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Neuropathy and Keeping Your Cool

Posted by Ray Kemble @ray666, Jun 15, 2023

Hello!

I have sensory-predominant, large fiber, idiopathic polyneuropathy. (Every time I mention my diagnosis to a friend, I think of those little magnetic tiles we'd slide around on the refrigerator door, trying to make a "real" sentence. LOL) I'm lucky that my only symptoms (so far) are awful balance and a weird way of walking; I've yet to have any real pain. So, I've been pretty good about keeping my spirits up.

However, I lost it a few evenings ago—five minutes of uncharacteristic fury. Although I hadn't been blaming the day's setbacks on my neuropathy, I' would come to realize but not until the next morning that my neuropathy was the reason for my "bad" day. Then that evening, as my partner and I were sitting at her laptop and finishing up a long online grocery order, we were all set to close out and place the order when everything vanished from the screen. That's when I lost it. I said words I never say. LOL Once I'd cooled down and apologized, we placed our order again, this time successfully.

The next morning, thinking over the whole of the previous day during which my neuropathy had been chipping away at me like a micro-migraine, I realized what was going on: I'd been feeling sorry for myself. That's so not like me, not that I don't regret having my neuropathy, but I'm ordinarily a pretty upbeat guy.

That got me wondering: Do any of you have surprise moments like that when your neuropathy gets to be just too, too much, and you lose it? What do you do in situations like that? I'm curious. I'd like to avoid what happened the other evening from happening again.

Ray (@ray666)

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Ray Kemble | @ray666 | Jun 17, 2023
In reply to @njed "@ray666 No doubt, again, you brought up a very important subject to all of us with..." + (show)
@njed

@ray666 No doubt, again, you brought up a very important subject to all of us with PN. I've noticed in the past two years, my patience level is not what it was....well, OK...it was never that great to begin with, but my wife reminds me to be patient with things that have become a struggle in the past several years. She is the opposite, calm personality which contributes towards our 51 years of marriage. PN has a degree of fatigue, and it is frustrating because unless you have PN, you don't know what it's like. I have battled off many other health issues including epilepsy which is under control with meds. But, PN has no meds, no fix. I feel it is OK to get frustrated now and then. You ask how to deal with it. I put on some music - the 60's stuff, relax and think about things other than the PN. Ed

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@njed Hi, Ed. My partner is the opposite. She has a very short fuse. But she rarely, if ever, gets angry with me. She gets angry at inanimate objects (stub your toe sort of things) and every other night at some story on the evening news (I'll get angry at some stories, too). She often tells me that I'm a great influence on her (which I doubt, but hearing it is nice). Frankly, my PN has taught me to be calmer (Take it easy, Ray). It's almost like stepping into a whole new world. I've new rules to learn, a new language (all those medical terms! LOL), a new way of pacing myself (for the most part, so I don't stumble over my two Size 13s). I won't say this to just anyone, because they'll think I'm fooling them, delusionary, or simply crazy (the jury's out on this last one), but I'm happy. I really am. Now that I've pretty much wrestled my everyday PN frustrations to the mat, I've learned to be OK with the new me. Ah, that 60s music! The music of my high school days. Those were good days – for the most part (LOL). Besides the 60s music … let's see, driving across town earlier I had Bruce Springsteen serenading me. Along with all those great 60s tunes (on the big-hole disks), the Boss, too, always lifts my spirits to the heights.

Have a grand weekend, Ed.
Ray

REPLY
Ray Kemble | @ray666 | Jun 17, 2023

Hi, Heidi

Thanks for your sweet words! You may have noticed that earlier I posted a sort of general thank you to all who've posted since I told folks about my moment of anger, assuring everyone that it was only the briefest of moments and so out of character for me; also, that I'm the farthest thing from depressed. I've learned to take my illness in happy stride. But your words were special, and deserving of this added thank you.

I hope yours is a good weekend, Heidi.

Cheers from Colorado!
Ray

REPLY
cher27 | @cher27 | Jun 18, 2023

I never heard of it before I happened onto one of your posts. I don't know if I have EM, but not one doctor (PCP, Vascular, Neurologist, Podiatrist) could tell me why my feet & ankles started turning bright purple/red & burn like hell. I heard everything from "thin skin" to "old age" to "go see some other doctor". It seemed I was a medical mystery. It would be great to have a forum for this. I'm trying to research although I know, as with PN, there is nothing much anyone can do to relieve the misery. I guess we just keep searching for coping mechanisms.

REPLY
cher27 | @cher27 | Jun 19, 2023

Thank you again for all the info. I am seeing my pain doc today & will enlighten him, just as an FYI. I was diagnosed with PN in 2017, but the redness started in August 2021 & has spread to both feet, top, bottom & ankles. It was pretty alarming to me & the indifference of all my docs made me sort of angry. Again, I don't know if I have EM, but in searching "skin changes" or "red feet", I always came up with nothing. At least this is a start to find people who can share their info & how they find relief from this insidious condition.

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