Peripheral Neuropathy & Conversation Fatigue?

No kidding. We all could do Stand Up at some point witht things we get ourselves into!

Got to.

I don’t mean to sound defensive, BUT….. I am often lured into talking about it, and that tires me more and happens more often than me starting the conversation. It seems that my often being accompanied by my walker or cane is an invitation, or maybe an obligation, to ask me about my health.

Some are just curious, well-meaning, and often forgetful acquaintances in my social community who start with “What happened to you?” I’ve tired of explaining what all of us here are going through and just say “unexplained neuropathy”. Some will leave it alone at that, but most want more detail, offer unsolicited advice they have no idea about or that I’ve heard repeatedly already, but many use it as a segue to tell about all the medical issues they’ve ever had that required them to use a cane or walker. Those situations exhaust me.

Family and friends always ask, and I pretty much have a standard answer - “I have good days and bad days, and today is pretty good,” then I try to move onto another subject. After 8 years, there’s just not much to add anymore nor is there much medical help or experienced suggestions they can offer, so I don’t want to be a friend or relative always talking about medical stuff…

What I find really annoying and lures me into unwanted lengthy discussions is having to explain WHY I can’t do something they want to or think I could do if I really wanted to. Things that involve stair climbing, excessive standing, or a lot of walking for example. Things I know I physically can’t do or that the risk of injury isn’t smart to take given the devastating life consequences it can have on my already disabled body. Those are the conversations that turn off my friends and family because they do not understand and it frustrates them because I’m “defensive”. That’s when we tend to separate a little, because quite frankly, as we all know, they “don’t know what they don’t know.”

Bull's eye! You've said this perfectly, allowing for both the conversation fatigue that sometimes wearies those of us who have PN and a genuine appreciation for all of our well-meaning family and friends who want us to know they care. It's another one of life's challenging balance games: on one hand, our desire to tamp down too much discussion of medical matters, while on the other hand, our hope that our family and friends know we welcome their company and concern. I play that challenging balance game almost every time I answer the phone.

"What I find really annoying and lures me into unwanted lengthy discussions is having to explain WHY I can't do something they want to or think I could do if I really wanted to."

Oh, yes! For me, it's the everyday need to turn down coffee dates. Because of my lifestyle and occupation before my PN, afternoon coffee meet-ups were a pleasant and practical way to get some work done and have some social time with a colleague. PN robbed these coffee meet-ups of the pleasantness they once offered. Today, I more often than not decline such invitations, saying, 'Why don't you come here to my house instead?'

PN has made me 'see' the local coffee shops in a whole new way: the lack of close-by parking, the broken sidewalks, the rickety wooden staircase leading to the front door, the overcrowded interior, the wobbly tables and chairs, the 'remote' restrooms–all things that were no-issue a few years ago but now require moment-by-moment attention for a guy with PN, distracting from the pleasure of simply enjoying a coffee date with a colleague.

I've been known to theorize––Ray's armchair theory :-)––that friends will ask over and over about my 'condition' because they can't quite grasp the meaning of 'incurable,' something many of us, too, have had a tough time coming to accept. We seem to live in an age when there's an answer to every question. I'll sometimes reply to a friend who's asking, 'What will cure you?' the only way I can: 'There is no way.' I'll fully expect my friend to reach for his smartphone, saying, 'No way? That's crazy! Let's see what Wikipedia has to say … ' 🙂

Hi, Debbie

Another word that comes to mind when I think about conversation fatigue is "participation." I long to participate. Sometimes, when I feel myself in a slow, unwinding conversation about medical this 'n' thats, I begin to feel that the one and only experience in which I'm fully participating is my disease. I realize that my participation choices, thanks to my disease, are somewhat limited; nonetheless, I long to participate as fully as I can in as many non-doctor-related experiences as I can––for as long as I can! It's a question I ask myself at the start of each day and several times as each day rolls along: What are you participating in, Ray, besides your disease? Full or even partial participation in things I enjoy is as much a part of wellness as remembering to take my meds.

Enjoy the weekend, Debbie!
Ray (@ray666)

@dbeshears1 - Debbie, I know where you're coming from when it comes to others wondering why I now walk with a cane. It does surprise me how many people never heard of peripheral neuropathy. The usual comment is something like....oh, isn't that some kind of numbness in the feet? Where do you start? I try not to get engaged into a conversation about PN. I will normally answer with a simple yes. And I change the subject. Others may not want to discuss something they know little about. A few times I've tried to give some details and the why will then come up which many of us can't even explain. I think most people don't want the details; all they want to know if that you're OK. As you said some are curious and well meaning. In spring of this year, I ran into someone I haven't seen for a while and noticed my cane. He asked what happened. I said I hurt my ankle. He is the type with many questions, and he said that's too bad, and he kept walking. It worked! Stay well and keep moving. Ed

Hi Ray. I was happy to read what you said in this post because my daughter just gave me a lecture on the same thing. I went off Nortriptyline and my numbness and pins and needles in both my hands and feet have worsened and I thought talking to my daughter about this would make me feel better. On the contrary. She politely told me to quit talking about it and either go back on my old meds or deal with it. She said it’s not helping my mental state to keep dwelling on it and maybe she’s right. People who don’t know what we are dealing with need to walk a mile in our shoes though. I felt my daughter would be more sympathetic to my problems but obviously I was wrong. In the future I will only share my issues with this group. I feel like there are kindred souls here who are willing to listen and understand what we are going through and it also makes me feel better just realizing we’re not alone. # grateful and blessed

Ed - Sense of humor is so important! I might try that line some time. I live in a complex with a clubhouse and by being on the social events committee, I run (waddle) into people at different frequencies. It seems there are more infrequent (monthly) run-ins who greet me with “Aren’t you better yet?” I just politely brush it off with saying I have something that won’t get better. This is a 55+ Community…. There are more people with hip & knee replacements or Pickleball injuries than any of us can keep up with, even those of us who still have good memory 😊 So I don’t blame folks for thinking I’m like the majority of folks here with something fixable.

Good morning, Ed (@njed), Tessie (@tessie63), Debbie (@dbeshears1)

Most everyone here on Connect fits the definition of “birds of a feather.” So many of our posts, revealing some nuance of our “condition,” are met by the same reply: “What? Me, too!” It's been that way following my original post about “conversation fatigue.” Some are comforted by lots of conversation, others are turned off, most seem to fall somewhere in between: they like that their family and friends care enough to ask, but they don’t want medical yakkity-yak to be all that’s ever talked about. I think of it as “conversation management”: in ways that are subtle and polite, I try to manage the flow of conversation, allowing for a dollop of medical talk if it’s apparent my friend would truly like to hear from me how I’m doing, but then teasing our talk in some other direction––for both of our sakes! I’m facing a conversation management challenge this evening. My partner and I will meet the couple who are interested in renting my partner’s house. The ”he” of the couple is a high IQ, high energy, genuinely lovable guy, a college prof, but who is a long-time diabetes sufferer whose sensory nerve damage has left him with balance issues that are almost a match for my own. The conversation management challenge is he LOVES talking not only about how he’s doing with his balance but also about the latest “cures” he’s found online. On one hand, it amuses me: despite his sky-high IQ, he’s the world’s biggest sucker for snake oil. (God knows what sure-bet substance he’ll bring to me this evening, wrapped in foil!)

Best wishes to you all for a wonderful weekend!
Ray (@ray666)