Venting I have so much to live for and I can't do any of it

[Sheeanabrugh]

Isn't it fucking crazy? You spend your entire childhood suicidal because you have a shitty life and you spend your first couple adult years unpacking and? You're happy for a minute. Like a solid year. Then uh oh, you start noticing minor aches and pains in your joints you never did before. And you think nothing of it, Oh well. Life is still okay.
But it just keeps getting worse and nothing any of my doctors do helps anything. I used to have hobbies man. I used to live a fucking life that wasn't going to work struggling through the day of work unless you have sick time, Going home and lying in bed. God I havent left the fucking house in so long outside of work. Even then it's a struggle. I used to have hobbies. I used to do things. Now I rot. How is this fair?
I don't even want to be dead. I want to not be in pain. I want my life back. I want to experience young adulthood like you're supposed to. I finally got my heart problems under control, And I was so proud but I can't fucking do anything anymore. I don't want to end up in a wheelchair I want to know why I feel like this day in and day out.
I don't have hope anymore. Delusions, Yes. Sometimes I daydream That I'm suddenly all better and I do like normal adult shit. And then I remember that won't happen. My best case scenario is death. I hate feeling like I'm forced to ctb When I've got so much I would have lived for if I was able bodied. But I'm not, And I can't live in fairyland.
God I sound pathetic.

 

[Rockman]

Welcome.
You are free to make your choice.
I think most people here was forced to accept reality or cbt that's the thing.
Seems like now is your turn.

 

[Sheeanabrugh]

Welcome.
You are free to make your choice.
I think most people here was forced to accept reality or cbt that's the thing.
Seems like now is your turn.

I feel cheated. This shouldn't be a decision I have to make. I finally transitioned, I have friends and family and I was happy for just long enough to be bitter that I can't have it anymore.

It makes me sick to think of all the things I missed. Things that I just can't do now. I don't want to be the goddamn family cripple for the rest of my life it'd be better to ctb before things get worse. But I can't shake the feeling that if I just hang on a little longer I'll find a doctor who will listen to me, or fix me, or something idfk I'm so desperate

 

[landslide2]

u only sound like a feeling human being and we all need to let it out. i'm sorry for what's happened to your health. it is unfair

 

[uncat_]

I feel cheated. This shouldn't be a decision I have to make. I finally transitioned, I have friends and family and I was happy for just long enough to be bitter that I can't have it anymore.

It makes me sick to think of all the things I missed. Things that I just can't do now. I don't want to be the goddamn family cripple for the rest of my life it'd be better to ctb before things get worse. But I can't shake the feeling that if I just hang on a little longer I'll find a doctor who will listen to me, or fix me, or something idfk I'm so desperate

healthcare and so many doctors are just a joke, I'm sorry you're not being listened to. I truly hope you find a doctor who'll take you seriously. (also, if you're looking for pain management, I know cannabis can help a lot, if it's your thing)

 

[Sheeanabrugh]

healthcare and so many doctors are just a joke, I'm sorry you're not being listened to. I truly hope you find a doctor who'll take you seriously. (also, if you're looking for pain management, I know cannabis can help a lot, if it's your thing)

It does. I also have the luck to have the weed tolerance of a chipmunk which saves me a crap ton of money.if only doctors worked as well as weed

 

[uncat_]

It does. I also have the luck to have the weed tolerance of a chipmunk which saves me a crap ton of money.if only doctors worked as well as weed

haha, that's great. a temporary solution, at least.

 

[Sheeanabrugh]

haha, that's great. a temporary solution, at least.

You know, that's the one spot where I may have won the genetic lottery. Not in many others. Besides the tism and the genderqueerness, POTS basically ruled my life for months. My metropropolol (which is probably going to be how I ctb with my 90 day suppy) saved me from that.. but basically everyone with POTS has EDS. I have a couple friends with both POTS and EDS, I share a lot of their symptoms sets. And yet no doctor will test me. Not even telling me I don't have it, because they all admit that "yeah probably, but I can't test you, not my department". No one will tell me who will???
That shits scary, too. Statistically alone, I probably have it just as a co-occurrence of POTS. Plus, I Check basically all of the symptom boxes. Im Holding out. Hope that is something treatable. It's either that, which is progressive, or MS which is also progressive and I have the family history off. Either way I'm fucked. MS can make me go blind by the way, which I'm definitely looking forward to haha.
Jesus Christ, I should have killed myself when I was like 16. I wouldn't have to be dealing with this right now.

 

[uncat_]

You know, that's the one spot where I may have won the genetic lottery. Not in many others. Besides the tism and the genderqueerness, POTS basically ruled my life for months. My metropropolol (which is probably going to be how I ctb with my 90 day suppy) saved me from that.. but basically everyone with POTS has EDS. I have a couple friends with both POTS and EDS, I share a lot of their symptoms sets. And yet no doctor will test me. Not even telling me I don't have it, because they all admit that "yeah probably, but I can't test you, not my department". No one will tell me who will???
That shits scary, too. Statistically alone, I probably have it just as a co-occurrence of POTS. Plus, I Check basically all of the symptom boxes. Im Holding out. Hope that is something treatable. It's either that, which is progressive, or MS which is also progressive and I have the family history off. Either way I'm fucked. MS can make me go blind by the way, which I'm definitely looking forward to haha.
Jesus Christ, I should have killed myself when I was like 16. I wouldn't have to be dealing with this right now.

hey, if you had off'ed yourself at 16, you wouldn't have had that one good year you were talking about.

is it possible to google search specifically for doctors with specialties in/qualifications for POTS/EDS in your area? if you haven't already

 

[Sheeanabrugh]

hey, if you had off'ed yourself at 16, you wouldn't have had that one good year you were talking about.

is it possible to google search specifically for doctors with specialties in/qualifications for POTS/EDS in your area? if you haven't already

I did get extremely lucky living in a doctor's college town, I'm seeing a cardiologist who mostly specializes in potsies. I barely even had to beg for her to put me on medication, But I got that lucky specialist because I already had a diagnosis. Especially in America. You need the diagnosis to see the specialist, or some referral. If not for hospital rules reasons, Because insurance is a bitch. At some point it may just be faster to go to the hospital, Tell them you're suicidal because you're in pain, And demand testing for EDS. Maybe they'll actually listen to me if I fail an attempt?
Probably a very stupid thing to say. I don't fail when I try things, I would probably just succeed which is not that big of a deal to me and I would enjoy succeeding.

 

[Bear1234]

Hey, I too deal with health issues. I have this chronic illness with no cure. The worst types of illnesses i swear. Anyway I wanted to send some love. I read your post and I resonate completely. You deserve SO MUCH better and MORE. If you were able-bodied you would have the whole world at your feet. It really sucks to feel that your only solution is CTB. Im in the same situation. Im young as well so I never expected my life to be cut short this way. My heart aches for myself and others like you. The truth is, yeah that may be your only way out of suffering but the other part is also true that you never fucking know what can happen. My advice is try all the modes of health you can before you give up. If life wasn't meant for you, then it just isn't but if it is, then it will click up. I hope it is meant for you and things do just click in, you deserve that. Isn't crazy that you don't realize how suicidal you really are until you hit a physical illness?

 

[Sheeanabrugh]

Hey, I too deal with health issues. I have this chronic illness with no cure. The worst types of illnesses i swear. Anyway I wanted to send some love. I read your post and I resonate completely. You deserve SO MUCH better and MORE. If you were able-bodied you would have the whole world at your feet. It really sucks to feel that your only solution is CTB. Im in the same situation. Im young as well so I never expected my life to be cut short this way. My heart aches for myself and others like you. The truth is, yeah that may be your only way out of suffering but the other part is also true that you never fucking know what can happen. My advice is try all the modes of health you can before you give up. If life wasn't meant for you, then it just isn't but if it is, then it will click up. I hope it is meant for you and things do just click in, you deserve that. Isn't crazy that you don't realize how suicidal you really are until you hit a physical illness?

You know, I stopped being suicidal for a loooong. Just didn't occur to me for almost a year. I have a pretty decent job. Pays okay for the area/experience level. But then it's all being taken from me. I'm scared that I'm going to end up in a wheelchair. I'm scared that that's going to be the only thing that helps me. But I'm also at the point where I can't bear to care about that. If I end up wheelchair bound But I learn How to live life again? I don't know if I want to ctb. But I also might. I have friends who part-time ambulatory and the world's just not built for people like us. Even if the pain's not going to kill me the way the world treats disabled people might.
I'm lonely too, desperate for a relationship. I don't know if I really even want one or if I want to feel normal but even that's harder when you can't leave your house outside of work. God I met the cutest guy the other day, absolutely gorgeous, But essentially told me he didn't want to be with me because he didn't want to see me struggle. Nobody wants to date the cripple. That bus is getting real close.
You know that episode of SpongeBob where he gets stuck underground And every time he sticks his hand in the vending machine, the bus shows up and leaves when he takes his hand out of the vending machine to catch the bus. That's me right now. The bus is evading me

 

[Bear1234]

You know, I stopped being suicidal for a loooong. Just didn't occur to me for almost a year. I have a pretty decent job. Pays okay for the area/experience level. But then it's all being taken from me. I'm scared that I'm going to end up in a wheelchair. I'm scared that that's going to be the only thing that helps me. But I'm also at the point where I can't bear to care about that. If I end up wheelchair bound But I learn How to live life again? I don't know if I want to ctb. But I also might. I have friends who part-time ambulatory and the world's just not built for people like us. Even if the pain's not going to kill me the way the world treats disabled people might.
I'm lonely too, desperate for a relationship. I don't know if I really even want one or if I want to feel normal but even that's harder when you can't leave your house outside of work. God I met the cutest guy the other day, absolutely gorgeous, But essentially told me he didn't want to be with me because he didn't want to see me struggle. Nobody wants to date the cripple. That bus is getting real close.
You know that episode of SpongeBob where he gets stuck underground And every time he sticks his hand in the vending machine, the bus shows up and leaves when he takes his hand out of the vending machine to catch the bus. That's me right now. The bus is evading me

Its to nice when life gives you a break <3 When everything is taken from you though, you're like damn I should have never even thought life could have been good for me lol. Your fears are valid. Ending up in a wheelchair really is rough, I am not one to tell someone what to do with their life or how they will be happy but personally for me I know thats a low quality of life that I am not okay with it. The way the world treats disabled people is terrible and honestly just feeling like you can't do stuff is so rough. The truth is, we want the freedom to be able to do everything. freedom to choose if we wanna be in a relationship, if we wanna eat this, drink that, have sex and having those options taken away because of health, sucks. Freedom is important. Damn im sorry you met that guy and he couldn't handle it, it makes you think how life could be if you didn't have a disability. I hear you. Yes i do know that episode, i resonate. I also think growing up I hated that specific episode, it felt so drawn out for no reason lmao. but i understand where you are coming from. I still believe that any thing can happen, that life can always turn around. However, how long you wanna wait for it to turn around, is up to you. Also my dms are open girly! sending love

 

[Sheeanabrugh]

I don't want to wait any longer than tonight but I don't have the PTO for a 72+ hour hold if I fail. I had to use a wheelchair today Just to get out of the goddamn house. Everything that I would Have taken for granted. Became a fucking hurdle. I can't do this but I don't think I have enough gabapentin and metoprolol And I'd probably throw it up anyways

 

[MiraiShisen]

Isn't it fucking crazy? You spend your entire childhood suicidal because you have a shitty life and you spend your first couple adult years unpacking and? You're happy for a minute. Like a solid year. Then uh oh, you start noticing minor aches and pains in your joints you never did before. And you think nothing of it, Oh well. Life is still okay.
But it just keeps getting worse and nothing any of my doctors do helps anything. I used to have hobbies man. I used to live a fucking life that wasn't going to work struggling through the day of work unless you have sick time, Going home and lying in bed. God I havent left the fucking house in so long outside of work. Even then it's a struggle. I used to have hobbies. I used to do things. Now I rot. How is this fair?
I don't even want to be dead. I want to not be in pain. I want my life back. I want to experience young adulthood like you're supposed to. I finally got my heart problems under control, And I was so proud but I can't fucking do anything anymore. I don't want to end up in a wheelchair I want to know why I feel like this day in and day out.
I don't have hope anymore. Delusions, Yes. Sometimes I daydream That I'm suddenly all better and I do like normal adult shit. And then I remember that won't happen. My best case scenario is death. I hate feeling like I'm forced to ctb When I've got so much I would have lived for if I was able bodied. But I'm not, And I can't live in fairyland.
God I sound pathetic.

I understand you so much, I had to give up everything in my life , my dreams and goals, my friends slowly dissapeared from my life due to my absence and lack of energy to engage in social interactions, my health problems during my whole adult life went just downhill no matter what I did to gain it back and I sacrificed so much comfort to get back, I wanted to be healthy so bad that I was able push myself to the absolute limits where I just did things like 21 days water fast and it still did not help me , now I can barely walk, I am in my bed 23h per day and all I can do is to daydream or live in the past where everything was better "Nothing makes the past a sweeter place to visit than the prospect of imminent death" If there was not internet and music I would probably overcome my SI and ctb myself , but in reality I just dont want to kill myself, I want live normal life its just one solution that would actually work but I dont like outcome of it. I cant help you but you are not alone in this shit trust me.

We are all doomed in the end, we all live in this place, we all have life, we were just more lucky that most of the animals to enjoy life before it gets dark and little less lucky than everyone else who can enjoy life and be healthy. 100 years in Universe, for our Sun or for our Planet is just a fraction of a second...

 

[AAE]

Best wishes from a fellow EDS-sufferer. I know all too well what it's like to grieve for the loss of one's health. (While grieving the loss of my soulmate and being abused by neighbors day and night, having to move out of my childhood home after 40 years and no help) Same reason I'm here.

 

[Sheeanabrugh]

Best wishes from a fellow EDS-sufferer. I know all too well what it's like to grieve for the loss of one's health. (While grieving the loss of my soulmate and being abused by neighbors day and night, having to move out of my childhood home after 40 years and no help) Same reason I'm here.

I don't think it's proven that I have EDS yet, but I have pots and hypermobility I can take an educated guess. I've seen some of my friends who are only a few years older than me, And the condition they're in scares me. It's even worse That I haven't been able to get a test even though I've asked several times. I hope it's not EDS. Maybe it's just like a nutrient deficiency or something, And they'll give me a pill and fix me. The past 4 or so months have been hell. I don't know why I've been deteriorating so much faster than normal. I average like a 6 out of 10 on a good day