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.

i think we should remind musicians they can absolutely make up little stories for their songs btw. it doesn’t have to be about them at all. you can invent a guy and put him in situations to music. time honoured tradition in fact.

Reblog if you are okay with people giving you lots of boops!

starting a collection. pierre talking to natasha in war and peace

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 ❤️

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.

no fucking way

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

something i’ve been thinking about lately is like. growing up muslim right after 9/11 is something i’d never really reflected on much because it was all i’d ever known — at 5, my friend’s mum didn’t let her invite me to her birthday party because i was the only brown girl in our class, at 12, my classmates would joke about my family being part of isis, at 16, my dad was interrogated by american airport security for hours — and it always stung and it always hurt but it was just the way things were because the western world hated muslims. but i don’t think i’ve ever fully comprehended the extent to which we were hated until now.

palestine is being turned into a mass graveyard. every single day there are new photos of the atrocities being carried out against them and videos of them pleading for help and still those who can actually intervene turn a blind eye. israel is claiming to only be targeting hamas “terrorists” while bombing a refugee camp. israeli police raided and assaulted a non-zionist jewish neighbourhood. israeli soldiers are posting tiktoks of them torturing captured palestinians. this is not a complicated issue and it never has been. ethnic cleansing is being committed right in front of us. and yet the western world leaders refuse to call for a ceasefire.

and while zionist organisations accuse pro-palestine demonstrations of anti-semitism, while zionist celebrities insist that they’re afraid to leave their mansions in los angeles, a six year old muslim boy was stabbed to death and his mother wounded in the same attack in chicago. a muslim doctor was murdered while sitting outside her apartment complex in texas. hundreds of peaceful protesters have been arrested (many of whom have been jewish). despite what zionists want you to believe, this is not a jewish/muslim conflict. i have so much love and gratitude to my brave jewish brothers and sisters all over the world who are condemning israel for their actions.

ultimately, israel have been granted impunity by the west. they have slaughtered thousands upon thousands of innocent palestinians. they have bombed hospitals and schools indiscriminately. they have used white phosphorus, violating the geneva convention. they have completely eradicated nearly 900 bloodlines. how many more need to be wiped out? how many more children need to be buried underneath the rubble? how many more doctors need to be confronted with the bodies of their own family members? how many more journalists need to detail the horrific acts of violence they are witnessing? what more can be done to the palestinian people that has not been done already?

i truly believe that palestine will be free one day. i believe the palestinian people will receive the justice they finally deserve. but what breaks my heart is how much they have suffered and will continue to suffer before they are deemed worthy of help. and it would be to all of our detriment if we ignored how much of a factor palestine being a predominantly muslim state has played into the way the world has reacted to their genocide.

Being a “Fun Fact !” kind of autistic is all fun and games until you get halfway through sharing an interesting tidbit and realize that it probably wasn’t appropriate to share in polite company and now you have to deal with the consequences :(

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

They’re being obnoxious at work 💙

dungeon meshi is my favorite road-trip comedy film

I’d give anything to see Mangle in the FNAF 2 movie

I’m going a little wild over the fact that Percy started feeling the effects of the chimera’s poison two minutes before he collapsed. I thought this part of the episode was weird when I first saw it because the camera focuses on him when it seemingly should be focusing on Annabeth, but then, I realized Percy’s odd behavior while he’s in focus.

He also turns abruptly, and a little late, to Annabeth, as if he just remembered to listen to her, as if he’d been distracted by something.

Then, this boy starts cracking jokes to cheer her up instead of saying, “Hey, something’s wrong; I could literally be dying.” And you can see on his face a few seconds before he collapses that the poison’s starting to really get to him, and still, he doesn’t attempt to get her attention and ask for help.

Then, when they’re at the fountain, he tells her and Grover that he’s feeling better even though he obviously isn’t, because he’s hoping he’s physically strong enough to pretend. (He falls on his ass.)

100% Percy just didn’t want to worry them and thought there was no way to find a cure in time anyway. I’M SCREAMINGG