Happy to meet you all.The price of membership is too high but I am paying it anyway--8 years in serious nonstop pain. Those few words are so easy to say and people nod but as most of you probably know most do not know.'SERIOUS NON STOP PAIN 8 YEARS'-wow---those who have this kind of experience know all the shades and colours of this 24 hour a day ordeal. The time I was white and sweaty at the party,the time I had to leave a BBQ to go vomit cause the pain had amped up to more than the body itself could tolerate, that evening in the third week of last February when I had NO pain for 3 hours(don"t know why so can't repeat-frustrating),the clutching the wall for support at 6am while trying to move quickly to the bathroom to get a pill or maybe two. This experience of serious nonstop pain is not a steady unchanging thing,not for me anyway and I am sure it is as individual as we and our lives are.My experience is of a chain of many many experiences,all different,new ones still to come I am sure. Moments and minutes of pure agony,hours of steady electrically spasmed muscles pulling bone against nerve- a knife wound with every step.Hours,even days of fatigue after a bad pain episode. Just an hour of the bad pain,nerves screaming,revving overloaded and too fast for even 'just' half an hour can leave me worn out emotionally and physically for the rest of the day or night. And some wonder why I am so irritable or inattentive at these times; it is because my consciousness,my sense of self is full-no room for anything else,just sitting quietly but excess internal stimulation,no room for listening thoughtfully,no room for music,no room-I am already overfull,,nervous system overcranked already and just from sitting.Please don't ask me to think about anything serious for there is no room,everything I am is already full,too full with this gd mfing never stops PAIN...f.pain.....If you can relate to this I wish you well,VERY well. My heart goes out to you. Frustratingly all I can do to help is say..'I know'...not enough but hopefully better than nothing..I WISH YOU WELL...how do we do it--day after day,night after night..how do we do it...and not complain too much,and not cry too much,and not get angry too much...I admire all of you who suffer..and encourage you in this endurance contest..Will the pain win someday? I sometimes wonder but am gain for the fight,not by choice but simply because I have to cope,I must cope like it or not..........HELLO to you all. I look forward to sharing info.,strategies and experiences. I hope ranting is OK....later...john woodward...aka ichameleon
-
Re: Hello! I am in the club!!! Happy I found you!!
Sun, July 29, 2007 - 7:00 AMGood question: "How do we do it?" Because, we do. We are all still here, still kickin', still striving for a better day, if not today, then maybe tomorrow there will be less pain.
Welcome to you ichameleon... sorry you have to be here, but good thing you found a place where people can say I Know and you can believe them!
Hope you had another 3 pain free hours by now,
Zanne
