PN? What's good about it?

I first had to get through the emergency of having to redesign and recalculate my “retirement” plan (sudden early full-time retirement/disability = major financial and cash flow loss while increasing medical expenses). I had to get through that panic and reality check. But how PN was “good” for me? It was reality check #2 - that there are so many people with a lot more hardships in their lives.
I’m using my walker and pass a child in a wheelchair. I realize the total sacrifice and adjustment the whole family has made, and what experiences I had in life that they won’t. Many people would be worse off being disabled at 51/52 like I was. I am careful about judging others on outward appearance because I do not know what struggles they have. That includes when I see a people get that handicapped spot before me and “look” ok. I realize how terribly mean some people can be by judging, staring at my shoes, making me feel like a drain on society, but I’ve learned 99% of people are very compassionate, opening doors, offering help, and that’s made me more compassionate. I miss activities with friends and perhaps feel envious and sometimes left out of things, but I’ve learned more understanding. Especially as we’re getting older, we all must live to our maximum enjoyment and ability, and I’ve learned to understand our differences in abilities and know it’s unfair to hold others back! So my husband is starting his 77th birthday today with early morning Pickleball while I’m making his favorite breakfast of Crabcake Benedict. I’ve learned to be thankful for the things I CAN do (thanks @njed )

@dbeshears1 - Debbie, I do remind myself that expression just about every day .... what I can do... and in most ways, in a subconscious manner. I mean, I don't walk around saying it to myself, would not look good! Yet, it just happens to be a way of thinking. I know from your posts you have struggles yet you manage to fight on, an endless determination, a way of thinking. About the breakfast, crabcakes?

Benedict.... instead of the "traditional" slice of ham in Eggs Benedict, the ham is replaced with a lump-filled (grilled) crabcake. Sometimes we just use lump crabmeat instead of making a cake and top the Hollandaise sauce with lump or backfin. I struggle finding fresh picked crabmeat here, even though we're close to Charleston. Most of the picked crabmeat is imported because it seems they ship most of our local blue crabs up your way. I am lucky to find an occasional pound already picked. For these we only found live crabs so I had steam & pick the crabs myself. Neuropathy greatly impairs crab-picking, but the reward is well worth it! I call it physical therapy 🙂

Hi, Debbie (@dbeshears1)

I was happy to see your post in response to "PN? What good is it?" topic. After posting something that others might find too filled with positivism, I'm always on edge, fearing I'll be accused: "Oh, sure, Ray, you can talk. You've got it easy compared to us." And I understand that. In many ways, I do have it easy compared to so many others who've been battling their neuropathies far longer than I have. What gave me the idea for the topic was a conversation with a friend with CIPD. She and I were talking about learned helplessness and how vigilant we must be not to fall too deeply into the pit of learned helplessness. (I say that, and immediately I remember I've yet to do my daily balance work. I'd better get to it.)

Crabcake Benedict? Wow!

Ray (@ray666)

Ray - I think, like death (or divorce or other things), there have to be natural stages of grieving & acceptance. It's very nice to try to be positive whenever we can, despite the hurdles we have along the way. I think I've exhausted myself on negative things at times, and I know it can be helping my health when I get in those ruts. By starting a thread like this, it only helps pick us up again and regain our focus on improving ourselves, with each other's help. This group has been my lifeline!

To Ray and Debbie I say, "Amen!!!" I consider you some of my best friends even though we've never met and I wouldn't be able to pick you out in a crowd of 10. At 76, living alone since my husband passed 10 years ago, I really need to be able to hear/exchange experiences and ideas with those who share similar medical journeys. My children, all married - some with married children of their own - are unbelievably attentive and kind, and I have a solid base of supportive friends. But I'm the only one with PN, so no one can really understand what my day-to-day life can be like. You and other contributors and especially the mentors, help me immensely. To you ALL, I offer a huge and sincere Thank You!!!

Good morning, bjk3 (@bjk3)

Thank you for all that you said! Your words were wonderful to find on waking up this morning.

I know what you mean about the quiet frustration we sometimes feel when, on the one hand, we have a group of genuinely supportive friends who acknowledge our condition but then, on the other hand, still occasionally ask us to do things we're unable or uncomfortable doing. It seems almost every day, at least once, I'll find myself saying, "Oh, but you forget, I can't do that."

However, what I must watch out for is saying to myself: "Be careful, Ray. You can't do that" – when I really can, IF I go slowly, carefully, watching for the littlest hazards that, to someone without our condition, wouldn't be hazards at all. Life on a balance beam, that's what it can feel like, between too much caution on one side and too much boldness on the other.

When I'm feeling self-focused (something I try to avoid feeling), I catch myself wishing: If only my supportive friends could more fully understand the balance beam I'm walking every waking hour of every day.

Again, bjk3, thank you for your kind words!

Cheers!
Ray (@ray666)

Great analogy, Ray! Be assured I will use the object lesson of the balance beam, many times over to describe the complexities of trying to juggle the "have to do" vs. "have to find someone else to do" while still living up to the mantra, "If you want to live independently, act like it!" (the caution/boldness of which you spoke) -- a balancing feat of its own, since keeping my balance while walking is such a challenge, even with a cane or walker. If all this didn't consume so much time and energy while often accompanied with varying levels of pain, it would be comical.
Cheers right back to you!!
~ Barb

My favorite part of PN is I qualify for a handicapped placard, which is incredibly helpful with daily life. It also makes me a “hero” in family’s eyes when we are off on an adventures to popular destinations and don’t have to park in the far hinterlands. My littlest grandson calls it “Grammy’s ticket”.

My neighbors know I retired early because of neuropathy pain ( and terrible fatigue). I am receiving SS Disability. I love working outside in my yard, and find ways to make that happen. I have a bottle of “magic pills” - prednisone 10 mg. Last week I treated myself to about six straight days of prednisone. Pain gone! Energy restored! Even my dry eyes/mouth and dizziness gone! So I took my new pressure washer and went to work on my front sidewalk. Also my porch and pergola roof. I was reaching, stretching, going up and down the ladder, leaning over while holding the sprayer high. I did the whole sidewalk. What great therapy!
Now the prednisone is gone, and I don’t have to tell you how many places I am hurting. I’m hobbling this morning, grimacing. My hands are miserable.
So my point is, my neighbors, and the moms parked along the street picking their kids up, might judge me. Why am I getting disability? I felt guilty even as I was enjoying my prednisone week, because I knew I was temporarily “able”.
Telling that story as an example of the rollercoaster mind games this chronic illness is about.