Hello Carol

July 18, 2010 at 2:20 pm

Welcome to your GBS/CIDP family. You are not alone. So sorry you have this, lucky to be diagnosed already. I am 8+ years into it. Yes it is horribly painful. You & Northernguitarguy mentioned, it would be so nice to go to sleep & not wakeup. That would be nice. There were times I wished I was dead, but not suisidal. I am on med. for depression, happier now. Sorry for venting.
STEM CELL TRANSPLANT! Your own stem cells! Read all about it! Go for it if you can!
You are in my heart & in my prayers.

Love & gentle hugs, smitty

Hello Carol…

June 20, 2006 at 9:30 am

Nice to meet you Carol… One thing I would like to stress to any caregiver is the guilt a patient feels for getting sick in the first place. The first few years I wished I could just diappear off the face of the earth. How totally useless I felt, unable to do anything for myself. How guilty I felt when my husband had to run 4 1/2 hours each way to Mayo every weekend for 3 months. When I finally got home, my 78 year old mother had to move in to take care of me so he could work. What an awful time that was.

He had to do all of the gorcery shopping, cooking cleaning, running errands, dealing with the medical bills & all of the other bills, etc. But after 26 months I started to come around somehat, & was able to take care of much more again. Last August his back went out & he needed 2 back surgeries. He was out of commission from August 16th until March of this this. I became his primary caregiver. It felt so good to be so needed & to be able to wait on him. Now my mother might need knee replacements & I would be her primary caregiver. So one never knows what life has in store for us.

If you can afford it, get someone to do the lawn all of the time & get a housekeeper. You might have to tell your daughter that doing all you do for her is too much? Take car of yourself, that is all I can stress…