Living with PN, do you find yourself retreating from life?

Yes definitely miss a lot of events I use do to. Again this is something people may not understand this condition because they can't see it but we suffer.

Hello, @suegaleregis. Hardly a day goes by without my thinking of this. Only yesterday a friend phoned to invite me to join 10 or 12 of our friends at a restaurant within a downtown art museum. The friend who phoned knew that I had mobility issues and that the museum's handicap parking is at a remove from the front door; more challenging yet: the museum's restaurant is quite a ways from the front door. The friend said (most kindly): "We'll all help you in and out." While I truly appreciated the offer, I was once again reminded of how many of us (I, for sure!) have to consider where we are on the Willing to Accept Help One-to-Ten scale: One, I refuse all help; Ten, I happily accept help. I used to be a One, even though I knew that I was being foolish. I'm not yet a Ten, although I'd like to be. I'm somewhere in between, maybe a Six or a Seven, but, as I learn more and more how to live with the reality of my condition, at least, on the One-to-Ten scale, I'm moving in the right––or sensible!––direction. // I wish you a good day, @suegaleregis! ––Ray (@ray666)

@bjk3 Hi Barb- I have no memory of where the TP was located. Or if we provided our own. I'll have to check with my daughter to see if she recalls. We both remember our camping trip where we had the "out" but no "house." (Sad to say, the following year a wildfire roared through the area and incinerated the table and benches along with the vegetation including beautiful alpine hemlocks. I imagine it took out the toilet seat as well.)

Hi 👋 Ray: I have recently joined this discussion group. Kudos and thanks to Mayo Clinic for hosting these discussion formats.
My name is Gene, 78 years old from PA. Near Philly.
My opinion is that withdrawing is probably the worst thing you can do. Most if not all friends recognize that as we age, we are susceptible to a variety of debilitating issues, so let’s be up front about it. I also recognize that all of us are different life experiments. So it’s fairly unlikely any two Neuropathy cases will be identical. In fact, I m quite certain most of the folks in this forum deal with more than just Neuropathy unfortunately. I personally don’t experience balance issues, but lots of pain walking and going out. Sometimes if we’re out, I may need to rise up from the dinner table and take a walk to prevent from becoming so painful , I can no longer tolerate sitting. Personally, if a friend explained to me that they were in need of balance assistance , I would never hesitate to assist. My recommendation is let your friends know you need help. Get out and stay out as often as you can. Enjoy life as much as you can , in whatever ways are still possible. One day at a time, making sure to push through the challenge of pain.
I hope to see more people respond to posts by others, to make this discussion group as beneficial as possible. If you have any questions related to my response , please feel free to respond in kind.
May God Bless, and keep you moving.
Gene 😁🇺🇸

Hi, Gene (@gjuszaki)! Welcome to Connect! This reply will be unpardonably short as my workday is not over and I've still a gazillion things to do. (Fortunately, I love my work, so a "gazilion" doesn't faze me. 🙂 ) As you say, to each his own set of neuropathic symptoms. Mine is solely balance. I've had to accommodate on again/off again decent balance for a long, long time, from several years before I was finally diagnosed with chronic idiopathic predominantly large-fiber polyneuropathy. That's a mouthful, I know. I'm glad you found us, Gene. Pull up a comfy chair and settle in. I'm sure in no time you'll be inundated with messages. 🙂 Stay well! Stay strong! Cheers! ––Ray (@ray666)

@joanland Your "out" had a toilet seat? Mighty high living there! I don't recall our site having one. Also, we took showers from a shower stall that we hung from a tree limb. Can't remember where the water would have come from. Well, the lake - but how did we get the water from the lake up to shower?
Bummer about the wildfire. I know sometimes it's nature making way for new forest growth but you feel the loss more intensely when that portion that was "your own".
I do love the outdoors - as long as there's a fully outfitted camper at the end of the day. We had a 27' one - no slide outs but had a complete kitchen and bathroom, small (SMALL) living area, bedroom on one end and bunkbeds at the other. Plenty of storage if you only had to bring clothes, and we absolutely loved it. We had it "permanently" sited at the most beautiful place, for about 15 years, and made good friends with our fellow "permanents".
Hope your week is a good one! ~ Barb

I am not retreating from life but i am extremely careful about having my toe nails cut. Yesterday i had someone do them, she was gentle but lastt night i had greater pain than usual. I hope it will simmer down today.

@ray666 I’m a little torn on this one. I find out gatherings happened with close “friends” that I wasn’t invited to at all. Granted, some of them revolved around activities that are difficult for me (shopping, overnight trip/carrying bags, etc). Perhaps it’s hard for them to lock in the meal time around the activity so I can meet them. But it hurts a little when I hear I was excluded from something. I try not to half a pity party and try to focus on being happy that they can (and should) do as much as they can while they’re able, and I really do hate the feeling they have to work differently if they include me. But I’m honored when it’s an occasion they insist they want me to join.

@dbeshears1
I was torn, too, even as I was writing my original post. It happened to me a few weeks ago: I learned about a small gathering of friends only days after. On one hand, it hurt. On the other hand, the gathering was at our city's poshest hotel for high tea. I'm not a fan of posh eateries, nor a fan of high teas. Had I known in advance, I might have declined anyway. There's the definition of "torn," I wanted it both ways; not quite Have your cake and eat it, too; more like Be offered cake but be able to say, No thanks, I'm full. 🙂 ––Ray (@ray666)

Hello, @johnnysneakers. You've introduced a whole new dimension to the meaning of "retreating from life." When I wrote my kick-off post using that phrase, I had been thinking only about "big picture" events, like get-togethers with friends, attending community meetings, doing some long-distance travel. You mention nail clipping. That has me thinking: nail clipping can be thought of as an "event," too. Considerations of personal hygiene can further call to mind ways in which our PN symptoms might cause us to "retreat from life (as we once lived it). It wasn't my PN, but a bad sepsis infection, that left me bed-ridden in a rehab facility for a number of weeks. Although I'm now recovered from the infection, I haven't forgotten the near totality of my helplessness while I was in that rehab facility. I had had no choice but to retreat from life (as I might have wished I could live it). So, @johnnysneakers, you've me see a whole other way in which our PN symptoms can urge––if not downright demand––that we "retreat from life (the life we once lived). // I wishe you a good, good day! ––Ray (@ray666)