Life with Neuropathy

Hi, my name is John.   A nd I have CIDP  (Chronic Inflammatory Demyelinating Polyneuropathy ). When you have CIDP or any type of neuropathy you must  figure out how to deal with the daily issue of exhaustion. It can be crushing.  Everything is a challenge. Everything takes longer. Often much longer. Everything hurts and the tearing pain is a constant reminder of the many changes you're  facing. Constantly. Always. Every moment.  You can have neuropathy and still LOOK marvelous! People don't necessarily see that you even have a problem unless you have a walker or cane. And they certainly don't understand what it's like living with CIDP. Or realize that having constant pain makes you tired.   I used to be able to fall asleep the moment I flopped into bed. I was out. Completely. No problems, no issues. In fact, I've earned several Gold Medals in Napping.  Now when I try to sleep I can't quite let go and relax because of the pain surging through my limbs. Squeezing

Hi, my name is John.   A nd I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy ). When you have CIDP or any type of neuropathy you must often  figure out different ways to get where you want to go. I use the edge of the bed, sturdy chairs, dressers, and tables at times. I'm very creative. But mostly I rely on my walker to get anywhere. And by anywhere what I really mean is everywhere.  It was only a matter of time  before the calluses started to form. Painful hard spots of skin on my hands and palms developed. Like dry scales that protect me while using my walker.  I need it to lift myself up from a seated position. And I lean on it to support my upper and lower body when getting from place to place.  A lot of repetitive pressure has built up these stiff calluses.   The skin at the site is no longer soft or smooth. Probably never will be again. But that's what lotion is for, right?  Calluses aren't necessarily bad though. Anyone who has toughened up their finge

Hi, my name is John. A nd I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy ). When you have CIDP you must often  figure out different ways to get where you want to go. I use the edge of the bed, sturdy chairs, dressers, and tables at times. I'm very creative. But mostly I rely on my walker to get anywhere. And by anywhere what I really mean is everywhere.  Besides a walker, I discovered that I needed grab bars. Helping hands , so to speak.  I never thought I'd have to hire someone to put in grab bars for me in my own bathroom but frankly it was a good investment. That's because it allows me to continue to maintain some semblance of independence in this very personal arena. These sturdy bars help me when I need it most. They give me something to hold onto. A place of safety. I have lost so much mobility but being able to continue to wash up, brush and floss, take a shower, and use the toilet are important abilities to maintain.  How about you? What changes ha