loneliness, illness and family

[hereisnow234]

I'm sorry I can't type much due to my disability.

I have shared my wish to die with my parents as my illness is deteriorating. I have been met with a lot of hostility. I know they love me and this is just their 'stuff' coming out, but i've also been deeply hurt that they can't hold me in my suffering and be there for me. And understand that it's not because im weak but just that im in immense pain.

I wish they could support me right up to the end, without overstepping a legal boundary, and it hurts that they are 'abandoning' me when i actually need love most.

My condition isn't medically explained beyond a lose label of 'ME' and so i believe they see me as weak willed.

i am increasingly disabled and trying to carry everything on my own emotionally and practically to give myself peace to die is crushing me.

can anyone relate?

i am still attempting to source sn despite my difficulty using IT

 

[Meowsies]

I feel you. It's really hard for people who haven't experienced mental illness themselves to know how to give support when you're in this type of situation. I wish people were more emotionally intelligent.

 

[hereisnow234]

thanks , it's not mental illness but i feel you on this account also. i know how supportive i'd be to them if they came to me in this much pain, and it hurts they just react with their own fear of losing me / re-enactments of their trauma, instead of actually being with the person who is suffering.

i have a post viral encephalitis combined with ME which is causing me intense physical and emotional/ mental discomfort and pain.

 

[FuneralCry]

It sounds like you've suffered a lot, existence really is too cruel to me. But anyway I wish you the best, I hope that you find peace.

 

[Bear1234]

im sorry friend, im battling a chronic illness and i see you and i hear you. The truth is, suicide will never be something acceptable in the eyes of your family or friends that love you so much. It just won't, mostly because they aren't the ones immensely suffering the way you are. But none of that comes from a bad place. The reason this sucks because CTB is the hardest thing to do and its a moment where you would want someone to hold your hand and love you and tell you its gonna be okay because CTB is scary but unfortunately that won't be possible. So you have to realize that one day you are gonna have to be strong enough to do CTB all alone and thats okay too. Its just not easy. I hope that you get a miracle and heal so that you don't have to face such a reality. you deserve better, we all do. Sending my love.

 

[hereisnow234]

thank you bear. that was really kind and heartfelt. it's exactly that - it's so scary and i want them to help me emotionally with it, but they seize up so bad. i'm not asking them to do it for me or be present at the moment it happens, but more like just discuss it with me, help reduce the fear, stop clinging so much to denial of my pain which is so intense. i'd like to have a peaceful hospice style few days / weeks while i still can instead of fighting and despair when i bring it up

i'm not fundamentally depressed in the sense that i used to enjoy life before getting SO unwell. and i mean really squeezing the last little bits like sitting in sunlight or noticing a caterpillar… so i wish they'd therefore realise how much intense suffering i'm in in order to be closing in on this.

but thank you bear, hearing love from someone in this situation really helps. we all here need love most of all, even if we don't have the necesssary life apparatus to metabolise and sustain ourselves on it anymore.
honestly that was the most warm and heartfelt thing i've felt in weeks . thank you for hearing me, stranger. i'm sending you love back. i hope you get a miracle too.

It sounds like you've suffered a lot, existence really is too cruel to me. But anyway I wish you the best, I hope that you find peace.

thank you

 

[Bear1234]

thank you bear. that was really kind and heartfelt. it's exactly that - it's so scary and i want them to help me emotionally with it, but they seize up so bad. i'm not asking them to do it for me or be present at the moment it happens, but more like just discuss it with me, help reduce the fear, stop clinging so much to denial of my pain which is so intense. i'd like to have a peaceful hospice style few days / weeks while i still can instead of fighting and despair when i bring it up

i'm not fundamentally depressed in the sense that i used to enjoy life before getting SO unwell. and i mean really squeezing the last little bits like sitting in sunlight or noticing a caterpillar… so i wish they'd therefore realise how much intense suffering i'm in in order to be closing in on this.

but thank you bear, hearing love from someone in this situation really helps. we all here need love most of all, even if we don't have the necesssary life apparatus to metabolise and sustain ourselves on it anymore.
honestly that was the most warm and heartfelt thing i've felt in weeks . thank you for hearing me, stranger. i'm sending you love back. i hope you get a miracle too.

thank you

I know <3 i was also never fundamentally depressed. Illness changes a person, i love the simple things in life and still do and without illness, I can live a beautiful life but physical illness is rough. Im glad I was able to give you a feeling of warmth and love, its hard but hang in there. and Thanks for sending the love back!

 

[suffering_mo]

Yes. I can understand this and I am very sorry. No one can understand another's pain or suffering unless they have experienced something similar and even then, there are nuances that make it different for each person. It makes it all the more lonely, unbearable for me. They know that I am in physical and mental pain, from my medical injury, and that's why I asked for assisted suicide but instead of being met with compassion, instead it's disgust, like I am a horrible human being for even thinking such thoughts. I should have never brought it up anyway because I don't even have a specific diagnosis that would qualify me.

Nonetheless, I'm afraid of hurting some of my family members. The ones who have no compassion and minimize my suffering, I have quit speaking to. It hurts even more. I'm sorry you are suffering.

 

[Xtrawoes2000]

I'm sorry I can't type much due to my disability.

I have shared my wish to die with my parents as my illness is deteriorating. I have been met with a lot of hostility. I know they love me and this is just their 'stuff' coming out, but i've also been deeply hurt that they can't hold me in my suffering and be there for me. And understand that it's not because im weak but just that im in immense pain.

I wish they could support me right up to the end, without overstepping a legal boundary, and it hurts that they are 'abandoning' me when i actually need love most.

My condition isn't medically explained beyond a lose label of 'ME' and so i believe they see me as weak willed.

i am increasingly disabled and trying to carry everything on my own emotionally and practically to give myself peace to die is crushing me.

can anyone relate?

i am still attempting to source sn despite my difficulty using IT

I can relate. Face a slow and agonizing end without any living relatives and my wish to CTB has made me sound foolish and desperate on the site. Well, I am desperate and want this pain and deterioration to end. No one should be denied that. Done a lot of research and still come up emptyhanded. Know you are not alone is your frustration. Hope things change for both of us.

 

[rotciv]

You're not alone.

 

[PhDone]

Ah shit, ME, nightmare. Same for me. Awful goddam disease, depends on your severity but for me in traps me in an isolated future and with not enough function to live any quality of life.

Its a massive additional mental load to have people make out you're weak or not trying if you cant bear it. Ive said to people i'd rather have a terminal illness; then i'd get support and everyone rallying around. Instead of stones thrown at me. I hate that these sorts of illnesses have people looking for diy ways out. I shouldnt be forced to sit in a level of suffering I cant cope with. And if people say to me somehow its my fault for not coping it just makes me feel shitter than I already do for being in this goddam illness in the first place. There are some hideous illnesses and deaths out there, some super scary. But its feels like some kind of torture being made to stay in this thing ongoing.

I'm so sorry, I understand totally. And yep, going through it so alone seems crazy for something so devastating.

 

[Innereye]

Look into learnt helplessness. ME is heavily associated with psychological trauma.

Not to rule out other conditions. You should also get a sleep study if you want to go more in detail. ME being a diagnosis of exclusion is not the box you want to be put in for the rest of your life. All it means is that they don't know what's going on.

 

[PhDone]

Look into learnt helplessness. ME is heavily associated with psychological trauma.

Not to rule out other conditions. You should also get a sleep study if you want to go more in detail. ME being a diagnosis of exclusion is not the box you want to be put in for the rest of your life. All it means is that they don't know what's going on.

I think ME is a pretty clear diagnosis if you have it tbh. There are now very clear neuro-immune mechanisms. So within some individual variation there are some solid consistencies. Most ME people I know well on forums share the same basis. And critical elements also show in the post-exertional malaise (critical for diagnosis) and hence 'crashing' post too much activity. Crashes are pretty obvious as a distinct characteristic that adds to the conviction its ME. Theyre close to tests being able to confirm but not quite.

@hereisnow234 did you get diagnosed using the ME criteria? It shouldnt just be by exclusion.

Agree tho, its not a diagnosis you really want. Bloody awful, incurable and untreatable nightmare.

 

[oro]

thank you bear. that was really kind and heartfelt. it's exactly that - it's so scary and i want them to help me emotionally with it, but they seize up so bad. i'm not asking them to do it for me or be present at the moment it happens, but more like just discuss it with me, help reduce the fear, stop clinging so much to denial of my pain which is so intense. i'd like to have a peaceful hospice style few days / weeks while i still can instead of fighting and despair when i bring it up

i'm not fundamentally depressed in the sense that i used to enjoy life before getting SO unwell. and i mean really squeezing the last little bits like sitting in sunlight or noticing a caterpillar… so i wish they'd therefore realise how much intense suffering i'm in in order to be closing in on this.

I relate to all of this. :( I have bad CNS/brain injuries which make life intolerable and torturous. I was suffering from mild/moderate ME before this (made a mistake when i was in a bad crash, panicked and took some stupid drugs the doctors prescribed me which caused the current devastating injuries) and was able to still build a good life around my limitations so i don't have a problem living with disability.. But there are conditions that are so nightmarish that people who haven't experienced anything like that can't or don't want to believe it.

i think especially when it's something doctors can't help you with, a lot of people just can't handle the reality that you could suffer unimaginably, so much that the torture makes you scream every day and there is no hospital to go to, no drug to relieve it, no-one to turn to.. My loved ones still don't really believe it despite seeing me being tortured by my nervous system and hearing me wail and beg for god or something to let me die basically every day for months. I still find myself to be in disbelief despite being the one to experience it 24/7. How can a person be this sick without dying, how can a person be this sick with nowhere to turn to, it just totally pulls the rug under your feet. I feel like i am floating in space alone, so utterly alone, the feeling of basic safety i was fortunate enough to have all my life turned out to be an illusion.. Once something really goes haywire in your system it can just cascade into further and further horror and only now i realize how little western medicine knows, how limited is the scope of illnesses they can cure.

I too really wish i could have hospice and grieve together with my family instead of me grieving alone and them when i'm already gone.. then thinking what they still wanted to say to me. it breaks my heart. My damage is irreparable in a way where it's against the laws of thermodynamics for it to be healed to a degree that would give me an acceptable quality of life. The human body is capable of incredible healing but a broken egg cannot be made whole even if you go to a 1000 specialist and you don't need anyone with a doctoral degree to tell you that. Yet my loved ones insist i "cannot know that it's permanent" until i somehow prove it, until a doctor specifically tells me i will suffer this level of torture 'til i die and i don't think that's ever going to happen. Perhaps they can offer rehab for my brain injury and i will learn to perform a few more basic tasks like cook a meal, while still feeling the same mental and physical torture but from the doctors' point of view i will be "better". But it would make no improvement to my quality of life personally. I ask my loved ones then what's the end date for this, when will you believe it's permanent, five years, ten years, fifty? But they can't answer, and i know it's unfair to expect them to. :(

If this was a condition that was going to kill me, it would be a tragedy i didn't have to bear alone but we could share it with my friends and family, where as now it's my tragedy and them being in denial and then their separate tragedy when i'm gone. I think it's only a rare kind of person who could accept their loved ones rational suicide and sadly it's probably unreasonable to hope for, like Bear1234 said.

So i still try to remember to be grateful that i am not actually alone, even though i feel like i am alone in my suffering, and that i have people to help me even though they are not helping me the way i wish they were (helping me to get accepted for VAD instead of more futile attempts to get treatment) and realize things would be much much worse if i didn't have that help. It's hard to appreciate the help when it doesn't really diminish your suffering, hard to be grateful that you are on the 5th circle of hell and not 7th haha... in fact it feels impossible and i am so afraid of driving everyone away because i am angry and ungrateful. How do you all deal with it?

It helps a little to share with people who understand. OP, I experienced consistent improvements with chinese medicine for my ME before my stupid mistake. but i've never been severe and obviously don't know how long you've had it and what all have you tried and the same things don't work for everyone, i definitely don't want to make you feel even more invalidated.. just putting it out there. Let me know if you want any further info on the stuff that helped me. All the best

 

[suffering_mo]

I relate to all of this. :( I have bad CNS/brain injuries which make life intolerable and torturous. I was suffering from mild/moderate ME before this (made a mistake when i was in a bad crash, panicked and took some stupid drugs the doctors prescribed me which caused the current devastating injuries) and was able to still build a good life around my limitations so i don't have a problem living with disability.. But there are conditions that are so nightmarish that people who haven't experienced anything like that can't or don't want to believe it.

i think especially when it's something doctors can't help you with, a lot of people just can't handle the reality that you could suffer unimaginably, so much that the torture makes you scream every day and there is no hospital to go to, no drug to relieve it, no-one to turn to.. My loved ones still don't really believe it despite seeing me being tortured by my nervous system and hearing me wail and beg for god or something to let me die basically every day for months. I still find myself to be in disbelief despite being the one to experience it 24/7. How can a person be this sick without dying, how can a person be this sick with nowhere to turn to, it just totally pulls the rug under your feet. I feel like i am floating in space alone, so utterly alone, the feeling of basic safety i was fortunate enough to have all my life turned out to be an illusion.. Once something really goes haywire in your system it can just cascade into further and further horror and only now i realize how little western medicine knows, how limited is the scope of illnesses they can cure.

I too really wish i could have hospice and grieve together with my family instead of me grieving alone and them when i'm already gone.. then thinking what they still wanted to say to me. it breaks my heart. My damage is irreparable in a way where it's against the laws of thermodynamics for it to be healed to a degree that would give me an acceptable quality of life. The human body is capable of incredible healing but a broken egg cannot be made whole even if you go to a 1000 specialist and you don't need anyone with a doctoral degree to tell you that. Yet my loved ones insist i "cannot know that it's permanent" until i somehow prove it, until a doctor specifically tells me i will suffer this level of torture 'til i die and i don't think that's ever going to happen. Perhaps they can offer rehab for my brain injury and i will learn to perform a few more basic tasks like cook a meal, while still feeling the same mental and physical torture but from the doctors' point of view i will be "better". But it would make no improvement to my quality of life personally. I ask my loved ones then what's the end date for this, when will you believe it's permanent, five years, ten years, fifty? But they can't answer, and i know it's unfair to expect them to. :(

If this was a condition that was going to kill me, it would be a tragedy i didn't have to bear alone but we could share it with my friends and family, where as now it's my tragedy and them being in denial and then their separate tragedy when i'm gone. I think it's only a rare kind of person who could accept their loved ones rational suicide and sadly it's probably unreasonable to hope for, like Bear1234 said.

So i still try to remember to be grateful that i am not actually alone, even though i feel like i am alone in my suffering, and that i have people to help me even though they are not helping me the way i wish they were (helping me to get accepted for VAD instead of more futile attempts to get treatment) and realize things would be much much worse if i didn't have that help. It's hard to appreciate the help when it doesn't really diminish your suffering, hard to be grateful that you are on the 5th circle of hell and not 7th haha... in fact it feels impossible and i am so afraid of driving everyone away because i am angry and ungrateful. How do you all deal with it?

It helps a little to share with people who understand. OP, I experienced consistent improvements with chinese medicine for my ME before my stupid mistake. but i've never been severe and obviously don't know how long you've had it and what all have you tried and the same things don't work for everyone, i definitely don't want to make you feel even more invalidated.. just putting it out there. Let me know if you want any further info on the stuff that helped me. All the best

I relate to so, so much of this but for me, it's the physical pain that is the worst aspect for me....

P.S. I saw that the games thing didn't seem to work. They must have changed things. So sorry about steering you wrong.

 

[Lost Magic]

I'm so sorry you are going through all this shit. Life is not easy, especially when you have disabilities.

 

[suffering_mo]

I relate to all of this. :( I have bad CNS/brain injuries which make life intolerable and torturous. I was suffering from mild/moderate ME before this (made a mistake when i was in a bad crash, panicked and took some stupid drugs the doctors prescribed me which caused the current devastating injuries) and was able to still build a good life around my limitations so i don't have a problem living with disability.. But there are conditions that are so nightmarish that people who haven't experienced anything like that can't or don't want to believe it.

i think especially when it's something doctors can't help you with, a lot of people just can't handle the reality that you could suffer unimaginably, so much that the torture makes you scream every day and there is no hospital to go to, no drug to relieve it, no-one to turn to.. My loved ones still don't really believe it despite seeing me being tortured by my nervous system and hearing me wail and beg for god or something to let me die basically every day for months. I still find myself to be in disbelief despite being the one to experience it 24/7. How can a person be this sick without dying, how can a person be this sick with nowhere to turn to, it just totally pulls the rug under your feet. I feel like i am floating in space alone, so utterly alone, the feeling of basic safety i was fortunate enough to have all my life turned out to be an illusion.. Once something really goes haywire in your system it can just cascade into further and further horror and only now i realize how little western medicine knows, how limited is the scope of illnesses they can cure.

I too really wish i could have hospice and grieve together with my family instead of me grieving alone and them when i'm already gone.. then thinking what they still wanted to say to me. it breaks my heart. My damage is irreparable in a way where it's against the laws of thermodynamics for it to be healed to a degree that would give me an acceptable quality of life. The human body is capable of incredible healing but a broken egg cannot be made whole even if you go to a 1000 specialist and you don't need anyone with a doctoral degree to tell you that. Yet my loved ones insist i "cannot know that it's permanent" until i somehow prove it, until a doctor specifically tells me i will suffer this level of torture 'til i die and i don't think that's ever going to happen. Perhaps they can offer rehab for my brain injury and i will learn to perform a few more basic tasks like cook a meal, while still feeling the same mental and physical torture but from the doctors' point of view i will be "better". But it would make no improvement to my quality of life personally. I ask my loved ones then what's the end date for this, when will you believe it's permanent, five years, ten years, fifty? But they can't answer, and i know it's unfair to expect them to. :(

If this was a condition that was going to kill me, it would be a tragedy i didn't have to bear alone but we could share it with my friends and family, where as now it's my tragedy and them being in denial and then their separate tragedy when i'm gone. I think it's only a rare kind of person who could accept their loved ones rational suicide and sadly it's probably unreasonable to hope for, like Bear1234 said.

So i still try to remember to be grateful that i am not actually alone, even though i feel like i am alone in my suffering, and that i have people to help me even though they are not helping me the way i wish they were (helping me to get accepted for VAD instead of more futile attempts to get treatment) and realize things would be much much worse if i didn't have that help. It's hard to appreciate the help when it doesn't really diminish your suffering, hard to be grateful that you are on the 5th circle of hell and not 7th haha... in fact it feels impossible and i am so afraid of driving everyone away because i am angry and ungrateful. How do you all deal with it?

It helps a little to share with people who understand. OP, I experienced consistent improvements with chinese medicine for my ME before my stupid mistake. but i've never been severe and obviously don't know how long you've had it and what all have you tried and the same things don't work for everyone, i definitely don't want to make you feel even more invalidated.. just putting it out there. Let me know if you want any further info on the stuff that helped me. All the best

I think one has to experience the torturous, rare and and hellish symptoms (that no one ever could have dreamed of) to understand it and how bad it can possibly be. That old age phrase of not understanding until walking a mile in another person's shoes is pretty much spot on. With exception to a few naturally empathetic people, most will see you suffer, but because it's not terminal, they are unable to relate or take it seriously. And then what's almost worse is that in time, your suffering becomes "normal" for them and they are numb to it, plus they get worn down by it all....so any compassion that was there, seems to disappear in time, making the suffering one feel invisible and even more alone. It's hell.

 

[oro]

Suffering_mo_7 Ohh no problem, they changed the rules recently it looks like. I don't feel comfortable posting here much it goes against everything i ever believed in and it really freaks me out to even find myself here on this site... i'll try to maybe look into the recovery section next and post there, hopefully that will work because i really wish we could talk

 

[suffering_mo]

Suffering_mo_7 Ohh no problem, they changed the rules recently it looks like. I don't feel comfortable posting here much it goes against everything i ever believed in and it really freaks me out to even find myself here on this site... i'll try to maybe look into the recovery section next and post there, hopefully that will work because i really wish we could talk

100%!! It's horrifying and I completely empathize. I get the feeling that we are in somewhat very similar positions. If you post a thread in recovery, you and I can go back and forth on posting perhaps... maybe then you can get PMs. You can also post a lot of encouraging things to people. I don't want to reveal too many things about my situation. I did that and had to delete a lot of my messages because I don't want anyone to find things after I am gone.....I feel such guilt and shame already.

 

[Whiston72]

It sounds like they don't have the inner resources to help you.