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How long does it take until your injury is not your life?

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  • How long does it take until your injury is not your life?

    I'm a c7 incomplete 1 year post injury. The trauma and rehab has been top of mind and conversation for a year now. My husband wants me to move on, to put it in the past now, to start thinking about other things, and also not to accept my current state, but just keep believing that I'll recover more.

    I can hang on to hope that I've got more recovery time, and I can believe a year from now will look different - and I work hard at that. But I find it very hard for my SCI not to be top of mind all the time, given it's such a physically present injury, with it's constant reminders. And of course I've got my sadness about the loss and fears about the future. On the other hand I do miss my life and would like to start to have some bouts of joy again.

    I'd be interested to hear from others how long it took them, if ever, to have SCI not be the dominate thought and topic of conversation, to get out of the grip of greif? Also, thoughts on helping spouses cope. I know it's his loss too.

  • #2
    I have an incomplete C5/6 injury and like you, I am one year post-injury. Even though my limitations are very minor in comparison to most others, they still dominate my thoughts and my life. I took anti-depressants for several months and they helped greatly to reduce my anxiety and grief. I am no longer anxious and I don't think I am depressed, but I struggle every day with my limitations. I do see improvements, but I cannot bathe or dress myself above the waist, cook, put anything away that is higher than my waist, or drive. My main problem is my biceps which aren't firing and although I keep looking for things to help me be more independent, I can find very little to overcome the lack of biceps. I have an appointment this week with an occupational therapist and hopefully that will help. We are also looking into getting a big bathtub (instead of our big shower) so that I can lie down and try to bathe without gravity being so much a factor.

    I guess what I am trying to say is that I have reached a milestone in that I have accepted what has happened and am trying to learn to adapt.

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    • #3
      Most studies show that it takes 2-5 years for people to feel that they have their life under control and can move on to not having the injury be the focus of their life. It differs for different people. It sounds like your husband is being a little to rigid about his timeline. Have the two of you had any counseling? He may be feeling that he is taking second place in your life to your injury. That may need to be the case for a while, but counseling and some help for both of you to find a balance may be helpful.

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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      • #4
        milkb,
        alot of it depends on you also, when are you ready to move on?
        We must reject the idea that every time a law's broken, society is guilty rather than the lawbreaker. It is time to restore the American precept that each individual is accountable for his actions.
        Ronald Reagan

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        • #5
          We are 9 months out (daughter T12). It is ALWAYS at the top of my mind. I can't see that going away for a long time and she is progressing well.

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          • #6
            You will move on when you are ready, only you can make that decision. It is a tough life but still very livable. I decided to move on and do what I want and enjoy, just jump right in with both feet and you'll be surprised. The more you can do, the more you'll want to be doing. Best of luck!

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            • #7
              At about the 2-year point it became the "new normal" -- it's always there, but it's not the dominant force of life anymore, it's just part of our family life.

              Accepting it and living with it doesn't mean we've given up hope for more recovery or a cure, it just means we're focusing on living the best life possible. It's not a conscious decision, it just happened. It will for you too, when you're ready.

              Best wishes.
              Ugh, I've been kissed by a dog!
              Get some hot water, get some iodine ...
              -- Lucy VanPelt

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              • #8
                at 1 yr post, you are still a "baby".....im almost 5 yrs post now...1st off, ur husband could be going at it from 2 angles... he could just be wanting u to be happier and reallize it is what it is, but by saying "move on, put in in the past"..are the wrong things to say.....if hes really that cold and just has that kind of attitude...hes an a$$%ole......for me, id say the 1st 2 yrs were hardest mentally for me, thinking about what id be doing at the moment if i wasnt hurt, wishing i could play with my kids, thinking bout all i lost with my career ($, insurance for family,etc..), looking around house/yard at what had to be done that i couldnt do...it was very consuming of all my thoughts....i cried often......it will always be part of your life, but slowly u will add other things along with it.......i hated going out in public....one thing i would NEVER miss was my kids baseball/soccer games...that helped me being around other people beside at therapy....conversations with people are always" how u feeling?, getting better?"....and then u tell them bout therapy or dr visits, yea, it gets old......once u start doing things u can turn conversations to something else.........
                u WILL become mentally tougher than anyone you know!!....i know i am!!.....im waiting for my call from vocational rehab, to start driving, gonna go to school, then back to work......things still bother me but i dont get depressed about things, i guess thats the acceptance part of it....im still learning how to live......
                dont give up on getting better....but dont just sit there either....the drs always said "1yr mark is about the end of recovery"...i say bull$hhhit to that!!.....dont let that sit in your mind!!....lay in bed nude/underwear, and start at toes, try to move flex muscles look for any twitch and if u get one, work that muscle, get the signals flowing....im doing at good workout in my pool 4/5 days a week...and its the best...get in a pool if u can....i also did/do "unconventional" things for excersise too....while wife was at work, id clean the house...mop the floor, windex the back glass doors, pickup toys off the kids floor.....think about it..it all works arms, shoulders and trunk......take one day at a time, the future will come, do something productive today for yourself that will make tomorrow better.........good luck, .......
                have your husband spend an entire day(from getting up to going to bed) never once standing up, in your wheelchair....no cheating!!..watch his frustration!!
                - Rolling Thru Life -

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                • #9
                  im moving into a decade post. every part of my day is directed to getting by despite the sci. how do you put it behind you when everything is affected by it? It is'nt my constant topic of conversation, I have interests and dreams that do not center around sci, but all things are influenced by sci. especially relationships with able bodied folks who even though they love you, are just sick of the weight of sci holding everything back. this site helps. the able bodied loved ones dont want to hear about it all the time. they want to move on. we cant though because every part of life is life with sci. I found I had to not think out loud so much, or save my related issues for ccc. you are so young in your recovery. you have far to go. dont give up on striving. dont put it out of your mind and motivation. maybe though there are ways to give the able bodied folks a break from hearing about it without neglecting what is the bigges issue in your life right now. dont become invisible though. you are still you.

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                  • #10
                    ps I had recovery up to five years later. (bowel control and sexual sensations and the ability to climax) I had given up on such, however I think it had something to do with condition. I was doing pool therapy and trike for several months when I began to notice some recovery. had I not made huge efforts to continue I would still be mostly in a chair. as it is I use my trike as a wheelchair. if I stop, I lose muscle and the ability to walk as I do now with braces and a cane. in general I talked less about it with my family, and just leaned into my task on my own.
                    there will be the regular trips to Dr, foley or cath issues, pain, a.d, and use of a chair or walking aids that will just have to be a part of living with sci, just cant get around it. getting back to driving was very helpful since I could then get myself to the dr or to the gym on my own without including family in my constant efforts. thank goodness for care cure. had a lot to do with "moving on".

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                    • #11
                      You are still learning to cope, and that takes time. Taking part in ordinary living activities can be as therapeutic as prescribed exercise regimens. You can do some living while things unfold. Take some "time outs" to smell the roses.

                      I can tell you that after 55 years of living with an SCI, attending to the related problems is as rote as brushing my teeth. It is part of my life routine. While tending to these things, my mind is reflecting on the movie I saw last night or whatever.
                      You will find a guide to preserving shoulder function @
                      http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

                      See my personal webpage @
                      http://cccforum55.freehostia.com/

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                      • #12
                        Things started getting better for me(coping) around 3 years.It still affects everything I do & want to do.I don't think I'll ever quit thinking about it,I don't see how I could,but it & its gifts aren't my topic in convos anymore.I feel it makes me feel worse to keep talking about,except on here.Good luck.

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                        • #13
                          I'm a c7/c8 incomplete s/p 32 years - my BD is 8/26/77

                          I've never felt sorry for myself. I flatlined during my haylow procedure. I have been given 3-4 chances on a 2nd life. It's not easy but life has not been bad. It's what you make out of it. My fiancee dropped me when I was on vent and humping guys about 2 weeks later. That was hard but I used it as a motivator. I did my own humping

                          I went to college 2 mths. after discharged. Worked on independence. When I started driving my world changed. Things or events happen for a reason in life. It's part of our journey in this life. *If you dwell to much life will pass you by.

                          Go Forward
                          Lynarrd Skynyrd Lives

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                          • #14
                            Life will get better 3.14159 years after injury. Things will start to come full circle at that time. I think that's what they told me in rehab. Or geometry. One of those probably.

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                            • #15
                              I'm 36 years post injury. For me, it is not about hoping it will get better; it is about maximizing my potential with what I have. Its not easy at first, but it does get better.

                              you are one year post, Still healing adn wondering what the heck happened. . This is a time when you should be working on getting as strong as you can. If there is going to be a cure, a person needs to be strong and in the best shape they can be to benifit by it. If there isn't a cure, we need to be strong to drag our sorry asses thru life.

                              I've known many who have had great "return" years post. For me, its not that their injury "healed"; Its working the muscle that may have forgotten its job after being traumatised for so long. I know I am getting stronger way lower than my injury after so many years. It's due to the fact that I am working my core muscles in a way I didn't before. Its more about exercising correctly than just exercising.

                              SCI Nurse is right about the counseling. It was of tremendous help for my wife and I.

                              You both are bewildered by the events of the past year. It's alot to handle. Being a C/7 you should be able to be completley independent . It may take some time, but it will be worth it. Everyone's right it will get better. I know for me, I doubt I would change this if it meant losing all that I have gained. Course there's a few things I would change lol. As Freebird said, it ain't easy but its not that bad.

                              It is a lifelong thing because it is a part of who we are. How we lable it is up to ourself. Presently, I am sure you are labeling it umm"dismal" That will change when you decide it is time. There is no timeline, its up to you.

                              Get strong, maximize what you have and the rest will follow.

                              Now smile, give your husband a big hug and kiss. Go out there and kick ass, you can do this. You're not alone, as you can see. We're all here to help each other. Patrick

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