My mind wants to survive

[Whale_bones]

Even with all the effects of PTSD that will be there forever, my mind is a vast, imaginative world. I want to create art, I want to explore, I want to experience. There are a thousand simple pleasures that are now unachievable dreams. I would relish sitting in nature and just watching the still trees of a forest, hearing the birds chirp, feeling crisp wind as it passes.

Hearing the highs and lows of an instrument as it's played in front of you, identifying the harmonies in a chorus of voices and being swept up in a crescendo. The moment of recognition on a friend's face when they first see you and their expression changes to one of warmth and welcoming.

My mind desperately wants to battle on, to be given at least the chance to experience these things again. But my disease has taken every possibility from me, because I need my body as a vehicle to accomplish anything.

It's been at the point of not able to walk, can't lift things, can't do normal tasks for several years now. But it seems like I can NEVER wrap my mind around it. How could I?! The disconnect is huge, it makes no sense to still be living and have a mind that can imagine so much, yet a body that is so trapped. It's cruel in so many ways.

Anyone else with a progressive/severe condition that feels the same?

 

[LaVieEnRose]

I think most people with similar conditions and ailments can relate. It's a horrible feeling to feel pushed towards suicide by your life circumstances, that they're making the choice for you.

 

[TiredTurtle2]

I want to do all those same things and so much more but i know that i either never will or will never be able to enjoy any of it

 

[iloveduster]

I don't have an actual disease that has been draining the life out of me, or at least I was never diagnosed. I'm too terrified to even look for what could explain my severe physical and emotional pain and my fear is so crippling that I can't even speak to anyone. At times I think "maybe I could turn my life around," but then the reality hits and I understand that I can't do anything to stop this severe hurting. I can't get a second of peace. I want to be normal. I want to enjoy life. I want to enjoy the small little things of life. Sometimes I go out, and think how beautiful the silly little things are, but not even a minute passes till my pain overpowers my wishes and I'm home again laying in pain and hoping for it all to stop because everything hurts so bad. But I'm even scared of failing ctb, so I have to push myself to bear this pain. If only there was a way to achieve peace again.

 

[iloverachel]

Even with all the effects of PTSD that will be there forever, my mind is a vast, imaginative world. I want to create art, I want to explore, I want to experience. There are a thousand simple pleasures that are now unachievable dreams. I would relish sitting in nature and just watching the still trees of a forest, hearing the birds chirp, feeling crisp wind as it passes.

Hearing the highs and lows of an instrument as it's played in front of you, identifying the harmonies in a chorus of voices and being swept up in a crescendo. The moment of recognition on a friend's face when they first see you and their expression changes to one of warmth and welcoming.

My mind desperately wants to battle on, to be given at least the chance to experience these things again. But my disease has taken every possibility from me, because I need my body as a vehicle to accomplish anything.

It's been at the point of not able to walk, can't lift things, can't do normal tasks for several years now. But it seems like I can NEVER wrap my mind around it. How could I?! The disconnect is huge, it makes no sense to still be living and have a mind that can imagine so much, yet a body that is so trapped. It's cruel in so many ways.

Anyone else with a progressive/severe condition that feels the same?

I have a good friend who is suffering from a similar condition of chronic physical pain that feels the same.
I really hope you find a way to recover so that you can do the things you enjoy in life again.

 

[willitpass]

I have no true words of reconciliation other than I am terribly sorry for what you're going through. If I could swap places and give you my able body and let you live out your life happily I would do it in a heartbeat. I'm very sorry life has landed you in this situation

 

[Whale_bones]

I'm too terrified to even look for what could explain my severe physical and emotional pain and my fear is so crippling that I can't even speak to anyone.

I'm sorry you have to deal with such fear, I understand being terrified. I have medical trauma and the medical system as a whole can be very difficult to navigate, it often feels hopeless. As you don't have a diagnosis, I would still recommend in your situation atleast thinking about getting some basic tests done. Who knows where it could lead?

There are so many things in the body that can cause major problems if one thing is off (for example, if you're deficient in an electrolyte; many electrolytes are essential for the body to function, so just being low on one can wreak havoc. And that shows up on a simple blood test). You could try going in with the attitude that you probably won't get answers, and just try to be neutral about it, so you wouldn't be super let down if you didn't, and it would be like a bonus if you did get some information.

But I know it's super hard. Sending you strength either way.

I have a good friend who is suffering from a similar condition of chronic physical pain that feels the same.
I really hope you find a way to recover so that you can do the things you enjoy in life again.

Thank you for your kind comment. Unfortunately, I know that my condition (muscular dystrophy) isn't treatable or reversible, and it will only progress even more the longer I live. Unless there's some huge, unexpected advancement in medical technology, but that usually doesn't happen unless there's major funding for research, and, well… that's a whole nother topic!

I have no true words of reconciliation other than I am terribly sorry for what you're going through. If I could swap places and give you my able body and let you live out your life happily I would do it in a heartbeat. I'm very sorry life has landed you in this situation

Thank you for such a kind and thoughtful comment. Just the sentiment that somebody would be willing to do that is such a kind thought. I wish we had much more advanced technology and could do something like replicate healthy bodies (without having to switch, so no one would have to have the disease and we'd both get healthy bodies!) I dream of something like that a lot.