Bethnal Green station, East London, April 2025.
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Bethnal Green station, East London, April 2025.
Day 2911, 3 June 2026
Stairs at Lancaster Gate Underground station
had a localized infection in my port incision that is now hopefully resolved and only existed because I scratched myself¿¿ that’s in total my third infection this year you have to chill
Average day on the central line (says "your mask will control you")
london, uk 2025
Okay I can’t get this idea out of my head. So a little background info I’m feeding tube dependent and have been for many many years. Some formulas are made out of food, some are super broken down while others are food purées, but the formula I’m on is amino acids so I don’t digest anything. Some people can use a g tube which goes into the stomach, to eat the food purées/formulas because some people have swallowing difficulties or other conditions that impact their ability to maintain weight or get calories. Some people use a j tube which goes into the small intestine to bypass the stomach when the stomach doesn’t work for various reasons. My small intestine gets the formula and it absorbs straight through the intestinal wall(because it’s amino acids there is nothing to digest). My body literally hasn’t digested anything in years.
So that got me thinking about hybrid!reader or magical!reader or a character that’s half human half something else relying on a feeding tube. Like imagine human with a feeding tube gets turned into a vampire, but becoming a vampire didn’t take away their chronic illness so their stomach still doesn’t properly work or they can’t swallow still (just an example of why someone would have a feeding tube there are many reasons) so they take the blood through the feeding tube. Their dietary needs change but the method of consuming it doesn’t.
I also have a central line which is a line the ends near your heart so you can intake medication, fluids, and tpn (total parenteral nutrition). What if hybrid!reader doesn’t eat or drink in front of others because they get everything through a central line. Their nutritional needs are similar to whatever hybrid they are but it’s still given through an iv. Their intake would be proportional to that creature. So I get two liter bags of iv saline but alligator hybrid reader would need 6 liters. Or bear hybrid read with an insanely high protein intake so they get multiple bags of tpn a day. Or they’re on a special made formula for hybrids.
Like I could go on and on with this. There are so many medical devices I use daily that I never see mentioned for any xreader fics. Don’t get me wrong I love to picture myself as something completely different without my health conditions involved, but they’re also apart of who I am and I would love to write inclusive fics. I just don’t where to start!!
Anyways that’s the end of my ramble about feeding tube reader/ central line reader!
Just because a certain, or popular disease "fits" your symptoms doesn't mean you have it.
I get that it can be hard to get a formal diagnosis, but until you do, PLEASE DONT SPREAD YOUR PERSONAL EXPERIENCE AS FACT AS FAR AS THE DISEASE GOES.
self-diagnosing for *personal* reasons is perfectly fine. if it helps you to just run with that diagnosis, privately, until you can have it confirmed or find the actual thing wrong with you, then go for it!
But please stop shouting to the world:
"Oh I have EDS and I experience xyz because of it!"
Because you are changing the perception of the disease to the public (healthcare workers included) by claiming that diagnosis, and you might be totally wrong.
• specifically for hEDS, I know so many people who have DIED from it and in the same day I hear a doctor tell me "EDS is just a tiktok trend..." and an hour later 50 comments on a tiktok video telling a stranger with hyperextended elbows that "you must have EDS! You're so flexible!" as if hEDS is just a flexibility issue and not the literal proteins in your body being malformed, rupturing organs, paralyzing intestines, and having your brain literally fall out of your skull.
Peace & Love,
a girly with cEDS who just read 20 posts under the ehlers danlos tag with varying degrees of "basically i have eds but also ive never actually been told that by a doctor, but here's my eds advice" (and a lot of that advice is actually horrible to give to someone with a collagen disorder).
two days til the 1 year anniversary of when i went to the emergency room with horrific kidney pain concerned about some kind of organ rupture (bc eds) and they gave me some pain meds and did a ct of my kidneys and diagnosed me with muscle strain and sent me home. i was too tired and overwhelmed from past er visits finding nothing to even tell them about the gaping abcess on my port that was causing it to show thru my skin.
about 4 or 5 days later i was admitted to another hospital to get a week of antibiotics and a new central line and completely unable to urinate on my own, leaving me with a foley catheter. that kidney pain during was because my bladder was shutting down and i was in active severe retention and extremely close to having a bladder rupture. i nearly died 🤠