The Official Mental and Physical Health Support Thread [PLEASE READ OP]

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Thank you OP for making this thread! I want to share my stories too. Sorry if it's gonna be a long one^^;

 

So, I have this rare disability/disease. I'm sure all of you know Stephen Hawking, right? I have the same disease as him, it's called Motor Neurone Disease. To explain it simply, it makes spinal cord stop working properly which resulted causing the function of motor neurons to break down.

 

How did I notice I have this disability was started back then when I was still in a kindergarten. My lips look different than the others and I can't speak like everybody else do. I can't close my mouth (it has to be done with the help of my hand) and because of that I can't pronounce the alphabets that requires you to put your upper lip and lower lip together, such as B, M, and P.  If I say these 3, it would sound like D, N, and T. It's also hard for me to say O and U properly, since the motor neurons in my face stop working I can't make my lips round to 'o'.

 

When I said the neurons stop working in my face, it means my whole face, which made me notice another disability; I can't show my facial expressions, I can't close my eyes completely, when I smile my lips doesn't stretch, I can't frown, and so on. This.. make other people kinda misunderstood or wrong about me. An example is like when someone take a photo of mine and when the result came out they said I have to smile more. I already smiled but because my lips doesn't stretch, it makes me look like I didn't.

 

Then I noticed another part of my body is weak amongst others at 2nd year of my middle school. I receive a punishment and I have to stretch my arms out in front of the class while singing a song that is given by the teacher. So when I try to stretch my arms and raise them, my muscle is too weak for it, I have to keep my thumbs tied together so I can raise them high. I also noticed that the shape of my shoulder is kinda more bent than the usual and the bones (scapula) in my back is bulging out.

Because of this, when I started learning violin, it's hard for me to raise the violin and play the string in G. It's also hard for me to bring heavy things and I have to use a sling bag for purpose. (using backpack is fine, but because of the bones it's uncomfortable).

 

I thought my disease only applied to my face and shoulders, but unfortunately it's not. It's spreading, slowly, apparently.

 

My right leg stop working completely when I was in my 3rd year of high school. I can't bend my knees nor my ankles, cannot raise my calf, and cannot run. I skip every sport class and it's tiring for me to take stairs since I have to put more strength on my leg. Thankfully, my left leg is still working fine until now, and has to support the other leg when I'm walking (when I walk forward, I have to kick my leg a little) or when I'm taking the stairs. Also because of this, I can't drive a car or ride a bike.

 

So.. yeah. That's about my disease. I'm still thankful to god that god decide to born myself this way so I can learn so many things and appreciate others and be grateful, but sometimes, it's just really, really hard. I'm also so so scared that the disease is gonna spread to other parts of my body. (I can feel my left leg slowly become weak..)

 

I love to dance, to sing, and to play violin. But knowing all of this.. knowing there's some dance parts that I can't do, knowing my pronunciation is bad, knowing how hard it is to play some notes in violin, it's holding me back. I really love dancing, singing, and playing violin, but... it's just unfortunate.

Edited December 21, 2017 by eternities

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You have similar problems with me, the difference is that I'm doing better than you, but still hard to living by myself.

I don't know how to react except that you're amazing by yourself, and yeah it's complicating when you love doing something but you can't do that because of your problems.

I kinda inspired because of this story, thanks for share your story, dear

And hey, always leaning to your God, okay? He know what is the best for you, and again, thanks!

Keep fighting! ><

 

Thank you! You are amazing, too! All of us are amazing~ and yes, it is. But there also times when I just keep doing what I love. I can't do some parts but I still love doing it.

 

Aw, really? Thank you! You're so nice   Your words are really encouraging~

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I was having a fight with my lover again. It will eventually pass but idk, she gets mad over small things and I'm tired that we have to fight again and again

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The holidays were supposed to be relaxing and enjoyable, but this has probably been the worse in years. I'm not even excited for the new year to start now because it reminds me of how much I feel like a failure. I could have done so much better this year and I just messed up on everything. It feels like it's too late for me to succeed at anything now, and I can't even seem to figure my life out or myself.

 

I'm trying so hard to stay positive, but it's too hard lately. I keep feeling like I hate myself. Like it would be better if I woke up and I was someone else.

I feel like this too lately because I have so much things to do and I can't seem to love myself. I can't be positive and feel like nothing is gonna work for me as well.

 

All we can do is survive and live the life we supposed to be. Cheer up and let's do our best this year 

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Uhm, are you already discussing about it with her? Since it's important to discussing about it.

I did and whenever we did it, we wouldn't stop fighting. She would blame me and then start to say my negative side and the bad things I ever did. After that we would stop chatting for awhile before chatting again. But after that I know we will fight again. The cycle never ends, it's tiring.

 

 

She said her mood is ruined because I sent a chanyeol photo so suddenly when she was talking about NCT's Mark. Sigh. I mean, I just want to share one photo, is that wrong?

 

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I really wish that I can turn back the clock to 2 months ago. Because of what I done, I lost treasures that are precious to me. I continue to smile when all I want to do is cry. It's really hard to stay strong. Some days, I just dunno what to do anymore. I lost interests in stuffs that I have passion for. Sorry, but I just need a place to let out my feeling.

 

 

What have you done in the past is in the past, I'm sure all of us has done something that we regret until now. It's okay to cry sometimes, it's okay to not to be strong, so you can just let it all out  You don't have to be sorry since this thread is created with that purpose. I'm sorry if I don't do any help, I hope you will get better, just take your time 

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I hate to even say this but i'm getting really dark thoughts recently. My situation actually improved a lot, i got professional help and people who check up on me and yet i can't help but feel worse every single day. There's just this huge emptiness that i can't seem to break out of. I feel disconnected from everything, even my closest friends feel so distant and i can't really enjoy anything anymore, and i'm afraid that it's just a matter of time until my mind pushes me over the edge.

 

Anyone who was in a similar place, how did you deal with this? None of the things i tried seem to work for me, no matter how much effort i put into it.

 

well, I think we just need to get distracted so we won't have any bad thoughts. For me I tried to spend my time with my family and friends so that dark thoughts won't linger on my mind even though it's just for a while.. I also did the things that I love even though I don't feel like to do it anymore