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For Newbies, listen to the expereinced

Been in pain now for 4 years now, the "expereinced" peopel out there said you'll get used to it. They were right, listen to them. I won't write a book here, just that they were are right. I now live with a constant 5-6 and it is now "normal for me. Where 2 years ago I was house bound walking with a cane ,afraid to go anywhere, in the ER every month now I am almost ready to start looking or a job again, can walk without a cane and am no longer afraid of leaving the house. I know my limitations, when to take my meds, know when to stop. Basically I can function again and I guess I am starting to accept my condition and as has been told to me many times on this site focus on what I CAN DO and not what I can't.

Listen to them, they really do know what they are talking about.


  • You know even though I am a newbie, I believe it. I have just come to a point where I am starting to think about planning for how I am going to live the rest of my life. Figuring out how I am going to function to the best of my ability...

    You CAN'T just live in misery forever. You should WANT to move on with your life. I spent the past two weeks in a huge spiral downward of depression feeling that this chronic pain was a death sentence, and when a bunch of other uncontrollable negative things in my life happened all at the same time, I realized that even though I can't make it disappear I can control how I am going to deal with it. I can control my attitude towards it, and I can control my actions and choose the best options to minimize pain/give myself the best life possible.

    It'll take a little while to come to terms with it more fully...and I'm sure l'll still have down days, and bad days. My attitude change has already made a good difference in how I feel about my pain and my possibilities for the future though.

    Come to terms with things that you can't do anymore and be sad about losing them but then move on...find new hobbies and things to replace them. Don't surrender to pain and misery and sit on the couch all day, get out of the house or at the least get on the phone and interact with others. Lastly, remember that although you are trying to get your life back, it is a new life you are getting back, not the old one. My friend who also has chronic pain said it in an interesting way. "You have to learn who you are again." In a way I think that's true.
    Microlaminectomy and discectomy at C7-T1 on April 26th.
  • Amen, We never going to be what we were ! But we can be beter then what we would of been !
    Dealing with many of life situations when it gets bad while dealing with pain if you don't learn to deal with it and flip it to some positive to avoid the stress to further the pain level you simply destroy yourself,

    I have come to realise this myself, So many things have hapened in the past years ,death in the family , other events to follow while suffering with nerve pain and dealings with failed surgery , You come to realize you have to now react differently and deal with things in ways you never could probably before your injury ,

    Anger and stress is not an option for us , When the stress from pain is already there anything from the outside brough on us which is negative we avoid it at all cost,
    Only way to survive is keeping a positive outlook or pain and stress will consume you ,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • dilaurodilauro ConnecticutPosts: 9,859
    uplifting and upbeat post I have read in a while.
    MrGrouchin said:

    Basically I can function again and I guess I am starting to accept my condition and as has been told to me many times on this site focus on what I CAN DO and not what I can't.
    I have always believed that the first step any chronic pain patient needs to take is acceptance. From that point on so much can be opened and improved on. Just because one accepts their current status, that never stops a person
    from doing more and more.

    I accepted my status sometime 10 or 15 years ago. I knew what I could and couldn't do back then. Since then, I've learned more, so that what my plateau was back then, I am light years ahead.
    But always accepting my condition.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • TracyLynneTTracyLynne Posts: 598
    edited 02/12/2013 - 5:54 AM
    McGrouchin, it's funny you should post that; I was just thinking yesterday that despite 25+ years of chronic issues, I still manage to have a life. As Ron said, acceptance goes a long way when dealing with pain. Everyone is different, though, and everyone has different pain tolerance, nerve responses, etc., so it can take some much longer than others to be able to get to the point where they discover that. It is, as someone once said to me, 'a long, lonely road', but when you find a caring team of therapists, whether they be counsellors, massage therapists, physiotherapists, or even good friends who truly understand, you begin to see the silver linings in life.


    P.S. My very favourite quote, sent to me by my brother: "We must be willing to let go of the life we have planned, so as to have the life that is waiting for us." -- E.M. Forster, novelist
  • Indeed it is a long journey with no shortcuts. I'm still at the beginning and sometimes it's difficult for me to believe I would ever reach that level of acceptance. However your commments, MrGrouchin, give me hope. Thank you.
  • If I have learned anything so far is that acceptance requires control. If the pain can not be controlled acceptance is difficult. I finally just recently been able to control the pain. No matter if it gets to a 9-10 I can still get it under control. So I am no longer afraid to do things becuase of this. Above all this seems to be a very important part. It's taken me many years to find the right combination of treatments. I'm glad some found my post inspirering, never would have guessed it. Thank you.
  • Completely agree with your last comment about controlling the pain.For me it has meant I've been able to move away from a constant state of internal panic at not being able to live as I used to. Sure I've made big changes in the way I do things now but I now "know" the pain so it is easier to cope.
  • In other words, "just get over yourself". Got it.
  • Ms PixieMMs Pixie Posts: 154
    edited 03/17/2013 - 2:57 PM
    for an excellent thread!
    I am also at the point now of slowly reaching acceptance. As with you eaduby, I have just been in a depression since I refused to accept this and have been furious, sad, mad and broken over the fact that I never get well. I have tried everything and the last 5 years has been a constant struggle with the pain. Surgery almost a year ago gave me great hope, but unfortunately the road is still very rocky, and not too many things left to try. So I am left with beating this or letting it beat me.
    To me the "get over yourself" part is acceptance. I need to learn how to accept what has happened to me and my life. Accept the limitations this is putting on me and grieve the loss of things I can no longer do.
    But! I cannot get stuck in the grief forever. Im trying to come to peace and once again as eaduby said; I will be able to do other things and I can explore new options to have quality of life.
    There is a place and time for grieving over our loss, this changes who we are and dreams of another life is taken from us. But we have to move on and accept at one point, find new ways.

    Cause: car accident & genetics
    Effect: herniations C4-7, stenosis, osteoarthritis, myelopathy, neuropathy
    Non-invasive Treatment: everything under the sun
    Invasive Treatment: 2 level ACDF, C5 & C6, May 2012
    Moving Forward: SCS
  • chrisinphoenix said:
    In other words, "just get over yourself". Got it.
    Chris, I don't think that's what anybody is saying, especially not me. I have awful days like everyone, and there are times when I really need to vent, cry, scream, or whatever it takes to get past that. But on the better days, I don't get myself so worked up about the pain, and I definitely cope better.

    I don't ever like to judge how others are dealing with or managing their pain, because (here comes another quote!) “The person with pain is the only authority about the existence and nature of that pain, since the sensation of pain can be felt only by the person who has it.” ~ PAIN: A Clinical Manual for Nursing Practice (McCaffrey) 1989

    Take care, everyone.

  • That is not what anyone here is saying here. The message is "acceptance"---of the new you. Its knowing your limitiations and your body. Noone here is saying get over it. It seems as though you are frustrated and we are sorry for that. When you have back and neck injuries or whatever the case may be, For example: at 1st when you are diagnosed with say diabetes, you are frustrated but then through time,support, and education, you learn how to modify your life and learn the dos and dont's, being DX with herniated disks or even worse in some situations on here, your frustrated at first then you learn the do's and dont's and move forward in life changing and modifying what you do and how you do it, and get support---Acceptance and the new you.
    That is what we are all here for. Learning & leaning- not loosing the battle.
    The messages here were not intended as you possibly viewed them.
  • Ms PixieMMs Pixie Posts: 154
    edited 03/19/2013 - 8:28 AM
    This is a tough subject!
    And a really interesting thread since I believe us to be discussing the core of what chronic illness is: life changing, body and mind altering illnesses that put limitations on our lifes.

    What I hear in the thread is acceptance being interpreted as 3 things:
    1. Stop whining and move on
    2. Accept what you have, let it control you and ruin your life and you might as well give up now and stop fighting
    3. Acceptance as in understanding your illness to the fullest and how it interacts with your body, mind and life. Accepting a different type of life you might know have.

    For me acceptance is an emotional process Im currently in after 5 years of being ill and gradually getting worse. In the beginning I fought tooth and nails and knew very little about what happened to me. I had vicious spine flare ups that had me in bed first for days, then weeks, thats all I knew.
    Throughout the years came the realization of limits in what I can and cant do physically. Im not saying that as in I am giving up and letting this control me. Im saying that experience has taught me what happens when I ignore the physical limits I know have. I get a vicious back lash and is then far off worse then if I listened to my body in the first place.
    That is not giving up to me, that is acceptance of my circumstances and showing my body respect.

    I am not giving up on finding ways to live better with this: medication, treatments, new science etc, mind aspect, diet, finding new ways to exercise etc.
    I will try everything to keep as much of my life the whay it was.
    That to me is the fight, the dont give up!
    To find new ways to live a life I am happy with. Maybe that will be easier if I accept the physical limits I know have?

    And as in the previous post I made about this, this is not something that has happened overnight for me: the physical limits and the out of control pain that occurs if I cross them. It has gradually gotten this way over 5 years and I know with my diagnosis it will probably degenerate more with time. The 5 year period, numerous treatments, surgery, meds and experiencing pain out of this world has gradually put me mentally in this place of acceptance. I am not the person physically that I used to be, not even mentally. I have this experince now and it has changed who I am as a person.
    For years I fought this and have been angry and frustrated and sad (still am!), but slowly Im feeling acceptance.
    What I have now is what I have now and this is what I have got to deal with. It might get worse in the future, it might get better with new types of trestment, but I only have today and for today this is what it is.
    I am starting to integrate that into my persona, but will never give up the fight of finding ways to easier live with this.

    Cause: car accident & genetics
    Effect: herniations C4-7, stenosis, osteoarthritis, myelopathy, neuropathy
    Non-invasive Treatment: everything under the sun
    Invasive Treatment: 2 level ACDF, C5 & C6, May 2012
    Moving Forward: SCS
  • dilaurodilauro ConnecticutPosts: 9,859
    edited 03/26/2013 - 5:48 AM
    I love the way each of you have different ways to tell us all how you feel about this subject.
    When it comes to moving ahead, I dont think there is any right or wrong way to approach it, the fact that you moving ahead is key.

    Its sorta like you are running along at a nice gentle pace and all of a sudden there is this massive brick wall in front of you.

    On the other side is something that you really want (doesnt matter what that something is)

    Out come the choices
    - You can stop and not hit that wall, look at it for a while, take a few steps back but really are afraid to do what it takes to get by that wall. In that case you will probably plateau not really getting better, not feeling worse. You will also gripe some more, complain some more.. You look for the magic pill to get you past that wall, but YOU dont really want to or are too afraid to, because it might hurt!

    Then we have those that as they approach the wall, their minds are already thinking....Do I just run right at the wall to see if it collapses under my strength? Or do I think for a bit on how to get pass that wall. Hmmm. I could climb over it, I am a good climber! What happens if the rope breaks as I start to climb. Well, then I just make sure I have a rope that is strong enough to do what needs to get done. Instead of climbing, I could always go around the walls. Trouble there it is too dark to see whats on each side of the wall. Could I be looking for more trouble doing that. You have time to research to see whats it all about. Then you can test it. How? I am not going to say how. So, you finally decide you are going to do it.
    You start around the right side of the wall, looking good, but then you see there is no bottom ahead and the next ground is over 1/4 mile away.... Cant do that, back track, now go around the left side. There is some brush, but after a few yards, its all sunshine. You made it!

    Does that mean you are now painfree? No, it just means that you have accepted what you have and you have enough inner strength to push yourself to test yourself to moving on.

    I think, personally, I climb that wall, then decided to climb back and take the left fork. Here am I , doing pretty good,
    no real complaints.sure I have pain, every day, but I've learned ways to manage that. No, I cant do what I used to do, but I can do so much more than I couldnt before.

    We all have choices and in reality, they are not that difficult to make. You just have to want to.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • there is nothing easy in that type of choice, you have to weigh pros and cons and the choice is totally life changing. Sometimes we are not truly ready for some decisions until there is almost no choice to be made anymore. As in we fight it, fight it, fight it but with really bad results and then we realize that maybe we just have to make a really painful decision.
    That can be in regards to any tough decision in our life.

    Thanks DiLauro for a vivid description, I can see that brick wall! We all approach it very differently, depending on who we are and where we are with our illness, where we are in our life. I think we might try to run head on at some point during the illness and in rage wanting to headbutt it down. At a later time we might think, ah let me climb over, let me try, I know I can do it.
    For me, Im at that stage now where I'll do the left side too. Im ready to make peace with this. Not the pain, not the physical limitations who angers me and the fatique and groginess from meds. But Im ready to understand what has happened to my body and that my lifestyle is changing because of it.

    Im fighting like a mad woman to stay employed at my beloved work and if that day comes that I cant be there anymore someone can take that acceptance and shov it somewhere ( and I was the one bringingit up in the first place...).
    So anelsen15, I feel you on that one. It is hard to make peace with what this does to our lives and how it affects our families one way or another.

    Cause: car accident & genetics
    Effect: herniations C4-7, stenosis, osteoarthritis, myelopathy, neuropathy
    Non-invasive Treatment: everything under the sun
    Invasive Treatment: 2 level ACDF, C5 & C6, May 2012
    Moving Forward: SCS
  • This is the first time I have posted on the forum. I have been reading all of your posts for almost 3 years now. I guess my deciding to post is a level of acceptance for me. I guess I have finally decided to actually become a part of this community and not someone lingering on the outside, reading but not ready to accept that I am really one of you.

    I enjoyed this thread very much and will save it. I recently left my beloved job as a school administrator and have been approved for permanent disability. I am working on acceptance of my limits now. Thank you all for sharing.
  • This is really a great thread.......and the complete truth. Some come to accept our plight sooner than others can. Life can be somewhat less stressful once we accept what we have. I also realize I have my limits and plan what I can do each day accordingly. When I wake up each morning, I can usually tell within a couple of minutes what type of day it will probably be physically.

    Thanks McGrouchin for starting this thread!

  • Humble_PieHHumble_Pie Posts: 75
    edited 03/26/2013 - 10:24 AM
    The toughest part is getting over yourself and the constant focus on the pain. I felt like I had been dealt a death blow, that I was no longer a viable father or husband or man for that matter and that I was now just expendable. I couldn't focus on anything but the pain and misery and thats what my life became. I don't know why its so hard to accept but it sure was for me. Fortunately I got some help and figured things out before I lost my family. Chronic pain is a bitch for sure!
    Attitude is 80% of the game with this disease. My attitude caused me so much stress and grief which in turn caused more pain; Physical, Emotional, Psychological, Spiritual, You name it. Once I got my attitude straight, the pain wasn't nearly as hard to manage and people around me were more willing to help. Only took me about 6 years and the brink of losing my family and an amazing chaplain to help me see what was really happening in my life and pull my head outta my arse.
  • Thank you all so much for contributing to this wonderful thread. I'm just reaching the acceptance stage & hearing your voices on this subject is invaluable. For better or worse this is my life & for 7 long years I've allowed my pain to own it!

    I know this is an old thread but well worth reading...
    Osteoarthritis & DDD.
  • Think of it as the new normal
    My rx. Have some ice cream, be nice to yourself.
    Do not demand accomplishment from those with no talent.
  • dilaurodilauro ConnecticutPosts: 9,859
    Reaching that acceptance stage is so very important in the life of a "Spiney"

    From here on, focus can be on all the things you can still do and much more. I love to hear from people like yourself that have come to terms with their conditions and understand just how much more in life is joyfully waiting ahead.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Doesn't age play a significant role in reaching acceptance? It seems to me it's easier to cope at 60 with the perspectives of pain and increasing limitations for an unknown number of years: 10, 20? Afterall if you reach 80 it's quite fair to focus on what you can still do. But if you're 30?
  • dilaurodilauro ConnecticutPosts: 9,859
    and years of testing, etc until I finally had my first lumbar surgery in 1978 at the age of 28. Acceptance was not a question of age, but a question if you were ready.

    At the young age it was much easier to recover and bounce back. I had the mental approach that I was going to still plug ahead understanding some of my limitations. That same attitude has kept me going even as of my last complete hip replacement in 2013.

    I only wished I would have had all of my surgeries at earlier ages. As the years go bye, the recover takes longer and bouncing back takes a lot more work.

    So, you can see I had acceptable my situation by the time I was 30.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I've been dealing with my back issues since I was 19 (19 years) & I did accept it as what it is BUT acceptance does not mean that you have to live with extreme pain all of the time. Making pain manageable is key. There is one thing that I won't accept is that I CAN'T do what I used to. I refuse to let this control me...I just need help to keep my pain at a manageable level.
  • should be part of the acceptance of living with chronic pain, but rather acceptance is just acknowledging that it is there, and will be for the forseeable future . Once you learn to accept that it is there, those flares of intolerable pain seem to morph, or maybe it is our ability to adjust morphs over time, and they become a momentary incident, rather than consuming every thought .
  • sandisandi Posts: 6,343
    edited 03/11/2014 - 5:51 AM
    There were still plenty of things that I had put off because I was busy raising my four children, that I hoped to accomplish once they were all in school, full time, but so far, they are still hopes.......I don't know that age plays such a huge role in acceptance, I think it is more of an attitude of " it is what it is" and then figuring out how to either change our goals and plans a bit to accomodate our new normal or finding ways of overcoming the limitations. I have always told my kids, that the only obstacle they can't overcome is the one they put in their own path......and I believe that.
  • davrunnerddavrunner Posts: 478
    edited 03/11/2014 - 9:24 AM
    First, this is a great discussion with the ability to help many people.
    As I posted in a different topic, my acceptance has come with a lot of research and reading into the mind body connection and a few things that anelson said really hit home. In one of your posts you talked about taking on the burdens of loved ones and how it made you feel now that you can't do that. In what I've read you have to accept that you can't take the stress or burden as much as you accept your pain as a constant companion. Feeling guilty will manifest itself in additional stress and pain. The same thing about feeling shame at what you can't do or your limitations. Shame can also manifest itself in increased tension and stress and thus worse pain. I bring this up because I am the same especially where it relates to helping others. I have always been the one to jump in and help and now that I can't I can say it has been harder to accept that then the constant pain. But I know that not accepting my limitations and letting go of the guilt/shame will only make my condition worse.
    And the biggest hurdle for me is accepting help from others without feeing guilty or shame for needing the help. I am a work in progress and strive each day to let go just a bit more.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • dilaurodilauro ConnecticutPosts: 9,859
    edited 03/11/2014 - 10:47 AM
    There is no question that my football days created the problem with my spine. I had way too many head-to-head tackles where I would get up dazed, my hands numb and shaking. You can only do that so often without having a bigger problem.
    During my 4 years of football I had 6 concussions, 1 being a major one. Back in the 60's who knew about concussions. You took two aspirin and back to work.

    Its ironic. Over the years, parents have directed their children into sports. It was just one of the several avenues a child could take to learn about discipline, the respect for another person and more. But who knew that because of those sports, many young adults, and others are suffering because of that. My daughter played sports the way I did, hard and aggressive, softball, basketball, soccer, etc Now that she is in her mid-30's she has had 2 knee surgeries and has a few herniated discs that have not required surgery (yet) Was it worth it? My daughter says Yes, for me, were the hard aggressive years of sports worth it for me? Yes again. We did what we believe in then, how it turned out --- who knows something else could have also easily happened.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • dilaurodilauro ConnecticutPosts: 9,859
    I like your outllook...
    chrimv said:

    BUT acceptance does not mean that you have to live with extreme pain all of the time. Making pain manageable is key
    That is so true. Accepting your condition does not mean you have to live in pain. Anyone dealing with chronic pain for years, will find ways, research, look under every rock to find a safe way to manage all that pain.

    Look back at what we used to do, thats fine. I used to be able to pitch well enough for High school honors and shots at college scholarships. But I cant anymore, even without any spinal problem, its about the facts of mother nature.

    But that never stops me from finding ways to improve my daily life. Once I stop doing that, it would be about the same time they would have to put me in a wheelchair for good.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • and it is justified. There are ways to change the anger or channel it to a positive but it's a lot more complicated than I can explain on here. If you'd like the information on a couple of the nueropsycologist that I've been reading just PM me.
    You can't beat yourself up for the decisions she has made in her life, you'll carry that guilt in your body and it will compound your pain. Definately didn't mean to rub salt in a wound.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • I have a step sister, and like you, I tried to be a mentor and give her direction in her life, and felt responsible for keeping her on the straight and narrow path to a life.....and I tried with everything that I knew how to do, and then some more, but ultimately, they have to make choices . We can love them unconditionally, and give them our point of view, but ultimately, they will choose their own path.
    Your ability to be there for her, to offer her guidance and support is not contingent upon your being physically there everyday......you can always pick up the phone and have an honest conversation with her, that while you really would love to be able to be there physically with her, you can not, so you are doing the next best thing, and connecting with her in whatever ways you can at the moment. You can let her know that you love her, but don't like the decisions she is making, and tell her that you will support her as much as you are able but you expect her to do her part...
    It's alot of weight and responsibility you are carrying , on top of dealing with your condition. I feel for you.
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