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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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@ray666 Hi Ray can I ask where you got your ToePro? I an interested and looked on Amazon, all kinds of pads and devices, however not one is dedicated to ToePro. Thank You
Hello, @allegheny. I bought my Toe Pro directly from the manufacturer, Human Locomotion. –Ray (@ray666)
@ray666 Thank You so much, I am going to check it out!!
🙂 I'm glad I made you smile. Yes, when we start doing heel lifts in the hope of improving our PN-induced yucky balance, we have to watch out for those low-lying door lintels. In "real life," the dermatologist I've been seeing for years still calls me "Outhouse Man," because the first time I saw her was because I kept bashing the top of my bald head on the low-lying entryway to our cabin's outhouse and had developed a minor "wound" that called for a doctor's attention. So you see, Joan, I come by my fear of low-lying door lintels honestly. 🙂 ––Ray, aka Outhouse Man (@ray666)
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2 ReactionsHi, @allegheny. My Toe Pro just arrived. That's pretty fast shipping. I'd ordered on Tuesday afternoon, and here it is only Friday morning and I have my Toe Pro. (That may not be as fast as Amazon, but I don't use Amazon.) The challenge now is not to start using the Toe Pro. I promised my PT I'd wait until he could show me how to use it effectively. ––Ray (@ray666)
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2 Reactions@ray666 Looks like it could be helpful for our stubborn toes, however I could never put my barefoot on the device. In barefeet I feel like I am walking on rocks! Just another unanswered question why is this?Drs do not have answers, it is your idiopathic neuropathy. I live near the beach and my passion was walking in the sand, no more must wear shoes, if I can even do that with my very poor balance. UGH on neuropathy!! I have learned alot throughMayp Connect than any neurologist, I am done with them! Waiting on a referral from my PCP for balance therapy!! Good luck with your ToePro, hope it helps.
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3 Reactions@ray666
Hi Outhouse Man, oops, Ray: You have earned your alternate name!
Many years ago, when camping in the Washington Cascades, my daughter and I found a lovely remote campsite, a one campsite campground! With only one campsite, and next to no other cars on the narrow dirt mountain road, there was little concern for privacy. Then we discovered it had an outhouse, but it was different: it had an "out" but no "house". Just the toilet seat elevated above the ground surrounded by the great outdoors. It was not visible from the road nor from the campsite unless one really worked at it. This resulted in a new term in our vocabulary. We're going to the "out". So now when a last minute trip is needed before heading somewere, we'll often hear the expression, "I'm headed to the "out", and it is totally understood.
Your tale of headbumping, while providing a trip to the dermatologist for you, brought back many wonderful memories for me of an "out" without a house.
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2 ReactionsHi, @allegheny. I'm lucky in that I can go around barefoot and still be comfortable––although I'm most often in non-slip socks. This house is wall-to-wall hardwood floors. I guess I'm lucky, too, in that my neurologist was straightforward with me quite some time ago, telling me we'd arrived at the end of her knowledge of current practices. She assured me she'd watch for new therapies coming on line; in the meantime, she and I do 4-month check-ins. I'm satisfied with that. And I respect her straightforwardness. I'd prefer that, than her feeling pressured to prescribed yet another prescription or therapy, only setting me up for another let-down. Between my honest neurologist and my determined physical therapist, I'm lucky to have a good pair of caregivers. ––Ray (@ray666)
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2 ReactionsHi, Joan (@joanland). There's no way my Outhouse Man tale can top your "'out' without a house" adventure (or should that be "misadventure"?)! I'm not even going to try! 🙂 –Ray (@ray666)
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2 Reactions@joanland Your recollection brings back memories and a smile to my face. My husband LOVED wilderness camping in the Boundary Waters. I, of course, am a city girl. Nonetheless, I did go on two wilderness camping trips (in my 50s) and I remember well the outs without the houses, deep into the woods; and since we always vacationed with friends, we found a spot well ahead of the out to place a roll of TP. If no TP was there, that was the sign to go no further until that roll reappeared. Great times and memories, but I've never become the kind of lover of wilderness camping that my husband was. Thanks for the smiles! ~ Barb
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