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lisa burekllisa burek Posts: 855
edited 06/11/2012 - 8:34 AM in Chronic Pain
How are all of you accepting (or not) the changes we need to make to live a more "spine friendly" life? I am in the process of acceptance; it was hard getting to this point, but I know it is what I have to do. The toughest part is dealing with the wants of my 4 and 7 year old daughters. I also think that I am accepting my limitation better than my husband. When I mentioned total revamping of my gardens so I can better tend to them, his initial reaction was that I was being too careful and taking things too seriously.
How are you all doing with this tough change??? if you have accepted your situation was there certain things that helped you?


  • everyday i tell myself i can do what i used to, just have to do it in a different way. most of the time can't actually achieve desired result but won't give up trying.
    hardest thing for me i think is fact im gonna lose my job, until that happens i still think of me as my old self, and still think what ive got to do at work #o
    taking one day at a time, little steps, very small little steps into my new life.
    if i can be happy again i will know iv'e made it :))(
  • dilaurodilauro ConnecticutPosts: 9,875
    you have already taken. That is Asking how we accept our situations
    I sort of put people into three categories

    (A) Denial Way too many people are in this category and try to do everything possible. The types that open themselves up for ongoing problems and future surgeries.

    (B) Self Pity These are the folks that basically have given up. They just see themselves as never been able to do anything, and they just talk about how much pain they are in every day.

    (C) Fighters These are the folks that understand their situations, their limitations and learn how to adapt. Sure, many spineys may not be able to return to the things they did before, but they find ways.

    So, right now, I would put you in the Fighters category. You want to do as much as possible, but also understand that you cant. The idea of revamping your garden so it becomes spine friendly is a great idea. Doing that, you can still enjoy the gardening you like without having to sacrifice your body. The situation with your children is different. This is never easy. But I found out that without even having to say a word, children catch on early and are supportive. I had my first surgery between our two children. They basically grew up in a period where I was having spinal surgery every four years. They saw that and understood. While at times I felt guilty that I couldnt join them skiing or sledding or water skiing, it never stopped me from being there with them.

    There are many other little things that can make life as a spinal patient easier.

    - Keeping foods within reach without having to get up on a chair or stretching too far.
    - Hiring someone to do heavy indoor or outdoor work
    - Making sure you have different chairs in the house that are comfortable for you.

    This could go on an on, but the bottom line its creating an environment where in you can do the most without hurting your body

    The most important key in accepting all of this is having a positive attitude and a win-win attitude.
    Be honest, be true to yourself and your family and that will go a long way in the future.
    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 feel better already being put in the "fighters" category. You are right about the kids: mt first fusion was after my firstborn. I had the surgery so I could have baby #2 (the so-called clock was ticking). The kids are great about my back issues, it is ME who feels bad because I know what we could be doing and aren't because of my back and neck issues. On the positive side, both girls have taken an interest in cooking and that is something I am very happy to do with them!
  • I point to this, because it is a reason that I pushed myself for years, to do all kinds of things that were not terribly health for my back. And I allowed other to use that against me. The Attitude of Acceptance, allows me to realize when I am being pushed into something that is not good for me and to STOP and evaluate what is going on. It allows me to know that I can say no to something without guilt.

    That said - I also make sure that I am trying to do as much as I can, when I am able to. My daughter is now 16 and growing onto quite an independant women, and for than I am thank-ful. She has never know me as being able to pick her up and hold her. By the time she came along, my back was completely shot for trying to do that.

    With being a fighter, it is all about looking to keep going! Do anything that makes you happy and as much as you can!

    My wife knows how hard it can be for me to get started in the morning and today is another good example. Today- I took as much time as I could to just rest, stretch and get limbered up, before getting ready and heading to work.

    I guess in retrospect - Acceptance is like an onion, each time to think you understand it, you see another layer undernieth the layer you just worked through. It is a never ending issue!
  • I agree with you: i am not totally there in acceptance, but I am trying very hard.
    You are right about the kids; the are very "forgiving" about what I can't do with them. It is more of me putting a guilt trip on me! Lately they both want to have "cooking school with Mom" and that is great!!
  • I would agree it is a never-ending issue...mainly because no life is static. A variety of things are always changing, never staying the same. I'm willing to bet you could not tell me what your situation with your back will be in two years. It could be better. It could be worse. There may be a wonderful medical advancement that will help you that we haven't even heard of today. And so...we go on as best we can.

    I don't think about all the stuff I cannot do. I only look ahead and I think what I can do right now.

    You don't need to be able to run and lift and ride roller coasters to be a good mom to your girls. If you have the right attitude, you can be a wonderful example to them of how to cope positively with what life throws your way...how to have a wonderful, complete life, even if you cannot lean over to weed the garden or stand for hours at the soccer game.

    Kids understand. They are much less bothered by these things than we as parents fear.

    I guess as I write this I am thinking about what I have done so I can share my experience. I realize that I have not accepted anything pertaining to my back as a permanent situation. I think of it as a long journey. So far the first two trips did not get me to my destination...so I'm back doing research, figuring out another path I want to try.

    Of course there are things I cannot do...but I don't think of them in any permanent way. just like when you have the flu, you're laid up for awhile, and then things change. I feel that way about my spinal problems. There are other things to try and other medical professionals to go to...I'm not ready to give up.

    Both my surgeons told me that there comes a point where you have to accept that "this may be as good as it gets" and that nothing else could be done...and they both wanted me to try a spinal cord stimulator trial. I think they both would have liked it if I had just gone away, but I continue to see surgeon # 2 and the next time he decided to send me to a new pain management guy for some facet injections. The new guy took my case as a challenge, said my data didn't add up and he is very interested in trying to figure out why I continue to have pain. So...here I go down another path with a new doc. In the little time I spent with him when he was doing the injections, he already came up with two new things to explore...things the surgeons hadn't noticed. So here we go...and it is for this reason I am not willing to settle.

    So, in summary, I don't have any advice for accepting your situation. I don't think you're "there" yet. Your journey is still continuing.

    xx Gwennie

  • :D

    It will be a year labor day weekend since my pain started and my life turned upside down. I lost a dream job and income due to being out so much because of the sciatic pain. It's been quite the year for me.

    I've accepted what has happened to me. I'm old enough to know that when God closes one door (as painful as it may be) he always opens another one. If you think about all your issues at once it's overwhelming -- I just take it one day at a time and tackle something on my to do list.

    I was thinking of your comment regarding your children -- dealing with their wants and needs. Are you speaking about just taking care of them at the house or taking them to activities?

    What about your girlfriends with kids? Would they be willing to take your kids on outings that you aren't able to handle -- or maybe you go with them but sit on the sideline.

    I don't have children but I'm around them alot and I observe that as long as they're loved and paid attention too -- they're happy.

    Take care Lisa -- there are a lot of us out there fighting like Rocky to regain a new "normal".

  • Why don't you get them interested in being your helpers in the garden. You can talk them through what to do, when you can't do it yourself. They hopefully will develop a love of gardening, you can still participate and you'll have your beautiful gardens to enjoy -- a good family project.
  • Please refresh my increasingly forgetful mind. What are the reasons they give you for not being able to have surgery?
  • I am quite thankful that I can take care of my childrens' daily needs. Its just all of the extras (especially when school is out) that I wish I was more up to taking them to water parks, etc.
    Why do we subject ourselves to such guilt???
  • Hiya >:D< , I totally understand your situation :S , and you are not alone >:D< . Ive been thinking about the girls activities :? , take them to places, where you can just sit and watch :D , for example; Horseriding school, swimming clubs,dance classes, just a couple of suggestions >:D< . I hope this helps :D . Keep smiling through the pain >:D< :H .

    Angie :H
  • Hiya >:D< , Just replying to your original question :? , its a difficult one for me! I beat myself up for losing my career :''( , evreything i worked for , all the hard work i put in, its all gone :''( . I dont want to be this way :S ! Then i think to myself i am this way so get on with it :( ! Then i have some family and friends that just dont understand ~X( , which makes me worse and i end up back to square one :( , and its because i have them saying to me, its a shame that you lost your job, because of your illiness ~X( , you could do something else surely :''( , but at the moment i cant work ~X( , it wouldnt be fair on any company who employes me :( , i would lose to much time by being sick all the time :''( .I was told i am unemployable at the moment :''( They dont understand my pain either ~X( , because if they did they wouldnt even question my illness :B . I say to them :? , look " i cant help being this way :( " I dont want to be this way :''( " " but i am :( " and there isnt anything i can do to change that :''(But i can make good of a bad situation and thats what i try to do :D .Day by day i am getting worse and it is becoming more visable than it was :''( The way i walk, and pass things to people because i lose my grip alot ~X(

    TO PAPA RON>>>> i dont know which catergory i fall into!! :?

    Angie >:D< :H
  • About April, I felt the same way, I hit a wall, but the issue that for me came up, is that either I put up with this,, Or I make a decision to fix myself. I worked very hard to work through this and I slowly rebuilt my attitude that I could tame this problem! Once I had the attitude back, it has been all about ideas of how to fix myself.

    And so - I decided to register here, instead of lurking, because you all understand what I feel like, I don't have to explain. Only my wife cn look at my eyes and see the pain.

    After so many years of fighting this, it was hard to look this in the face and let it win. For it to win means I lose myself. So now, once I decide that I will win and it will not get me again, means that I have to keep looking for things that help me.

    I cannot fix yestruday! I have only today to make better for me and Tomorrow is only a possiblity.
  • its very hard to accept that your never going to be out of pain and that you have to make changes to you life .not easy!! i keep thinking i have done it then something comes along and i realise that i have not fully accepted it to make life a bit easier kath and i have bought a twin electrical be i have an electrical rise and recline recliner and we have put in a down stairs loo also having a car that you car comfy in helps too ..we just look at life now and then look a bit more to find the right chair /bed car etc in the old days we just bought something because we liked it but now it has to fit around me if you know what i mean! my advice is take one day at a time and just do what you can when you can and don't feel too bad if you cant do it

  • We struggle each day and the end we know we done what we could. Yes, there are times where we backslide and wallow in self pity and you know what?..it's okay and nobody can hold it against us because we have the right to grieve and reminisce on what we've lost. But it is so important to fill the loss with something else, something different and learn how to live in a different way. Our children are more resilient and accepting of change and all they care about is that Mom or Dad is there everyday for them. These kids are so smart nowadays and really step up to the plate in this regard. I know my situation has causes my kids to grow up a bit faster and become more self reliant, but isn't it a good thing? If all their clothes are dirty they can wash and dry their own clothes, and they can cook breakfast too. These are life skills they can take with them in their young adult lives. Something positive can result from from a negative experience, and everybody can come out ahead.

    See, after a long day and we turn in for the night, we have won another battle...we survived yet another day.
  • 8> One thing i have learned with all this and through life itself i suppose :B , is that "WHAT MAKES YOU HURT, MAKES YOU A STRONGER !!!!!!!!! :?

    Angie x >:D<
  • I know my kids are what gets me through each and everyday!
    They too have been very understanding and supportive.
    They are both learning independance and doing great at it.
    I have 2 kids (18&15). My son is leaving for college this weekend and I am so proud and xcited for him. Alot of people would cry cuz ones leaving the nest,but not me.
    I am confident in him and know he has my survival skills in him.
    Not just from my chronic pain but the many other struggles life has thrown our way.
    Being a single mom for years and surviving for all of us.
    Kids ARE more resiliant these days and even more than they get credit for.
    All they need is u to be there.

    My new motto is:
    I WILL do everything I CAN do and I WON'T do everything I CAN'T do.

    There are many basketball games and sr.year things I missed out on and he luvs me anywho.
    And my 15 yr old daughter too is very helpful and caring.
    I sit on a stool and have taught her to cook so she won't starve when I'm down and out
    and she luvs it.
    If it weren't for them I wonder sometimes how could I go on like this,
    They are my rock and my purpose in life.
    Like my son leaving, I feel I have made a major accomplishment myself,for making him the man I know he will be in life.
    I made it this far and with Gods help.... I'll keep going farther!

  • I am not near to it...

    I guess I am in the self pitty...

    I am in so much pain. Pain in the neck is the worst for me and not being able to move it as before 9 month post op.

    Tomorrow I am going to work and I am so nervous.

    Every time I talk with my friends I just think in my old me and it feels terrible. I want to hug and its painful why?

    Why did I have a surgery that have made me worst?


    I need to take something for the pain I can stand it anymore...

    I am sometimes not even able to watch movies because I want to be like them again.

    I wish I was able to accept but I am always feeling that I want to take the implant out! And feel as I was. I cannot concentrate with pain in the neck all the time and not being able to be spontaneous!

    I just don't want this. I thought surgery was to be able to do the things I like...
  • I am not near to it...

    I guess I am in the self pitty...

    I am in so much pain. Pain in the neck is the worst for me and not being able to move it as before 9 month post op.

    Tomorrow I am going to work and I am so nervous.

    Every time I talk with my friends I just think in my old me and it feels terrible. I want to hug and its painful why?

    Why did I have a surgery that have made me worst?


    I need to take something for the pain I can stand it anymore...

    I am sometimes not even able to watch movies because I want to be like them again.

    I wish I was able to accept but I am always feeling that I want to take the implant out! And feel as I was. I cannot concentrate with pain in the neck all the time and not being able to be spontaneous!

    I just don't want this. I thought surgery was to be able to do the things I like...
  • "hug" you're not alone. But we can't give up, where there is life, there is hope. Have you seen any docs and told them how much pain you are still in? Maybe gotten a CT scan or MRI of your neck? I've had two fusions done of my back, I'm two months out of surgery and am still in pain but I have to keep the faith that it's going to get better. We've been through too much for it not to get better. There is a Fighter in you Ziga, you just have to let that Fighter's voice shine and let people know what pain you really are in and push those drs to help you in whatever way that they can until you are satisfied with the result. There is so much beauty and possibilities in this world, giving up on it is not an option. Just know you are not alone. PM me anytime you need to talk
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