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

Posted by Ray Kemble @ray666, Jan 18 4:00pm

Hello!

That's right, I'm the fellow who asked that we revive the discussion "What have you done to improve balance?" Today, I've another question. (Like many of us PNers, I'm full of questions. 🙂 ) Have any of you found yourself retreating from outside activities? Retreating from friends? Turning down invitations to do things that in the past you would have jumped at the opportunity to do? I find myself doing more and more of this lately. I have large-fiber PN, so I've no pain but plenty of balance issues––and in recent weeks, my wobbliness seems to have gotten even worse. It breaks my heart to see friends less and less. I know I need to accept the challenge of going places and doing things, joining in with my friends, and––generally speaking––living a fuller life. But it's hard. Pride is the stumbling block, I know that. And I know that the answer is being honest with my friends: stop saying I can't go because I have some imaginary head cold, and instead say, "Look, Jim, I want to join you, but it's going to be dark at 7 p.m. and you've got a lot of uneven sidewalks out front. If you'd be willing to meet me out front and help me to your front door, then for sure I'll be there." That's just a hypothetical scenario, but it's that sort of upfront honesty with my friends ("…If you'd be willing to meet me out front and help me…") that I'm trying to develop. My issue is balance, but I'm sure those of you whose issue is pain have similar moments when you'd like to retreat and not say yes. I'd love to hear from PNers who have struggled with retreating and won. What were your techniques?

Cheers!
Ray (@ray666)

Interested in more discussions like this? Go to the Neuropathy Support Group.

Retreating? In my life, I think I’ve had to repurpose myself and everything anro me. After going through a knee replacement, then five months later spine surgery, I felt like my community forgot about me. I filled my life with volunteering with the skills I still had, that’s where repurposing came along. Toenail clipping is a whole other problem! Three toenail clippers and counting! I feel that safety and finding your comfort zone is very important.
I read your comments and marvel how well all of you write. Hope I’ve made some sense! Janice from Maine.

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Profile picture for bjk3 @bjk3

@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

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@bjk3
Hi Barb,
Yes, the "out" had a toilet seat. It looked exacty like a Forest Service outhouse model only it came w/o the house. Also no TP holder; we furnished our own. The view was unbelievable and unforgettable. It was a tiny piece of heaven.

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Profile picture for joanland @joanland

@bjk3
Hi Barb,
Yes, the "out" had a toilet seat. It looked exacty like a Forest Service outhouse model only it came w/o the house. Also no TP holder; we furnished our own. The view was unbelievable and unforgettable. It was a tiny piece of heaven.

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Hi, Barb, Joan, et al.

What is it about memories of outhouses that makes them so universally funny? Recalling one of my own memories led me to a word, "self-consciousness," that seems to tie back perfectly to the original subject: "Living with PN, do you find yourself retreating from life?" The memory that returned to me was of that same outhouse with the low-hanging lintel on which I'd thwack my head every time I'd step in or out.

The specific memory I had this morning was not of the thwacking but of the direction the outhouse faced: 180 degrees away from our cabin deck so a person in the outhouse would have a modicum of privacy. You see, our outhouse lacked a door! Seated inside, a person was in full view of the adjacent cow pasture. That in itself wasn't made me smile; it was remembering the tenderfoot horseback riding trail that led past the exposed side of the outhouse. It seemed every time I'd be seated in the outhouse, a trail of tourists mounted on horseback would go clomping by. They'd see me and say, "G'morning!" I'd lower my old National Geographic and say "G'morning!" right back.

Speaking of "right back," this takes me right back to that word, "self-consciousness." Doesn't self-consciousness play a big role in why we sufferers with PN oftentimes retreat from social get-togethers? Or why we're a touch ill-at-ease the first time we go outdoors with a much-needed cane or walker? Isn't it self-consciousness that makes us cringe at the thought of our friends now having to relate to a "new" (PN-impaired) person, and not to the fully able-bodied person to whom they used to relate? I know self-consciousness played a big part––perhaps the leading role––in my having to adjust to my "new" PN self.

So, see? All these wonderful anecdotes about outhouses all along have had a perfect tie in to the topic of PN and "retreating from life." 🙂

Cheers!
Ray (@ray666)

REPLY
Profile picture for Ray Kemble @ray666

Hi, Barb, Joan, et al.

What is it about memories of outhouses that makes them so universally funny? Recalling one of my own memories led me to a word, "self-consciousness," that seems to tie back perfectly to the original subject: "Living with PN, do you find yourself retreating from life?" The memory that returned to me was of that same outhouse with the low-hanging lintel on which I'd thwack my head every time I'd step in or out.

The specific memory I had this morning was not of the thwacking but of the direction the outhouse faced: 180 degrees away from our cabin deck so a person in the outhouse would have a modicum of privacy. You see, our outhouse lacked a door! Seated inside, a person was in full view of the adjacent cow pasture. That in itself wasn't made me smile; it was remembering the tenderfoot horseback riding trail that led past the exposed side of the outhouse. It seemed every time I'd be seated in the outhouse, a trail of tourists mounted on horseback would go clomping by. They'd see me and say, "G'morning!" I'd lower my old National Geographic and say "G'morning!" right back.

Speaking of "right back," this takes me right back to that word, "self-consciousness." Doesn't self-consciousness play a big role in why we sufferers with PN oftentimes retreat from social get-togethers? Or why we're a touch ill-at-ease the first time we go outdoors with a much-needed cane or walker? Isn't it self-consciousness that makes us cringe at the thought of our friends now having to relate to a "new" (PN-impaired) person, and not to the fully able-bodied person to whom they used to relate? I know self-consciousness played a big part––perhaps the leading role––in my having to adjust to my "new" PN self.

So, see? All these wonderful anecdotes about outhouses all along have had a perfect tie in to the topic of PN and "retreating from life." 🙂

Cheers!
Ray (@ray666)

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@ray666 Oh, Ray - you had me laughing audibly at your first sentence, before even reading about the lack of a door and the morning exchange with tourists on horseback. The whole thing is just so believable and easy to imagine and FUNNY!
Yes, YES to the whole self-consciousness thing, and it's something that (to me) strikes at the core of one's sense of...well...self-importance. Truth is, most of us are so concerned about how we think we may be perceived, that any worries we have about the impression we make in another's eyes, is like a puff of smoke that is gone as quickly as it appeared. They are likely too wrapped up in concerns about their own self-consciousness to pay much attention to ours. I'm just glad to be of an age and sensibility to be able to laugh at the funny and embarrassing situations we humans make or find ourselves in. Isn't it great to be so easily entertained?
Here's to a really good weekend, Ray ~ and to all our traveling companions!
Barb

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Profile picture for bjk3 @bjk3

@ray666 Oh, Ray - you had me laughing audibly at your first sentence, before even reading about the lack of a door and the morning exchange with tourists on horseback. The whole thing is just so believable and easy to imagine and FUNNY!
Yes, YES to the whole self-consciousness thing, and it's something that (to me) strikes at the core of one's sense of...well...self-importance. Truth is, most of us are so concerned about how we think we may be perceived, that any worries we have about the impression we make in another's eyes, is like a puff of smoke that is gone as quickly as it appeared. They are likely too wrapped up in concerns about their own self-consciousness to pay much attention to ours. I'm just glad to be of an age and sensibility to be able to laugh at the funny and embarrassing situations we humans make or find ourselves in. Isn't it great to be so easily entertained?
Here's to a really good weekend, Ray ~ and to all our traveling companions!
Barb

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Admittedly, I was being a bit manipulative when I introduced the idea of "self-consciousness." I, too, was enjoying one belly laugh after another reading our bizarre outhouse stories, even embarrassingly adding a few of my own. But when the idea of "self-consciousness" popped in my noodle, immediately thought: Ah, yes, that's what these two ideas have in common: Being self-conscious the first time your friends see you toting a cane, and: Being self-conscious when your sitting on the pasture crapper and a troop of tourist go a-galomping by, saying "G'morning!" I'm often amused at how our Connect threads "wander": The lead-off topic might be: What's The Best Shoe For A Person With PN?" abd only six posts later, under that same topic, weConnecters will be pondering which helps more with poor balance: arugala, or baby spinach. 🙂 –Ray

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Profile picture for Ray Kemble @ray666

Admittedly, I was being a bit manipulative when I introduced the idea of "self-consciousness." I, too, was enjoying one belly laugh after another reading our bizarre outhouse stories, even embarrassingly adding a few of my own. But when the idea of "self-consciousness" popped in my noodle, immediately thought: Ah, yes, that's what these two ideas have in common: Being self-conscious the first time your friends see you toting a cane, and: Being self-conscious when your sitting on the pasture crapper and a troop of tourist go a-galomping by, saying "G'morning!" I'm often amused at how our Connect threads "wander": The lead-off topic might be: What's The Best Shoe For A Person With PN?" abd only six posts later, under that same topic, weConnecters will be pondering which helps more with poor balance: arugala, or baby spinach. 🙂 –Ray

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@ray666 Yes, and isn't it wonderful that we can "connect" with crossover thoughts which touch on Support Groups we aren't even necessarily "following", like Aging Well, or Just Want to Talk? I don't know how many others often leave this site feeling lighter in their spirit than they'd ever hoped -- not necessarily finding answers, but having enjoyed an unexpected belly laugh and able to join in the conversation to share a story of their own, should they wish. If any time in our lives we needed this outlet, not to mention outhouse, it's now.
May our lives and stories bless those of others in these somber days.
Peace, Barb

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Ah, yes, Barb, "crossover thoughts"! You've described the value of Connect perfectly! The Just Want To Talk forum is there for any who'd rather our chatter in the many other forums never drift off-topic. Here's wIshing you a peaceful Saturday evening and absolutely perfect Sunday! ––Ray

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Profile picture for burkesnh @burkesnh

Retreating? In my life, I think I’ve had to repurpose myself and everything anro me. After going through a knee replacement, then five months later spine surgery, I felt like my community forgot about me. I filled my life with volunteering with the skills I still had, that’s where repurposing came along. Toenail clipping is a whole other problem! Three toenail clippers and counting! I feel that safety and finding your comfort zone is very important.
I read your comments and marvel how well all of you write. Hope I’ve made some sense! Janice from Maine.

Jump to this post

@burkesnh There's a two toe nail clipper (large/small) set on Amazon. Brown handle, with ridges, that ended the crime scene in my bathroom.

REPLY
Profile picture for bjk3 @bjk3

@ray666 Yes, and isn't it wonderful that we can "connect" with crossover thoughts which touch on Support Groups we aren't even necessarily "following", like Aging Well, or Just Want to Talk? I don't know how many others often leave this site feeling lighter in their spirit than they'd ever hoped -- not necessarily finding answers, but having enjoyed an unexpected belly laugh and able to join in the conversation to share a story of their own, should they wish. If any time in our lives we needed this outlet, not to mention outhouse, it's now.
May our lives and stories bless those of others in these somber days.
Peace, Barb

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@bjk3 Well put Barb!!! Think about all we've learning from fellow members on the Connect pertaining to this horrible disease. At times, I think I've have learned more from those of us who live with this on a daily basis as compared to those who don't, like many of our doctors. Stay well. Ed

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Profile picture for michaelstuart1 @michaelstuart1

@burkesnh There's a two toe nail clipper (large/small) set on Amazon. Brown handle, with ridges, that ended the crime scene in my bathroom.

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@michaelstuart1 Thanks for the tip. I’ll be sure to check it out. My husband calls me the Amazon Queen!

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