Not a day goes by when I don't think about my PN. My feet do not burn. I rarely feel anything but the sensation that my foot bones are broken...or I don't feel much below the knee at all at times. Somehow I still walk, but at times it feels like floating on air, not in a good way...but I can rack up 4 miles at a time....it can be arduous.

I have learned that it is dangerous to use my hands to gesture when I speak, as I have given myself a slight black eye, and taken a good hunk out of my lip with my fingernail. It is hard to explain.

I use two hands to hold a coffee cup. I no longer walk around with a shoe lace untied. I carry my cell phone when out alone. I seldom go out alone.

I get nauseated in grocery stores, and utterly can not stand Walmart....superWalmart is worse, but I still go in there now and then...I call it my Walmart challenge. (This must be how autistic people feel....or how Jimmy Hendrix USED to feel.)

I don't need to shave my legs anymore, well, not much...yes, folks, PN makes your hair fall out or not grow....

For relief, I watch movies with Will Farrell and I contemplate what my 90 pound lab does on those rare occassions that I am out of the house...HE COUNTER-SURFS. I know, I have caught him...it is like walking in on a middle schooler....

(I love the sleep number bed commercial with the big dog and the divorced guy) My dogs weigh 90#, 70# and 60#. I have finally gotten all but the counter surfing dude to stay off my bed at nite....Mr. Counter Surfer still sneaks up in those rare time frames in which I sleep.

I got these dogs before they diagnosed my PN...you know, back when it was in my head and if I would stop obsessing, I would be fine. Now I have 190# of cannines to deal with. Labradors no less.

Heaven help me if the EMS has to come in!!!

I go out to eat only to have my food set in front of me, just as I get nauseated and feel like passing out. I can't drink Margaritas or slushies anymore, lest I feel like I swallowed a sword...a hot sword.

My relatives have learned not to ask me how I feel, and I have learned not to tell them how I really feel. I have learned not to discuss my bowel regimen.

I don't bring up anything about things being hereditary.

I think I have a Betafish swimming around in my brain. I can see him as he goes by now and then.

I have learned it is hard to lift weights when you can not hold them...yes things can be adapted, but man, your hands are really important. I have learned this website times out on me when I get long winded or type with a pencil in one hand.

Cycleops,
I think many of us survive because we still maintain a sense of humor.
If not, the alternatives are unthinkable.
It is rare though, to be able to set that humor down in writing.
You've accomplished this, and many other things...that are necessary
to live with this insidious disease.
I truly wish I had that talent.
Mine seems to have been to 'show off' and be a performer,
but my PN has squelched even that desire, any longer.
My PN and CTS have forced me to shelve my guitars due to
inability to use my hands properly.
I am (or was) a flamboyant, outgoing personality, with
a loud projecting voice & a desire to perform... in many different ways.
My degree is in Broadcasting, and my minor was Performing Arts.
I've done many different things in my 63 years on this earth.
I'm an old 'Folkie' from the '60's & I've been determined
to continue my music, by taking up an instrument more easily worked with - that doesn't require the same amount of hand strength .. the 5 string banjo, but Old Time Music style, not 'bluegrass'.
It keeps me from getting depressed about my inability to make music
as I once did (for over 45 yrs- since a teenager).
I've become more introspective & sit alone to practice and play,
not having any desire to perform in front of an audience any longer.
My inability to think clearly enough to memorize properly
(lotsa 'brain fog' meds) has put a hiatus to my community theatre,
theatrical performing as well. But I still stay on the board of a play festival & sometimes am asked to direct a show, but I haven't done that in over 2 yrs.
I can't seem to be able to commit to a 5-6 nites per week rehearsal schedule then a 4-5 weekend performing schedule. I don't know if I'll feel well enough.... consistently, for 10-12 weeks to be able to do it.
So I sit and play my banjo and am sort of......content.

I am thankful that I did not play a musical instrument. I used to sew and I have several really nice formal dresses I can't finish. Beading was fun-for a while-no more....I need those 'kiddie beads' that you give to toddlers---you know, stuff big enough not to put in our mouth.

It is good you have kept your connection to music. Music is therapeutic, and I can tell when I listen to music my mood changes depending on the music.

I went to an 'America' concert last month...it was great!

You know, if you can't laugh at yourself, at least a few days per week, you are in trouble. Life is ironic, the more you can laugh, the better off you are, especially when there isn't a thing they can do for your disease. As a nurse, I have seen kids die, and young parents die, so I can't complain. Like you, I was active, but in sports, so this seems a cruel irony. When you have a passion for something and it gets taken from you, it is difficult not to get bitter. Humor helps. Alas, life is not fair.

You want to laugh. I'll make you laugh.

This morning, after breakfast, I had to go to the drugstore. I did not notice the man behind the cash register. I was getting my money out of my purse. He says something, I glance up and I yelled "Oh my god, you poor thing, what happened to youuuuuuuuuu????" He looks at me puzzled and goes 'what's the matter??" I said "What's the matter??, you're bleeding all over your face" He looks at me puzzled, then bursts out laughing (Just so you can get an image of what I'm looking at as I was facing this man, picture a man with a big gaping wound on his forehead, blood pouring out from every crevice from stitches on his face, etc. etc." The lady in the corner bursts out laughing and goes: "You should have seen him last year, he was a Witch Doctor". I, (still clueless), said "I beg your pardon"!!! and they all go:

"HAPPY HALLOWEEN".

He had gone to a professional make up artist to have this done.

oh yeah, they got me good!!!!

mel

I,,m having one of those well do we call it a day anymore. Everytime the phone rings
i'm sure it's the rehab.another month of oh crap....they wom't let you
use the little kids beads no matter how much you beg,im thar place...
to you Sue

My favorite thing in all the world was hiking, and now I can't walk without increasing my pain uncontrollably. But we are going on vacation to Yellowstone and Grand Teton and I think I can be satisfied with walking a few feet down a trail and sitting down in the woods and listening for critters. I hope so, anyway. But I feel sorry for my husband. He doesn't enjoy going off and hiking without me. I wish he did. He has polycistic kidney disease and is fine now -- could enjoy doing anything -- but will have to go on dialysis in 9-10 years. And he can't enjoy life to the fullest now because of me. Sometimes life just isn't fair.

".....Sometimes life just isn't fair...".

Yup, 'lemons to lemonade' is 'pap'.
I think that those of us who keep plugging are just too mean to let it
get us down. We have our moments, but its just danged 'cussidness'
that gets us thru. (and to he11 with those who think we're getting meaner, or our attitudes have changed) Life with pain 24/7 has a way
of altering the way we treat situations, ourselves....and others.

My wife is a quick walker, hurries thru every walking situation, loves to window shop, visits every store in the mall, & is a great bargain hunter.
When she gets about 1/2 block in front of me and doesn't
even realize that I'm wayyy behind, I yell.....
"You're going too fast. keep it up, I'll either catch up eventually
or look for me on a bench..Oh, BTW- keep your cell phone on
(she keeps it turned off most times) in case I lose you" .
I usually do, and if I've forgotten my cell phone, spend endless time searching for her....especially in a mega-food supermarket.
Its frustrating and I usually get somewhat upset about it.