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Originally Posted by St George 2013
I'm right with you and BioBased on this. I have small fiber neuropathy and even though I am better pain wise than I was when I started this journey 2+ years ago I still cannot make plans with friends or family because this monster always reaches up and says...no, no, no !
Example: Tuesday night my 10 year old grandson had a soccer game. I told his parents I would meet them at the game and bring my grandson (they work in the next town over and his game was there also). I can drive in small spirts just nothing longer. Wound up having a lousy pain afternoon, moaned and groaned all the way there and could not make it past the first set of bleachers. Thank goodness it was his teams bleachers or I would have just sat on the opposite side ! Took a pain pill and kept thinking someone was going to have to leave and drive me home......thank the good Lord the pill kicked in and I actually enjoyed the 2nd half of the game and my grandson scored his first goal and I was there to see it.
I worked at the same place for 26 years before being laid off in late 2012. So many friends there who called all the time wanting to go to lunch. I've said no so many times they just quit calling. I can't blame them. I blame my SFN.
So no you are not alone.....I have a feeling many on this site are in the same boat we are.
I get so tired of asking my kids to go to the grocery store for me because I WANT to go and can't.
Just rambling....thanks for listening.
Debi from Georgia
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Debi, thanks for sharing that outing. I've been trying to go to a local minor league baseball game all summer. And look.. whoops, low and behold, their season is over. My CRPS would not let me go this year.. AGAIN!
Yet, the good news is!!! wait.. the Great news is!!! I went out to eat with my son and then to a movie with my daughter yesterday. That was the first half way decent day that I've had, since about early June. I was so thrilled to be able to go. Yet, last night beginning at about 8:00 and then all through the night until about 5:00 a.m. I paid the price for leaving the house. My CRPS has spread through out my entire body. So, my right wrist swelled up and had that deep hot hurt all night long. I just laid still sobbed and celebrated that I was actually able to do something with my son and daughter! I was thrilled and was quite willing to suffer. The reward was so so great. It out weighed the pain.
As far as saying goodbye to my friends, I would say that I am doing better with letting them slip away (or say goodbye) than I used to. I've slowly grown to realize that it is ok for people to come and go due to this disease. And I try not to kick myself in my own pants for not being able to maintain those relationships any longer. But... errrr... honestly!! it really isn't easy. I value these friends. These are some really great people. But, I also realize, I can't schedule and then have to reschedule with them forever due to this disease, and then eventually just have to cancel. That just isn't fair to these great people.
#kicks the empty tin can
-Spike-