So sorry Pam but certainly know from where your coming from.
I like you hid the pain from my adult kids for far too long and even after talking to them I dont think they grasped the severity of my life. I eventually scheduled a sit down with my Doc day with the kids that could understand and he did a wonderful job of telling it like it is and why it was unreasnable to expect Memaw to be able to babysit on a whim or show up at events that would force me to bed for days but he also did it in a way so as not to scare them.
I have to give them credit here as they were far more reasnable about it then I ever thought they would be and the Doc most likley helped so they didnt see me as simply whining or exaggerating or hooked on pain pills! So many times this seems to be our biggest fear,how others will percieve our daily taking of the controversial meds they see so often down ridden on the media.
I have come up with some super ways to cover for my absence to those life altering events in my Grandaughters as well as my 10 year olds life when I simply cannot make it. My 10 year old had awards day last week at the close of school year and I had a horrid night realizing along about 4 a.m. I was NOT going to be able to make this sit on the bleachers for hours event. I simply got on the phone when the florist opened and had a dozen helium ballons and a 2 movie tickets to a movie of her choice at a later date delivered to her class prior to her assembly. Cost was not alot cosnidering the importance of this event in her life and mind and when she came home from school that day she was ecstatic! She raved on and on how she got ballons and flowers delieverd to her school and her class room and how no one else got anything like that!
She was the "talk" of the day to her friends! They thought she had the "coolest" Mom on earth and movie tickets to boot! She never once mentioned me NOT being there to see her. I also offered a neighbor who was attending for her son the use of my camcorder and a free copy of the tape if she would so kindly record my childs acceptance of her honor role awards and citizenship pin for being the morning news host during the school year. Worked great for both of us.
It cuts deeply at times to not be able to make some of these events in person but with a little thought and at times a small fee I can and do make it alright for them.
Does the pain ever end? Not usually for many of us. With the care and compassion of a good Doc and an understanding family and the progress of a few drug companies we survive. I cant stress enough here about the Doc! It took me many a tries and alot of years of trial and error but eventually I found a Doc that worked with me not against me and we got the meds right and life is tolerable if not down right enjoyable at times.
When I lowered my expectations for myself then others could see me as I was and not as I wished I could have been.
Good luck to you and I hope you continue to search for better treatment of your pain and demand understanding from those who care about you,give them a chance and this isnt saying they will accept your limits as many times and especially with familes they cant fathom that we are not who we always were to them and we cant ever be again no matter how much meds we take we will always have limits to our abilities.