Fear
 

Hi again. I know this sounds awful, and don't wan't to be a downer, but is anyone afraid that their rsd will end up killing them. I asked my pm dr if it could cause death and they said that they don't think it does directly, but knew of two patients they had who had rsd who ended up having heart problems from it. They didn't tell me if that killed them, and I was too afraid to ask any more questions, but got the feeling it contributed to their death somehow.
I worry that it might go internal and attack my heart. I get pain in my heart sometimes, but they think it's anxiety, but I get different answer from different doctors which adds to my anxiety. I don't mean to upset anyone by asking what they think, but hope maybe you may have some positive news to tell me about this subject. Thanks.:)

Oh yeah, when I was first diagnosed I read something (don't rmemeber what) and I overreacted and thought it would eventually kill me.
Since then, if I understand correctly RSD/CRPS [I]can[I]open the door to other illness/disease because I guess it somehow compromises our immune system?
When I went for my 1st colonoscopy a few weeks ago I was so worried if during the proceedure I would have to have any polup(s) cut out it would spread the CRPS. That Dr. told me that RSD/CRPS would not kill me directly even if at times I wished it would but that colon cancer would. I guess he thought he was funny. Thankfully no pollups found and no cutting.
I think I worry more now about it spreading and reducing the Quality of life even more.

I agree with AZ-Di, it's more about the quality of life issue. CRPS cannot (?) kill you directly, and allegedly does not impact your lifespan - BUT (oh the size of that but...) it can affect other parts of your body to the extent that they develop other issues that might lead to an earlier death.

While we're talking about this thorny and cheerful topic :rolleyes: there is the tag of CRPS being 'the suicide disease', simply because many sufferers are believed to eventually take their own life because they cannot deal with the condition any more and medical 'care' fails them completely. It doesn't show up on their death certificates as a factor.

To be honest it annoys me a lot. There would be a lot more knowledge and care taken of patients if when CRPS is a factor, it were actually named on the death certificate for sufferers. As far as I know, only a handful of cases have ever named CRPS as the cause of death. That just doesn't seem reasonable for a condition as cruel, complex and debilitating as this. I suspect doctors aren't willing to put it down because - same old story - they just don't understand it. Much easier to put something more common.

Yes, I'm scared too. I bet we all are in a small secret part of ourselves. I have had the heart spasms and pain too, it completely freaks you out. A GP at my surgery brushed it off as me over-reacting (the same one who told me that she advises all patients, including those with a known cardiac condition, to wait for at least 15 mins into chest pain before panicking and calling an ambulance :eek:), but the ambulance men and my pain doc (who were appalled at the GP's advice :rolleyes:) thought it was far more likely to be the CRPS affecting my heart tissue. I mean FFS, that is never going to be a thing you can just shrug your shoulders about!

Personally, if I got to the point where I had multiple CRPS locations, terrible untreatable pain, and too many other health problems to be able to live my life with any enjoyment at all, and was a complete burden to my family (however nice they're were about it), I think I'd probably seek a way out. And I'd hope people would try to understand. I'm seeing a private therapist at the moment, and it came up in conversation last week - she had excruciating pain from wrist surgery for two years and had her whole life changed, so she understands what long-term pain can do to you. Talking about something so scary and taboo in a matter-of-fact way is incredibly healing. She didn't say I was wrong, or bad or crazy to have thought about it when things were really bad (about a year into it), she said it was human and understandable, and who wouldn't want to end their pain if it got too much to bear... Somehow talking about it made it seem even further off, and less likely.

It's a terrible, painful subject. But it's real too, and sometimes I think talking about this stuff and knowing that those fears are shared by others, helps you to deal with it all better. You bunch of nutters on here do more for my sanity, strength of will and ability to cope than any counsellor I've seen so far!

I'm scared it will kill me, but to be honest I'm more scared sometimes that it won't. That the pain will just get worse and worse and worse until I am nothing but suffering, and unable to deal with it. That terrifies me more than death I think.

A brave topic Renee. Hope my comments haven't offended or upset anyone.

Bram :grouphug:

I believe all the meds we take will destroy us sooner the crps will

Thanks everyone. I appeciate all of your opinions and feel better that I'm not the only one with this fear, though I wish none of us had this to fear in the first place. I am afraid this will kill me directly or indirectly whether by attacking my heart, or going internal, or by all the meds I take.
And I also sometimes worry more about living with constant long term pain too. Sometimes I think death would be more merciful than living like that. And though I am a religious person, and God forgive me, but I sometimes think on my really bad pain days, that not living anymore would be more better than going on with this pain that may get to the point that even the meds won't work. Then what? If it weren't for the pain I would cause my family, I may think about it if it got really bad. But I couldn't do that to my son and husband. And I don't want to leave them. It's just that sometimes the pain is so horrible and relentless and the meds make me want to puke all the time, that I just want the pain to go away. I don't mean to offend anyone either, and don't plan on doing anything like that, I just needed to talk. It helps me more to talk to you guys than my own therapists sometimes. I told my therapist once that I thought this rsd was going to kill me someday and he said nothing. It seems to me that even my other drs try to avoid the topic, probably because they just don't know enough about it, but I can see it in their eyes that I'm in trouble. Anyway, sorry again to sound like a downer, I just needed to ask and am so grateful for all of your support and comments. I know you all understand better than any dr could because you're going through it too. Thanks again and hope you have as pain free as possible day today.

Bram is right, this is a brave topic Renee and one I am sure we have all thought of. After having this for so long, I have gotten past the fear of it killing me. I am more concerned about suffering more from it...like more internally. I have so much pain (like many of us do) in all four extremities, face and trunk, and there is no control over it. Drs can't control or treat it because I can't take much of anything. I have a headache every single day, that I am used to. I also have migraines often, allergic to all migraine meds I have tried. I do not worry about medication destroying me because I cannot tolerate anything :rolleyes:

What also concerns me is the other conditions that I am developing as a result of RSD/CRPS. Just recently diagnosed with interstitial cystitis and pelvic floor dysfunction (have to start PT for the PFD). My quality of life sucks and what gets me through every day is my husband, so thankful for him.

Nanc
:hug:

Thanks Nanc and thanks Bram. And thanks to everyone. I'm sorry you're all suffering so much.I worry about the suffering internal spread more than it killing me too I think. The thought of having to live with horrible pain is terrifying. I take alot of meds that help keep pain to a minium, but they make me like a zombie and have harsh side affects on my body and mind. And I worry that someday they won't work anymore and will need to have them incresase.
I don't think my stomach can tolerate any more meds. So I don't knwo what I would do then. I hope I don't get to that point. and the meds I worry waht the meds are doing to my body too. I've gotten other things from my weakend immune system from rsd. i.e. fibromyalgia, tooth abcesses, I don't heal quicky and get sick alot even the common cold takes me forever to get over and know I have oteopenia, in my right hip and it hurts alot. sometimes especailly in the mornign I can't move my right leg because my hip hurts so much. I have to lift my leg up to get out of bed. And my feet are swelling and other hand andmy left foot is getting shiny now. It's becoming harder to walk with my legs and feet. And it's hard tohold a cane because my hands don't grip well and hurt too. anyway, i have to check into this interstitial cystisis. maybe that' s why my stomach hurts so much. Well, I hoep you feel betterwith you health problems Nanc and Bram and everyone else suffering from this disease.And thank for being so understanding about my question. I was afraid to ask, and apperciate your kindines and not getting upset with me for asking. Take care.

Exactly the opposite I wish it would, the thought of spending another 20 - 30 years living with this and the knowledge that the slightest knock/traune could cause it to spread and spread until it's full body is a lot more frightening than the relief of death

I hate to say it, but I think I agree. I would rather not live the next twenty to thirty years with this pain that could get worse or spread until it's full body. I think that's alot more scary than death too. Though of course I would miss my son and husband terribly. I guess only time will tell.

Hope my comments in here about euthanasia don't cause any offence or upset. I have deliberately omitted any reference to religious belief because I don't want to upset anyone.
...

I think when you get down to it, it's all about choice. I know euthanasia is a very controversial topic, and as soon as its mentioned all the pro-life folk start banging their drums and claiming its like some sort of ethnic cleansing, but of the sick and the old...but surely it is actually a choice for a person themselves to make? I would never advocate suicide as a solution for the mentally ill or lonely people, but surely if someone truly does not want to live, for a sound medical reason, and (very importantly) there is no realistic hope of improvement, then why should society and the medical community force them to live on? That is of itself an enormous cruelty. The court cases in recent years, where those with terrible illness have begged to be allowed to die and been refused just chilled me to the bone. Where is the compassion and humanity in that?

I saw a documentary last year about geriatric care that frightened me witless as well, and made me wonder where the sanity is in our health system. Wards filled with the very old, too ill to be at home, many with no family left, no visitors, and no hope. So many begged to be allowed to die. Nursing care was so variable, and while some were looked after well, other starved because nurses didn't have time to feed them, or lay in filth. It was something from a nightmare, in our own healthcare system. I'm not for one second advocating a doctor with a syringe going around clearing geriatric wards, but again I think common sense and compassion should be used, and if someone begs for death, and really has so little worth living for (in their own eyes and those of a normal human being), and if life itself just causes them suffering now, then why is it so unthinkable?

I have experience of a loved one dying in hospital at the end of their life. I was there at the end, held their hand, and felt overwhelming relief that it was all over for them. But I cursed the healthcare system that would watch that happen inevitably over a long period, rather than assist in a clean and dignified end to suffering.

As I said in my previous post, I am often more scared of a future in pain that cannot be treated than I am of death itself. And as a human being, I do truly believe that someone with a long-term incurable condition causing constant terrible pain and disability should, when and if they reach that point, have the right to ask for release from a life no longer worthy of the name. And that death should be able to be in their own country, with medical care and supervision, with loved ones holding your hand, and be painless and gentle. That would be the greatest gift any person could give me at that point.

I don't believe it is an easy way out at all, and I don't think there is a danger of it being used carelessly. We all know how precious life is, and I think that to even get to that point would be a terribly long, considered and desperate journey. I always believed in euthanasia if handled with compassion and care, and since having CRPS I have become even more convinced. I truly believe that the Hippocratic oath has been twisted by modern medicine over the years: 'First do no harm'. Well, define harm for me then. Is deliberately condemning someone to torture not 'harm'? Is forcing someone to seek their own, inevitably more untidy, death not 'harm'? If some desperate soul asks for something so final, why cannot two or more independent doctors look at their case and make the decision that actually in their case it would be a kindness.... I think the Hippocratic oath is about doctors who are afraid to be the first to stick their head above the parapet and say that they agree with their patient, and would be willing to actually publicly take responsibility for the procedure. I think we all suspect that there are a few who do help a patient to that final journey, but surely they could be regulated and licensed to do so, with due cause and consideration?

I love my life, and for me the scales are firmly on the side of living, but I can see a time one day, hopefully a long way off, where the pain will weight things the other way. I live in hope now that the law will be changed and someone in authority will see past their own fears and prejudices and be willing to stand up for all those who actually have a darn good reason for asking for the unthinkable. I hope to goodness it happens in time for me.

As I said before, I hope I haven't upset anyone or caused offence. This is just something I passionately believe in, and this thread topic has given me somewhere to say it (thanks Renee).

Hugs to everyone. Goodness knows we need them!

Bram.

Bram, I for one am not offended by what you said. I don't want to bring my religious beliefs into this either so as not offend anyone, but even though I am religious, it doesn't mean I agree with all of their beliefs either. I actually don't. I do believe there is some higher power because we had to come from somewhere. Even in Darwin's theory, someone had to make the monkeys. I think sometimes the rules of the Church are very black and white and life has an awful lot of gray areas in it which makes it hard to abide by all of those rules. I am no Saint and have tried to be a good person, but can't say I have abided by all of those rules. I don't think it's fair to keep someone alive if they are suffering from an incurable disease and want to end the pain. We put animals to sleep when they are suffering from incurable diseases, so why is it so wrong to do the same with people. I have a living will which states that I do not want any extra measures taken to keep me alive when I'm at the end of my life and suffering.
I have a family member that is near the end of her life and she had alzheimers and is like a vegetable. We unfortunately had to put her in a nursing home for her own protection, and they take good care of her. We visit her every week. She is very religious, and she doesn't want extra measures taken either to keep her alive, like feeding tubes, when she can't remember how to eat anymore. My husbands father had alzheimers and when he got to that point he didn't want extra measures taken either and he was also very religious. They both had living wills too. I feel the same way.
And I don't want to offend pro-lifers. I think life is precious, but I believe in pro-choice. Sorry if that offends anyone again, but like I said before, life is not always black and white. I think sparing someone pain from an incurable disease when they are at nearing the end of their life is one of those examples. Anyway, thanks for your opinions. I hope none of us ever get to that point. That is my biggest fear. I want to live, but hope I never get to the point where I'm in so much pain and they can't do anything to stop it. That's where my faith helps me, because it gives me hope that this won't happen. I hope there is a higher power that is merciful enough to keep this from happening. Hope is all I have right now to cling to, since this disease is so rare and incurable and so little is known about it.

Right now it's quality of life that is a big deal. I fear all the time how bad I might get, and that I need to fix something in my life so that I can keep going another 40 years. Planning is hard to do with all of this, and I just want to get to a point where my body will allow me to plan without fear.

I think there is nothing wrong with wanting to die with dignity. I don't want to waste away and end up as a veggie. The only thing that has kept me going so far is my DD.

Hope for tomorrow
 

This is a powerful and such a delicate topic.. I thought I'd share my views.

Personally I think each one of us have can impact the lives of others even when we are hurting, lose our memory or a myriad of other things that happen in life. I also believe that given the chance even in the very last moments we can impart amazing things to someone else's life. Through the tides of life we often find strength when we didn't think we had it, we find courage when it seems we have none left, we find joy in the simple things and a bring a smile to someone else's heart often not even knowing we did. Cut short at the hands of man - all that is taken away... and who know's what part we might have played in that unknown had we stuck around a bit longer. I choose to live with hope- for we never know what tomorrow may bring; good, bad or indifferent there is (in my opinion) hope for tomorrow.

I personally don't think that assisted death is healthy for mankind. Though it is easy to try to put it into a box it still shows weakness and lack of concern for life. I am not talking about extreme measures when life is not possible without human intervention, I am referring only to assisted suicide when life is still possible. I have been witness to children fight pain/cancer and other things that seem impossible to bear but they fought to live stoically and through there fight there lives impacted so many in such positive ways I just cannot fathom the idea of giving up. Many years ago I was also volunteering much of my time at an assisted living center and I can remember at least 4 individuals who impacted my life in an amazing way, even though they weren't making much sense in that moment. The person contemplating suicide is in pain.. that they at that moment don't think will ever go away; should we encourage them to live or show them that when you are in pain you can choose to end it? I say we ought to lead by example and fight to get over the mountain. There are countless stories where people have suffered incredible tragedies or physical disabilities only to go on and lead amazing and powerful lives that touched many. I have to believe that even in my own daily pain/struggle that somewhere along the line my life will touch the heart of someone else and hopefully remind them that they too have strength to survive when darkness falls upon them. I also hope and pray that I will feel joy, love and peace even if it is brief moments in time until I take my last breath.

I believe in LIFE, and I believe in God!! Although this affliction was allowed to affect my life, I believe I will also find the strength through his mercy to endure whatever comes my way and that good will continue to come of it. I am counting my blessings.. and finding ways to focus on the positives (there are some) with each new day. Not saying it is easy or that I am always strong, but I know I have more strength to endure today than I ever thought possible.

LOL. There's me not mentioning God or religion because I was trying not to get into the whole thorny topic! But as both Renee and zook have firmly brought God in...

I feel the need to ask PLEASE that this doesn't get personal or nasty. By responding to a comment I am in no way attacking someone or passing a judgement on their character. I'm just responding.

I didn't raise the subject of God in my post because I don't believe in one, and i rely on my own strength and the support and care of others to get me through the hard times in life. I've found that more helpful than in my earlier life when i couldn't understand why the conversation with god was so one-sided! I didn't say in my first post that I find it very sad that for years, religion made the whole issue of suicide, already a tragic event, into a crime so heinous that families would never mention the victim again or refer to them in any way. In the army deserters were shot because people believed that fear itself was a crime, and that it was cowardly to give in to it. Now we know about post-traumatic stress disorder, and understand the sheer terror and horror that those poor men endured. Maybe some people are just not as strong as others. Should everyone be judged by the abilities of the strongest and those who can tolerate the most suffering?

Of course life is precious, that's the whole reason we fight on against this thing, and the reason that parents care for their children, and a million other examples. I must say that I honestly don't see how making the unbelievably hard decision to end your own life must be seen as weakness or lack of concern for life - although I would never argue that someone in pain has nothing left to contribute to others, I also think that it surely is up to them to decide whether they want to be there setting that example of stoicism and perseverance. Of course there are many people who suffer from tragedy, illness and disease, and who contribute hugely to life in many ways. They are amazing people, I greatly admire them, and I'm sure their contributions give them strength to continue. But at the moment there is no gentle way out for anyone, and even the Dignitas service is long, drawn-out, heart-breaking and distant. I wonder how many of those living 'in extremis' would consider euthanasia if there were a kinder option that they could legally follow - one where they could say goodbye and have the comfort of family if they wanted it, without the guilt of leaving those families with that stigma of suicide to face, without having to find a way by themselves with no help, and without the fear of leaving their families under investigation by the police.

Don't get me wrong please, I'm not talking about children or young people, or anyone who still has a chance of improvement or recovery or even a cure. I'm only thinking of those who have already spent years suffering, and for whom there is no prospect of anything better. Those who are worn down by years of constant pain and suffering, and who cannot bear to spend another day in a body that they can no longer bear. Those who by being denied death, are condemned to daily torture. A compassionate and loving god would surely understand the desire to end such suffering?

Ah, it is thorny and complex, which of course is why there is no consensus of opinion, and so much debate. We are all entitled to our views ;)

Bram.

I am putting my text back in. It went something like this...I don't think it's fair to keep someone alive if they are a vegetable and they don't want to live like that. It should be their choice as to what to do with their lives. I don't think it's a sign of weakness or lack of respect for life, but rather a sign of strength and respect for wanting to die with dignity. And even if there is some joy that person can bring to others by still being around, I don't think it's fair to that person to have to suffer to do that. And I can't help but wonder if healthcare facilities keep people alive after their quality of life is living like a vegetable, just to make money off of them. They charge a huge amount to take care of people like this. I'm not trying to offend anyone or say it's true, but I do wonder if in some places, keeping people alive after their quality of life is gone, is more like a business than something that is done out of kindness. It's just my opinion.

And I'm putting my message back in here too so you all know what Bram was commenting on. I said that I don't believe it's fair to put a child through a painful existence either. If there is a chance of them for example being born with lets say cystic fibrosis, I would not want to bring it into this world. I think life is hard enough without having to come into this world to live in constant pain only to possible die at an early age anyway. I again don't mean to offend anyone, this is just my opinion. And children that are suffering from terminal illnesses like cancer should not have to live if they are in so much pain that their quality of life is nill. I don't think that's fair to the child. That is to say only if that child and their parents feel the same way of course.
I think it's a shame that people are afraid to bring up these topics for fear of being attacked. People should be able to to decide for themselves what to do with their lives and their bodies. Maybe if that were the case, they wouldn't commit suicide on their own and have someone help them die with dignity. And maybe too it that were the case, babies wouldn't be born with horribly painful diseases only to die at an early age anyway. And last but not least, maybe unborn children would not be born and thrown into dumpsters, because their mothers were too ashamed to have terminated their pregnancy early on their pregnancy, because of the way they would be criticized if they did. I'm not saying that I'm trying to promote the ending of life but rather I'm trying to promote the ending of pain and misery. I don't think it's fair for any of us to judge each other, but rather I wish we would help each other out more so that we could make all of our lives a little easier to deal with.

I do want to say that I don't believe that weakness and lack of respect for life are related to wanting to die with dignity. I feel that everyone should have their own choice on what to do with their lives and bodies. This is just my opinion.

Another brave topic Renee....the pro-life thing is a minefield, and I don't think anyone wins in the whole sad business. Except perhaps the private clinics - you are right I think in your cynicism for their priorities at times.

I've always found the right of the unborn child debate very uncomfortable. What is really better for the child? To be terminated before it has been born, or to be another unwanted, possibly abused or neglected child, born into a difficult situation and not really wanted, who has an unhappy childhood and difficult adult life? Again, I think that if the mother wants a termination, after counselling and consideration, then that probably means its better in the end for that unborn child. Of course some women must regret their decision, but I'm betting far more are relieved. Abortion is a tragic thing, but solving it should come down to better birth control and sexual habits, rather than forcing women (and their children) to suffer the results of careless sex, abuse or unwantedly high fertility.

I think both arguments come down to the same thing. What exactly is life? Is it just the action of surviving and breathing in and out, or is it more than that? Is it quality of life?

As with all of this thread, just my opinion and hopefully not upsetting to anyone. Apologies if any of my thoughts offend. This is a very interesting and thought-provoking thread, and I'm glad we can have these discussions in a responsible adult way.

Bram.

I don't think any woman wants to wake up one day to say gee, I want to get pregnant by accident and then terminate my pregnancy. It's not a position anyone wants to be in. And their are consequences either way with one's decision. If they keep the baby and can't take care of it, it may suffer a long poverty stricken life or go into the hands of a stranger who adopts it and possible abuses it. If one decides to terminate, they have to live everyday knowing that they ended the life their unborn child. It's not something that any woman wants to have to live with, but sometimes they think that's termination is the lesser of two evils. I tend to agree. Like I said before life is not always black and white. Sometimes, life throws us curve balls. Sometimes accidents happen like an unexpected pregnancy. I do think it's better to terminate preferably within the first trimester, than to have the child and get rid of it by throwing it in a dumpster for fear of being found out. No one wins then. The poor child or the mother.
The same goes for dying with dignity. I don't think wanting to avoid living a life as a vegetable is living and don't see how it can enrich anyone's life. And even if it does, I don't believe it's enriching the person who is suffering. I don't believe it's a weakness to want to die with dignity and a disrespect for life. Quite the contrary. I think dying with dignity makes one respect life more because they know that the quality they are living isn't really quality anymore. And with that it make a person strong enough to know when it's time to let go. Everyone has their own opinion and I erased my earlier texts because I know how heated these topics can get, but you know, I'm putting my thoughts back in because I do take offense to someone telling me that I'm being weak and disrespectful of life because I don't want to be a vegetable. I've always believed that everyone should have control of their own bodies and that everyone should respect each others views. Like I said before, I don't believe we're here to judge each other. And if we are here to enrich each others lives, maybe we should start by respecting each others view, not putting them down. Isn't life hard enough without judging each other too? I think the answer to that is yes.

Gosh, it was not my intention to make anyone feel as if they needed to banter religion or pro-life discussions. I was actually posting my personal "view". I was also trying to highlight that even in suffering beautiful and amazing things can happen for the person going through it and the ones that have been blessed to witness that life.

Regarding my views about God. This is my belief and I take no offense to anyone who doesn't believe in the same but, I shared my view without criticizing or trying to poke at anyone else's beliefs.. I just shared my thoughts that is it. Arguments come from those that speak against the one of differing views and I don't feel I did that in my post at all.

Shoot in this horrid condition I am happy for whatever belief a person has, if it helps them through it!!

Also, I wasn't judging anyone for anything whether that was religion, pro-choice or whatever again, I just shared my views and sadness that people do give up. My comment about weakness was regarding assisted suicide as there is no way to really compare one person's suffering from another so once we open the door to this (in my opinion) it breeds "an easy way out" instead of fighting to live or overcome. Shoot if people start giving up in big numbers then why would research continue for things?

Unwanted pregnancy, suicide and many other things that cause people to feel shame, guilt etc., is awful but, I don't think encouraging loss of life is the answer.. but.. that is my view not that I expect everyone or anyone to agree just my view. I like lifting people up, helping people find ways to overcome not give up.. that is just the way I am. Sorry if that offends anyone.

I am not one to encourage loss of life. I do believe that sometimes it is the lesser of two evils though. Like when someone is terminally ill and in pain or someone who can't afford a child they are carrying. I do believe that if there is anyway possible to preserve life that it should be done. But only if it doesn't cause pain and misery to that life. I don't think one is weak if they choose to prevent someone to not live in misery. I think it takes alot more strength to decide to stop a life from suffering than letting it continue in misery. And I don't think it's an wasy way out either. It's probably the hardest thing anyone would have to decide to do. But I do believe that everything that can possibly be done to preserve life should be done before a decision to end it is made. Because once that decision is made, it's forever. And it's something that the ones that are still living will have to live with everyday of their lives. It's certainly not something to take lightly. I undestand everyone's views, even though we don't agree on each others. I don't know if what I think is the right way to think. It's just how I feel with the experiences I've had in my life with my family and friends. I said I was offended, but I'm really not. It is a delicate subject and you are just as entitled to your beliefs as everyone else. I think its great that you are so positive about life. I guess I've seen so much bad, that maybe it's jaded me. I used to be like you, but have seen things that people have done that have made me very cynical of this world. Seeing the bad in people made me change my views on life. I still believe in a higher power and hope He understands my views. And if I'm wrong, I hope He forgives me. I've talked to my Priest many times about these topics. It's not an easy subject and I don't know how we got on it. If it was me who started it, I am sorry. I just wanted to talk about rsd. I'm glad we can all express our feelings and not judge though. I think we all learn something from each others opinions. That is definitely a good thing and I am glad for all of your points of view.

I think at the end of the day what we all want is freedom. Freedom to think, believe, live or die in the way we chose. The freedom to make our own choices and be uniquely us. And bonus if we could learn to celebrate our differences.

I’d be lying if I didn’t say that I’ve had moments along this journey called CRPS when I thought “I can’t take this another minute” and the idea of sucking on the end of a Gun looked appealing. Yes, I’ve had some very dark moments with this condition. But you see, being who I am, I HAD to think that all the way through; right through to the part when my children or husband either got the news or found me, or I screwed it up and was left worse off. So rather than check out, I remain checked in fighting through my days.

I too have researched if CRPS will kill me, and from what I understand there will be something derived from the disease that will eventually end my life. This is of course assuming something else like cancer, car accident, etc. doesn’t get to me first. Either way this body of mine wasn’t made to last forever (thank goodness), but if I can manage to get my kids grown first, that would be ideal. I don’t fear death. We’re all going at some point and we all go alone. Just my two cents.

Very well put Renee.

Please don't anyone start apologising for their comments though! This is, for me, a really helpful and interesting discussion, and so far I think we have all trodden a very careful line with each other. I think we all know we have slightly different views - it would be boring if we all thought the same...but we know, I think, that we all respect each other's right to have those views. The is the essence and purpose of a debate - we each get to give our view, and talk about each other's arguments. But it's not personal, and I'm not going to dislike anyone just because they think something different.

Can we all sign up to that belief and just carry on with this discussion? I'm finding the free flow of thought here a really thought-provoking and healing thing. Knowing that you have all thought about this too makes it seem a lot less scary. Monsters in the shadows are always scary - monsters in daylight are far less so....

I know some earlier comments have been deleted or edited, so please bear that in mind when reading what was a response to something that has now gone!

Bram :grouphug:

I deleted some responses yesterday about my pro choice views on the right to die with dignity and terminating pregnancies before I realized that Bram had commented on them. I'm sorry about that Bram. I just want everyone to know that Bram was responding to my views on pro choice. And though I said at first that I was offended by some of the comments made about easy way outs and lack of respect for life, I want to say again that I'm not. What I meant to say is that I just simply don't agree. I took out those texts yesterday because I didn't want this thread to be an argument about prolife vs prochoice. I want to focus on rsd. But maybe I should have left them in. It seems to me that unfortunately the positions that we are in may make some of us contemplate this topic someday. I hope it doesn't but if I'm to be honest about it and the pain gets to be more than I can stand, the thought may cross mind. I don't mind continuing this topic as long as everyone else is okay with it. I do respect everyone's views and am not here to judge, but to learn as much as I can about how to deal with this disease. I don't want to offend anyone either. We are under enough stress as it is. PS - Bram, I put my texts from yesterday back in, but worded them a little differently because I couldn't remember exactly what I said, so if you want to remove your thanks to them, I will understand.

Don't fret about it Renee :) I haven't been upset by anything on this thread, far from it. I think reliable debate and discussion is perfectly possible, even about the most difficult topics, as long as everyone respects each other and doesn't take personal offence...

Hope you have a good day, I know you're having a tough time right now, but don't worry about how we're feeling about something you wrote - you are clearly a good person, and what you think doesn't change that ;)

Bram.

I'm not offended by this topic at all. I think discussions are healthy even if the topic is controversial.
We DO need to lift each other up and much as we can. Sometimes that needs to be in the form of validating each others feelings.
Heaven (oops) knows that others in our lives without this disease tell us how we should or should not feel.
I for one agree with Bram & Renee that sanctity of life is important, however, IF or when it got that bad for me I would want the choice! Even animals get treated humanely.

It's amazing more people claim to have seen aliens than god and when a jehovahs witness said to me you can't prove god doesn't exist she was left speechless when i replied and you can't prove aliens don't wether there is a divine being or we are some sort of badly thought out failed alien experimentis irrelevant.
No one except possibly my MP can imagine the pain we live in and even he doesn't understand the effects of all the other symtoms we live with.
There have been 40478 trials looking for a cre for cancer and they haven't found one for CRPS that figure is 84 so there is no chance of a cure in my lifetime and probably not in this centuary.
I have been badly hurt had the condition made worse in 4 Hospitals one as the result of probably the second or third ranked specialist in the UK. Been treated by or spoken fave to face with 7 of according to him only 15 specialists in the whole country and realised everyone of them is 20 years behind the rest of the world. The total ignorance of even our best and the fact that any hospital s morelikey to make things worse than better lead e to amke a living will banning any emergency treatment even in life threatening situations. Being one f the 7 & 8% whose wounds may never heal something which might put a normal person in hospital could kill me
some of you talk about the positive impact but what about the negative, I've reduced my wife to tears so many times over te last 4 years I hate myself but despite trying to push her out she has refused to go even though she says she doesn't know what I'm capable anymore. My eldest grandaughter was for a long time to afraid to stay in the house alone with me and the other 2 are to scared to come and stay anymore.
it's spread twice and we all know it could go full body.after my first attempt my wife made me promise to never try again but after livng with this for a year she agreed that if it spreads to the other hand so I can nolonger go to the toilet on my own I can take my own life. I don't beleive in assisted, sorry no one should have to live with having tken anothers life and if they volunteer to take a strangers life most definitley should be barred, I have the pills ready and it will happen when she's away from home. Mst recently I have been wishing it would because I am geetig more and more fed up with having to fight for everything

I don't know what the right answer is so please don't go by what I'm saying. It's just my opinion. I think it's a very personal decision that everyone should make on their own. I do know that the saying "don't judge me until you've walked a mile in my shoes" has applied to my life on more than one occasion. There were people I've judged in the past for doing things that I said I would never do, only to find myself in their position later in my life making the same decisions they made. Then I understood why they did what they did and tried to stop judging after that. I never thought I would even consider the topic we are talking about here until I got rsd, but the pain is so bad sometimes, like right now that it's keeping me up in the middle of the night. I don't know how much longer I can take it. It's horrible and terrifies me. Yes, it also scares me to think of my afterlife. I want to believe there's a heaven and that I will be able to go there someday to see my loved ones who have since past. I don't want to compromise that either, but I also believe God is good and merciful and that I hope He would understand and forgive me if I made a decision that would end my suffering. I don't want to leave my loved ones here on earth either though. The thought of having my son and husband live with fact that I did something like that makes me not want to end my suffering. Because then they would suffer the rest of their lives. I'm trying to endure the pain more for their sakes, then for mine. But I don't know how much more pain I can take. I hope we never get to that point and that a cure is found. Maybe a miracle will happen. Maybe then we won't have to worry about making that decision. I just don't know. Right now I'm just trying to take it a day at a time, until I may have to walk that final mile with this disease. From my past experiences, I suppose that only then I will truly know what decision I will ultimately end up making for myself.

Oh Renee...we all carry so much guilt, don't we? We feel so responsible for everything, even the things out of our control :confused:

The despair at times like that - middle of the night and everyone else in the world seems to be asleep without the dreadful pain and fear - is overwhelming. I hooe you are feeling a little better now and more hopeful :)

No one can blame another for their thoughts, and I truly believe that at the ultimate lowest point in life, when all hope has gone, someone making that ultimate decision will not have done so lightly. And their family need to know that.

Earlier this year, after I had that heart episode and felt so appalling for a couple of days, there was a point where I truly thought I was close to it taking me. I did a voice recording for my family, and it was the most heart-wrenching thing I've ever done, really thinking about what I could say, how to express things you can't even bear to think about. It was truly awful, BUT a really good experience too in a funny way, because even in the depths of fear and despair, it made me think about all the important, amazing things I still wanted to be see, all the people I wanted to be around, and how much I didn't want it to happen.

If I ever get to the point of considering suicide, my life would be bleak and feel hopeless, but I would do a recording again, and I think I would know from that experience whether the scales were still up or down for me. For a rational person, I think that is a true test. No one doubts that we love our families, but if life itself becomes so dreadful for us that we feel we have no other choice than to say goodbye, then that is our decision alone to make. And at least the people who matter would know our thoughts, and not forever wonder.

A famous somebody once wrote that we are born alone, and we die alone. I think that's true in a way. When my pain gets really REALLY bad, I cannot even hear another voice, or respond, or be aware of anything except what my body is screaming at me. It's a terrible isolation. I can sort of see how in that final moment, you might not be able to think of anything except ending the pain.

If I heard of any long-term pain patient ending their life, I would just be terribly sad for them that they had suffered so much that they felt they had no other choice. I would be sad for their family and friends too, but I would hope that they could in time understand why it had happened.

I take responsibility for my actions, whatever they are. It's all you can do.

Have a decent day everyone, and thank you all for this discussion, and letting people speak freely. You're all fab and I feel lucky to kind of know you ;)

Bram.

Hi Keyscar, I'm sorry you're in so much pain that you've gotten this far to making a decision like you were talking about. I hope that somehow your pain does subside so you don't have to consider that. Like I've said before, I don't know what the right answer is, but I do understand what your saying because I've felt the same way at times. Like earlier this morning. I was up until 4:30 in the morning in horrible pain that went right up to my face because of my tooth hurting now. I had the heating pad on my face to try to help because I couldn't take anymore pain meds at the time. But like I said before I don't know what I will do when or if it gets to that point that I don't think I can take the pain anymore. And I don't want to influence anyone, because I just don't know what the right answer is. I hope I will know what it is for me when or if the time comes. But I also keep hoping that time will never come for any of us. Hope and my family are all I have right now to hold onto to keep me going. I hope again you feel better and thanks for sharing your thoughts. My thoughts are with you too.:hug:

Hi Bram, Thanks for sharing your thoughts too. I'm sorry you got to a point so low that you were considering ending your pain and suffering. I think that the tape recording idea is a good idea if one ever does consider this option. I'm glad you are still here and decided against it for your families sake and your own. Plus I never would have known you then, and that would have been sad for me because I consider you a good friend. I do understand the guilt that keeps us going and all the things we still want to live for. Even in our suffering it somehow sometimes keeps us going. I don't know if it always will for me, but I hope that my family will understand if I make that decision. I will do some kind of recording so that they will hopefully understand why I did what I did. But like I told everyone else, I don't want to influence anyone. I don't know what's right. I just know that the thought has crossed my mind and can't honestly say that it won't again. Only time will tell. Maybe if I get to that lowest point of my life, I may decide to carry on. I just don't know. I'm thankfully not there yet. My thoughts are with you always. And I want to say again how I appreciate all of your views. I have learned something from each one of you and it has helped me to grow and feel less alone. I hope again I haven't offended anyone. And I hope that if someone doesn't agree with my views that they still know that I still respect theirs and consider them good friends too. After all we're still in this rsd boat together. I hope you have a better day today too. :hug:

Just wanted to clarify Renee - I have never considered suicide for real, I only ever thought about it as part of the process of realising that there might come a time when i would consider it if things got really bad... I made the tape when I thought that I was in real danger of my heart giving out earlier this year when I had heart spasms from the CRPS - and I mentioned that IF I ever had to seek a way out myself, I would leave a recording so that people would have an answer to the 'why' question.

Bram.

Sorry for the misunderstanding Bram. I too have not considered suicide, but have also wondered what I will do if my rsd gets the best of me. Thanks for clarifying. I think I'm going to stop commenting on this thread though. I started it wanting to know if anyone was scared of rsd killing them, and somehow it got into the subject of suicide and it's starting to freak me out. I really didn't want to go there with this, but somehow it did get started. It's too depressing and even though I feel like crap today, I want to just stop thinking about it for a while and watch some football. (Let's Go Giants!). Thanks again for all of your comments and I hope you all have a good night.

No problem Renee :)

Hope you're feeling a bit better tomorrow, and that you get some sleep tonight. Take care of yourself.

Bram.

PS - I said the quote "if you walked a mile in my shoes" today and shortly thereafter there was a sermon on church tv saying the same thing. But then it went on to say that we shouldn't judge but should just love. And then it said that even though we don't agree on things and think others are making a mistake, we should try to lovingly help them see the light. I can't help but think this was a sign from God. Maybe we should understand why we feel that we want to the pain to end, but maybe, like Tessa said, we have to find some good in the bad and try to carry on even though it hurts so much. I think the Big Guy upstairs was trying to tell me something. I'm sorry if I'm being a flip flopper but I think I'm going to have to agree with Tessa and try to fight this and try to live not think of dying. I don't want to die and I don't want anyone else to think about dying or suicide or any other termination of life. I don't even watch church tv, it just happened to be on and I really think it was a sign. So I hope you all forgive me for saying that I'm pro choice. I am changing that to I'm pro life. It's just my opinion but I hope you all someday feel the same way. I just don't get good vibes about being so negative. I'm not trying to be a hypocrite. I've just changed my mind. Thanks for listening and take care. PSS - The Giant's Won Today!! That's another sign to me that miracles can happen!!!