Frustrated to the MAX!!!
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?
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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
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.
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)
@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)
Hi, Barb
I have to apologize in advance for a short reply. My partner and I areabout to have dinner. But to answer your question: No, I was not an only child––kinda. I had a brother who was 14 years older than me, so in many ways it was like having two fathers, especially since my "real" father, although kindly, was a retiring sort who never involved himself much in my life.
Large gatherings, even of the best of friends? I've been known to shun them, too––only to sit at home wondering why.
Did you have a good day?
Cheers!
Ray (@ray666)
I have this vibration as well. I went off pregabalin but it didn’t go away. The only time I done experience it is when I’m relaxed in my chair and reading or watching TV. The minute I get up to do things it comes back and makes me shaky if I’m pouring something or working in the kitchen. I have just had to learn to live with it because like any other symptoms I have ie numbness, tingling and burning it is not going away. I’ve dealt with this for five years now so one has to grin and bear it. Life will never get back to the normal, healthy one I had before this horrible illness took over my body. I am happy that I found this site and can relate with so many others like myself.
Hi, Ray -
Yes, thank you so much - it was a wonderful day. Errands, and more errands ahead of this parade of weather systems which have started today.
Actually, every day is an exceptionally great one when I am home and not in a rehab facility or hospital! 😊
Coming up is the weekend to "spring forward" and carry onward. I hope all is going as planned as you and your partner consolidate households! That is a big project, for sure. And to that, and to the two of you,
Cheers!! 🏘
Barb
Journavx (suzetrigine) is a non-opioid pain medication that was approved by the FDA in January 2025. It's used to treat moderate to severe acute pain in adults. Journavx (suzetrigine) is a non-opioid pain medication that was approved by the FDA in January 2025. It's used to treat moderate to severe acute pain in adults.
Journavx (suzetrigine) is a non-opioid pain medication that was approved by the FDA in January 2025. It's used to treat moderate to severe acute pain in adults.
JOURNAVX is expected to be available in mid-March at major national and select regional retail pharmacies. Check back here. Journavx (suzetrigine) is a non-opioid pain medication that was approved by the FDA in January 2025. It's used to treat moderate to severe acute pain in adults