Living with PN, do you find yourself retreating from life?
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)
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I am new to this group. I have had polyneuropathy for several years, and have had many balance issues and dropfoot. Using a cane for many years, I find a cane with a personality to be a conversation opener. Mine is made from diamond willow and it has been the start of many good interactions with other folk. I have continued to be an avid gardener, and the many falls- some serious- has made the hiring of young people nessesary to perform any bending in gardens. This association has brightened my life immensly. The opportunity to be a mentor and friend to youth is a blessing that makes pain and frustration easier to bear. I certainly don't need all the produce I grow in my garden, but I am a provider of clean organic produce to many of my friends and neighbors. Gardening helps me too, to satisfy my need to be in harmony with nature, as my walks are limited, and hiking, and solitude in nature are but memories I cherish. I will never forget the reply from an older fried when I asked how he was dealing with the loss of his sight as he approached his 100th. he said," It's kind of neat, you know; I've never been blind before". may we all approach the challenges we are facing with such an attitude. (He lived until he was 106)
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4 ReactionsHello, @papi!
Welcome! Make yourself at home! You'll meet some great people around here. I, too, have polyneuropathy; mine is chronic idiopathic large-fiber PN, so no pain, but, like you, plenty of balance issues. I also know what you mean by a cane "with personality" being a great conversation starter. 🙂 If you happened to see any of my earlier posts, you may know that I carry a wooden cane with a faux silver wolf's head handle. I choose that cane purposely because as a child one of my favorite movies was Lon Chaney's Wolf Man in which his uncle (Claude Raines) fends off werewolves with his wolf's head cane. So, as you say, a cane with personality can be a great conversation starter. I'll end this here. It's lunchtime. But I wanted to at least say hello annd welcome you to Connect!
Best wishes, Ray (@ray666)
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3 Reactions@ray666 And here, Ray, is to another delightful chortle as I contemplated arugala or baby spinach. This thread delights me!
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1 ReactionThank you, Joan, thank you! Here's to laughter! 🙂 When I use exaggeration as I did when I kiddingly asked which holds the better promise of PN relief, arugula or spinach, I'm not making fun of the hunger we all have for relief, but rather trying to shine a light on the lengths to which we'll go to lessen the pain of our symptoms. I include myself in that crowd. I've wasted a good deal of money on proverbial snake oils––as does one of my dearest friends whose PN is diabetes-related. This friend––I'll call him Eric––calls me at least once-a-week with the latest "sure cure;" Invariably, what Eric will suggest is never anything as crazy as "spinach is bad for your balance, Ray; eat arugula three times a day; arugula will have you doing gymnastics in no time!"––his suggestions are never as crazy as that, but whatever Eric may suggest––and as I think about the many gadgets and pills I've bought over the years, I'm reminded of just how hopeless––and helpless––we can feel living with the symptoms of PN. It's good, though, when we can find laughs. Laughter is not snake oil. 🙂 Laughter is the one medicine that does work! Here's wishing you a super day, Joan! And let's both of us keep laughing! –Cheers! Ray (@ray666)
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3 Reactions