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Chronic pain has left me with no will to live...

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Old 04-14-2019, 12:52 PM   #1
adelina
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Confused Chronic pain has left me with no will to live...

I am not suicidal. But I know that, given the choice, if I could leave peacefully I would accept a choice to no longer live. I have been in chronic pain for 11 years. It came on very suddenly and ended my life as the person I strove to be. I lost my Mobility MyHealth my family. I have neuropathy that is small fiber and not treatable except by pain medications. Which I despise beyond all belief. But if I did not have them I would actively take my life my pain is so bad. Even with them I am bedridden unable to care for myself or my children or to go play with my animals. I am tired of crying in bed 4 to 5 days a week from the pain. During this time of year I am in a level 8 to 10 4 to 5 days a week. I cannot do anything besides watch TV. I do not have a life. I cannot go out. I cannot have an active life with my children. Having been a stay-at-home mom now I see them but a couple of days a month. I don't want to be this way. I attended this forum consistently when I was first diagnosed. But since then life has just gotten worse and I feel tremendously guilty even bringing it up. I do not want to call suicide prevention is that is not my issue. I have one friend who is also disabled and she provides me with a meal each night. But I cannot rely on her as much as I need help. I am verbally abused by my ex-husband on a regular basis in front of my children. He has alienated my two oldest children from me. My two youngest have very deep-seated issues aligning from my illness and their and my relationship with their father. My youngest is terrified of pain and getting the condition that I have. Ganglioneuritis or ganglionitis. Fibromyalgia. Severe autonomic issues and a plethora of other health issues. My middle daughter has become an emotional brick/wall from all of the upheaval in her life. Both girls have a very strenuous. And imo dysfunctional relationship with their father but do not acknowledge very much of it. My youngest cannot well actually my middle girl as well cannot handle their emotions. Also my youngest is very much a caretaker. She has not really ever known life without me being disabled. She is also very high energy and maintenance. Where is my middle daughter is extremely in dependent and closed off. That said I feel we have is close of a relationship as we can given the circumstances. I try to fight or their rights with the father but he will not acknowledge me and I have no legal rights. I am trying to go to court to change this we'll see what happens. Back to why I'm primarily here. I live minimally. I sleep when I'm not in pain I eat 2 meals a day. I go to the bathroom and go out with my dog for her to go to the bathroom. That is it. I have no life. And don't know how I can endure the rest of my life however long or short it may be. I am a total failure in every respect of life. Some may say I am feeling sorry for myself. And I do think I do that but I have nobody else to feel sorry for me. Nobody to tell me it's okay to feel this way. Nobody to tell me fix it. Nobody to be there for me. Comfort me. Care for me. I already put too much on my girls it can't face doing more. My pain has increased as it always does this time of year but it is extremely high this year. It has placed me in this mood. I know antidepressants will not work. I have tried them throughout my life and all they do is lower the thresholds at either end of the emotional spectrum. But do not help the issue. I would enjoy psychotherapy but I cannot afford it and I cannot also Drive. I'm sorry to put this out there it is another failure to me. But I just don't know what to do. I am not scared of death. I am scared of dying. But as I said I dream of it many days a week.
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Old 04-14-2019, 12:58 PM   #2
adelina
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Shocked

Wow. 5 min has passed and I feel less oppressed. Slightly less heavy and mournful. Just getting it out has helped. Thank you
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Old 04-15-2019, 12:45 AM   #3
adelina
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I am so, so sorry. I feel as though I have made a tremendous mistake. No one has responded and I think perhaps I have done something wrong. Have I overstepped the rules?
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Old 04-15-2019, 06:33 AM   #4
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adelina -- No, I'm certain you haven't made a mistake of any sort. I'm glad you found this site - a place you can "talk". I'm also certain more people will be here to respond.
It sounds like you are in such a situation that I don't know HOW to respond. I wish I spoke better -- I wish you felt better.
Please, please, do keep talking, talking all you want. We are listening.
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Enemies ..... Don't see them as bad. See them as broken.
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Old 04-15-2019, 12:57 PM   #5
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Wren I love and try to live by your quote at the bottom. Thank you for responding. I cannot believe how much better I felt from just getting it out. Not lively, but less oppressed. I will keep at it and maybe I will get to a place where I am able to actively engage in life again. That is my hope.
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Old 04-16-2019, 03:22 PM   #6
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Okay I have to get this off my chest so I'm going to talk to you. I'm a bad mom. I called Monday night to confirm with my oldest daughter sorry my middle daughter that she was coming to visit for 2 days. She said that she wanted to just do one day . She's 16 and because I'm disabled we are not able to do anything but watch TV and talk alot when they come to visit. It is terrible it makes me miserable. But I know they love me and so they make the visits. I only get to see my middle daughter though about once a month because she has a wonderfully active schedule. Which I fully support. But I snapped at her when she wanted just a one day visit. I was hurt by that. that I am so low on her priority list which is so completely normal for a 16 year old and what they're supposed to be doing. But at the same time I struggle with missing their lives. I cannot go see their events. They're both very busy and wonderfully attending many after school activities. And teenagers are supposed to grow away from you. But it hurts so much to not be regular mom. I knew snapping at her was wrong. So we left the phone call saying we would meet to have her come over. But this morning I called and very nicely explained I was in too much pain to have her visit right now and told her I loved her and to have a good Easter weekend. And I know that I left her feeling guilty last night but this morning I did the right thing and she felt okay. But I feel miserable with this instability with my emotions has gone far enough. I've decided I'm going to try and do antidepressants so that my lows aren't so low. The problem is antidepressants repress all feelings including joy and love and happiness. And I need those positive feelings so badly right now. My pain has been so bad this year so much worse than it is ever been. I need something good. I need need need my children. But they have zero need for me. At least my middle. My youngest calls when she's out doing a chore and all alone. At least she calls me some. I truly do not have anyone. And I have wanted so badly to make new friends so I can find support but I do not leave my house. I have tried various online Outlets but every site I have tried doesn't seem to have very many people on it. Even this site has substantially changed from what it was when I tried it years ago. I really need therapy so I have someone to talk to but even that wouldn't be the support and care that I need. I am almost 50 this is ridiculous I should be a grown up good not need people. The problem is I went through my whole life independent. Growing up with a mother who is cold and remote and emotionally manipulative left me independent at a very young age. So I've never ever had close friends. When I got sick I really distance myself from society and lost my social friends. Then with my divorce my ex-husband told the rest people that I talked to that I was a drug addict and an alcoholic. Completely untrue but now I feel like a pariah when I go anywhere in the town we lived together in. I no longer live there. But I'm in a a place where I cannot get out to make friends. To find people that would support and listen to me. Well I hope this helps my day I hope it makes me feel better. And I hope that someone could understand what I'm going through
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Old 04-16-2019, 05:08 PM   #7
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Something I meant to mention before but didn't. The truth is I'm not in too much physical pain today to see my daughter. I lied to her because I'm in too much emotional pain today and I didn't want to mess up and have her bear the brunt of my emotionality.
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Old 04-16-2019, 05:31 PM   #8
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Hi Adelina: I sometimes listen to books on audible....or audio....many can be rented from the library....it helps on those lonely days when I am in my head too much. I get into the books/stories and often get lost for a good long time. I don't leave my house often, either, so I know a lot about what you are going through. It worries me for you and for your kids when you say you "need need need" them.....because they are so young and still developing, and for children, that may be very hard.
Human being contact is so important to all of us. My husband is with me still, and we do ok together, but having issues like we do can be a struggle. One thing I've recently learned some about is the connection between pain and the brain (emotional/cognitive connection). I mention this, because just learning this helped me make more sense of all of my emotions that can sometimes get rather raw. I have been able to redirect my focus and my thinking (when done intentionally) which is helping me. I am more positive and less hard on myself for my reality. I have been through a lot of stages with my issues, and as it has progressed and gotten worse, I have had to work hard to accept my circumstances without getting hopeless....and negative. I really do enjoy all of the books and as much as I can, I do get outside and even further when able.
Perhaps you could seek resources to enable you home health care...I know there are, at least in some places, resources for the elderly and shut in.....some light house work and company for them, at no charge to them. Maybe this would get you some human contact?
I wish I had more, but I can't think of anything further at this time.
I will say that I come on to the group here as I can. I post pretty much every time, so you can see that my visits are like once a week or so.....I suspect others are visiting with more or less the same frequency.
Oh, I thought of one other thing. Back when I was 26 (I am 52 now), I was single and bored a lot and would go online in the evenings and play card games with others. I enjoyed that at the time and it cut the loneliness some, too.
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Old 04-16-2019, 09:41 PM   #9
adelina
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Quote:
Originally Posted by CRPSinSC View Post
Hi Adelina: I sometimes listen to books on audible....or audio....many can be rented from the library....it helps on those lonely days when I am in my head too much. I get into the books/stories and often get lost for a good long time. I don't leave my house often, either, so I know a lot about what you are going through. It worries me for you and for your kids when you say you "need need need" them.....because they are so young and still developing, and for children, that may be very hard.
Human being contact is so important to all of us. My husband is with me still, and we do ok together, but having issues like we do can be a struggle. One thing I've recently learned some about is the connection between pain and the brain (emotional/cognitive connection). I mention this, because just learning this helped me make more sense of all of my emotions that can sometimes get rather raw. I have been able to redirect my focus and my thinking (when done intentionally) which is helping me. I am more positive and less hard on myself for my reality. I have been through a lot of stages with my issues, and as it has progressed and gotten worse, I have had to work hard to accept my circumstances without getting hopeless....and negative. I really do enjoy all of the books and as much as I can, I do get outside and even further when able.
Perhaps you could seek resources to enable you home health care...I know there are, at least in some places, resources for the elderly and shut in.....some light house work and company for them, at no charge to them. Maybe this would get you some human contact?
I wish I had more, but I can't think of anything further at this time.
I will say that I come on to the group here as I can. I post pretty much every time, so you can see that my visits are like once a week or so.....I suspect others are visiting with more or less the same frequency.
Oh, I thought of one other thing. Back when I was 26 (I am 52 now), I was single and bored a lot and would go online in the evenings and play card games with others. I enjoyed that at the time and it cut the loneliness some, too.
Thank you CRPS. You are very helpful and I really appreciate you listening and offering advice. I like your idea about audiobooks. I do that with watching movies. I'm not sure I would be able to get out of my mind enough without visual stimulation from the TV. But I've never tried audiobooks and am interested. I also like your thoughts on the cognitive emotional relationship. I will definitely look into that because it sounds like something that might be very applicative to me. Thanks for the suggestion. It sounds like you've gone through a lot of this and you do give me something to look forward to in possibly be inspired by . I am actually pretty aware of how negative and how emotionally demanding I can be and the consequences that it has on the very few people I have interaction with. I am certain that this contributed largely to my divorce. I became emotionally overwhelmed and confused with my disability. And it contributed to my relationship downfall. I am a very in my head person. Which is why I'm driving myself crazy hahaha. It's just that I look at facts. The facts of my life are very very very dismal. I truly have 99% of my life is either neutral or negative. With neutral being the larger percentage. Because my interaction with my children is so little I I don't have anything else to be positive about. Actually I take that back I do have my pets in when I'm not feeling terrible I do appreciate them. And I do have my friend and her husband that do help me quite significantly. And when I'm not in terrible pain I am so grateful for those things. Very grateful. When I'm not in terrible pain I find the smallest things to be grateful for. I try to be positive. The problem is is this time right now when my pain is so so severe. I have no energy and am exhausted and serious pain. When I'm in this condition I cannot be positive. One thing that is something I'm interested is it I did find that there is possibly a new treatment for my condition. It's actually something I've looked into before but wasn't confident worth trying. It's one of those electrical stimulators. I found a couple of articles that actually said it might work for my specific condition. The problem is the pain is so great that I cannot function most days. I would have to look and to finding some resource for it a place to do it. And I'm in so much pain I can't even think. Today I'm doing okay my paint has been around a level 6 I could have done it today but I let my depression control me I've let it make me hopeless. But just talking right now about it makes me feel better so maybe I will find Hope and make the calls I need to about the implant. And thank you for that you have given me an outlet by listening to me and I really appreciate it.
And you are so so so right when it comes to the fact that I need my children or feel that I need need need them. It is wrong to put that sort of pressure and dysfunction on my children and I am very well aware of it and feel horrible about it. It's just that they are only the only people that I interact with. So it accidentally comes out sometimes. Most of the time it doesn't. And when it's worse is when I am in severe pain and feeling so so low hopeless and lonely. I do not qualify for home health aide in my area. Unfortunately I am on the cusp of poverty and survival in my income bracket in my area. I'm not doing very well financially but not low enough to qualify for help. And I have also tried various games online that have social interactions. But the problem I have found out with that is that I have so much Shame about my dysfunction did I can't reach out anymore I don't want to put that kind of burden on people I feel terribly guilty about it. I guess that's why I finally reached out on this site because it has helped me in the past where is nothing else has. That's why I wish I could find a mentor a therapist that acts as an Advocate as well. I honestly need a mother. I have tried the mother myself and at a few instances I've been able to do that. It's just that I want people in my life again. But then I have that quandary about how awful a person I am. It's like I'm of two minds I'm an awful person and I'm a decent person. And I know I can be both but when I think of the awful person I can be I don't want to have people to have to deal with that person I'm so horrible that my own mother hasn't disowned me my ex-husband walked out my two oldest children won't talk to me. Deep inside I know each of these things I'm not entirely my fault. Each of those people has their own dysfunction. My two oldest children are adopted and have serious problems with connecting with people. With the help of my ex-husband they have been alienated from me. And my ex-husband and my mother are both dysfunctional I can see their problems and feel sorry for them. I don't blame any of them for my situation I am completely responsible for myself. And I'm really realizing that I am blabbering on and I'm sorry. It does feel good to let it out but I'm going to go now and thank you very much for listening to this. Hey maybe I should start a podcast hahaha
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Old 04-17-2019, 02:13 PM   #10
adelina
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CRPS!!! OMG OMG OMG. I am absolutely blown away and crying tears of joy for the first time in 11 years. This cognitive emotional connection and the connection between pain in the brain! The I'm absolutely wordless to explain how I feel right now. It is me it describes me to a T. It is so educational and helpful an unbelievably satisfying to be able to put a name to what I'm experienced. I am very much one of those people that likes to have my questions answered and I'm very curious and I felt all alone because I never realized that I have validation for what I'm going through. Now I know I'm not diagnosed or not talk to a professional yet which I intend to go see my doctor. But I really think this describes what I'm going through and I can see it. To see it written down somewhere describing what I feel and I can relate to is unbelievable. It makes me feel so much better to see a logical reason for what I'm going through. That other people have experienced it unfortunately. But to know that it's not just me but I'm not defective and that there's a reason for what I feel and that it's not my fault. This brings me the greatest joy I have felt in so long. CRPS Thank you thank you thank you thank you thank you.
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