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Thread: Use it or Lose it ??

  1. #1
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    Angry Use it or Lose it ??

    After 16 yrs. of chronic pain from a spinal cord injury, I don't think I will ever get through to my wife how much this saying hurts. I've gone through many pysical theropathy sessions right after my injury that proved the more I did, the worst I hurt. I know it's hard for others to understand that the only way I am in the least amount of pain is sitting in a soft recliner all day, and I do hate the way that sounds. When I try to even walk a little, I feel like someone beat the crap out of me for 3 days after. Well, like my neorolologist says, ( IT IS WHAT IT IS) I have learned to accept this, but how do you get others to ? I have found the right med combo after all these years, and what I can and can't do to be in the least amount of pain. I just hate that it makes me look like a lazy bum !! Ok, I'm done with my self pitty, lol. Bill

  2. #2

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    Dear Burr...

    That is my life....bursts of moments lived...followed by the RECLINER...It really is what it is...there is no explaining it to someone else...It isn't possilbe...which is a sad truth....

    We know the true meaning...of the word...Endure....In my case....it's laugh or cry....I chose to laugh...so most people don't get IT...about my pain levels...and I don't look 'crippled'...so it is all in my head....Which is very true...the brain registers everything...and it is telling me that I hurt beyond what most people would wish on their worst enemy...

    BUT...

    So what...!...really....even if they did understand...it wouldn't make any difference...I don't think....After a while...everything becomes routine...doesn't it...even pain...yes we are the ones enduring it...but our mates are the ones who live with the consequence of our reality....from the other side....just the visual...of us sitting in our recliners...not DO-ing...what their heart wishes for us....we have our frustrations and tirednesses from our battle...but they certainly have a different kind of frustration....without the visceral jolts we get as reminders...if we even forget for a moment....

    I remember once going to a rodeo...the finals...I was with my friend we were late...as we hit the gates they announced her son's name...he was up in his event....she took off running....so did I...one step.....I forgot....as soon as that foot hit the ground...BOY Was I reminded....laugh or cry....I laughed....I missed the whole winning event....laugh or cry....laugh or cry....

    Mostly I laugh....but boy sometimes I want to throw the raving...whining...hissy fit...of the Universe....then I have the picture of me doing it....laugh or cry...certainly laughing...cause how high can I really Jump....NOT...how far can I really throw anything...including my body down on the floor....NOT....

    So....it is really a gift...this place...because it is where we can come...and have that hissy fit...I guess as a guy...you come to 'punch the dummy'...you wouldn't want to throw a hissy fit...there is a laughing moment....We all 'get it' and understand here....It doesn't change anything...but...in the moment...it CERTAINLY helps....and it is allowed...

    I always try and remind myself...that my pain does give me a tremendous gift....True Compassion....that is something many can never understand...not as deeply ingrained....as the vein that is embedded among the walking wounded...

    I feel for you...Burr...wish I could help...but the most I can do...is send you great heaping waves of Love....may you feel them washing over you....from this heart to yours....

    Blessings to all Beings....

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    Thanks Hummer for the understanding reply. I even get the feeling that some people think that I am lucky that I don't have to work anymore. It makes me feel guilty about not working. Surely their is something you can do I hear. I couldn't do nothing all day is another. Don't get me wrong,I am grateful that I receive SSD. I would much rather work, that's another statement that no one believes, isn't it ?

    I didn't write this as pity for myself, more for how to explain it to others, including my own family. Is there really a way to do that? I don't think so. Do others feel the same as you and I ? If not, how do they handle it ? Thanks again for your meaningful reply.

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    Community Member Diandra's Avatar
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    Hi Bill,
    Mark had shared this paper awhile ago and I found it very helpful. Page 16 is about how to deal with family and friends when it comes to intractable pain.
    I shared it with my husband and best friend and they both said it helped them to understand better. Hope it helps. I feel the same way you do....I hate feeling
    like a slug. It is very hard on one's self esteem.
    http://pain-topics.org/pdf/IntractablePainSurvival.pdf

    Take care, Diandra

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    Cool Welcome

    I understand the part about gettting disability, But i figure, I paid in, dearly, Why should I not be entitled to take it out early if circumstances warrent it. As far as wanting to work, I worked in IT and made in 1 WEEK what i get a month so those people can go jump in a lake. I am sorry to sound bitter, but people like that tick me off. let them walk in our shoes - I am sure their tune would change. On a positive note, I hope you are getting good pain management, Welcome to the forum, And I will keep you in my prayers.
    Blessings
    Alex44

  6. #6

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    Dear Burr...
    I have had people actually say to me...I'm so lucky I don't have to work!....The sheer stupidity of that statement...is what enables me to let go of any reaction....or attachment to what they have to say....What would be the point...Their mouths have proved...their minds are obviously incapable of discernment...

    I can only look at them and think of a quote by William Blake..."That which can be made explicit to the idiot...is not worth my care."

    As for their thinking...giving up your life for the benefits...that should have your laughter bursting their ears....and following them all the way home...

    We may have moments...even days....of accomplishing....but we aren't sustainable...We KNOW that...I am mostly alone...I may leave my house four or five times a month....so I don't get confronted...too often...with how other people think I should be...and it has gone on long enough that people kind of let it alone...I think too...as I have gotten older...people think....I am just older....another laugh....I had a brain injury...open skull....my hair grew back in...white....I got offered senior discounts 25 years in advance...still not there yet...

    Never for a moment...did I think you were wanting pity....just wanting sharing...and understanding...It is here in plenty....When I feel the need for human contact...I come here and read...not that much of a responder...but I come here...over and over...during the day....knowing my computer is connected to someone...which some how makes me not alone...with my pain....I do miss the family of humans that used to be here at any moment of the day...it is kind of sad...for me....that instead of 30 people on line at once....you may only have 3 all day...

    but...

    Things change....don't we know that..!....

    A Buddhist practice...Concious Breathing...mindfully following your breath....You....

    Breathe in calm...and Breathe out smiles...

    So...then....

    We aren't doing nothing.... We're breathing..!..

    Blessing...and Laughter.....sweet rest to us all........
    Last edited by hummer; 09-24-2011 at 05:12 AM.

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    Quote Originally Posted by Diandra View Post
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    Hi Bill,
    Mark had shared this paper awhile ago and I found it very helpful. Page 16 is about how to deal with family and friends when it comes to intractable pain.
    I shared it with my husband and best friend and they both said it helped them to understand better. Hope it helps. I feel the same way you do....I hate feeling
    like a slug. It is very hard on one's self esteem.
    http://pain-topics.org/pdf/IntractablePainSurvival.pdf

    Take care, Diandra
    Thanks Diandra for the site to read that paper. I read every word of it. It is very interesting. I emailed it to a friend of mine who has MS. I'm sure there is allot of things he can relate to also. My wife has been very understanding of my problems for the most part. I know that my condition gets to her at times also. I would say that everything that has happened has changed her life also. I do understand her feelings too.

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    Quote Originally Posted by alex44 View Post
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    I understand the part about gettting disability, But i figure, I paid in, dearly, Why should I not be entitled to take it out early if circumstances warrent it. As far as wanting to work, I worked in IT and made in 1 WEEK what i get a month so those people can go jump in a lake. I am sorry to sound bitter, but people like that tick me off. let them walk in our shoes - I am sure their tune would change. On a positive note, I hope you are getting good pain management, Welcome to the forum, And I will keep you in my prayers.
    Blessings
    Alex44
    Alex, thanks for the reply. I think I am getting pretty good pain control. Well as good as I think I can get at this time. I am at the point of not increasing the oxy that I take so as not to get too high of a dose that it makes the doctors uncomfortable prescribing too high of amount. I'm on muscle relaxers and depression meds for depression and nerve pain. There is some more other meds, but I'm not going to bore you with all of them. I'm sure you get the picture by now.

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    Quote Originally Posted by hummer View Post
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    Dear Burr...
    I have had people actually say to me...I'm so lucky I don't have to work!....The sheer stupidity of that statement...is what enables me to let go of any reaction....or attachment to what they have to say....What would be the point...Their mouths have proved...their minds are obviously incapable of discernment...

    I can only look at them and think of a quote by William Blake..."That which can be made explicit to the idiot...is not worth my care."

    As for their thinking...giving up your life for the benefits...that should have your laughter bursting their ears....and following them all the way home...

    We may have moments...even days....of accomplishing....but we aren't sustainable...We KNOW that...I am mostly alone...I may leave my house four or five times a month....so I don't get confronted...too often...with how other people think I should be...and it has gone on long enough that people kind of let it alone...I think too...as I have gotten older...people think....I am just older....another laugh....I had a brain injury...open skull....my hair grew back in...white....I got offered senior discounts 25 years in advance...still not there yet...

    Never for a moment...did I think you were wanting pity....just wanting sharing...and understanding...It is here in plenty....When I feel the need for human contact...I come here and read...not that much of a responder...but I come here...over and over...during the day....knowing my computer is connected to someone...which some how makes me not alone...with my pain....I do miss the family of humans that used to be here at any moment of the day...it is kind of sad...for me....that instead of 30 people on line at once....you may only have 3 all day...

    but...

    Things change....don't we know that..!....

    A Buddhist practice...Concious Breathing...mindfully following your breath....You....

    Breathe in calm...and Breathe out smiles...

    So...then....

    We aren't doing nothing.... We're breathing..!..

    Blessing...and Laughter.....sweet rest to us all........
    Hummer, I have been to allot of sites over the years, that when a new person starts a new thread, no one will answer. I get the feeling that they only reply to people they know, just people in their little click. It sure feels good to find this place that people will relate to your problems no matter who you are.When you said things change, it reminds of my last visit to my neurologist he made the statement that a lot of his long time patients, their brains adjust to their problems and they improve some, but not in your case. I wasn't sure how to take that. Is that a good thing or what ? There is allot of understanding on this board, I've learned that already. Thanks again for being here.

  10. #10
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    Burr, sorry I just now saw your post. One thing about our pain and disability is that we aren't the only ones dealing with this. Our families and friends have to adjust to the new us so we deal with our adjustment and their efforts to adjust. One thing I have found with my spinal journey and ultimate CP causing total disability the people that truly loved me and the ones that didn't care for me but for what I could do for them. My family was very understanding because they saw me go through the three spinal surgeries but it still took my wife time to fully accept my disability. It wasn't only her as my daughter asked one time shortly after stopping work 'how can you go from working to not working so quickly"? What she was taking in consideration was the 13 days I missed work in the first 3 months of fall term [I was a teacher] and the struggle it was to make it through work the days I could go.

    Be patient with people as it takes time for them to adjust. Be prepared to distance yourself from some as you don't need the negativity they bring. The pain and effects of the meds you deal with each day is more than enough to have in your life without keeping toxic people in your life.
    1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
    2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life

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