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I'm really tired of being me

TJCTTJC Posts: 21
edited 06/11/2012 - 8:40 AM in Depression and Coping
It's been awhile since I have been on here but my life never seems to slow down and my problems never go away. I'm so tired of the pain I live in I don't know what to do anymore or where to turn. I've had 3 neck fusion surgeries, 1 artificial lumbar disc replacement, 1 lumbar fusion surgery several lumbar nerve blocks, several epidurals, physical therapy, and so much medication that doesn't seem to give me my life back. I want to bee again and I know my kids miss there old mom. I never dreamed at 35 I would be in the shape I am today. My surgeon says the only thing left to try and take my pain away is a scs but my pain managent doctor says he's sending me to a ns and to tell you the truth I don't know what to do anymore because I've gave up hope I mean why try of nothing has taken away my pain and problems why go on to new stuff? I guess I'm really looking for a shoulder to cry on that feels like me.


  • Wow it hurts just to read through your post. For some reason I see a lot of my own past interwoven in your experiences. The surgeries are different, but the pain, process and feeling of hopelessness is all the same. What I do want to let you know, is that there IS hope! I reached a point where I wanted so much to just give up and give in, but I couldn't. I felt so terrible and hurt so much and was afraid of having to live that way without any way to help manage the pain.

    One of my docs recommended an SCS to combat the chief complaint coming from my c-spine. I was scared of what would happen if that failed. I was a wreck at that point. I went ahead and did the trial and had the permanent implant done. Talk about restoring my hope in the future! I was able to function once again and I could enjoy the sunshine on my face and the smell of the ocean and the trees again!

    I'm not trying to say that an SCS is the magic ticket for you, not at all. I'm just saying that even when we feel there is no more hope and nothing more to hang on to, there is. We just have to keep putting one foot in front of the other while looking for an answer or looking for help.

    It never hurts to try something new. (okay there are always risks involved) The thing is, if you don't try something, how will you ever know if it works or not. If you trust your docs, let them work for you in finding a solution.

    Sorry to ramble like an idiot. I hope you feel better soon.

  • I have experienced many of the same feelings you describe. I'm 40 and have a five year old son, I have beat myself up about who is going to teach him to throw a curve, who is going to teach him football, who will introduce him to the outdoors. I feel like I let my wife down all the time, she likes to be very active and I'm not able any more. It does take time but it can get better emotionally. I found a chronic pain shrink that I see regularly, that helps. I have a friend who suffers as well we get together and gripe. People who do not suffer chronic pain will not understand, I gave up trying to talk with them.

    I have actually been to the point that I wished I would just die, so everyone else could get on with their lives. I finally learned to accept that there is nothing I can do about my pain and that I'm not in control of it, I refuse to allow it to control me. There are ways to accomplish many of the tasks I did before. When I take the kids to the amusement park I rent the chairs, or take mine. My daughter was 12 when I had my last back surgery, I went from coaching her softball team to peridocally attending her games. She was old enough to understand is one of my biggest supporters. My friend has a son who is 13, he helped me to see that my phisically limitations would not harm my youngest son. His son never knew his dad before his injuries, they have a good relationship. What is more important is that the kiddies know you love them and are there for them. I know it hurts emotionally but there is hope, Good luck
  • I can only read a few posts on this forum before I find myself in tears, nodding in total agreement with a horrifyingly depressing post.

    Like retiredbosn, I often feel like I'm letting my family down. I feel like a failure as a wife and mother - and yet, they constantly tell me the opposite. I know it's easy to let our pain and conditions define us, but just know that others don't see it that way. Especially those who love us.

    I remember when my father lost his ability to walk. I remember how my love, admiration and respect for him didn't change at all that day. There were fewer things we could do together, but it still didn't change how much I enjoyed the time we spent together. I wouldn't have traded him for any father in the world - not even those guys who took their kids on ski trips and coached their daughter's soccer teams. I was proud of my dad and never once resented the fact that our family couldn't do "normal" things together. And when he apologized for being a burden (he did that a lot) we thought he was crazy. How could he be a burden?! He was our hero!

    So when I start to get depressed and think about how much I burden my family, I stop and think about how much I would give to have my father back for just one more day, wheelchair and all.

    Our families are adapting to our limitations. They love us - they treasure the time they spend with us. Depression does silly things to our heads, but don't let it distort the fact that we are loved and valued, no matter our limitations.

    As for the physical pain - it's there - it's always going to be there. Take it one day at a time. :/
  • You've been through so much and my heart goes out to you. I can relate to some of your experiences but you have had more surgeries than me. Another thing we have in common is our age. Today I manage my pain with the help of medication and also a pain pump since my doctors feel that more surgery won't help me at this time. I know you must feel so overwhelmed right now, trying to figure out what the next step should be, and if it right for you. If you do consider trying out an SCS, you'll find that there is a goldmine of advice and information here from people who have experiences with it. Hopefully this will be the procedure that brings you the best relief. Always remember that something CAN be done for you so never give up. There is a procedure or treatment that will be beneficial to you. Take care
  • I never really considered myself depressed I always just thought I am really stressed but maybe it is time I start seeing someone that I can talk to who deals with people with my problem of chronic pain I really wish that somewhere in my area they would have a support group for this stuff that way us chronic pain people could just get together in person and grumble. Don't get me wrong I love this sight but there just something nice about getting together in a group. I hope I just didn't sound ungrateful or selfish. I know there slot of wonderful people here and I don't know how I would cope some days without it.
  • I went through a period of deep depression. To the point where I was thinking seriously of ending it all. Luckily I had started seein a therapist because my GP said I had PTSD from my accident. She saw the signs and sent me back to my GP for consulatation. He started me on Cymbalta, and after about 3 weeks, I started feeling so much better! I still have severe chronic pain mind you, but I am able to look at things differently. I didn't realize I had let myself sink so low until I was actually there. It is so hard to ask for help-at least it was for me. It was kind of embarrassing actually because I have always been a very strong person emotionally. I hope that you will consider telling your doctor how you feel and see if you can get relief. I know what you mean about being in a group and talking to others in the same boat as you, it really helps. I was lucky and my PT office offered a pain management group. Our town is very small, and this was new. WOW! It helped so much. I hope that you can find a group somewhere. If not, you might consider a therapist as at least you would have someone to help. Good luck to you. Your family loves you and that is very special.
  • TJC
    We all come to this point when nothing we try has worked and it is not easy, the alternative is to give up and that is no better. For the most part this is one big circle as we continue to try the same things as before and see if they are more effective, some opt for increased medication and try to live in that fog of existence. Other go down the surgery route and continue I what they perceived to be the answer to that illusive cure or even ease of pain and associated symptoms.

    We are usually the last person to know that we are depressed as others cope with our modes of surviving and it is not easy to admit to yourself that this may be the case and getter in getting better we are in need of additional support.

    Many with CP become understandably depressed over time as they themselves and who they were, disappear into history and we are unable to do as we once did, we have all been here and asking for help the first step in improvement. As new light begins to shine through, our mood may lift and we envisaged all the negative aspect differently.

    I have had my own condition 20 years and I too have moments of having had more than I need of my condition, this phase will improve hopefully as things get better.

    Take care. John
  • TJC,

    So sorry to hear you are going through all this! I can sympathize a bit as *I* was the active one in my family (law enforcement), weights, running, jumping playing etc. due to my job. I would initiate a lot of our "off work" activities, now I can't do them! My first fusion went great, almost forgot I was a surgery recovery type at around the 8 month mark. Then I had additional level failure, and other level issues. For me, narcotics only make me loopy, and the pain is still there, so I refuse those meds.

    My hubby one day saw I just looked REALLY sad...he asked about it and I told him in a blurt that I felt I was letting him down in many ways. Be it the activities we would enjoy (amusement parks, wall climbing, looooonnnngggg walks, sex!) aren't happening anymore. He was sooooo wonderful. He told me he didn't care if I was (sorry, not trying to offend anyone) in a wheelchair, he and I are one, and he is there for me as I am for him!!! Internally I know he misses some of our activities, hell, we go shopping and I can't handle more than 30 minutes and my back goes south! He is okay with it. I did get "self" depressed on our last shopping outing where he wanted to get a "riding shopping cart" for me...I did also get pissed at the thought of being in one at my age (47+). I guess I have to tell my brain that parts of me aren't in my upper 40's but much older. I am trying to adapt to other venues of activities, but mentally you have to realize that they are there! I hope with all these replies you are seeing that feeling of letting down our hubby, family etc. are NOT uncommon, and we need to "see" that and realize that we just adjust. I had a LOT of tears reading your post, and that of others in this thread. Many of us are here to listen and support - KNOW that! Take care, big *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • This post spoke directly to me. I've gotten to where every doctor I see, when they say how are you? I return with "I want a new body, do you have a total body replacement?". Seriously, these surgeries should come with a money-back guarantee or something, then we'd all be rich! I'm sick of doctors and surgeries and pain and not feeling well and not being able to do what I want to do too.

    I hate to sound ultra-depressive, but my take is that for me, every thing I have done with the thoughts of getting "fixed" seems to just make things worse, not better. My spine isn't cooperating. I would love...and sometimes do...blame the surgeons...I've had two so far...and have thought about trying another lately. My last two ACDF surgeries last June and August...the August fusion isn't fusing at all...and I've grown two pointed large bone spurs at the fused level, plus the level below the two fusions has collapsed. My neck has never stopped hurting and my low back has joined in again. My current surgeon wants to do another surgery...like two wasn't enough for me...to redo everything. He's always ultra-positive and has told me that things that are now evident just couldn't be the problem. I want to slap his silly face...since one visit, he even was making fun of me for asking if I should wear a collar. He doesn't believe in them. I think next week, I'm having a true coming-to-Jesus talk with him and telling him to cut the bull-shi@!

    This forum is a godsend and I love everyone. There's a wealth of information and all of you are so good to share and commeserate and listen or whatever we need. I try to help the newbies when I can and join in as a veteran too. My GP used to be a good sounding board, but lately, seems even he doesn't want to listen to my whining. No one can tell us what exactly to do, cause our bodies have a mind of their own. I don't know whether to throw in the towel and quit fighting it...and just let it be, take my lumps and pain...and make the best....or whether to keep having surgeries.

    I sure hope I make it to heaven, cause so far, my earthly life..in the spine department (and knees) has been a struggle. :) TJC, I hope you are doing some better. Hugs.
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