I have read many posts and just wanted to add a few of my own thoughts as I have been a cp patient for 16 years now. No one would ever choose to be a cp patient. Those of us with cp are constantly trying to make the best of it.
If you are like me you have learned to not talk about it…who wants to hear a person complain about their health issues? But in a way I think that back fires because then people just think that I am OK. (which is so far from the truth on some days-we are just always sucking it up, so you do not have to suffer with us.)
I am constantly not wanting to burden those around me and to try as I might to be helpful. To do this you have to be the strongest person I know-because despite how we feel, we see the need around us for people who are hurting or who are in need of love and nurturing and try to give back despite how much pain we are in.
I am constantly weighing my actions against pain thoughts of; will this action make my pain worse? Will this action push me over the edge, which brings on, an extremely high level of pain and then brings more thinking of how will I be able to get my intense pain back down to a low boil.
It is constantly weighing my actions and non-actions throughout the day-because I love you and I do not want your life to be worse-because of me.
Finally, it gets so old wearing a mask when being put in a situation to socialize. It is the hardest for me when we go visit family or they come visit us, because we have to be on and welcoming and as helpful as we can be…which is so draining when you are in so much pain. It all just wears a person out!