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Thread: had to get this out of my mind

  1. #1

    had to get this out of my mind

    I feel kind of lost. I don't know why. I don't know what to do about it.
    I feel like my life is on a stand still. I don't want to give up and I war with myself between hope vs. fear.

    Sometimes it can be exhausting to have people always trying to say positive things like "you're inspiring" "you're so strong" "life isn't over" "there are plenty of people that live a full life" yea. I get it but it can still be exhausting

  2. #2
    I take it that you are recently injured? It takes time to adapt, no doubt. People just say things because they think something needs to be said. For me, just being alive and thankful for what I can do keeps me going.

  3. #3
    I had the spinal stroke sept 2016. I do try to just write it out.

  4. #4
    The first 1-2 years is definitely the hardest for most people. This has been documented in a lot of research, and is consistent with much of my practice as well. Your life is forever changed by this injury. What you see first is what you have lost...goals, life plans, friends, even family. The first year is often consumed by rehab and therapy and figuring out the logistics of life with SCI. Once you have that completed, you have to start looking at the rest of your life.

    What goals, life plans, etc. have you decided you have to give up? Can these be reformatted so that you still can work toward a version of these in spite of your SCI? Career? Sports? Travel? Relationships?

    This is not an easy time. It helps to have peers who have more experience and years behind their injury who you can talk with. You can find some here, and there may be a local support group or chapter of United Spinal Association near you that can be helpful. Counseling with a clinical social worker or psychologist, especially one who specializes in Cognitive Behavioral Therapy can also be helpful:

    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.

  5. #5
    if you can get out of the house for escapes, do so. I found getting outside was a huge relief from the four walls I saw everyday. With winter closing in, find your escape. Be it a physical activity, or a gathering of friends.
    Myself, jus doing yard work or something physically active, in the woods, fishing, or being around my friends did wonders for my depression.

  6. #6
    Sounds like solid advice from everyone thus far. You're early on in the injury, I felt pretty damn lost at that stage as well.

    You listed your occupation as a hospice nurse, if you are an RN you should definitely be able to work in the future, no matter what your injury level, if you want to enough. Might not be clinical hanging saline bags and administering morphine, but there is a shortage of nurses (at least in my area) and someone has to educate them all. And if you decide not to return to work (a perfectly reasonable option for many of us) you can find meaning in a host of other ways. A good CBT therapist like KLD suggested would be an excellent place to start helping you move forward.

    The way I look at it (which is quite biased because I was in one of these situations essentially when I was injured) is you are going through an unwelcomed and unexpected new phase in your life, but nonetheless it remains to be seen what this new change will bring. A year or so into a new relationship or marriage you have no way to know what the future will bring. Same thing with graduating from high school or getting fired from a job you've had for decades or going to prison. It's probably going to be worse, but you just can't really picture what your life is going to be like in a few years, it might be a whole lot better than you are imagining.

    Is it "a full life" as it seems some people suggest to you. For me, not really 10 years after my injury, but it's an acceptable life, there is still enjoyment and fulfillment, though certainly the damper has been put on many of the highs normal people experience and we get some extra new lows to contend with.

    If you're physically able to, I think graybeard's advice is probably among the best. I need to get myself some more physical activity, but just don't really have the time for it, though I get out into nature whenever I do have a brief break from work/life responsibilities.

  7. #7
    Senior Member bigtop1's Avatar
    Join Date
    Jan 2009
    Greater metropolitan Detroit area
    I too was a nurse. After joining the forum, I learned a lot more about myself, my injury and, life. Keep moving, do something every day. Keep your mind full of challenges and dreams. It will work out.
    I refuse to tip toe through life, only to arrive safely at death.

  8. #8
    Senior Member brian's Avatar
    Join Date
    Sep 2009
    Quote Originally Posted by bigtop1 View Post
    do something every day.

    This is key.

    I don't know what your situation is so some of this may not apply, but dear god DO SOMETHING EVERY DAY.

    Go to the store
    Go to the library
    Have a friend come over
    Go have coffee with someone
    Knit something
    Start learning a new language
    Join a club that meets once a week (maybe online?)
    Cook something new for dinner three times per week
    Read a book

    There are, literally, hundreds if not thousands of simple things you can do every day. If you don't think you can go outside, GO OUTSIDE! If you actually, for-real can't go outside, there's lots of stuff you can do inside or on your computer.

    What did you do before your stroke?

  9. #9
    thanks all ~
    I spend my days in the kitchen for now. I crochet, read ALOT, get online, chat with friends via text or FB. Reading is a huge "get away" for me but at times it can make me sad.

    I'm still not comfy with going out. My wheelchair is kind of bulky and haven't received my new smaller one yet. I can get over that at times. My biggest obstacle is my dad. He's the one that gets me into the wheelchair van and drives it. He's 76 and having back problems, hernia and is slowing down. So, I don't want to be a burden since it's hard enough with me living with him. My best friend is allowed (by my dad) to drive it. He trusts her but she's super busy so she's only taken me out once. I don't know if I'll walk again. But if I don't I suppose I'll learn more to become more independent and possibly work on driving.

    I was into my 5th week of a new job with Gilchrist inpatient hospice. I love talking to the families - especially the ones in a lot of denial. Gilchrist told me that when I was ready they'd find a position for me. .. I've also looked into Medical coding since it can be done at home. I have a friend that does that & does pretty well.

    it would be nice to have a pen pal that has gone through this; perhaps eventually I'll find one.

    Again - thanks for replying everyone.

  10. #10
    Senior Member
    Join Date
    Apr 2012
    Orlando, FL
    What is your injury level? We may be able to suggest things to do/
    Rollin' since '89. Complete C8

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