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Thread: What do you need?

  1. #11
    Dearest Kate - and everyone else -

    "Hope is like the sun which, on our journey toward it, casts the shadow of our burdens behind it. - Samuel Smiles

    _____________
    If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa

  2. #12
    Senior Member KDK513's Avatar
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    Beautiful thoughts everyone!

  3. #13
    Moderator Obieone's Avatar
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    I usually haven't got a hot clue what I need ....until after the fact... I do know I need to feel validated!! I know I need you guys ...

    Probably take you all for granted...don't really mean too...but I do know I'm awful glad your here to "use and abuse"!!

    Thank you!

    Obie

  4. #14
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    I agree with Soulmate, I need a vacation! Some place alone and warm, lots of sunshine, no doctors, no fighting with insurance companies and no teenage kids! It's been 18 months since Joe's accident, and I am exhausted. I miss all of you and the support I get here. No one else understands how hard this life can be except fo all of you who are in the same boat. Thanks for being here!
    Stacey

  5. #15
    Originally posted by Stacey:

    It's been 18 months since Joe's accident, and I am exhausted.
    Stacey
    Stacey,

    This sounds very familiar, and it also sounds dangerous. You are very new at this SCI life, as am I. It's a hard road for sure.

    Since this is in the caregiver forum I feel completely qualified to espouse.

    Your recognition of exhaustion is a valuable indicator of the need to take care of yourself as well as your husband. My wife is 14 months post injury, and I share the same feeling of exhaustion. It's not just physical, but the emotional drain from fighting with insurance companies, consulting with doctors, locating quality PT, home modifications...

    It all drains you. And yet, you feel as if you have no room for complaint or expression of your grief. You can look at the burden placed on you and compare it to the burden placed on your spouse; and feel guilty about needing to take a break or thinking about yourself at all.

    I'm learning, very slowly and very reluctantly, that I need to take some time for myself. I need to wake up early and go for a run, spend some time in the gym, sit down with a book and not think about SCI for a few goddamn minutes each day.

    When I don't take the time for myself, I feel resentful and angry about my wife's injury. When I do, I can embrace the fact that she is alive and doing well, and able to enjoy life to its fullest, despite the injury.

    Bottom line: It's important to take care of oneself also.

  6. #16
    Moderator Obieone's Avatar
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    Espousal thank you for articulating so well those feelings we all share! I was feeling guilty for having some feeling of relief when my husband finally went into the hospital as a result of complications that arose after a very major surgery in the Spring of last year! I was tired and spent from having kept him home probably longer than I should have! It was a good decision as its turned out he is recovering very well and we (the family left at home) have had a chance to recover as well. Guilt is emotionally and physically draining and needs to be managed very carefully!!

    Aren't we fortunate to have "the Santuary" to come to and share these thoughts!

    Be well all!
    Obie

    P.S. I went back and counted the number of times I used the word "feeling" in that post ... many! Maybe we should call this the "Feelings Santuary"...

  7. #17
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    Espousal, I feel so much guilt whenever I think about doing something that Joe can no longer do. I would love to start running again, but I don't know if I could do it. We used to do that together, I guess I feel I would betraying him. I know that I need to do things for myself, I just don't know how to take that first step. It is so nice not to have Joe depressed, he actually is happy some days, I don't want to set that back. But I also have the resentment and anger that I no longer have a life of my own. IT's not just Joe, it's also the kids (6 of them)and trying to keep it all together. I am also an oncology nurse. I feel like I give so much of myself to others throughout the day that there is nothing left for me.

    HOw have some of you overcome the guilt? Was your spouse angry with you for soing things they can no longer do? That is my biggest fear.........
    Stacey.

  8. #18
    Senior Member kate's Avatar
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    Originally posted by Stacey:

    I would love to start running again, but I don't know if I could do it. We used to do that together, I guess I feel I would be betraying him.

    How have some of you overcome the guilt? Was your spouse angry with you for doing things they can no longer do?
    Stacey and Espousal (and everyone else who might be thinking through these kinds of questions)--

    I'm only a little ways beyond you; Bruce got hurt 3 years ago this Sunday. There are still some things that I avoid that I used to do with him --the sauna is the best example. It was our place to go and be quiet together, or talk, or rub each other's feet, or have the fight we needed to have.

    In the years before the accident, we went there together a LOT, like, a couple of times a week.

    It took me more than a year to go back alone. Partly it was guilt, but mostly I just didn't want to be reminded so hard of what I'd lost. I think that picking up any piece of my old life is painful . . . because if I'm doing it alone, it's not the same.

    I'm lucky, because Bruce has never, ever been resentful or rude about this stuff. He assumes I have a right to be happy, and he expects me to do what I need to do to get there. I want the same for him . . . but I can't enjoy the sauna in the old way, and I don't much go there anymore.

  9. #19
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    Stacey, it sure sounds like you have your hands full! At first I felt wierd also with doing physical things with my brother. But life must go on and I felt that maybe I would be accussed of coddling him, so I just started doing things. For gardening it was 'just to keep me company and get some vit d-and then ask him to hand me something or opinion on something. Also just told he had to be my escort at a street dance/concert cause I was afraid to go alone, and after a beer we just started dancing. At the gym, he gets therapy while I use the treadmill and machines-then he coaches me on the freeweights. I think he likes bein' the coach. And when I feel the need to get away for a few hours now I just say that, and he has never objected or 'made' me feel guilty. I'll usually provide an entertainment for him. Maybe one of your children could spend some quality time with him while you get out? Next time you are due a gift like b-day, mother's day, etc, try asking for a time out like a massage, concert, bookstore visit, museum visit, some thing that's for you and away from home. I guess it finally dawned on me that he probably wants some alone time as much as I did.

  10. #20
    For Stacey, and all our newer members - I've bumped up this topic, "On Caring from a caregiver', as it is one of the true jewls of this forum, written by one of our first members here.

    _____________
    If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa

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