1. < Neuropathy

PN: Do You Think About Things Like This, Too?

Posted by Ray Kemble @ray666, Sep 8, 2023

Hello,

I'm one of those who enjoys discussing lifestyle questions surrounding living with PN. Mine is idiopathic sensory-motor PN, without pain but with lots of problems with balance and walking, even short distances. Two lifestyle questions have been tumbling around in my mind lately:

PN as a GIFT. In many ways, PN has made me slow down and re-learn to appreciate so much in my life that living a fast-paced lifestyle has made me pass by. For example, I'm finding much more pleasure in reading now that I can't be "on the go" 24/7. PN, in unexpected ways, has given me other gifts, too. Recognizing these gifts helps me rise above the various ways PN has curtailed my life.

PN as an EXCUSE. I've found that I have to be very careful, or else I'll be saying no to so many opportunities that, once passed up, I'll only learn regret. I must watch myself, or I'll find myself pleading, "No, I can't do that (because of my PN)," when I really can. I hope always to remain realistic about what I can and can't do––or can do, but not quite as well––but I never want my PN to become too ready an excuse for living a good life.

Do these sorts of questions sound familiar? How do you answer them? I'm curious.

Cheers!
Ray (@ray666)

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

erichendrix | @erichendrix | Sep 11, 2023
In reply to @casd57 "I play guitar and sing... So when my hands start to hurt, especially my palms it..." + (show)
@casd57

I play guitar and sing... So when my hands start to hurt, especially my palms it deflates me a bit, It's like taking something that I'm passionate about away..
So when I see improvements I'm happy but cautious because when the wife wants to go on walks I'm hesitant unless I've had a good day.
I feel if I abuse my good days my improvements will stop
I'm a newbie to PN, I noticed it last January for the time..I felt something wasn't right, and from that point on it got worse(Feet and slightly hands).. until I had restless legs...
But now with the combinations of Vitamins and Herbs, Lidocaine, and one of those Amazon foot shockers:)
I feel like I'm on the mead...
I did try gapin(sp?) but Lycria worked the best..But I quit it several weeks ago... I didn't like the loopy feeling I got.. weaning off at first I just quit and used .75mg at night for restless legs and after I got the Primrose that I take at night I quit Lycria a couple of weeks ago.
I know this post was about something else but I wanted to explain a little...
So yes I've had to make adjustments and my wife is patient with me... I still mow the grass but I do the front and back on different days.. I'm just scared of abusing my progress...
I feel for other people who have it so much worse than me... My Aunt had it and ended up in a wheelchair but maybe she was diabetic? I don't know...I'm not, I've had all the tests..but
My Family Doctor/Doctors have abandoned me, I guess since I didn't want to take prescription meds and I wanted answers to what started this problem it wasn't an easy fix because all they wanted to do was follow the computer script...
So do the best you can each and every day, take the bad days the best you can because a good day is coming.

Jump to this post

I've got the diagnosis:
https://drive.google.com/file/d/1cCmnnvZNnoECrShptTcRqKyqPOpXmvIz/view?usp=sharing
By yours truly,

@erichendrix

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Sep 21, 2023

Happy Thursday! Want to know a little more about Ray?

Managing the give & take of life: Meet @ray666
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/managing-the-give-take-of-life-meet-ray666/

REPLY
bgator | @bgator | Sep 22, 2023

Great story, I was wondering if you were a Vet or not? Your story was kinda reading my long and painful list of ailments. It’s true what you said the way PN makes you feel, not to mention the pain but the emotional trauma from it. It’s bad enough dealing with the everyday pains that come with being 77 years old but feeling useless because you can’t do the things physically like you use too. Feeling useless is a real feeling and a dangerous one. I lost my wife in January of this year after 28 years of marriage and it’s been horrible to get use to no one to talk to but the dog and he doesn’t answer me by the way! I haven’t started hearing my dog talking as of yet. Ha
One thing I want to say and it grounds me and that is, there are a lot of people in worst shape than me so be thankful you can still get out of bed and feed that dog. Thanks for letting me speak, hopefully it will help others

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