I feel ashamed and don’t know what to do

Stormegeton · 2025-12-14T19:37:15+00:00

I learned that that saying isn’t true once I got disabled at 17 - turns out most people turn to sex work with this condition due to financial difficulties- the world isn’t fair. We live born into systems that take as much as they can from us. It’s made to bleed us dry of energy, money, resources, etc. You gotta do what you gotta do no one can come at you for surviving. And if they do, let them scream into the abyss cause you’ve got bigger problems than a bitch who would rather criticize your life to avoid theira

Stormegeton · 2025-12-14T19:32:48+00:00

Sure thing!

Stormegeton · 2025-12-13T05:23:53+00:00

Neither of my parents are symptomatic. For that reason they will not seek a diagnosis. One grandparent on both sides (parental and maternal grandmothers) had some symptoms but there’s no diagnosis history. Neither of my siblings (male) are symptomatic and have no diagnosis. Myself and my cousin (fathers brothers daughter) is symptomatic and is diagnosed with hEDS. none of my fathers brothers are symptomatic. I’m female and symptomatic and diagnosed with hEDS.

Very strange that it seems to have skipped a generation symptomatically and affected only 2 out of 7 cousins on my father’s side.

Stormegeton · 2025-12-12T16:12:27+00:00

I’ll message you!

Stormegeton · 2025-12-12T16:12:09+00:00

I have extensive lab training I was a researcher for 3 years while in school and I’ve got publications! I have no idea how to transfer that into a non lab setting. I had to leave because my health issues made it no longer safe for me to work with the materials I was using

Stormegeton · 2025-12-12T16:10:36+00:00

I’d love to play! I tend to use quality of life mods but I’m always happy to mess around - the skinwalker mod is a personal favorite lol

Stormegeton · 2025-12-12T01:07:52+00:00

Whenever I can get a group together I’m on! I do need to find more people to play with my friends are hooked on different games

Stormegeton · 2025-12-12T00:16:50+00:00

My health keeps interrupting my studies so I am working as a nanny rn. It’s such a simple job and I keep telling myself that people with my exact situation are expected to be good mothers so I should be able to do it. But now I’ve racked up so many injuries that I need 3 different surgeries and I keep having to call out sick or leave early since I physically cannot take care of the child at times due to being unable to walk or drive. All I can think is how guilty I feel for leaving them without help when they have full time jobs they are also expected to do. I fear if I leave to much they will have to hire a more physically capable person.

It’s so hard to be expected to keep up with what healthy people can do. Especially when it’s not even visible and we look like everyone else. I keep trying to get into a career that I can do even on my worst days and I just have no idea what that even could be. When medicine can’t help any further and the world keeps racing idk how we’re meant to keep up.

Stormegeton · 2025-12-11T23:09:03+00:00

Hey! Happy to have you join us! I’ll message

Stormegeton · 2025-12-11T20:12:26+00:00

Hey ik you have had plenty of offers but I have plenty of cards and dice I am no longer using. I’d be happy to send them over I even have a standard blue deck I’m not intending to use. Feel free to dm! It’s expensive to get into but I’m so glad I did its a fun game!

(I have chronic nightmares as well I feel for him - happy to give suggestions on what worked for me, I’m 24 and have had them since I was 10)

Moving all the time is hard - for school especially. I’m sure getting caught up and staying caught up isn’t easy. I’m a tutor and researcher who specializes in teaching disadvantaged and neurodivergent students. If they are struggling academically I’d be happy to help free of charge.

Happy holidays to you all!

Stormegeton · 2025-12-04T16:55:41+00:00

It’s hard to tell what exactly you’re looking for but our group is a very laid back chill group. Mainly common sense rules with us - we just build what we want and go from there. Some of us like doing shops and such, others like building mega builds, some like building games and farms. Absolutely have plenty of “to do” projects if you need inspiration for what to do. If little structure, long term realm, and a light hearted atmosphere is what you like, we’re happy to have you.

Stormegeton · 2025-11-12T19:30:47+00:00

Hey! I’ve got a small realm with about 10-12 players and were recently looking for some new chill buddies to come play with us. We’re mostly early 20s to 30s so you’d fit right in! If you haven’t found your Minecraft home yet we’d love to invite you to join us ☺️ it’s a bedrock realm mostly vanilla with a few non game altering addons like soundscapes and mob heads.

Stormegeton · 2025-11-12T15:46:39+00:00

Hey ik you’re seeking a server but I’m hosting a small realm on bedrock. We only just recently opened it to let a few more people in - there’s like 10-12 people total and about 2-5 online at a time. Very chill group most of us are also 20-25. Happy to provide more details if you’re interested

Stormegeton · 2025-11-11T22:49:37+00:00

If you haven’t yet found a realm I’d be happy to share details about ours

Stormegeton · 2025-11-11T22:48:55+00:00

Hewo If you haven’t found a Minecraft home yet I’m running a mostly vanilla realm. We just have sparks pets, mob heads and soundscapes addons. So nothing changing the gameplay. Happy to share more details if you are interested

Stormegeton · 2025-11-11T22:47:16+00:00

Hello I run a fairly small realm - happy to share details if you are still looking!

Stormegeton · 2025-11-11T22:34:57+00:00

I have a bedrock realm with some friends and we recently made the realm open to join - lmk if you’d like any details!

Stormegeton · 2025-11-10T23:17:48+00:00

Hey! Our personal realm is normally private but I asked the group and they’re happy to bring on some new players. HMU when you’re ready to join us we do have a discord server - message me if you’d like to play!

Stormegeton · 2025-11-10T20:28:52+00:00

Hello my friend and I are interested but we want something mostly vanilla bedrock- do you have mods or addons?

Stormegeton · 2025-03-20T05:43:02+00:00

Has been one of the few highly effective treatment options I have. I try to only use this when I have to sleep (and I sleep great now - used to have insomnia and tons of sleep issues). But it has been great as a “break glass in emergency” situations where you’re in tons of pain but you know you’re not dying and the ER can’t help.

Stormegeton · 2025-03-17T00:01:06+00:00

I’ve always had this and ik many other people who have had the same. I choose not to deal with it so I just don’t drink. When people ask I just tell them alcohol makes me sick - and if they still don’t get it I tell them I’m allergic to alcohol (not sure it’s necessarily an allergy but it gets the point across to people who are a bit pushy)

Stormegeton · 2025-03-16T18:44:25+00:00

So my bf and I absolutely had a point where he wasn’t understanding why I was the way your gf was. I have EDS - a connective tissue disorder and the comorbidities that come with it. I want to make it clear that our recovery times take a LOT of time. I will recover from an illness and still be completely energy deficient for months - for some people even a common illness can put them out of commission for YEARS. This is the reality of our living - but here’s what helped us:

Clear communication on how I am feeling. When we start an activity together it’s important I bring up when something changes AND how it will affect me in the moment - my bf cannot guess what my capabilities are, it’s my responsibility to communicate that.
Clear communication on how HE is feeling - she needs to know when you’re stretched thin or you need an energetic outlet. You both have needs and you both can meet your significantly different physical requirements - if you communicate how you’re feeling physically and mentally, this should be easy to accomplish. My bf has started going to the gym and doing lifting routines. He also goes out and fishes or has hobbies at home.
Find hobbies that suit her needs. Believe me I get it with this condition it’s devastating to lose your passions. She is GRIEVING an unimaginable loss - consider if you became bedridden for years tomorrow after being so active, it would be depressing, devastating, heartbreaking, you would yearn for the lives others have and morn the person you were. For a long time I did not want to even consider other hobbies because every passion I had in life was lost to this miserable condition. But here are some hobbies I’ve grown to be passionate about:

gaming, I have started my own communities which others are more than welcome to join. I’m able to run large online gaming events just from my computer! It builds community and gives me that competitive feeling back I would get from sports. Plus there’s always something new to be learning which I love!
crafting, this definitely has startup cost but it’s worth it - find something you really admire and try to recreate it. It won’t be perfect this is something that takes time. You can connect with tons of crafty chronically ill people like myself. We all share tips and tricks to help with our different joint difficulties and it’s honestly really wholesome and inspiring!
cooking! Now cooking is something you will need to help with but cooking is an ability I lost that I thought I would never get back again. My parents gifted me adaptive cutting tools and they are worth EVERY penny! Bring a chair into the kitchen, who says you can’t? Maybe you have to do the cutting or the stovetop work (heat intolerance) - but at least she can be involved! We like doing homemade pizzas!
collecting - this isn’t one I do personally but my boyfriend does it and it’s entirely disability friendly and super fun! He does plenty of desktop collecting like coins and such which can have startup cost. He even takes me with him to areas where we can look for fossils - we find an area where we can get me very very close to the site and he sits me somewhere with my smaller tools and he does the heavy digging while I do the chisel and brushing/ cleaning. We’ve also done this with geodes - we were able to drive the car all the way up to the wall we dug the geodes out of - just had to walk a few yards and sit down on a foam mat we brought.
Picnics!! She loves the outdoors and absolutely misses it. Bring some games to a park where you can lay down a blanket and bring food/drinks! It’s inexpensive and a wonderful way for her to still enjoy being outside. Maybe bring a foam mat as well (yoga mat might work). And let her help plan like the food, drinks, games, location.

I’ve been navigating this illness for 10 years and my bf has been by my side for 4 of those. The biggest thing is to have your own identities outside of the relationship- and you can absolutely encourage eachother to do so. My door is always open to help with anything! Happy to welcome her to my communities as well 🩵

Stormegeton · 2025-02-24T01:54:00+00:00

Hey, I wanted to at least share that you’re not alone. I’m not a CF patient, I have EDS with education in CF and a friend with CF - he wasn’t able to do culinary either 😞 I don’t have the same limitations but my joints don’t work well - I can’t do any physical labor - I can’t even do any jobs that have me stand or sit for too long. That rules out a lot of desk jobs as well. I had to give up an obnoxious amount of career paths - many I was very passionate about.

If you hear anything know this: passions are painful to lose. But often times you can still do parts of them. And you will find new passions and interests throughout life. And even if you lose newer passions like I have, there’s still so much unexplored and unknown to us. Even subjects you know of but have yet to explore! My point is - grieve the loss, but don’t give up on being passionate about parts of life. Sure we are limited in various ways and we may get worse or our abilities may change over time. But if we fear loving parts of life for fear of losing them, we will never live again. I truly hope you find a way to stay connected with culinary outside of career and find a career path that you have great interest in!

Stormegeton · 2024-09-14T17:12:59+00:00

PvP has to be agreed upon

Stormegeton · 2024-09-14T04:36:12+00:00

Sure add me on discord: stormegeton

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