of yourself. You truly MISS who you were [and are not now] and what you could do [and cannot now] and WISH you could do it now!
It is a process. Not a fun one either.
Medically: you have to fully understand what all is GOING ON with you as best as can be determined. Frustration here is that for many: knowing what's going wrong is often unclear or muzzy and the clear parts aren't often accepted or understood by the varied specialists 'treating' you. Then once a person knows as much [at times more] than a doc, speaking w/them in terms they can either relate to or aren't offended by is often tricky.
Emotionally: you have to learn your limits in terms of what you can do now vs used to do. Yes this is emotional? Because HOW you deal with this all is how you are going to use any and all tools and resources available to you to recover any mobility and function and thus self-place in this world. How you are able to move and function in this world IS related closely to how you view yourself in this world. For some, many PN's are devastating in this respect emotionally. Rightfully so. But, there are always things that can/might be done to help things along. WHAT? differs for each of us.
Family/Relationships; Honestly, you become a NOT-FUN! person!! You can't go to Aunt Hattie's house because she's got stairs up to the house, THEN more stairs up to the bathroom! Yeah, we could wear 'depends' but WHO wants to? Far easier to decline the invite. This severe stuff does tend to alienate us from our families and our friends...They just can't ask litely: How Are YOU? and expect a lite answer in return...Makes a person feel like a drudge.
Yes, one has to go thru a different form of grieving, and one has to go THRU it all! We each do it in our own time, and pace.
At times, it is good and does both US good but for PR on behalf of all of us with various neuropathies to go out and speak to as many folks, relatives, friends as we can about what we have and to increase understanding about it and the need for more research. The more we do it, the better WE get at it. Who knows which one of us will be testifying before Congress about it in five years? It could be you! Now, that would be a 'coping' HIGH in my book! - j