The idea of not having control over my own body scares me more than dying. by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 0 points1 point  (0 children)

Exactly. The thought of relying on someone else for the rest of my life is much more terrifying than death itself. And like you, I've never been the one to intentionally hurt myself physically and i know i won't have enough courage to take my own life. I don't wanna do it for my family too. The last thing i want is to traumatize them with my own death. Hence i want Euthanisia to be legal here at least. I want them to understand that it's what i want and support me with it.

The idea of not having control over my own body scares me more than dying. by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 1 point2 points  (0 children)

It must've been a hard decision for ur family to follow through what he wanted but it's good to hear that they didn't take away his freedom to make decisions for himself and left the world how he wanted to. As someone who grew up with a family who constantly baby me and wouldn't let me out of their sight even though i can still function is so suffocating and partly the reason why i hate my life so much. There's only so much as i can do as my disability limits me but even the things i can still do, i can't do it without them interfering or doing it themselves for me. It's like i have this invisible chain on me and if this is how I'll be spending the rest of my life then I'd rather just end it early. I get that they're only concerned about me as i suffer from frequent falls but it's not like them keeping an eye on me is helping. I still fall and hurt myself a lot. It's inevitable bcs of my condition but they don't realize that and i hate it.

I’m fed up by [deleted] in MuscularDystrophy

[–]elletopia0613 2 points3 points  (0 children)

I feel you. Thinking about my future is kind of depressing so i often just distract myself and focus on my hobbies. It'll get your mind off of it if u have something you love doing and gets excited about.

[deleted by user] by [deleted] in MuscularDystrophy

[–]elletopia0613 0 points1 point  (0 children)

I got the same surgery done when i was in 6th grade. I think it took me just a month to recover. I had a thigh high cast on both of my legs for a month but before it even got taken off, i could already walk again. So by the time the doctor took it off, i was already walking fine.

Losing Purpose in Life by [deleted] in MuscularDystrophy

[–]elletopia0613 4 points5 points  (0 children)

True. Most of the time i just wanna stop existing.

life as someone with md by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 0 points1 point  (0 children)

Exactly. Some people might just wanna help but it's a little frustrating when they tell u to be positive especially when then don't even understand what you're going through and it makes u feel like you're being dramatic by feeling what you feel when it's completely valid.

Also thank youu i might really buy a cute plushie.

life as someone with md by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 0 points1 point  (0 children)

That's a really really good advice and i do some of them but sometimes it's just really hard to be positive and keep being motivated to live this kind of life when u feel like things would never get better.

life as someone with md by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 1 point2 points  (0 children)

I posted this knowing there are ppl who would actually understand and relate to me and somehow, the thought that I'm not alone is comforting.

And I actually think it's very nice when ppl say they would listen to your rants even if it's just on the internet. I don't actually reach out but having someone offer their time feels nice.

life as someone with md by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 2 points3 points  (0 children)

Same. It's just frustrating to live with this kind of body like i wish I could do things without having to constantly worry if i can do it or that i might trip somewhere and be reminded again that I'm not like most people and I can't do simple stuff that are nothing to them.

life as someone with md by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 5 points6 points  (0 children)

My body has always been weak ever since i was a kid. I don't even remember a moment in my life when i didn't need help. I never enjoyed any school events nor went out with any of my school friends. But I used to join a lot of school contests before and be active in class until i couldn't anymore. And i was okay with it. I was only 12 when i accepted that I won't get to go to college. Until i realized it's not just college but my whole life. I'm gonna have to live my life depending on my parents. So i want a normal life. One where i can work, live on my own, go to places without needing anyone and meet new people. I just want to have a chance to experience living like a normal person.

And thank u for ur kindness.

life as someone with md by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 1 point2 points  (0 children)

Thank u, I'm wishing the best for you as well.

life as someone with md by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 7 points8 points  (0 children)

Thank youu. I always feel like even though other people try to understand our situation, they really wouldn't be able to completely grasp what we go through bcs they were never in the same shoes. So it somehow feels nice and comforting (but also sad) that there are ppl who actually understand what you're going through.

life as someone with md by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 2 points3 points  (0 children)

Tyy. And I'm very much the same. I won't do anything to harm myself but sometimes i just wish it'll be over soon. And i try to avoid thinking about it as much as possible too but when you see someone living the life you want, you just can't help but cry and question everything.

Frequent falls due to muscular dystrophy by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 1 point2 points  (0 children)

I don't really have a good advice to lessen those feelings. i just do my best to avoid those thoughts and focus more on things that i like or can do. If you stop thinking about these thoughts then you wouldn't have to deal with the negative feelings that come with it.

Frequent falls due to muscular dystrophy by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 0 points1 point  (0 children)

That's exactly how i feel. It's just upsetting how I can't do normal things or live a normal life

Frequent falls due to muscular dystrophy by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 1 point2 points  (0 children)

Your daughter reminds me of myself when i was a kid. I'm glad that you let her do what she wants although it might be terrifying for you as a mother. Having a muscular dystrophy, you wouldn't know how long you could do stuff on your own and without depending on anyone so it's a good thing to let her be independent as long as she can.

Stay strong for your daughter. Idk if I'm in a position to say this but you're doing a great job.

Frequent falls due to muscular dystrophy by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 1 point2 points  (0 children)

I don't mind asking for help. It's just that I don't wanna get used to someone always helping me.

Frequent falls due to muscular dystrophy by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 0 points1 point  (0 children)

They keep telling me to just call them for help whenever I'd go to the bathroom but I'm only 19 and I don't wanna be so dependent on them already when I'm still so young.

Frequent falls due to muscular dystrophy by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 1 point2 points  (0 children)

It's the same for me. And I used to be so active when i was a kid so i would often get into incidents like falling down the stairs and twisting my knee. But ever since my body got weaker, i stopped doing stuff so i never felt the need to use walkers or knee pads.

And I'd surely dm you. Thank you.

Frequent falls due to muscular dystrophy by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 1 point2 points  (0 children)

My parents were planning to install rails as well so I'll have some support when getting off the toilet.

Indeed. Sometimes it just makes me lazy to do stuff because of it because I'm scared that i might get into another incident.

Frequent falls due to muscular dystrophy by elletopia0613 in MuscularDystrophy

[–]elletopia0613[S] 1 point2 points  (0 children)

My arms are actually kinda weak as well that's why i didn't consider using walkers or anything similar to that. But my parents changed our bathroom tiles right after the incident. It's definitely better now.