My PN Experience

I don't like talking about this. I've been dealing with this for so long that I am only really reminded about it when I see people I haven't seen in awhile or my weekly outings for errands or any appointments. I feel more normal at home.
My Specialist explained it like this.....your nerve system is like miles of electric wiring enclosed in a plastic like covering. Sometimes pieces/spots of the covering wear thin and a wire (nerve) pops through. Now anyone who has had a toothache knows the pain of a nerve exposed. There are all type of PN. I am fortunate my type of Peripheral Neuropathy (outer) is also slow processing. I don't have the horrible pain some endure or constant shooting shocks in my feet and legs some do. I don't have to take medication to control the pain. I also have the type of PN that falls under unknown cause. I have in the past taken varies drugs/treatments that each Specialist tries, even with my current specialist but of late these have been more along the line to halt progression, the last being a monthly (6) of an infusion close to chemo.My Specialist explained this last treatment as......rebooting my immune system..for as much as he can figure out this is where mine comes from but why myself would/is attacking itself is unknown.I'm in a electric chair instead of a manual because my hubby craig list surfed. I transfer to a armless office chair to do chores (sweeping,mopping,laundry etc.) 'cause it's easier. I used to drive using hand controls but my hands are also affect and they just quit gripping the knob on the steering wheel needed to turn the wheel. We are checking out other devices so I could drive again. My handwriting is chicken scratch as my fingers can't feel the pen. My legs and hands/fingers remind me of unruly children and I shout at them as if they are.Most people can reach into the fridge and grab the handle of the pitcher without looking. If I try that most times only one finger actually behaves and After dropping enough pitchers I have to look at the handle....remind all the fingers to work together to accomplish the job. My brain thinks the fingers are behaving however my fingers are numb and even though they think they are....they aren't. I use knifes very carefully as the fingers sometimes forget we are holding something and the lists goes on and on. I adjust and adapt where I can and am learning to "let go" of the things I can't....which isn't easy as I don't like...I can't. I used to have long hair and with the PN my fingers would forget to hold the comb and because I couldn't see them using the hair clip....they would act up and not do it right the first 5-6 times.....after my last set of treatments.........my hair fell out......and it solved the whole problem. My daughter "buzzed" me which delighted the grandkids. It's growing back now but I'm going to keep it very short....one less thing to deal with.
At times I do sit on my pity pot......but I know God is watching over me and for whatever reason I have this.......someone out there would trade. Don't ever be so smug to think this couldn't happen to you. I got the first sign of this when I turned 42. I'm thankful I got this late. I have hugh memories of "normal" which comforts me........although my grandkids think I've never walked.....it's not in their memory.......maybe someday I will...my specialist believes I will.....so who knows........maybe another.....joy on the horizon.