Is CP our identity?

I hear you loud and clear. It is too deep and perhaps too painful for me to think about at this moment. But I am glad you raised this again. I think I avoid looking at this.

I sometimes remember who I was, back in my 20's, and it's not just a matter of aging (although that's part of it), but when I think about it and briefly can remember something with a smile or a laugh and reconnect with my essence....my spirit, I wonder how I can get that back. Or more of it. I don't have the answer. I think it's a part of me that comes out on the "flying" thread. Maybe it's because there we do fly. We are not our pain on that thread. How can I/we make that more of our life?

I hope this makes sense, and relates to what you're asking, fatherjohn.

PaLady

I've lived with my disease for 10 years. In the last 2, it has taken away my job and much of my life. I've had a period of remission, and I keep hoping to find it again, and some days I feel like Ahab searching for his whale.

I want the freedom to be able to run again, there is nothing like that feeling of being free that running provides. I want one, just one day, for people NOT to ask "Are you feeling better today?"

Not sure if CP is more my identity, but to many, my causative disease is. Even many of the pains that ails me(my arthritis), I cannot treat in a normal way, as my disease has corrupted that. (Can't ever take any NSAIDS, gotta watch for my liver, as its in dysfunction, how fast does med act as it may not stay there very long, is it effective for intestinal pain)

The never ending, unyielding, pain is my big complaint. That is my hardest issue to deal with, and, it's just MHO, that no matter what caused the pain, there are issues of dealing with just that, even if the rest of the world see us by the other ailments...

I put this thread together last night when I was in a reflective mood as sleep was evasive like normal. Pete, I too have a backgound in psy. and social work, a double minor in college. That might show at times. At one point I was a chaplain at a hospital and led a cancer support group. A man who was a regular with the group came to the meeting one day and was extremely happy. When he shared why, I had to take time to reflect on his statement. He had just returned from the doctor and was given bad but to him good news. He was diagnosed with an inoperable aneurism and was told he would probably die from it. He was extremely happy because he had fought cancer for so long and did not want cancer to win. Now he was being told it would not have the last word in his life. I loved that guy's outlook. So I ask myself after 11 years of CP, how do I think about CP and how does that affect me. I try and look at my life as something other than CP, CP, CP, CP. I don't always win but I try. I have days that I wonder why I want to continue and my attitude gets directed by my andger and frustration. I have not had a full nights sleep in what seems like years. I begin to think that 5 to 6 hours of sleep is above normal. I'll quit here because this is what I sound like when I am struggling and fighting to be more than CP. Grown men do cry. Hope you are all having a wonder and blessed day.

My favorite saying is "it is what it is"....the other thing I feel and say is I just want to BE! It took me a long time to figure out what I meant by that....no conflict, no pain, no schedules....welcome the day and take it one minute at a time! Forget what happened 5 minutes ago and stop worrying about what is going to happen.....took a stress class years ago on mindfulness, thats the lifestyle they promoted. We have a lot to deal with everyday with CP, I get mad and very sad for who I used to be but on the whole I do stay positive! It takes effort for sure, especially when I find myself up every hour tossing and turning from pain when everyone else is sleeping soundly!
I do answer some people who ask how I'm doing with "as good as I can be"!
My Dream Day would be to wake up, stretch-no pain, walk to the bathroom-no pain, drink a cup of coffee-no pain, cook, clean, WORK, shop, go out with friends, walk until I drop.....yup that would be a GREAT DAY!
My standards have changed....I repeat again a good day is when my feet hit the floor and I can walk!
PA I can relate see now I'm rambling!
XXOO
Patti

I think CP transforms us and shapes us into who we are today, I don't know as I let it be my center of identy, but I alway know it is there some where! I often use edt's favorite saying " it is what it is" no more and no less. CP is there, it is alway there, it is just lurking just around the corner, waiting, and you know it is waiting, it is waiting for you to miss a dose of pain meds. or for you to do something you shouldn't. So you are for ever vigilant, knowing that if you mess up, it will pounce on you, and it will make you pay the price, And yet every once in awhile you forget, for what ever reason, maybe no reason, after all we are just human, we make mistakes. But one thing CP is not, and that is compassionate! It has no compassion at all, it shows no leniency, no mercy, and it is devious beyond understanding, you fail to be vigilant and it will strike at you with a vengence, and sometimes it shows its mischievious side an strilke you without reason. " it is what it is" no more and no less!

White Beard

PALady  in my first line I said CP shapes us, it transforms us into who we are today. Yes we are afraid, I am afraid of doing certain things, of making certain movements, I know all to well the price I will pay if I do! For good or for bad, that is who I am,  I think fear is a part of CP it is for me. It sounds like it is for you too! I dare say it is for most of us with CP. No body wants to be in pain! At least not the pain we feel! And we are all viglant to some degree or another, we are all afraid, CP has shaped and transformed us, it is who we are now! I don't look at it as being, "for ever vigilant" as a consequence,  it might be but,  but I just see it as part of who we are now! Crying is also part of who we are now, CP hurts, it is so much more than just physical pain, it takes away our old identy it shapes and transforms us, into who and what we are today! Yes the  memories also haunt me, and they  hurt me, they cause me pain, I remember well who and what I was before, but that is nolonger me, it hasn't  been for quite some time. The pain of longing for something or someone, the person that I once was, and I know that I  can never be that person ever again. And like you PALady I cry! and I am afraid, it is a very high price to be paid, but that is all part of who and what  I am now!  CP shows no compassion, no mercy, no leniency!  it is what it is!

White Beard

Now I bring up another subject...VISUALIZATION, this is a place where we can DANCE, RUN, JUMP, WALK...a place where the pain can't touch us just for a short while!

Love you guys, love that we are FREE to say what we feel and no judgements!  Everything posted makes total sense, THANK YOU for starting this broad spectrum topic!

XXOO
Patti

I let my CP define me way more than I should. It's just taken over so much of my life over the past two years, that a lot of times I feel like there is no separation between my identity & the identity of my pain. It's hard to let go, to step back, when it is constantly with you. Sometimes I feel like I just don't know who I am anymore. I hate it. I don't want people to see me for only my CP & I don't want to lose myself in the pain. I pray every day just to be a normal college student. I'm sick of people asking about my eye, but then not really caring about my answer, and of the rare few people who do care, I'm sick of complaining to them and causing them to worry about me. I'm sick of trying to pretend that I'm okay, while I'm screaming inside. I'm sick of doctors & meds, and side effects; of frustration, getting my hopes up and being let down; of not sleeping, not functioning, and not seeing properly; and most of all, of the pain. I want to be able to read again for FUN, rather than struggle to get through only a few pages of reading for school, before my eye gives out completely. I want to be able to struggle in school JUST because the coursework is demanding. I don't want my pain, I don't want my eye, I just want to be myself. I just want to be happy. But there is nothing more that I can do than that which I am already doing, so I do my best to push myself along, to not let it get the best of me, but deep down I wonder how much more this is going to affect me & my hopes and dreams. There I go again, letting it get the best of me & worry about things I cannot change, nor should be worrying about at present. I'm trying to learn to accept my CP & my life with it & I'm trying to conquer it, or at least desensitize myself from it. But, as you all know, it's not easy. At all. There is still a part of me that is not willing to let go of the life I was living before, and I think that until I can release this pressure & these expectations I have of myself, I won't be able to truly distance myself from my disease. Sometimes I'm just scared of what the future holds.

Skeye

Post Edited (skeye) : 3/7/2009 9:04:18 PM (GMT-7)

Skeye, I am moved by your words. I know we joke around on the thread about a virtual trip which helps add a balance of escape. I also know that at times, deep down inside, there is that faer and uncertainty and we have to live with some level of hope as White Beard says. How that works out for each of us is different. For me, my faith is strong and I find strength in it. It will be different for someone else. For the last few days I have been dealing with a mental struggle. No quick phrases would ease the inner turmoil. I had to go to work, again, and while there I spent time helping others deal with major issues that are part of their lives on this side of drug/alcohol addiction. That helped me as I fought my own inner battle. Work for me is an outlet because I am always helping others. It gets me beyond myself. Honestly, self is something that I am still learning to accept because of CP. Like White Beard said, there are few words that take away the trials of our new life. I wish I had wonderful words for you or others to take away the darkness of CP. I wish I had the words for myself. I think, this is just in response to your post, that if we lose that perspective of who we used to be, we could be in trouble. I want more than my identity with CP I want life. I will hold on to whatever I can to keep me from giving in to the life of CP. So when words won't work, how about crying together and letting the tears speak. Blessings!

Fatherjohn & White Beard,

Thank you for your kind words. The last several months have been very hard for me. I always had a very strong sense of self, and sense of purpose, which went hand in hand. In recent months, my CP had come to affect me in such a way that I was no longer sure that I would be able to fulfill that purpose, and with that, along with the continual denial of answers in terms of the nature of my CP, really caused me to start to lose hope, and honestly (with the additional 'help' of another event), some of my faith. That's really when I began to find myself lost. Recently, I had been regaining some of that hope, purpose, and identity (which I can partly credit to the wonderful support from everyone here), and am feeling much more like myself. But still, too much of my identity is my CP, and I'm still going through a rough time learning to accept and master my CP. Some times are definitely worse than others, and as you can tell, I was pretty emotional when I wrote that last post. I too wish I could take away everyone's pain and suffering & give them back the freedom of lives they once live and more! It's too bad our magic wands & magic carpets aren't any good off of the page!

Skeye

Fatherjohn, you are lucky that you have such a rewarding job! I understand how helping others can help you through this process as well. I have a similar outlet, except it's with helping to heal animals. There is no better feeling than knowing that you helped someone in need!

Skeye, my purpose and identity have been in the ministry of helping others specifically training and equipping those set free from addiction to set others free. I have been in the ministry for 26 years. I have been a hospital chaplain, social worker and a law enforcement officer during the same time. I don't like to admit my fears that some day, my cp will take more of the ministry that has been entrusted to me away. I want to encourage you to stay diligent with your academics and fight to keep cp from robbing your dreams. I am blessed to have a job that I can deal with my cp and still function at this point. I tell people I am not a workaholic but a ministryaholic. Let the ministry to animals continue to give you purpose as you move ahead. I don't want to ramble but some might question my faith if I share my fears and weaknesses, but I believe by being open and transparentothers can relate. Since coming to this forum, my prayer life has certainly increased. Blessings!

I have question, I know that CP has shaped me and transformed me into who and what I am today, I know it is ever present in my life, and with it, comes fear and longing, and crying, and it is  not just for the pain, but for the loss of my old self. But with that, does anyone else feel guilt? Like I do? Let me explain, as some of you might or might not know, I am in the process of getting a divorce, yesterday, my wife and I were doing some cleaning and working on the house to get it ready to put it up for sale. I did things I probably shouldn't have been doing, using a push broom and sweeping the floor of the garage, nothing  super strainious, but more than enough to cause me pain and discomfort, I continued till I could no longer stand the pain, so I came in took a percocet and sat down, I sat down at the computer, and was even at this site! But I felt guility, I should be outside working, helping, I am the one that filed for  this divorce, I am the one that should be making sure the house is ready to be sold. My wife came in, she saw me sitting, she didn't say any thing, she didn't have to, I have seen that look on her face a million times before. Things I should be able to do, I nolonger can! But I continue to try, and I continue to have more pain, and I feel guility about not being able to do the things I use to be albe to do. Heck our marriage, our relationship changed so much, after I went on disability, and not for the good either. I often wonder what role my CP and my disability has played in all this, way to much I am afraid, and I also feel great sense of guilt about that too! Right or wrong it seems for me, Guilt is also a part of CP just as fear is. But Guilt can gnaw at you, and undermines even ones most logical thinking. Guilt can destroy your self confidence, and build on your insecurities. It has me! And unlike with fear, Hope is of little value in fighting and controling it! I should be able to do this!  ( But I can't, it causes pain,  and I feel guility about it)  It is my responsibilty! ( I know, but the pain, and  I feel bad very very bad! )  Am I less of a man, if I can't? ( I am afraid of the answer, and I feel guilt) I know allot of my feelings of  Guilt because of CP are not logical, just as allot of my fears, but they are still there. As I said  CP shows no compassion, " it is what it is"!

White Beard