Post Edited (White Beard) : 4/22/2009 12:01:09 AM (GMT-6)
Welcome falling apart and it can be frustrating at times for most of us. I know when I got hurt and joined this clan of CPers I was only 41 years old and after all the stages of denial I went thru I finally just got plain mad one and day and made up my mind that nothing short of death was going to stop me from living the rest of my life! I knew I would have to change somethings and the way I did others but the biggest hurdle for me was simply acceptance and when I could admit to myself this was my life and the cards I was dealt and if I didnt speak up for myself no one else was either.
From that point one it got alot easier. I had been thru a long list of Docs and clinics there were NOT treating my pain adequately since I was so young,their words not mine here, I finally got mad and spoke the all out thruth to one of them one day that I was not going to live like this another day I did not deserve to be in pain no matter how old or young I was and if they didnt help me then living this way was NOT an option I was going to be choosing, Harsh words no doubt but I was literally at the end of my rope! I had 4 kids to raise by myself and if nothing else was right they didnt deserve this. He immediately put me on methadone and once we got it right my life was a total turn around. What I am getting at here isnt so much the fact that methadone is the greatest thing going but ADEQUATE PAIN TREATMENT IS! Most everyone I know who has proper pain treatment and is adjusted right on meds gets out there and does all of those things your not! I dont know how well your treated by your Docs but this can be the answer for you.
I know it isnt easy finding at Doc that cares or isnt scared to death to treat you even if it takes higher then normal dosing but keep looking. It is your life!
Then everything else came easy. I started asking when invited somewhere those very questions you are concerned about. Do you have somewhere I can lie down if I need to? Is there alot of steps or inclines I have to climb? Will there be someone that can drive me home if I get into a dire place? Is the bathroom on the 1st level an accessable? If you dont ask you dont know and you would be so surprised at those who are more then willing to accomadate you. The one thing I heard the most from the inviters was " Oh honey I am so sorry I had no idea you required those kinds of things and I will be more then glad to help" I am so glad you told me!
As for parks and public place the same goes,ask. I have found that I have to miss very little and the anxiety levels drop to almost nothing when I go out there as I know ahead of time what I am facing.
This thing called pain took enough away from me without me allowing it take my life!
Glad you found your way here and it helps to say it to those who understand since we have said it to ourselves way more then we care to hear it. LOl
Post Edited (skeye) : 4/22/2009 6:51:08 PM (GMT-6)
I've been crying reading these posts, I really feel for all of you out there with that much pain, I have odd days sometimes odd weeks where I can't get out but I am a long way from your level of pain. I just wanted to say you are a very beautiful, warm, caring, understanding group of people who are making a huge difference to my life at the moment. Thank you all for sharing your lives.
Plus Skeye, I teach at Uni, I have two students who are CPers and the three of us often have coffee and exchange info, but we look out for each other. Maybe by speaking out you might meet others who are suffering like yourself, my students have become lovely friends, I sincerly hope you can meet up with another co- sufferer. I agree with Fal-ling, I often get the feeling from Dr's or professionals that they are doing all they can for you so just carry on. It's an awful feeling, you don't fit into the box so go away, very disposable!