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How long and how ?

nursedina001nnursedina001 Posts: 235
edited 06/11/2012 - 8:48 AM in Chronic Pain
How long after your injury/diagnosis did you accept the fact that your pain was chronic and be with you forever?

I am two years out and three surgeries from my back injury. I am just starting now to accept the fact that this is my new life. I'm not even at total acceptance yet and I'm sure how to get there.

For those of you who have accepted it, how did you begin to accept it ? I am having a very very hard time realizing that not only will the pain never be gone, but I will never work again.

Asa widow with three teenagers , two of them in college , and te primarybreadwiner who loved loved loved her job as an ER nurse, I can't accept the fact that I will not work again.

Any advice will be appreciated !



  • I've had chronic pain with my knees since before I was a teen, so I've always lived with some sort of it, and knew I would always have that pain for the rest of my life. As for this new spinal/nerve pain, I've only been dealing with it for 3 years, and only accepted that I would have it for the rest of my life months after surgery, when the pain just did not go away. As for working/not working, I'm going through that right now. In my mind I've accepted it, but not yet in my heart. I just went back 1/2 days, it's only been a week, but am feeling like I was when I stopped. So I still have a way to go with fully accepting that I may never go back full time, and I'm only 37.

    People have listed in the past, the 5 steps of mourning. In order to fully accept our new lives, we actually do go through these steps, as we are mourning the loss of our old selves and life:


    You will find people here who have been dealing with spine/nerve issues or 20 years and still not fully accepted it, and others only a few short years who have. It's a very personal journey. But once you've figured out a way to live life the best that you can in your "new self" it does get easier. So I've heard. :)
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Anger
    Stages and seem to flip flop back and forth between all of them.
    I have been this way for years and years, but I could always handle it for the most part. It wasn't until a couple years ago when I could no longer ride my horse or do the gardening I enjoyed that I really blew a gasket about it. I am still flip flopping all over the place with that and so many other things. I can tell you that it apparantely takes a long, long time and I'm not personally convinced that you ever do accept it...
  • smiley735 said:

    People have listed in the past, the 5 steps of mourning. In order to fully accept our new lives, we actually do go through these steps, as we are mourning the loss of our old selves and life:


    You will find people here who have been dealing with spine/nerve issues or 20 years and still not fully accepted it, and others only a few short years who have. It's a very personal journey. But once you've figured out a way to live life the best that you can in your "new self" it does get easier. So I've heard. :)
    Well said! Could not have done better my self! Particularly the last line!

    "It does get easier. So I've heard."
  • Thanks for the replies!

    As mentioned above, I know I will never work again in my head, but my heart? .....well that's another story.

    I lost my husband a year before my back injury. I hadn't even fully figured out who I was as a new widow at 38 years old, when I was struck with having to figure out who I was as a disabled person with chronic pain.
    I'm not sure I will ever get it but I really want to, not only for my own sanity, but for my loved ones who I constantly send mixed messages to.

    I am going to see a psychiatrist and a therapist in the next few weeks, and hope that they can help me through this maze.
    Reading all the posts on here always makes me feel like I am not so alone.

  • You certainly are not alone in pain, we're always here to listen and talk!! I'm so sorry for your loss, and then having this toss your upside down life in yet another direction. Like I said, we are always here. I wish you luck with the "head" doctors, and that you find the help you need from them!! A lot of us see some sort of mental health professionals, I find it has helped me, I wish the same for you.

    And, lol @ Frog, we do need that "agree button" don't we?! :))(
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • I swear I've looked everywhere! I know it's here somewhere.


    I am so sorry for your loss. It is never easy to lose a loved one. A spouse, well unless you have lived it one can only imagine, and quite frankly who wants to.

    So here you go again, searching yet again for your identity. Am I right? I strongly agree with the psychology route. I use it myself and wonder what the heck took me so long. I personally think it would be great if you could find someone who also specializes in pain psychology but maybe you've already found someone you want to use.

    Either way just remember finding the right psychologist is a lot like finding the right surgeon or doctor. Sometimes you have to try a few out. Find the one that is just right for you.

    Either way, just know we're here. For a friendly chat, to vent or just to hear someone say, "I agree." (If I could just find the button.)

  • I had surgery 2008, but have been dealing with the pain since 2006-07. It has only been in the last 6 months that I have noticed my acceptance of my life as it is now. I still have my days where I have pity parties because I miss my old life when I could do alot more than I can now. I know what my limitations are now but still I find that I push those limits. Sometimes the pain is worth the price of pushing those limits because I feel "normal" again for just a few minutes. It has been a journey to get to this point and a lot of tears but I am ok now with how my new life is. It is better than no life at all and I always figure when I am feeling down that someone, somewhere, is alot worse off than I am. Once you learn what you can do and not focus so much on what you can't do, it does get easier. I too thought I was going to get better. After a lot of time hoping, I finally starting getting it. It was as good as it was going to get.
  • quite awhile, in part due to being lied to by my surgeon. I was told that it would take a year for the fusion to "heal" and then at the one year mark, was told that the ongoing decline was due to nerve pain and it could take up to two years to recede.
    At the almost two year mark,and after many months on unexplained decline, I sought out the opinions of several other surgeons who told me the real reasons for my continuing problems. Post op Cauda Equina Syndrome.
    Since then I have had to make adjustments in my life, and how I do things , how often I do them and at what level. I had to work my way through those stages of grief and anger , and most chronic patients do,to finally come to accept my new normal. My family however is still adjusting and at times it can be frustrating for all of us.
  • My spine problems started in my mid-twenties, but the really serious one happened when I was 27. I had a herniated disc that kept re-herniating every few months, and after 2-3 years of conservative treatment (traction, heat, NSAIDs, etc.) I was told that my problem may well end up being a lifelong one. I didn't like the sound of that, so I went to see a neurosurgeon back in the UK (one of the best), and he told me that I had disc material hooked around the nerve root at L5-S1, causing constant nerve compression and pain. He said that while he couldn't give me a new back or relieve all my pain, he was confident that surgery could relieve it by up to 70%. After the surgery (decompressive laminectomy) my leg pain greatly decreased, but my back pain got worse. It was then that I started in pain management, and the doctors told me I had nerve damage caused by years of compression and injury to the spinal nerves.

    I'm nearly 47 now, so it's been around 20 years for me. I have accepted that I have chronic pain, but I'm still hopeful that I may get better - not completely better, just better than I am now. I now have a load of other issues to deal with in both my lumbar and cervical areas, not to mention having been diagnosed in the past few years with hypertension, gout and GERD. The jury is still out as to whether I'll benefit from surgery (I'm currently seeing neurosurgeons, trying to get a clearer idea about the pros and cons). My pain is being 'somewhat' managed by a PM doctor, but I have to put up with a lot of pain that might be better managed if I lived in a country that allowed prescription of stronger medication (no Schedule II drugs for non-cancer patients here). I can still walk and get around quite a bit (which has surprised quite a few of my docs), so I'm lucky in that respect. I'm still struggling a bit to get the hang of living with all these new problems on top of my spine pain, to be honest, but I'm determined to get the most out of life. The biggest things I've learned over the years are that you have to do your best to remain as positive and active as possible, despite the pain, and you have to educate yourself regarding your condition/s.
  • I think I've come to accept it for the most part, but I am angry, sad, etc. about it.

    I am the mother of a 14 year old and a 9 year old. I had my children young so I could so all the "fun" stuff with them. I will never go on a roller coaster with them, jump on a trampoline with them, dance with them, walk an amusement park with them, kick a soccer ball with them, pick them up and swing them around, go hiking with them, walk around the mall with them, the list goes on. Instead they put my socks on for me, pick up things that I drop, get the pots or pans I need from under the counter, carry the laundry baskets, grocery shop with me (unload the cart, put the bags in the car, unload the car), etc.

    I was once a Mother that could go grocery shopping (do all the loading and unloading myself, at times with 6 grocery bags on each arm), clean the entire house, then cook dinner, and not be in the least amount of pain at the end of the day.

    I am having an extremely hard time coping with the fact that I am forever changed. Even if I finally find a surgeon to operate on me, there is no guarantee that I will be fixed. I could be the same, or worse.

    Thank you so much for posting this topic. I am so sorry for you, and for the pain you are in. I also can't begin to imagine what it must have been like to lose your husband. I am sorry for your loss. :(

  • I agree with alot of the comments already made about how accepting our chronic pain can be a problem.

    I first had back problems after having my second daughter (she's now 23!). 15 years ago my back 'went' and after a period of rest, everything seemed to be fine.

    However, 5 and a half years ago my back 'went' again (while opening the dishwasher door of all things) and the pain did not go away. After a couple of weeks I started getting sciatica down my right leg as well. I didn't know where to put myself. After 5 months of this I had 2 discectomies within a month of each other (cos the first one failed). I've tried every conservative treatment/pain meds since then, but nothing took the back/leg pain away.

    In July this year I had a 2-level fusion and, as has been said by someone else, I also have pushed myself on occasions to find out what my limits are. I am still in recovery and I understand it could take up to 2 years to be fully 'fused'.

    What I'm trying to say, in a very roundabout way, is that I always had hope that I would get back to how I was before. It's taken many years, but only in the last 2 months have I come to accept that I will never be able to do some of the things I used to enjoy - unless I suffer for it afterwards with increased pain.

    I'm having a hard time with work issues at the moment and it's because of this that I have now put the 'disabled' label on myself. Unfortunately this has been put upon me by others (my employer), but when I analyse the work tasks I have to do, there are some that I know I cannot do any more. It's unrealistic to think that I can now. I am still hoping to go back to work because without it, I would feel like a failure, useless.

    It has been hard to reach this point and I will be honest and say it has depressed me many times. For example, I used to love spending a whole day gardening, but now I have to break it up into 20 minute chunks, rest, then do some more. Even doing it this way, I certainly know by the evening or the next day that I have overdone it (yet again!).

    I am now trying to look at life this way....


    When I see awful things happening to other people on the news, and what some people have to live with - it puts my situation into perspective and I know I really haven't got anything to complain about.
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • Nursedina001,
    Although that failure concept that SueD mentions does make us all feel like that, it is not true in that in some way we have omitted something, that would have changed our destiny, we can only initially be reactive to our circumstance.

    I have had my pain 20 years and learned much about life, myself and those around me; healthy people are not privy to our learning. We should see the beautiful things we can still do and pain does prioritise things in our lives and that hierarchy of importance, things that were important are no longer and with our pain tainted vision we learn to look at the same things positively.

    I have seen others with debilitating conditions even terminal and for me I too have that order of how things could be worse analogy, in that way perhaps it makes me feel useful to others, even when in need myself.

    My son is a triple amputee and it would be inappropriate for me to equate my circumstance with his and to that end I support him in all that he dreams and wishes. As Sternbach said, pain is inevitable, misery is optional, managing and containing that angst, regret or frustration are all part of the improvement process, those issues only opaqued through the passage of time.

    We are all the same people inside, pain does not define who we are it is only part of us, we are more empathetic and support irrespective of our condition and because of it. All the good things I am have been enhanced, in that me, myself and pain, triangle.

    Improvement is about knowledge understanding and support, we have to live with the pain rather than in it, see our potential not restriction. Pain continues to be a blessing and a curse, a duality of existence vying for dominance; we should not allow it to let us live a little life. Use that tenacity and courage we all have to grasp every opportunity, total acceptance is a myth an unattainable ideology, just accept sufficient to get the job done. What do I need to do to get to where I want to be !

    Having lost 5 members of my family my heart goes out to you, you will find that strength and shine brightly like a star in the night sky for all to see, in memory of our loved ones, carrying that flag to the summit. I have eventful memory of the start of my journey and only now know the reality of its duration, it has been a team event, my wife, my three children and every single one of you who have helped and supported this family.

    Take care and be kind to yourself.

  • Reading all these replies has made me sad and con forted at the same time.

    It helps so much to know I am not alone in my journey. Trying to figure out who I am all over again. Combine that with the pain and illness that go along with it, and I guess I just need a better perspective .

    Some days I am lighthearted and do what I can, and other days I feel guilty for being sick and feel like a burden on my family. I hate that I never feel good, it always seems to be "something" you know!

    I am going to take the advice that I saw echoed a few times in these replies and try to celebrate what I CAN do, and not mourn what I can't do.

    Thank you for your condolences. It means more than you know to know that I am not alone.
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