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I am losing the battle one day at a time.



  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Shingles is a type of nerve issue in same family as neurological but luckily this sometimes resolves itself but some are left with  permanent nerve damage after.
    I know all about letting someone go to live a better life.  A 13 year relationship just burdened by dealing with a boyfriend in to much pain and suffering jumping from one issue with slight hope and upon reaching a place to start life again thrust into the life of CRPS and spinal cord issues plus more.  I felt it break under the weight, a person, a life , a relationship can only take so much cruelty of hope dashed. My ex is engaged now, happy, a step mom and even though she was also cheating in the end I don't hold a mistake in the end as representative for 13 years of being there for me.  I am happy she gets to live a normal life, even though I may never again.  No sense in two lives ruined, life is so short , to short to live this way if you don't have to. Truth be told even though she will be marrying my ex best friend who was also who she cheated with, it offers a small peace inside for her getting the life she always wanted but couldn't have with me.
    That is pretty bleak but chronic uncontrolled pain often destroys everything it touches eventually as a fire does.  This life shouldn't be lived by anyone, but it is and that's life and even when you think things can get better they often get so much worse.

    Im sorry to hear all the pain you still deal with and often though by your description you were dealing with some type of central based pain in the same family as CRPS for which it will change you internally and is relentless.  Think long and hard about your relationship and speak with your wife about it, if she is happy.  If it's decided that you should keep trying then do it but if it's decided the right thing is to end it if you do it on good terms and understand what the spouse had to endure you will one day be at peace by their happiness and ability to live a life you used to hope for.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • armelindarmelind South TexasPosts: 130
    Thanks for that. I too hope you get some form of relief. Btw I am sure you agree....but I hate the pain scale. It doesn't make sense to me. 5 yrs ago my current pain would have been a 10 if I put it on a sliding scale. But today my everyday pain is (maybe) 6 to 9?? I don't know. Its the worst pain I ever felt but I am not screaming in pain uncontrollably so I know it isn't a 10. So am I that much stronger? Is my pain that much less? No I don't think so. 

    It's more of a "what kind of lewd act or behavior would you be willing to perform to guarantee pain relief from this current issue?"

    I could say right now, I would do some pretty low stuff at the moment. I mean "in the history books" type of stuff and I would gladly film it live on facebook LOL!!! So.... yeah its that bad.

    This whole forum and sharing thing reminds me a lot of AA. I tried it to help understand my behavior but I failed at it. I was told by my sponsor that I wasn't an alcoholic in a sense that he understood it. He was clearly an alcoholic but my behavior never took me anywhere near his or most of the others situations. But besides that, I did learn a lot. I guess it is helping somewhat remembering the lessons I learned and what to do to live my life in some meaningful way. But as for me, I am not a member of AA anymore. I dont have the problem I thought I had. My body regulates my behavior much better than it used to. I cannot drink much at all. I know that drinking on opiates is looked down upon but a few ounces does help me to relax here and there. But my body always tells me when I have had enough. I listen to it. And it is always before I go too far. 

    Let me say before anyone judges too much. I do not look down on anyone that has a problem. I have no quarrel with any one with an addiction issue. Please don't think that you can judge my actions because you have me figured out. You don't and I don't share "everything" on here but this is sort of my "safe zone". I do more of my complaining on here than I do in person. So what you see here are my inner thoughts and some of my low points.

    I hope I set an example of non-judgement on others in all of my posts on here. If not, I would gladly like to apologize and try to amend my ways. Otherwise, I do enjoy the community here and I hope that I can continue to help and be helped.
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  • itsautonomicitsautonomic LouisianaPosts: 2,561
    This place is pretty anti judge mental these days as understanding uncontrolled pain both mental and/or physical can lead to.  Drinking can easily become a crutch to help control pain that otherwise isn't, it was for me for a period.  But I am not afraid to share it either because when pain has you suicidal and no doctor is helping what choice may one have but to do what they would not as the brain reverts to primal instinct to get out of pain.  But prior to CRPS I would never have turned to drink even with spine issues, but I saw first hand how pain increasing can change a person.  I paid the price for that drinking but I was far from an alchohic.
    I enjoy a drink still but I no longer am forced to use it as pain killer because I am diagnosed now, I have Drs support now and a team solely dedicated on trying to get me pain relief the right way.  Do I take responsibility for doing something unhealthy , absolutely and pain the price with DUI but am I the only one to blame?  That is another story and another question.
    So from myself and most others here I can say we understand and hold no judgement, aren't we all just trying to survive this?
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • armelindarmelind South TexasPosts: 130
    she says she is happy and praying for me everyday. i don't want that. as for the cheating, i have no proof, i am not looking for it either, but there are some changes in behavior and i let her do whatever she wants because in my mind, i may be a prisoner in my home, it doesn't mean she has to be. i know she would be resentful if i made it difficult to leave the house. my only issue is that she is a good looking woman and she likes to go out and see friends. i know that she has admirers. i know at least once at the beginning of my pain issues when i started isolating myself because i didn't want her to see me in pain so much or complaining or crying. she took that as me losing interest. i never lost interest but i couldn't vocalize my problem. i was just mad all the time and she was in the firing line. she started seeking the comfort of her friend. where it went, i don't know and i haven't asked but i gave her the ultimatum, me or him and she chose me. we went to counseling and things have been ok and we became closer. but, things have only gotten worse on my end and she is still as wonderful and vibrant and still wants to do stuff but i am stuck at home waiting for relief because i don't want to be out by her side while wishing i was home the whole time.

    maybe i am too nice, maybe i am too understanding. maybe my mind is making stuff up?? all i know is everyday i am glad she is there and resentful of her small issues she has that are so "devastating" to her. i want her happy with me, not unhappy with me. so if that means she is free, then i say go. but i will miss her. but she says she doesn't want to go. so if she is fooling around behind my back, it will be so easy to be mad.

    our mind is so complex and mean sometimes... right?!
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    We are very alike I to had anger and didn't want to hold my ex back so I encouraged her go out with friends and it made me happy she didn't have to sit home.  There isn't a manual for this stuff, just tried to do best I could in crappy situation.  I was very angry also when first found out about cheating, time has healed those wounds.  It was hard to because she knew me before pain and who I was so it always hurt me that what she saw now was just a shell.

    Yea man the mind is a crazy thing
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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  • armelindarmelind South TexasPosts: 130
    Yup. all my life I was fairly fit and healthy (with minor back irritations here and there) me and my wife have been friends for like 15 yrs before we started dating. Then a year after dating bam, this happens. Been together 8 yrs now. I dont know if its over, its just a thing going thru my head.
  • memerainboltmemerainbolt IndianaPosts: 6,476
    Armelind, please don't push her away if she doesn't want to go. I understand the guilt you are going through, it almost destroyed me.
    A few years ago I started having stomach issues which took me down to 83 lbs and had just been diagnosed with very progressive scoliosis. I was in horrible pain and throwing up 5-6 times a day. Add that to an excruciating back.
    The medicines were not helping, no one was helping, I had enough.
    My hubby and I have been married for 27 wonderful years, I've said it before on here, he's a saint. Except for one dark night that I went in that hole and didn't want to come out, our marriage was perfect.  And it wasn't just the pain but the guilt. I was having to let go of so much that we loved to do together, especially riding our Harleys.
    That one dark night I wanted to find the nearest bridge.  And he literally stopped me. He said, let me decided if this is the life i want with you, give the doctors a chance to find something to help. We've battled this together for years, why are you trying to tell me what i want.
    And with that I came out of the hole, starting seeing a pain psychologist.  I've learned how to deal with the guilt, anxiety and depression that goes hand in hand with chronic pain. Yes, the pain is still there but not the guilt. We did not cause this but we have to deal with it.
    One of the many things he and I are good at is talking. We don't argue, fuss or raise our voices, we talk. 
    On this forum we talk about the pain and what problems it causes but not very many on here talk about relationship issues and what that causes.
    Hopefully this will open a whole new issue. I hope you find peace within.

    Veritas-Health Forum Moderator
    Please read my  Medical History
  •  Armelind, I understand how you feel..the isolation, loss, hopelessness, fear, and non-stop anxiety. I don't know what to do either and am not much help I'm sorry to say. Even though there are many of us going through the same things, I can't help to feel all alone in my own little universe. The relief is brief but then the pain comes roaring back. Not just the physical but all the emotional pain as well. Every day is a struggle and we can only hope that the next will be better. 
    Ol' Spiney..Micro-D L4-L5, TLIF L4-S1 -post op central HNP L4-S1,stenosis, retrolisthesis, EF, facet arthropathy, lumbar& cervical DDD. FBSS- Medtronic pain pump & SCS
  • I have been where you are.  I spent 5 years in and out of ERs. I have been through the pain medication  ringer and had just enough  quality of life to be depressed.  My marriage was in shambles I didn't care if we made it or not.  When pain is excruciating that's all you can think about and care about.  I know it's hard.... It's not easy for your family either.  All I remember is being depressed and angry.  One day after realizing I had "lost myself " I went to my doctor and got a referral  to psychiatrist and got on antidepressants, then I started talking to a psychologist a few times a week.  Little by little I tried to mend my marriage and myself.  I had genetic issues with meds so the pain meds weren't working properly. I then for a year or so toyed with my opioids and found something that made life a little more bearable.  I finally had a fusion and decompression surgery and feel like life is worth living again.  Look, I ended up in a chair for years and I even made my marriage open so my wife could still have a sexual life.  Message me if you need to talk.  I sure hope you find relief.
    Ankylosing spondylitis, moderate lumbar spinal stenosis, spondylolthesis L5- S1, 5mm disc protrusions T6- 9 with minimal cord compression, cerebral palsy of the right side

    PLIF fusion L5- S1 with decompression and hardware Dec 7th 2016
  • armelindarmelind South TexasPosts: 130
    edited 12/17/2016 - 8:57 PM
    Call me old fashioned or insecure, I don't think I would be ok with an open marriage. We are married, we took the vows I still have kept my end. If she wants someone else, she can be with someone else without me. I have made sacrifices for my wife that I now realize she wouldn't have made for me. But I still care for her and I guess I have always been that way. If my wife became handicapped or unable to "be with me" as long as we are together, I wouldn't stray.
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