Still alive. Still a prisoner of this chronically ill body.

[LastLoveLetter]

I don't post here much these days. Not because I'm doing well, but because I simply don't know what to say anymore.

I'm still alive, but not truly living. It is a life wasted, unfulfilled. I might eventually gather the courage and resources to die. I might not, floating through life in a miserable daze until it eventually ends. I don't know any longer. I used to be so determined to live. Then I became determined to die. And now I have no determination or drive at all.

I've tried everything within my grasp and it's soul crushing. There's nothing left to try (unless I win the lottery) and I'm in debt from all the money I've had to borrow for various treatments.

I lost 58 pounds of weight, because I was so fed up with doctors blaming all my medical issues on my size. Losing weight was presented as some sort of magic bullet that would alleviate the chronic pain, fatigue and plethora of other disabling symptoms, while making my physical disabilities more manageable.

It's laughably infuriating. Because that hasn't been the outcome. My diet is healthier than anyone else I've known and I'm the smallest I've been since I was a kid. I'm still housebound, still in pain, still fatigued, still a prisoner of this fucked up body. And still treated as though it's all my fault. No doubt they will resume blaming my PTSD next. I have given up engaging with the corrupt medical conglomerate at this point.

What is there even left to say? I can't go out. Can't make friends. Can't date. Have no family, friends or partner. Can't work. Can't do anything that would make life at least a bit more worthwhile and meaningful. I can just sit at home by myself and get through the day. Over and over, like living through Groundhog Day on repeat with no sign of relief. The same four walls, the same loneliness and the same physical and emotional pain.

All the while, I am perceived as a nuisance, an inconvenience, a drain on society. Again, all due to illnesses and disabilities I didn't choose and cannot control. I don't choose to live like this and have done all I can to improve my circumstances, only to end up in the same position time and time again.

Even if I did somehow manage to make friends or find another partner someday, no-one wants to deal with my myriad of complex care needs, my complex trauma history, my physical disabilities, chronic pain and fatigue or my limited capacity to actually do things and have some semblance of fun. And I don't blame them.

I'm stuck like this and there's no amount of weight loss, medication, therapy or positive self-improvement that can fix this. I've tried it all.

This is as good as it gets. Alone, in pain, traumatised, sick and resented by others until I die.

 

[thankyouforthis]

1. Doctors LOVE blaming you for your own medical issues because it's cheaper, faster, and easier than actually running tests, exploring different options, involving specialists, etc. etc. etc. They just wanna get you out the door as quickly as possible so that they can "treat" the remaining 50+ people in the waiting room (this assumes, of course, that you are poor; rich people with good health insurance probably get real care).
2. Anyone who doesn't want to deal with your care needs doesn't deserve you. When someone loves you enough, those things won't matter to them. If those things do matter, they don't love you enough; don't waste your time with them (or do, if you can hook up without becoming attached!).
3. Bright side? At least you have a space of your own into which to retreat! Individual housing is harder and harder to come by where I live. Pretty much everyone I know lives with at least one other person and many people (fully adult, 30s/40s in terms of age) I know live with 3 or even 4 roommates, because rent is so out of control here.

Anyway, I feel for you!

 

[ropearoundatree]

I'm sorry @LastLoveLetter ! But Thank-You, for the update… as I wasn't sure if you were still around, or not? Anyway, while I may not have it nearly so bad as you—I do feel as though I can relate some what & on some-level, just in terms of being able to better empathize and to understanding how you are feeling, since I have been dealing with some of those same issues my self. Though, here again, probably not on the same scale when it comes to severity of / or as - yours (is). So anyway, I just wanted to wish you well, and that, as hopeless as it all sounds, I do hope that something new can be found or discovered; somehow someway, in order to give or inspire in you some kind of new change, or meaningful outlook on your life. And anyway—if you don't want all that, then that is fine too & I absolutely do respect your wishes in that regard. Was just reading into things in terms of what it is or was you are or were saying & trying my best to interpret them with the degree of accuracy that I was capable of formulating or coming up with on my own at this very given moment in time. Which is most likely, feeble at best! Take care either way, ok ? Peace

 

[FuneralCry]

It really sounds like you've suffered so much, existence is just too cruel, it must be so tiring feeling trapped in that situation. But anyway best wishes

 

[LastLoveLetter]

1. Doctors LOVE blaming you for your own medical issues because it's cheaper, faster, and easier than actually running tests, exploring different options, involving specialists, etc. etc. etc. They just wanna get you out the door as quickly as possible so that they can "treat" the remaining 50+ people in the waiting room (this assumes, of course, that you are poor; rich people with good health insurance probably get real care).
2. Anyone who doesn't want to deal with your care needs doesn't deserve you. When someone loves you enough, those things won't matter to them. If those things do matter, they don't love you enough; don't waste your time with them (or do, if you can hook up without becoming attached!).
3. Bright side? At least you have a space of your own into which to retreat! Individual housing is harder and harder to come by where I live. Pretty much everyone I know lives with at least one other person and many people (fully adult, 30s/40s in terms of age) I know live with 3 or even 4 roommates, because rent is so out of control here.

Anyway, I feel for you!

Thank you. I appreciate where you're coming from regarding housing. It's hard to be grateful for being stuck in the same four walls struggling and in pain, day in and day out with zero connections or support. It's not that I don't acknowledge that I'm fortunate to have that space, I completely agree on that point, especially considering the fact I've been homeless historically. It's just hard to see it as a bright side anymore when I can't even leave and am just stuck in a tiny room 24/7.
I also totally get where you're coming from re. people not deserving me if they can't deal with my conditions but unfortunately I think the reality is more nuanced than that. One of my exes for example became burned out from trying to take care of me and I don't see that as his fault, he just couldn't cope with it. Social care is a mess where I live so disabled people are left to essentially fend for themselves or given very inadequate help, and it's basically left down to partners and families to pitch in. I have no family so that's not an option, and I'm alone so don't have a partner to help now either. And I'm way too mobility impaired to go out and hookup. Even if I could, I've been raped, sexually abused and taken advantage of many times in my life, and need to trust someone deeply to allow them to touch me in that way at all.
Thank you for the thoughts and support. I do appreciate it.

I'm sorry @LastLoveLetter ! But Thank-You, for the update… as I wasn't sure if you were still around, or not? Anyway, while I may not have it nearly so bad as you—I do feel as though I can relate some what & on some-level, just in terms of being able to better empathize and to understanding how you are feeling, since I have been dealing with some of those same issues my self. Though, here again, probably not on the same scale when it comes to severity of / or as - yours (is). So anyway, I just wanted to wish you well, and that, as hopeless as it all sounds, I do hope that something new can be found or discovered; somehow someway, in order to give or inspire in you some kind of new change, or meaningful outlook on your life. And anyway—if you don't want all that, then that is fine too & I absolutely do respect your wishes in that regard. Was just reading into things in terms of what it is or was you are or were saying & trying my best to interpret them with the degree of accuracy that I was capable of formulating or coming up with on my own at this very given moment in time. Which is most likely, feeble at best! Take care either way, ok ? Peace

Thank you, I appreciate your support and kindness. I'm sorry you have had to deal with the same issues. And it's okay, I appreciate you relating and empathising. It's natural to hope that something comes along - like a new treatment being discovered - to make things better. A part of me still hopes for this, however unlikely it may be. And I still hope for the best for others too, including you and your situation. Take care as well.

It really sounds like you've suffered so much, existence is just too cruel, it must be so tiring feeling trapped in that situation. But anyway best wishes

Thank you. Sending best wishes to you as well.

 

[ropearoundatree]

I still can't believe they (the Dr.'s) told you that losing weight would be the solution - or a big part of it - to all of this? Don't get me wrong, I'm sure it couldn't hurt, but to get your hopes up like that: to me... is "over-promising," & 'under-achieving!' So, I'm sorry they did that to you. It was almost, I feel, kind of like false hope, in terms of what it represented for you.

 

[lebrodude]

I remember your post that you had planned to ctb at beachy head last year. That post stuck with me. I did wonder what happened to you, pleased to hear you are still here.

 

[LastLoveLetter]

I still can't believe they (the Dr.'s) told you that losing weight would be the solution - or a big part of it - to all of this? Don't get me wrong, I'm sure it couldn't hurt, but to get your hopes up like that: to me... is "over-promising," & 'under-achieving!' So, I'm sorry they did that to you. It was almost, I feel, kind of like false hope, in terms of what it represented for you.

Thank you. I agree that they grossly misrepresented the benefits of weight loss. To be honest, I've been dealing with doctors in an attempt to alleviate my conditions for well over a decade. Deep down, a part of me knew that my increasing weight was a convenient scapegoat (in much the same way as my PTSD). But I undertook a strict eating regiment and lost the weight because I figured I had nothing else to lose by trying and that if it could help even a bit, it could be worthwhile.

It'd be misleading to claim that the benefits are nonexistent, but they are not as significant as I had hoped. My mobility, physical disabilities and chronic illnesses have just continued to deteriorate no matter what I do. It is seemingly an unstoppable trajectory. It would undoubtedly be even worse if I remained the same weight or became any heavier. But I'm ultimately still housebound, still ill, merely a slimmer version of the same sick person. Retrospectively, a little part of me hoped for a miracle and unsurprisingly, it didn't happen.

I remember your post that you had planned to ctb at beachy head last year. That post stuck with me. I did wonder what happened to you, pleased to hear you are still here.

Thank you, I really appreciate that. I am truly touched that you remember me.

 

[ropearoundatree]

Thank you. I agree that they grossly misrepresented the benefits of weight loss. To be honest, I've been dealing with doctors in an attempt to alleviate my conditions for well over a decade. Deep down, a part of me knew that my increasing weight was a convenient scapegoat (in much the same way as my PTSD). But I undertook a strict eating regiment and lost the weight because I figured I had nothing else to lose by trying and that if it could help even a bit, it could be worthwhile.

It'd be misleading to claim that the benefits are nonexistent, but they are not as significant as I had hoped. My mobility, physical disabilities and chronic illnesses have just continued to deteriorate no matter what I do. It is seemingly an unstoppable trajectory. It would undoubtedly be even worse if I remained the same weight or became any heavier. But I'm ultimately still housebound, still ill, merely a slimmer version of the same sick person. Retrospectively, a little part of me hoped for a miracle and unsurprisingly, it didn't happen.



Thank you, I really appreciate that. I am truly touched that you remember me.

I can relate to the length of time in which you've spent dealing with either incompetent dr.'s, or dr.'s who are doing an incompetent job with your case. I, myself, here again, no where nearly as bad off as you, or acute, but have been dealing w/local specialists who were willing to treat me for many years of the past decade or so, since diagnosis. Now, keep in mind, for whatever reason, I've had a new specialist every other year if not sooner. The last two of which, also the youngest of the bunch, have somehow made it up in their minds that this is (the root cause: for which no one has yet come up with a solution/or a reason) is all my fault, or my doing. And therefore: they're not going to be responsible for treating it. Part of the problem is, the specialty which treats it, is not the same specialty which is in charge of investigating the origination of the symptoms. Therefore, things can get lost in communication, and blame can be assessed or attributed, case from one department, to the next, and so on. So what has happened, is I have had numerous "second opinions," & this would actually include more like a team of specialists, in that given field, generally, pandemic times notwithstanding. And this was at a much bigger & more famous hospital nationally. Even they, can not figure out, what is going on, in terms of the cause for all of this. And so, they simply recommend, for me to begin or resume rather, regular maintenance of, my condition and my illness, through the same means by which I've been receiving them locally, since forever now (much of the past decade, up until the last couple of years). Even with their help, aid, and assistance or encouragement towards my local docs (well primarily one as of now, and then this would also probably most likely also include the previous one); including exact care instructions as to how they would manage my case, and as well as bottom line basement levels, with which to keep mine above at all times. Meaning or translation: stop being so careless, with regards negligent scheduling of my labs, and et cetera. So/such that they fall, sometimes, catastrophically, such that were I to present to any ER they would admit me. Which would, of course, do no good beyond merely temporarily stabilization of my said levels. So I can relate, as the previous two years, much of those were spent house bound and living alone as well. Though over the course of the past 6 months, maybe. I've kind of just said, F-it; & gone out & forced my self to do the bare minimum, with respect to errands, basically & essentially, only. This generally or often times involves, not even having to get out of my car, if you know what I'm saying or meaning? ;D Sadly, I'm thinking or guessing you precisely do! This by the way, I'm thinking, my trouble began, once they began digging around in my extensive mental health history, of which as far as that goes which is on record, is all mostly or primarily, anyway, pretty significantly far in the rear view mirror (the treatments, and medications, anyway). So I believe, that that is where this shift in mindset, or transition first occurred. Someone, most likely the second to the last specialist, was briefed on this extensive m. i. history, and said, "woah? no wonder! This isn't all on us, it's rather, his doing--or responsibility." I mean, maybe not, but at least if you'd told me that, I could buy it because it makes sense from a human passing of judgement & stereotype against, point of view. If they'd have just stuck to the physiological facts, I'm convinced - quite, in fact - that every thing would still be fine (in terms of the maintenance, or better of / care, with regards my health). Anyway, that is what I meant, in part, by what I'd said earlier, in terms of being able to relate. By the time I type out something like this, although it doesn't take all that long, in terms of time, necessarily - it does take quite a lot out of me - in terms of exhaustion, or just being taxing. :) Hope you've explored every avenue for (preferably better) second-opinions. And I still wish you all the best, regardless of how hopeless it all seems now!

 

[CTB Dream]

V sry hpn all. Know how feel no wrd no any no posbl do no posbl get. Know how no motiv lose all all simil anhedo ya v awfl rly sry hpn all trap sffr pain no escp, crurl wrld full sffria frc pain alws need money etc even prsn strgl nobod care,
this doc medic etc all awfl tell size prblm this all lie v awfl no see many prblm lif no see trama etc, v sry lone no hav any frnd etc
v undrstd u big hug

 

[LastLoveLetter]

I can relate to the length of time in which you've spent dealing with either incompetent dr.'s, or dr.'s who are doing an incompetent job with your case. I, myself, here again, no where nearly as bad off as you, or acute, but have been dealing w/local specialists who were willing to treat me for many years of the past decade or so, since diagnosis. Now, keep in mind, for whatever reason, I've had a new specialist every other year if not sooner. The last two of which, also the youngest of the bunch, have somehow made it up in their minds that this is (the root cause: for which no one has yet come up with a solution/or a reason) is all my fault, or my doing. And therefore: they're not going to be responsible for treating it. Part of the problem is, the specialty which treats it, is not the same specialty which is in charge of investigating the origination of the symptoms. Therefore, things can get lost in communication, and blame can be assessed or attributed, case from one department, to the next, and so on. So what has happened, is I have had numerous "second opinions," & this would actually include more like a team of specialists, in that given field, generally, pandemic times notwithstanding. And this was at a much bigger & more famous hospital nationally. Even they, can not figure out, what is going on, in terms of the cause for all of this. And so, they simply recommend, for me to begin or resume rather, regular maintenance of, my condition and my illness, through the same means by which I've been receiving them locally, since forever now (much of the past decade, up until the last couple of years). Even with their help, aid, and assistance or encouragement towards my local docs (well primarily one as of now, and then this would also probably most likely also include the previous one); including exact care instructions as to how they would manage my case, and as well as bottom line basement levels, with which to keep mine above at all times. Meaning or translation: stop being so careless, with regards negligent scheduling of my labs, and et cetera. So/such that they fall, sometimes, catastrophically, such that were I to present to any ER they would admit me. Which would, of course, do no good beyond merely temporarily stabilization of my said levels. So I can relate, as the previous two years, much of those were spent house bound and living alone as well. Though over the course of the past 6 months, maybe. I've kind of just said, F-it; & gone out & forced my self to do the bare minimum, with respect to errands, basically & essentially, only. This generally or often times involves, not even having to get out of my car, if you know what I'm saying or meaning? ;D Sadly, I'm thinking or guessing you precisely do! This by the way, I'm thinking, my trouble began, once they began digging around in my extensive mental health history, of which as far as that goes which is on record, is all mostly or primarily, anyway, pretty significantly far in the rear view mirror (the treatments, and medications, anyway). So I believe, that that is where this shift in mindset, or transition first occurred. Someone, most likely the second to the last specialist, was briefed on this extensive m. i. history, and said, "woah? no wonder! This isn't all on us, it's rather, his doing--or responsibility." I mean, maybe not, but at least if you'd told me that, I could buy it because it makes sense from a human passing of judgement & stereotype against, point of view. If they'd have just stuck to the physiological facts, I'm convinced - quite, in fact - that every thing would still be fine (in terms of the maintenance, or better of / care, with regards my health). Anyway, that is what I meant, in part, by what I'd said earlier, in terms of being able to relate. By the time I type out something like this, although it doesn't take all that long, in terms of time, necessarily - it does take quite a lot out of me - in terms of exhaustion, or just being taxing. :) Hope you've explored every avenue for (preferably better) second-opinions. And I still wish you all the best, regardless of how hopeless it all seems now!

I am sorry you have dealt with incompetent doctors and a poor handling of your case as well. It seems to be a recurring theme for those of us with chronic conditions, especially illnesses that are difficult to diagnose and little understood. Instead of admitting that the present knowledge, research and resources are sorely lacking, they find a way to place blame upon the patient.

I can also relate to encountering medical personnel who were willing to help on some level initially (though I've never received adequate treatment or intervention personally), but inevitably somewhere along the way, someone concluded that we are somehow responsible for our ailments and the moment that is written on our records, the process of accessing treatment becomes tainted. It goes from already very difficult, to practically impossible. Because every new "specialist" that comes along will be able to see that - at some point - we have been labelled a hypochondriac or malingerer or mentally ill so therefore our symptoms must be psychosomatic.

And once those labels have been assigned to us, they are like tattoos or a permanent stain that we can never erase. Those labels become an increasingly convenient scapegoat for healthcare "professionals" who don't know how to help us and frankly, don't particularly care. And I understand completely how once a care team has decided your illnesses are all "in your head," the quality of treatment and even basic decency rapidly deteriorates. I've received so much resentment and contempt over the years, as though I'm merely an unwelcome pest or foul stench which lingers for too long, that I just don't try anymore. The healthcare system is an impenetrable wall, only accessible to the influential and wealthy.

I'm sorry you have had to endure that, and been passed from specialist to specialist. I truly empathise with how stressful it is to be continually passed from pillar to post - trapped in the merry-go-round of endless referrals and second opinions and departments arguing about who's responsible for your care, only to end up essentially empty-handed. It's particularly saddening to read that you did at one point receive better maintenance and care, and can imagine how devastating it must be to have that taken away.

It's also understandable to decide "Screw it" and just try to go out and do what you can anyway. Before my most recent deterioration, I sometimes tried to do the same, though like you, I was very limited. And doing so resulted in severe crashes, where I'd be bedridden for days or weeks at a time. It's often hard for people to imagine I think, that doing something considered the bare minimum for the majority is enough to wipe us out entirely.

I understand that writing out paragraphs of information can take its toll. Back when I was in a bit of a better place, I used to be able to write poems, articles and essays with little effort. What once took minutes now requires hours, and I can't write the way I once did.
So, I get it. Despite not necessarily being a physically demanding task, it can take a lot of mental energy and focus. I appreciate you taking the time to write this and share more of your experiences. Thank you. I truly wish you the best as well. It feels like a helpless wish, wanting things to get better for you and many others here, knowing I can't change the circumstances that brought you here. But I hope for the best possible outcome for you regardless.

V sry hpn all. Know how feel no wrd no any no posbl do no posbl get. Know how no motiv lose all all simil anhedo ya v awfl rly sry hpn all trap sffr pain no escp, crurl wrld full sffria frc pain alws need money etc even prsn strgl nobod care,
this doc medic etc all awfl tell size prblm this all lie v awfl no see many prblm lif no see trama etc, v sry lone no hav any frnd etc
v undrstd u big hug

Thank you. On the rare occasion I post here, you always spare a kind word for me and I notice and always appreciate that.

You are so thoughtful and caring towards members here, and you don't deserve the suffering you have endured and continue to experience. I'm sorry you also suffer without the care and support you deserve to receive. Sending you a big hug as well.

 

[Meteora]

Because I m stupid, I guess.

 

[Painfu.Ll.suffering]

I am sorry you have dealt with incompetent doctors and a poor handling of your case as well. It seems to be a recurring theme for those of us with chronic conditions, especially illnesses that are difficult to diagnose and little understood. Instead of admitting that the present knowledge, research and resources are sorely lacking, they find a way to place blame upon the patient.

I can also relate to encountering medical personnel who were willing to help on some level initially (though I've never received adequate treatment or intervention personally), but inevitably somewhere along the way, someone concluded that we are somehow responsible for our ailments and the moment that is written on our records, the process of accessing treatment becomes tainted. It goes from already very difficult, to practically impossible. Because every new "specialist" that comes along will be able to see that - at some point - we have been labelled a hypochondriac or malingerer or mentally ill so therefore our symptoms must be psychosomatic.

And once those labels have been assigned to us, they are like tattoos or a permanent stain that we can never erase. Those labels become an increasingly convenient scapegoat for healthcare "professionals" who don't know how to help us and frankly, don't particularly care. And I understand completely how once a care team has decided your illnesses are all "in your head," the quality of treatment and even basic decency rapidly deteriorates. I've received so much resentment and contempt over the years, as though I'm merely an unwelcome pest or foul stench which lingers for too long, that I just don't try anymore. The healthcare system is an impenetrable wall, only accessible to the influential and wealthy.

I'm sorry you have had to endure that, and been passed from specialist to specialist. I truly empathise with how stressful it is to be continually passed from pillar to post - trapped in the merry-go-round of endless referrals and second opinions and departments arguing about who's responsible for your care, only to end up essentially empty-handed. It's particularly saddening to read that you did at one point receive better maintenance and care, and can imagine how devastating it must be to have that taken away.

It's also understandable to decide "Screw it" and just try to go out and do what you can anyway. Before my most recent deterioration, I sometimes tried to do the same, though like you, I was very limited. And doing so resulted in severe crashes, where I'd be bedridden for days or weeks at a time. It's often hard for people to imagine I think, that doing something considered the bare minimum for the majority is enough to wipe us out entirely.

I understand that writing out paragraphs of information can take its toll. Back when I was in a bit of a better place, I used to be able to write poems, articles and essays with little effort. What once took minutes now requires hours, and I can't write the way I once did.
So, I get it. Despite not necessarily being a physically demanding task, it can take a lot of mental energy and focus. I appreciate you taking the time to write this and share more of your experiences. Thank you. I truly wish you the best as well. It feels like a helpless wish, wanting things to get better for you and many others here, knowing I can't change the circumstances that brought you here. But I hope for the best possible outcome for you regardless.



Thank you. On the rare occasion I post here, you always spare a kind word for me and I notice and always appreciate that.

You are so thoughtful and caring towards members here, and you don't deserve the suffering you have endured and continue to experience. I'm sorry you also suffer without the care and support you deserve to receive. Sending you a big hug as well.

Thanks for your post! I never felt so understood in my position...

Before my accident 2 years ago, I already had to struggle with chronic back pain because of a 10 year old spine surgery... I lived a healthy life and tried everything in my hands.... When i looked for solutions for my ailments it was either take meds for pain, diagnostic measures to exclude other stuff and in the end ut can't be that bad. After my accident i at least had images to see that i do not imagine everything in my head (but little doctors have seen them). With the accident they again did a big mistake leading to me being not able to do anything like you described. Although i have a mother and a father they were not able to help when i needed it or now. I am home alone rotting... And of course the psyche is destroyed at some point of this kind of life... Then i was declined at hospitals for. "u first need to trest your psyche", "you first have to manage the pain"... The doctors that knew me left . And i don't want to continue to go to doctors for them to slowly realize that there is no solution. But they wouldn't help with dying aid either. I experienced everything and the development, i know that there is not the right help anymore for me....
This is just horrible, and its getting worse not better...
The worst thing, the medical health system is responsible, but they won't help wif you say you don't trust anymore and want an end.

How long are we supposed to live like this :(

I can't write as easily too. Everything that seemed easy is not working anymore... I have no control and after these backlashes of trying to go outside or do something positive for your psyche I don't try anymore...