walk into the flames your body doesn’t have the time to sit down and explain it to you gently, it has to alert you ‘NOW. PULL BACK NOW!’
Pain is meant to be a good thing; it’s meant to keep you alive and to protect you, to teach you about danger so you know how to be safe, and go let you know when you’ve been damaged so that you can make sure to give the damage time to heal.
But it’s not meant to be there all the time; it’s not meant to be constantly flashing the alarms when there’s nothing to be done, your body trying to help and let you know that something’s wrong when there’s nothing you can do. It’s not meant to linger until it breaks you, to weigh on your shoulders until you struggle to see the good past it. But just like with any good thing, so often does it become ill.
Pain is a constant companion for too many of us, and I’m so, so sorry for that.
You shouldn’t have to be strong.
I’m sorry.
I just wanted to let you all know that.
#vomiting#cyclic vomiting syndrome#actually disabled#disability#chronic pain#recurrent pain#i hate how pain is such a beautiful thing#your body’s alert system and life’s way of making sure you stay alive#protecting you - teaching you - keeping you safe and helping you to heal#letting you know what you need to#and it just gets twisted into something horrible#becoming chronic and never leaving and breaking you down#being used intentionally by others for cruel devices#and i just. i don’t know.#it upsets me is all#i’m sorry to everyone who has to be strong#you shouldn’t have to be#i’m sorry#life’s hard and survival’s not easy#that’s not the way the world works#i get that and i accept that#but this is more than that#and it’s not fair#and i’m sorry for that#i get that life is a constant battle for survival#but you shouldn’t be having to fight with yourself
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People against piracy fail to realize that no, I can’t just ‘buy it.’ They stopped making DVDs and Blu-Rays. They’re barely offering digital copies for download. I am not spending money I could use for food or bills to pay for a subscription service just so I can always have access to a beloved piece of media. Especially not when the service will remove media on a whim without concern for how the loss of access to that piece will make its artistic conservation nigh impossible.
For example, I recently learned that Disney+ had an original film called Crater. It’s scifi, family friendly, and seems cool - I would love to buy it as a holiday gift for my little brother! But: it’s exclusive to D+ and THEY REMOVED IT LITERALLY MONTHS AFTER ITS RELEASE.
The ONLY way I can directly access this film is through piracy. The ONLY available ‘copies’ of this film are hosted on piracy websites. Disney will NEVER release it in theaters, or as something to buy, and it may NEVER return to the streaming service. It will be LOST because we aren’t allowed to purchase it for personal viewing. If I can’t pay to own it, I won’t pay for the privilege of losing it when corporate decides to put it in a vault.
So yes, I’m going to pirate and support piracy.
Edit: if you are able, use $5 you would otherwise use for a streaming subscription to donate to a GazaFunds campaign.
#edit: go to https://gazafunds.org/ and donate $5 you would otherwise spend on streaming services on a campaign!#ra speaks#piracy#media piracy#pirate to make hondo ohnaka proud#obligatory ‘don’t fucking pirate small authors/artists works wtf dude’ statement.#anyone who’s seen my media bitching before knows I’m a hype man for indie films this ain’t about them#this is about corporate streaming services killing physical media bc sales numbers are less impressive than number of streams#edit: USAmericans stop telling me to buy DVDs and blurays at Walmart. think outside your borders for a hot sec. fun thought exercise.#your experiences are not universal#edit: WHO GOT THIS TO 100k. I JUST WANT TO TALK (this post is my second to hit 100k woahg.)#in other news: fix your fucking posture. drink some fucking water. and go the fuck to bed if it’s late bc it’s for me rn. peace and light.
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hey guys if you’re planning on making a vaguepost on the dashboard can you message me with the details and some of the lore behind the vague post you’re making. a vaguepost for the dash and a detailedpost for me. because i like to know what’s going on. if you do this i will automatically take your side because you’ve done the right thing by letting me know what’s up. thanks in advance ❤️
#jillian.txt#believe it or not there is not an active vagueposting situation happening so you don’t have to worry i’m doing the vagueposting here#100% serious about this btw i will keep your secrets and hype you up. i just like to know what’s going on
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starting a collection. pierre talking to natasha in war and peace
#it’s soooo funny i don’t know……#he’s like really not that old like the age gap between them can’t be more than like ten years max he just talks like he’s on his deathbed#samael speaks
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and while i’m on a self indulgent thing? i think that any of the kids calling Bruce “dad” changes his whole demeanor. it helps him know that whatever they’re talking about is serious.
hearing his name shouted across the house does nothing for him. a hundred people say his name all day, including his kids. whatever the situation is can be fixed.
but hearing “Dad!”, cried out in battle or screamed from the other room, has him rushing to their side. what is it love and i’m here you’re alright and shh i’ve got you
“Bruce, I need help” = can’t open this large jar, have a question about math homework, need someone to look at this case file for me
“Dad, I need help” = I am hurt. I am scared. I am in danger. I need you to make things better. I need you to protect me.
#batman#bruce wayne#dick grayson#jason todd#robin#batfam#tim drake#damian wayne#cassandra cain#i just be talking#i’m not including duke or steph here bc i don’t think they’d do that#but what do i know!#good dad bruce wayne
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Reblog if you are okay with people giving you lots of boops!
#I just boop a lot in return for even one boop 😂#april fool's day#boop war#what do we call it?#I don’t know lol#booping
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Jason: I’m dating Roy
Bruce: Hmm (derogatory)
Jason: He has a daughter which makes you a grandad
Bruce: Hmm (delighted)
#i don’t actually think bruce would disapprove of roy#but it’s for the bit you know#jason: god how do I tell bruce that roy and I are dating#dick: just throw lian at him#jason: that could work#jayroy#jason todd#bruce wayne#batman#dc#dc comics#mine
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I’ve been obsessed with the Olympics for the past week, and obsessed with Dick Grayson for longer, so here’s the crossover we all deserve.
Plus, gorgeous sweaty acrobat in gymnastics poses? Only positives.
#I know Bludhaven’s not a country don’t come at me#i wanted him in Nightwing colours#this was a compromise#plus look how pretty he looks#you can’t blame me#he looks good in blue and black what can I say#so good#someone help me I’m so bisexual#acrobat dick grayson#dick grayson fanart#dick grayson#nightwing fanart#nightwing#dc robin#olympics#olympics 2024#dc x Olympics#because we all know Dick would kill it at the Olympics if he wanted to#how many jobs has that man had#gold medal at the Olympics is just one more on the list
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Thought my gf cheated on me again so I messed around with her gay brother, but it turns out it really *was* just her cousin that she was spending time with, so now I’m kinda feeling guilty and confused
Is this how a priest in a confessional booth feels… ten hail marys
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The push and pull of “relationships can be very affectionate and still be platonic” and “those are the gayest motherfuckers I’ve ever seen”.
#sasunaru#narusasu#sns#inotan#tanzen#inozen#inotanzen#kagehina#douwata#homumado#kyosaya#I’m pretty sure douwata and the Madoka Magica ships are just canon though#kunikidazai#inosaku#sakuino#juukimi#juusasu#karmagisa#Noe x Vanitas#I don’t know their ship name#kazurei#fafiya#killugon#leopika#renga#matchablossom#zolu#spideypool#superbat#chaipunk
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no fucking way
#sketches#comics#the far side#crocodiles#my art#i don’t know how to tag this.#also i should probably say. i tried to look into it further and i haven't seen hard hard evidence that they do this on purpose#personifying animals is tempting but ultimately i think it's just hot speculation atm. crocodilians are famously tough to research too#like the advantages may be a coincidence or just pure curiosity/play. which is also really cute...love those guys#sorry for the misinformation! light theory only afaik#comic
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just out of curiosity bc some people I know with glasses can just go a few hours or a day without them and be chill but I need them on all the time or I’ll go crazy
#I know this is just purely dependant on how disabled you are but like. making polls is fun#personally I don’t consider myself super badly nearsighted but like. if anything is literally more than a foot away from me it blurs#so going around without them would suck ass and probably give me a headache#sunny polls
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Omg?! Thank you for 2.1k?! AA! I really don’t have anything prepared so take these billford magma doodles I did today! XD
#gravity falls#billford#fiddlestan#bill cipher#standford pines#stanley pines#fiddleford mcgucket#the book of bill#gravity falls fanart#fanart#silly magma drawings with the awesome sauce of a crew today waa#honestly thank u all i really don’t know how to react im just so overwhelmed aaa (positive)
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"They call it the MANGLE" - FNAF 2 phone guy
#myart#chloesimagination#comic#fnaf#five nights at freddy's#fnaf fanart#fnaf movie#mangle#abby schmidt#mike schmidt#fnaf 2#HAPPY SPOOKY MONTH BUT FR#the big thing I was looking forward to doing was doing some horror art!#obviously if you’ve followed me for awhile#every October I’ll do a handful of spookier art than usual#I don’t have grand plans but we’ll see where the art takes me#wanted to start with something for the next movie#again can’t wait to see mangle in it#I’m so curious how they’ll look or move#if you’ve seen how they move in Help wanted#you just know they’ll be terrifying#mangle is the number one thing I’m looking forward to in the second film#originally in my draft for this I exaggerated mangle quite a bit#but decided to be more accurate cause mangle on their own is freaky#just a lot of their screens in the og game are truly haunted#love mango 🩷
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for what comes next
#trigun#trigun maximum#vash the stampede#was fighting for my life against this piece for four months#i don’t rlly know what’s going on here but it looks cool so that’s all that matters lmao#trigun maximum spoilers#just incase#illustration
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“how do you plot / plan your book?” very bold of you to assume i do that.
#i literally just make it up as i go!!#oh what happens next? I DON’T KNOW!!#writing#writer#creative writing#teen writer#author#writers on tumblr#story writing#author things#writeblr#writer stuff#book writing#bookblr#writing advice#writing prompt#on writing#writers#writer things#writers and poets#writerscommunity#writblr#female writers#author blog#author post#writing community#writing is my therapy#writing blog#writer problems#writing on tumblr
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