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Any joy left in life?

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    Originally posted by bollefen View Post
    I am sooo tired. Seems chronic pain has just stripped any fun and joy in life. Seriously.

    Do any of you chronic pain folks have any fun / anything you look forward to?

    Can't enjoy food, constantly nauseous or puking from pain, meds only help a bit.

    Big on wine but the various meds affect taste.

    Can't walk / enjoy photography.

    Really getting me down lately with spring coming and no life.
    Have you exhausted all options for your chronic pain? Not one medication works? Have you tried an anti-depressant? Some have claimed those work on nerve endings in some side manner.


      I think he's tried them Todd. I've tried to suggest a med he hasn't tried - sounds like the MJ might be the only one (if he hasn't tried that).


        Thanks all, both for support and a push.

        Freebird, I was a LRP in SE Asia and did a remote and back ~20km with a fractured leg, was old school before you were born. The pain in each step is like 3 GSWs (gunshot wounds) at the same time, actually worse as I know what it feels like, this is waaay past tough it out.

        Pain, neurologist, physiatrist doc is sending me to Yale for a pretty rare test, live look at the spinal cord / spine , thinks he may be on to something if so he thinks Johns Hopkins has someone who could help.

        Jody on the way to/from doc today I looked and will take a pictue for you.

        There are no more meds to try, btw. no med maryjane here but a brief test had it help with nausea, but not much else.

        It also looks like the dosage of Ketamine is above "safe" ?? So my scrip is reduced and I'm not getting anymore. Crap what will I do with the Ketamine Kittie Brigade???

        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


          Le Type love you dude! but my best gay buddie says I'm way too Bear and my wife thinks so too so no pic to get you going.

          death is easy, but final. Not suicidal just need respite

          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


            Take a picture for me too! I love your pictures.

            Could you get one of those scooters? I've seen some (my friend's husband had one) - went over all sorts of terrain, certainly would have done any walking path I've ever seen. She used to play with it - it really looked like a pretty fun thing.


              You have to take three pictures..take one for me toooooooooo....


                Originally posted by FreeBird View Post
                My life

                My dogs

                And I was given a 4th and 4th chance of life.

                It's in the mind. Don't let it beat you. There is someone worse off than you. I don't give up pain or whatever. I'm old school and I kick it's ass.
                I fail to see why someone being worse off should be of any encouragement?? and the poor soul that is on the bottom of that latter and there is no one worse off than them what do you say to them?


                  Someone else who can relate...

                  Job 6


                  1 Then Job replied:

                  2 "If only my anguish could be weighed
                  and all my misery be placed on the scales!
                  3 It would surely outweigh the sand of the seas—
                  no wonder my words have been impetuous.
                  4 The arrows of the Almighty are in me,
                  my spirit drinks in their poison;
                  God's terrors are marshaled against me.
                  5 Does a wild donkey bray when it has grass,
                  or an ox bellow when it has fodder?
                  6 Is tasteless food eaten without salt,
                  or is there flavor in the white of an egg [a] ?
                  7 I refuse to touch it;
                  such food makes me ill.
                  8 "Oh, that I might have my request,
                  that God would grant what I hope for,
                  9 that God would be willing to crush me,
                  to let loose his hand and cut me off!
                  10 Then I would still have this consolation—
                  my joy in unrelenting pain—
                  that I had not denied the words of the Holy One.
                  11 "What strength do I have, that I should still hope?
                  What prospects, that I should be patient?
                  12 Do I have the strength of stone?
                  Is my flesh bronze? 13 Do I have any power to help myself,
                  now that success has been driven from me?

                  It is tough when going through dark times, but as you know, you are not alone. You know the source of your strength and hope!?!

                  I hope and pray the docs at Yale are on to something...
                  The IceDragon Avatar best represents my constant Freezing yet Burning Pain...not to mention all the other sensations that come with neuro pain


                    First thing i do is make a list of everything Im grateful for my car,truck,dogs my son ....ect.
                    It helps geting me get my mind off pain.
                    Another thing I go to a support group on fridays with other sci people.
                    "Independent from the rest of the sheep"


                      Originally posted by bollefen View Post
                      Le Type love you dude! but my best gay buddie says I'm way too Bear and my wife thinks so too so no pic to get you going.

                      death is easy, but final. Not suicidal just need respite
                      Aww! Shucks!



                        I require anyone who mentions Job to give me a dollar. This has made me extremely rich and so I enjoy myself by lavishing this fortune in various ways. Try this at church. Mention that you have had Central Pain for twenty years. Invariably, the person will act pious, think in their own minds they are being insightful (they maybe should ask what the heck central pain is before advising) assume you have NEVER THOUGHT of reading Job and say, so wisely, as the designated sage "You should read Job. Then you wouldn't feel so bad". A few of these advice givers have actually lived to tell about it.

                        I also charge people a dollar for saying "But you look so good".

                        Between these two sources I enjoy fabulous wealth and divert myself by spending this huge sum.

                        Just kidding. I know you are hurting and I doubt anything said will help the pain. SCI pain is not just pain. The SCI is there also.

                        I don't know why we value life, but it is valuable and if we look in the dark corners, we will see some attribute to our character which we would not have otherwise had. This is a terrible price to pay for some seemingly insignificant trait. It gives us experience, but what human ever recognized the value of having had bad experiences. It is probably there, but beyond our comprehension.

                        I think a person is by nature either upbeat or susceptible to depression.

                        If you have something which is by nature depressing, ie unremitting agonizing pain, then it exaggerates any tendency toward depression.

                        I see bravery or courage displayed all the time on these posts. What it signifies I am not sure. We just have to trust God somehow, that he will make it up to us.

                        As to the book of Job, I read it, but so far it is not Job that makes me feel better. If I am suffering, I don't feel better to read about someone else who suffered. I think Job is best understood by those who have some other kind of illness than central pain. Who relates to physical pain in others while they are in deep pain themselves. If I am having a root canal with inadequate block, I am not thinking of the person similarly situated in the next operatory in the dental office.

                        Actually I do have empathy for others with central pain, a lot of it, but when the burn is really on, and you know what that means, I must confess I am thinking about numero uno. If anyone claims to be different, they are a better person than I am, or else they just don't have as much pain. I am sure there are those who will become angry at that statement and say "What do you mean, not as much pain, my pain is terrible", but for those who really actually have the really severe forms of Central Pain, they will not be angry, they will say the same thing, "Yeah, I know what you mean, when I am really burning, I am just trying to endure".

                        I confess to being a cynic. I have been the opioid route and it did nothing so I don't trust it . I just do not believe opiates are analgesic in central pain. There are so many here who feel otherwise that I sincerely hope I am wrong, but I have my suspicions. I do say opiates are sedating, but tolerance slowly develops and then there is addiction and so forth. As to neurontin etc. I again just perceive them as sedating, and quite expensive, with groggy headedness and drowsiness an undesirable side effect. This seems a sorry way to go about it.I say just find yourself a good sedative which is not so prone to tolerance, and try to avoid stress. I am very interested in your trying ketamine as I have considered it, but at the levels required to actually work, I am afraid life really would lose all meaning. I feel safer taking enough clonazepam etc. to sedate me at night, so the sheets don't burn so much, and then doing what I can to accomplish something, at a pace which matches realistic ability.

                        For me, intellectual activity draws my attention, so what is relaxing for me may be work for someone else. C.S. Lewis recommended placing yourself among some children at play when you are down.

                        I don't believe in being a big hero, or that everyone should write a book (Who would read such depressing stuff?) All someone has to post here is "I burn from CP, I endure it" and I know they are heroic. I don't need any more explanation.

                        These matters are hard to put in words. One reason is that I don't have it figured out yet. How do you figure out pain???
                        Last edited by dejerine; 19 Mar 2010, 2:34 AM.


                          Originally posted by djrolling View Post
                          I fail to see why someone being worse off should be of any encouragement?? and the poor soul that is on the bottom of that latter and there is no one worse off than them what do you say to them?
                          I agree. That is not how I like to do it. Many others do and it helps them feel gratitude. The gratitude is the desired effect in that method.

                          However, I knew someone soooo looooow, that he could sit on a newspaper and hang his feet over the edge! Guess what, he found someone EVEN LOWER!

                          It is all perception. His view of low was not the same as mine.


                            Many people find comfort in a comparative analysis that determines that they are more fortunate than one or more of the other people on the planet. I remember being a teenager lying in a hospital bed listening to a young surgical resident tell me why I should cheer up.

                            He told me of the man who said "I felt bad because I had no shoes. Then I met a man who had no feet." In reply, I asked of this young doctor, "Why is this story always told by people wearing golden slippers?"

                            The one thing we can gain from the burdens carried by our fellows is compassion and empathy.

                            "We have met the enemy and he is us."-POGO.

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

                            "Dream big, you might never wake up!"- Snoop Dogg


                              Pain minus the Suffering

                              My take on pain.

                              I can not compare pain. There is pain and there is suffering. I was taught that they are separate things. I try not to turn my pain into suffering.
                              Suffering intensifies my pain x10. Buddha said, "Life is suffering. Suffering is desire."

                              Whatever it is that I don't accept, causes suffering. If I do not accept my pain, I begin to suffer. If I am depressed I focus on my pain and begin to suffer. When I am having a bad day, suffering tries to creep in. I have to pay attention to my thoughts all the time. I use everything I can to avoid suffering. I can eliminate suffering to deal with pure pain.

                              I use my medications.

                              I practice my gratitude list every day.

                              I use meditation and image methods. (I posted this in another thread)

                              I imagine that my real body in not the painful shell I live in, but a frisky childlike, fun to have painless body INSIDE.

                              Remember when it felt good to have a body? That is my real body inside the painful outer shell case. Hanging onto, focusing on that, works when I summon the thought.

                              Again, I can not compare my pain to yours. All I know is my own pain a day at a time to a breath at a time.

                              I hope you find a 'good moment' now-and-then, to keep up the hope for another good moment.


                              17 years post injury
                              Last edited by JohnW; 18 Mar 2010, 3:53 PM.


                                Bollefen, sorry about this post and that you are feeling so down. I hope the new warm weather here on the east coast and sun is giving you a smile. I probably cannot add much more than what you already have in rich supply here:-), but here is a little more caring and support.
                                I tend to look at my depression from a biochemical perspective...what am I eating? Am I drinking alcohol, (a central nervous system depressant) and taking Vicodin or something else with CNS depressant effects? All in combination can dramatically worsen depression, breathing, fatigue..etc.Drinking makes it worse.. When in a lot of pain, I sometimes try to eat more carbos so question, what am I eating, and maybe too much caffeine, too much sugar, carbos? How can I get out in the sun more? What am I doing to try to increase exercise? What natural vitamins can I add to my diet, B vitamins for example? I tend to get anemic, so want to check this out with doctor. So it is just how I tend to look at depression.
                                Anti-depressants can do wonders for pain and for depression. Thinking of you... One day at a time.. And would love to see art and photos..