1. < Neuropathy

Frustrated to the MAX!!!

Posted by mrshill @mrshill, 2 days ago

First of all, I love my husband and dad to the core but they keep pushing me to do things to help with my neuropathy, which I’m happy for because they want me better. So do I!!! But they don’t live in this monster of a body that I have. They try to empathize but no one could ever truly understand unless they’ve been through it. It puts a bit of a strain on my relationship with them because I get so angry and frustrated. Main reason why I came on here so I can let out my frustrations of not being understood. Does anyone else relate? I want to be normal and walk and be carefree but I can’t because I need assistance with everything. It’s enough being trapped in this awful body of mine and be bedridden day in and day out with your only out always being just going to doctors appointments because that alone completely wares me out and puts me in agonizing pain afterwards. I just want to be understood. Does anybody at all here understand me?

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

bjk3 | @bjk3 | 18 hours ago
In reply to @ray666 "Good morning, @mrshill You are DEFINITELY not alone in this! The story I told yesterday about..." + (show)
@ray666

Good morning, @mrshill

You are DEFINITELY not alone in this! The story I told yesterday about my Jepp and irrationally-possessive me was just a snapshot of what I'm experiencing these days. As I mentioned yesterday, my partner and I are in the midst of consolodating houses, so lots of noisy, chaotic moving going on. The sound of the unspooling of packing tape alone can be deafening. 🙂 This week, my partner has arranged for her sister and a duo of cousins to come to town to help with the moving. I have had to explain to my partner that when the noise and the yakkity-yak and the wheezing and the grunting get to be "too much," I will have to be elsewhere. She understands that my need to be elsewhere is not because I don't want to help; just the opposite: I WANT to help, but my PN prevents me––prevents me from doing anything but the most menial of things. That hurts. I wish it didn't, but––if I'm to be honest––it does. And thank goodness my partner understands. Thank goodness, too, I have an elsewhere (our other house) to which I'm able to retreat.

Cheers! (and I mean this most fervently)
Ray (@ray666)

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Hello, @ray666! And hello to Debbie and John and all that are contributing to this thread and to all who may be reading and commiserating. I sure empathize and truly understand what you are sharing, and would add how isolating it can be when we have to resort to finding a place of quiet away from movement and noise. It feels like being punished -- like adding insult to injury.

I really liked the webinar that John made available. My faith in God and the way He encourages me through the exchanges contributed by this PN community on Connect are gifts I receive with much gratitude. The silver lining is definitely the support and friendship of all of you.
My word of advice tonight is "Don't overdo!" I say this coming off of two weeks of doctor, haircut, dog grooming, etc. appointments that I allowed to be made back-to-back. Just going to all of these put me over the top. We are all physically compromised and need to treat ourselves gently. That means emotionally, too 💕
Peace to you all,
Barb

REPLY
1 reply
jewles63 | @jewles63 | 6 hours ago

Hi, I have a similar issue and my neuropathy causes my body to vibrate inside. I was switched from gabapentin to pregabalin and I woke up with it gone I was so happy. One day I woke up and it came back , I literally broke down.so now I just live with it and stopped taking pregabalin because it was effecting my cognitive function and gaining a lot of weight.

REPLY
Ray Kemble | @ray666 | 6 hours ago
In reply to @bjk3 "Hello, @ray666! And hello to Debbie and John and all that are contributing to this thread..." + (show)
@bjk3

Hello, @ray666! And hello to Debbie and John and all that are contributing to this thread and to all who may be reading and commiserating. I sure empathize and truly understand what you are sharing, and would add how isolating it can be when we have to resort to finding a place of quiet away from movement and noise. It feels like being punished -- like adding insult to injury.

I really liked the webinar that John made available. My faith in God and the way He encourages me through the exchanges contributed by this PN community on Connect are gifts I receive with much gratitude. The silver lining is definitely the support and friendship of all of you.
My word of advice tonight is "Don't overdo!" I say this coming off of two weeks of doctor, haircut, dog grooming, etc. appointments that I allowed to be made back-to-back. Just going to all of these put me over the top. We are all physically compromised and need to treat ourselves gently. That means emotionally, too 💕
Peace to you all,
Barb

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Good morning!

I scribbled these words in my commonplace a few years ago. They're from Virginia Woolf's "To the Lighthouse" (one of my favorite novels). Woolf is speaking of the young artist, Lily Briscoe:

"For now she need not think about anybody. She could be herself, by herself. And that was what now she often felt the need of. … "

I know how Lily felt.

Let's all have the best possible day today!

Cheers!
Ray (@ray666)

REPLY
1 reply
bjk3 | @bjk3 | 1 hour ago
In reply to @ray666 "Good morning! I scribbled these words in my commonplace a few years ago. They're from Virginia..." + (show)
@ray666

Good morning!

I scribbled these words in my commonplace a few years ago. They're from Virginia Woolf's "To the Lighthouse" (one of my favorite novels). Woolf is speaking of the young artist, Lily Briscoe:

"For now she need not think about anybody. She could be herself, by herself. And that was what now she often felt the need of. … "

I know how Lily felt.

Let's all have the best possible day today!

Cheers!
Ray (@ray666)

Jump to this post

@ray666 ~ Oh, yes!!! I get that, as well. I'm an "only child" ~ are you, also, by any chance? So being by myself is not typically problematic. The situation I was reacting to was having declined an invitation to join a staff dinner. I knew I couldn't handle 19 of us together at a very popular Mexican restaurant. (I'm retired.) We're a talkative bunch! And there's no private room so add the noise from all those around us - 🤯! Anyway, I felt badly about having to choose sanity over a fun evening.

Love the excerpt from the book you cited. I'll share the final stanza from the piece named "Lament Upon the Finishing of a Beloved Book":
"May I return now
from the world of this book
to the daily details of my own life
with truer vision and fiercer hope,
trailing with me
remnants of that coming glory
I have glimpsed again
in story."
~~ from "Every Moment Holy" by Douglas McKelvey

Yes! to having the best possible day today!
Barb (@bjk3)

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