#and i just. i don’t know.
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clanoffelidae · 9 months ago
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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.
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badolmen · 1 year ago
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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.
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vaperarmand · 9 months ago
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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 ❤️
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woodsteingirl · 1 year ago
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starting a collection. pierre talking to natasha in war and peace
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versasfanficwastedump · 4 months ago
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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.
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aceofstars16 · 7 months ago
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Reblog if you are okay with people giving you lots of boops!
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bbbbbbbbatman · 2 months ago
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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)
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seren-dipitous-art · 3 months ago
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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.
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Plus, gorgeous sweaty acrobat in gymnastics poses? Only positives.
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parakeet · 8 months ago
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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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watermelonsloth · 8 months ago
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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”.
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fesenmoon · 2 years ago
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no fucking way
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sunnibits · 9 months ago
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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
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maibeloved · 1 month ago
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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
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chloesimaginationthings · 1 month ago
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"They call it the MANGLE" - FNAF 2 phone guy
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ciearcab · 6 months ago
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for what comes next
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gigireece16 · 2 months ago
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“how do you plot / plan your book?” very bold of you to assume i do that.
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