Better days ahead…

I came down with a very severe case of CIDP at age 48 over 9 years ago; & I am still a year younger than you today. I look back & would have given anything to have had an extra 10 yr. to be healthy, but after awhile one realizes it is a waste of time to look back. Getting CIDP is much like the stages of death that we are all familiar, & eventually acceptance comes.

It took me a long time to accept help from others, & I hated that I was so dependent on everyone. My daughter used to come to visit me at Mayo every Sat. (a long drive for her) & also took one day off each wk. to come & visit me. My mother moved in with us for 9 months to take care of me (she was 78 then,) until my youngest son graduated from college & moved back home. He watched me during the day until hubbie got home from work & then he worked the afternoon shift. BTW my son is in a wheelchair from spina bifida. My point is, they were all there for me, the mother who had once done everything for them was now bedridden & unable to brush her teeth, wipe herself, dress herself, etc. How I hated that 3 years of my life.

I never accepted that I would be like that forever, thank God. I kept trying treatments until I found one that finally arrested my CIDP. It then took 2 yr. for me to get to walking with AFOs & a cane, to retest to get my driver’s license back, to fly again, to get on with my life. I am now used to the pain & fatigue, it is just a small part of who I am. If you want to know more, go back & read some of my old posts. There has to be the right treatment out there for you. You might never be 100% again, but you will get to where you accept your “new morm,” & some day you will not think that CIDP is the worst illness in the world. I live a pretty wonderful life even with all of my residuals, just keep fighting…