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

Posted by Ray Kemble @ray666, 1 day ago

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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John, Volunteer Mentor | @johnbishop | 1 day ago

Sorry Ray, rather than telling you I'm a born loser, I'll just tell you I haven't figured it out either 🙃. I do have my Friday morning coffees with my old coworkers and I sometimes struggle carrying a large box of donuts I take with a special one to get me past the receptionist. She always lets me know if the owner's dogs are around so I can take the direct route to the breakroom instead of going by my friends office first. I have started buying 2 smaller boxes that are easier to carry than the one large one. I used to love meeting friends for dinner at different restaurants around the area but had to give that up unless we can make it a lunch meetup. 7pm is when I start shutting down for the day and I also don't like driving at night.

If it's just a specific location that worse for folks with balance problems, it might be a technique to suggest a different place or something different or new that they might not have tried.

quietriver | @quietriver | 23 hours ago

Hi John and Ray. this is ole bashful Bob After open heart surgery and an implant I was to months, up they called it two mo. That didn't fit my life style. Six hour after surgery I was up and walked to the bath room.
My nurse wasn't happy but assisted me ack to bed. After tthe evening meal she returned and asked if I wanted to walk again and I did. The next morning we walked 200 steps. by my self. That afternoon it was 500 steps , The next morning we walked down the hall. and on the third day I was told I could go home in the morning. I continues my walk progression but my ballance was off a bit. I had to correct5 that so I sat in a swivel chair turned my head up toward the celling not to much and turned my body and rolled my eyes another. then di figure eights with my eyes. u the way it also helps the eye sight. after about three weeks my balance improved.
the only complated problem I found was starting. You have to have the will power to help yourself. good luck guys if you come up with anyother thing Let us hear about it.

lynnn | @lynnn | 9 hours ago

what is PN? Best wishes for your progress.

Ray Kemble | @ray666 | 9 hours ago

Hi, lynnn (@lynnn)! PN is "peripheral neuropathy." There was a time when I, too, had no idea what PN was, and yet I kept hearing folks talking about "PN this" and "PN that." 🙂 Have a wonderful day! –Ray (@ray666)

rrr1 | @rrr1 | 7 hours ago

I have the same problem with legs and feet must use a rollator in and out of house also go out to public places almost not at all . If there is an answer I think its only coming with a cure if we live long enough to see it.
Good Luck Milo