just a thoought and a suggestion. where/when do you live? in the past? in the future? from what you've written, your mind seems to be in the future: "afraid that my kids may get it."
my dear, dear friend, there is NO future and the past is dead, done, and over with. all that any of us have is NOW. That meand this instant. are you hurting this instant? maybe you feel the pain beginning; but are you actually HURTING this instant? when my pain gets so bad that i don't want to live any more (and, yes, sometimes it gets that bad) i do all that i can to concwentrate on the NOW. for some reason, the pain is in the past and i fear it in the future. but it isn't with me NOW.
last night was one of the worst times that i have had in several years. i don't know why. i began an exercise regime a few weeks ago, but it's nothing that drastic. i just want to move my body so that it doesn't just stop on me. i took a morphine for the first time in two weeks, b ut it really didn't help. i went to bed and slept fitfully all night until about 10:00 this morning. why am i telling you this? because when i woke up and hurt so badly that i couldn't get out of bed, i entered the NOW. at any givin instant i wasn't hurting. the fear of the pain to come, i found, was really the culpret this time. only those of us with cp can really understand this fear of pain. but in the NOW, the pain wasn't there right that instant. or the instant afterr. i actually got out of bed and made it into the kitchen (to the sound of bugles blairing!).
i'm nobody special. i simply suggest that you try living in the NOW ands see what it does for your peerception of pain.
hope this helps.
Hi SjH - YOU ARE NOT ALONE. I am 27 and am suffering unbelieveable pain everyday and it has just been getting worse and worse. Please, whatever you do, dont give up. Keep searching for help I know how hard this is know that I understand chronic pain and depression and the feeling of not being able to take it anymore. I dont know how I am still here through all this but I am waiting for a healing