I just started… somehow all I wanted was to have someone to chat with who gets it. About CIDP… The everyday everymovement even at still PAIN! The emotional PAIN when no one just does not understand… or even try to understand… or ask how are you feeling. The fear of the medication… not even that the finacial issues that comes with this disease.
I am from the Philippines… since this disease is rare there not much I can find groups with CIDP. Not a big deal… Not even from the Philippines are fine like this.
Just a place where I know there are some one else can get it. That there other people who gets the pain… and when people makes you feel stubborn.
When you just can’t do not because you don’t want to to but you just can’t because it is difficult and time you become so afraid of the unbareable pain.
Days I just like to shout out! Please STOP! I CAN’T DON’T YOU SEE I AM IN PAIN STOP ASKING ME TO WALK TO DO THIS DO THAT NOT BECAUSE I DO NOT WANT BECAUSE IT HURTS SO MUCH!!!
Some days I just want to sleep all day… But I can not the pain wakes me up. And days I just do not want to move because I fear pain.
Or some days numbness though it is painful I just got use to the pain and what ever…
Anyone else who gets it…