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    It's so hard, what keeps you going

    Struggle is an understatement. I know we are all challenged, but I feel, no, know how quickly I am losing ground right now.

    Can't keep up, don't know how to quit.

    There is no activity that does not have exquisite agony as a part of it anymore often lasting days past the brief interlude of distraction.

    So many of you are so upbeat I am almost embarrassed to write this, but who else could begin to understand.

    Committed to 6 more months of the struggle to get my doc to fight fro Prialt and am on it, but it is so hard, so hard. I am weary.

    I meditate, I so try to see everything beautiful around me, but I can't keep this up.

    How do you keep going? you've always shared my darkest hours and been kind, supportive. I am lost, I am gone, there is no light left in my soul.

    ket
    Last edited by bollefen; 13 Apr 2013, 11:15 AM. Reason: I type like shit
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

    #2
    I have a daughter that keeps me going without her not sure I could do it either

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      #3
      One day at a time. Say thanks to whatever god you beleive in for each little victory. Say damn it...its not going to stop me for each little set back.

      Accept the fact that you're not the only patient your doctor(s) have to deal with, and make the most of the time they give you.

      This is not how we expected or lives to be, but we have to play the hand we were dealt. Find a way to make some good in the world because you're part of it...

      Comment


        #4
        Originally posted by allenstevens View Post
        I have a daughter that keeps me going without her not sure I could do it either
        Same here. She is nine years old now and that keeps me focused on doing what's right for her.

        Comment


          #5
          bollefen, I so understand what you mean about the constant misery! As for what keeps me and maybe the rest of our SCI brothers and sisters going is what's already been mentioned. . FAMILY and FRIENDS

          Yes there's always the hope that I'll open my eyes one morning and they'll be news that they've found something to help with the nerve pain we all suffer from. So basically it's LOVE and HOPE that keeps me going.
          Courage is being scared to death but saddling up anyway. .(John Wayne)

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            #6
            Bollefen - I know where you're coming from...some days or really, for longer stretches, you feel miserable & want an escape. Then you immediately realize there is no escaping the pain & altered life of being a person with a spinal cord injury.
            C4/5 incomplete, 17 years since injury

            "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

            "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

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              #7
              My heart breaks for all of you that suffer from nerve pain. My son is in constant discomfort, BUT NOTHING like what you are dealing with. It's damn hard to believe that we can't come up with some little pill to help you and others with this shit nerve pain. My thoughts and prayers are with you, bollefen, and others in the hopes that you get some relief.

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                #8
                Day to day, my wife keeps me going. Minute to minute, it's often my dogs. I get over a lot of impulses while holding my dog.
                Played with bombs- No SCI, Brain Damage enough that I require a chair and a caregiver.

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                  #9
                  Nothing. I just know that every day is one day closer to death and relief from torture. Of course, I have no idea how much worse I'll get before that happens.
                  Alan

                  Proofread carefully to see if you any words out.

                  Comment


                    #10
                    This might sound absurd, or worse, but when my back is against the wall, emotionally, and I've run my play book and gotten no where, here's what I try to remember to do, on account of it helping a lot, in the past.

                    I force myself to laugh. Totally fake, almost angry laughter at first. But you know what? After quite a short while it becomes so ridiculous feeling it turns into genuine laughter. If I'm lucky enough to keep it going, it evolves into raucous chuckling and then into crying.

                    Then, I feel much better.

                    I don't know.

                    "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                    "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

                    Comment


                      #11
                      Originally posted by DaleB View Post
                      This might sound absurd, or worse, but when my back is against the wall, emotionally, and I've run my play book and gotten no where, here's what I try to remember to do, on account of it helping a lot, in the past.

                      I force myself to laugh. Totally fake, almost angry laughter at first. But you know what? After quite a short while it becomes so ridiculous feeling it turns into genuine laughter. If I'm lucky enough to keep it going, it evolves into raucous chuckling and then into crying.

                      Then, I feel much better.

                      I don't know.

                      I think the ultimate problem with being at the end of your rope is the lack of options. You don't have the ability to get away from the single path of misery you are on. Temporary distractions are just that. You have to find a more permanent purposeful mission that will shift your focus away from the death spiral to hope which leads to more can do type of thinking. Can do thinking attracts people which hopefully creates opportunities to be more purposeful.

                      I truly believe that isolation is the number one problem for SCIs. The physical stuff is a given that we don't have much control over but being cut off from pariticpating in life is just the worst. I guess sometimes we don't always have control over being cut off either but I guess that's where the fight is.
                      Last edited by Patton57; 13 Apr 2013, 4:46 PM.

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                        #12
                        Nothing wrong with all said here. Just a guess, but you may be taking too big of a bite to accomplish. 1 day, probably too big. Break the day don into smaller pieces. And focus on a piece or pieces. If still no success, my guess is, you still have the pieces too big. Lay down on your bed. Close your eyes. See if you can think your way through 1 of those pieces and visually process in your mind. Do NOT worry about physical motion. If succeed, try to see in same position on bed, you can neurologically make that happen, still with eyes closed. This all takes time and repetition. Probably even get pissed off at yourself. Keep working like this and maybe pieces come back together.

                        Comment


                          #13
                          Originally posted by Patton57 View Post
                          I think the ultimate problem with being at the end of your rope is the lack of options. You don't have the ability to get away from the single path of misery you are on. Temporary distractions are just that. You have to find a more permanent purposeful mission that will shift your focus away from the death spiral to hope which leads to more can do type of thinking. Can do thinking attracts people which hopefully creates opportunities to be more purposeful.

                          I truly believe that isolation is the number one problem for SCIs. The physical stuff is a given that we don't have much control over but being cut off from pariticpating in life is just the worst. I guess sometimes we don't always have control over being cut off either but I guess that's where the fight is.
                          Wow I couldn't agree more.

                          Comment


                            #14
                            What keeps me going is knowing I'm here one time (I know it sounds cheesy and cliche) so I want to make the most of it. I also don't want people to remember me as a gimp who did nothing with her life. I am thankful I have a pretty stellar life with good things happening and good people around me. I want to live a long time.
                            A dolla makes me holla, honey boo boo! - borrowed from Honey boo boo child

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                              #15
                              I don't know what keeps me going with my positive outlook, but I do have one. I'm definitely weaker than I was a year ago and there is no sign that the medicine I am on is going to be produced ever again. I have 3-6 months supply depending if I take full or half doses. But for some reason I see a light in the tunnel. Maybe because I drive. When I drive I feel absolutely normal, other drivers treat me as such too. The same thing happens on my E-trike. Although my legs don't move, people do not realize I can't pedal and I feel normal, they treat me as such, or it's just in my mind. Whatever it feels good.
                              I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

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