PN: From Anger to Acceptance

@ray666
I was totally accepting until some complications started to arrive I didn't realize were associated with Neuropathy. First came ED then bowel problems and finally urological issues. I'm accepting of my Neuropathy until and if another complication comes along. Overall I am accepting even though I’m aware it may continue to progress.
Positive attitude you know.
Jake

My PN has been with me for almost 30 years, so I had better be accepting it by now! I did go through a long “why me” period and it affected my mental health. I think it’s important for us to get to acceptance for our overall wellbeing. When I go to Mayo I see people in much worse shape than I, and I find gratitude for the body I have.

I also wasn’t sure if my bowel and bladder issues were just age related nd female, or was it part of my neuropathy.
It just seems like my whole body has become affected now.
Right now my right hand is weak and numb and my left is fine.
Is this also part of my CIDP or is it a different cause?
I have an upcoming Neuro appt in few weeks.
Let’s see what he thinks it’s caused by.
I can’t even hold a pen and write or sign my name.
Very upsetting!

Ray -
I think we exhaust ourselves into acceptance once we feel we have questioned everything we think possible with the resources we have at our disposal. We accept that we've uncovered all we can so our focus changes to living with it and learning as much as we can to obtain the best quality of life. We begin to trust doctors more, because through this forum, we've learned were not alone and there are many others like us.
Then we hear a new speaker, new test, improvements on genetic testing, or a miracle diagnosis or cause, and we have a resurgence of wonder or hope which gets us questioning again for a bit. I don't think any of us want to completely abandon hope - we just can't be consumed with it any longer. I agree with your partner that it's only natural for us to mourn at times - we have lost an awful lot and it's hard to watch people run, bike, dance, and do things we can no longer do. But like good old NJEd coached a few times, we focus on what we CAN do, not CAN'T do!
BTW - Why does your Neuro say your PN is progressive? We have all been through so much and all the words swirl at times, but I'm wondering if there was a test for "progressive"?

Hi, Jake (@jakedduck1)

For the most part, when I'm with friends, and they're questioning me about my neuropathy, I'm fully accepting. That's why I found it odd that, in the privacy of my thoughts, I'd occasionally have these fleeting moments of "Harumph, why me?" I can understand what you mean when you say you're able to remain calmly accepting so long as your neuropathy is the sole issue. Yet, when something else comes along to add a new burden –– it must feel a bit like being piled upon. With me, these "Harumph" moments come on –– although I never give them a voice –– when I'm in the company of someone who –– because it seems it's also they can think of to talk about ––talks endlessly about all the adventure travel they did last year and all the adventure travel they have planned for the coming year. I know I've jealousy underlying my "Harumphs" (I'm having dinner this evening with one such person) –– but, heck, I'm only human. I used to love to go on wild-flung adventure trips, but not so much these days, not with my neuropathy. As far as my being human, who has occasional pangs of jealousy? Well, being human is the one thing of which I know I'm 100% accepting. 🙂

Ray (@ray666)

Hi, @mitfit
I agree. Thirty years is more than enough time to learn how to be accepting! It was a little over 30 years ago when I realized I had to quit drinking, and, for a term, as I worked toward true acceptance, I would have similar "Why me?" moments ("Why am I the one who can't have a nice glass of wine with this dinner?"). But I got over it.
Cheers!
Ray (@ray666)

Hello, @harley22
I have a situation that runs somewhat parallel to yours. I find that every 4-5 days, I'll feel some new little ache or ouch and be pulled back into thinking about my neuropathy ("Can this be some new PN symptom?"). So, just when I think full acceptance is about to let me get through the day without dwelling on my neuropathy, the new ache or ouch will yank me back into giving it thought once again. I say this, and yet I believe that acceptance doesn't mean never thinking about your PN; instead, it means thinking about it in a way that doesn't make it seem overwhelming or cosmically unfair.
Cheers!
Ray (@ray666)

"I don't think any of us want to completely abandon hope - we just can't be consumed with it any longer."

Ah, that's it, isn't it? Never give up well-founded hope while not letting oneself be consumed by false hope.

Good morning, Debbie! ( @dbeshears1)

As my partner and I went on to discuss the webinar, it became apparent that was exactly what she meant when she called my occasional "Why me?" thoughts "normal." I sort of knew that, but because the topic (anger vs. acceptance) stirred such fun conversation, I thought I'd pose it here. (Trust me, she and I talk about things other than medical things! LOL)

Mmmm? Did I say that my neuro called my PN "progressive"? I may have misspoke. He didn't call it progressive; what it did, comparing two EMGs a year apart, remark that my PN hadn't "progressed, not really" (I believe that's an exact quote). I take comfort in believing (I hope not foolishly) that my particular brand of PN is not "obligated" to progress. 🙂

Enjoy your weekend!
Ray (@ray666)

There’s times I feel like I have dealt with this. Other times very frustrated by the lack of care and then I have the days I just cry. I had a really bad night last night between muscle spasms and nerve pain. I listened to a doctor two days ago on a lecture about neuropathy and becoming complacent in your treatment. For me since my neurologist died in 2022 I have been pushed off to the side and have gotten progressively worse.
I can’t believe I spent money to fly to Boston to see a research neurologist to be told she can’t treat me because I live in Texas. The food very expensive 30.00 for one sandwich.
She did all these recommendations and promises just to be lied to.
Yesterday when she told us ( my husband and I) she would help us excited then lied to. Truthfully, I do not know where to go from here. So accepting this is difficult when you can’t get treatment. I have severe axonal sensorimotor polyneuropathy and small fiber neuropathy. Then you’re told it’s in your heart and the doctors can’t control blood pressure and arrhythmias. The electrophsiologist gave me seven years to live. I am sitting hear thinking only God knows when you are dying. So I really don’t believe you can 100% accept this disease when it keeps progressing and you get worse. Falling stinks over balance issues. To me it’s just some days are worse than others.

Up above someone made the comment about the word progressively worse. When your balance problems and you keep falling and injuring yourself.
When the doctors have a hard time controlling the arrhythmias and blood pressure medications because as they put it my nerves are shot in my heart. Do not qualify for pacemaker or ICD (pacemaker/defibrillator because the device shocks your nerves back into normal pacing. You do not have the nerves to shock. That’s the day the electrophsiologist said I have seven years left cardiac autonomic neuropathy (CAN).
Definination of progressive-
happening or developing gradually or in stages; proceeding step by step.
"a progressive decline in popularity"

This disease gradually progresses in stages. So the word progressive does apply.