Addressing the psychological impacts of neuropathy

Andy, I kind of liken dealing with PN to mourning. We go through stages of grief. My PN left me instantly & permanently disabled, though I’m happy today to be able to get around with a walker vs wheelchair, and even drive. I spent time in denial and sadness. I spent too much time in Anger; anger at Neurologists most for not knowing the cause, how to cure, how to live with it, what to expect from it, and Anger that the several I had seemed to lack compassion. Then Anger at friends and relatives who were clueless about my condition but felt like experts in telling me what I should and could be doing. Sadness from separating from friends (and some family) because my physical limitations no longer allowed me to participate in activities they liked & should be able to do in these later years.

I finally came to acceptance, fighting hard to control my own destiny as best as I can, learn to find activities to keep me busy and interested, and cheer and encourage people around me to not let me hold them back from activities good for them just because I’m unable. It’s harder for my husband, but I try extra hard to do as much as I can with him, because he sure has made a lot of sacrifices for me. He’s so happy for me to travel and go to ball games with him that he doesn’t mind having to have handicapped friendly seats.

This has been a difficult 24 hours. My stepdaughter insisted we join her husband and teen daughter at a Lakehouse they rented. I sat on the main level balcony reading, watching them below at the pool. The pool required a full flight of stairs up & down the back of the house, as well as 3 unrailed tile steps within the pool area that would require people lifting me up and down. They were frustrated with me because I wouldn’t do it for them, not understanding that a little fall would land me in a rehab home with serious damage potential, and I have to make the decisions on risks that I take. I had to argue nicely while encouraging them to PLEASE use the pool without me, they’re on vacation! Finally bedtime, and the young healthy couple and teen had to have the main level bedrooms. Hey, they rented the place, they’ll be here a few more nights, and we’re only here for 1 night. Handicapped me and my 79 year old husband were given the basement suite. It’s very nice, but required a dangerous spiral staircase down. My walker stayed upstairs, and I made the trip down only once, at bedtime. I’m blessed my husband carried our bag. I am a prisoner in my cellar bedroom this morning, dying for a cup of coffee, but the only thing I can smartly control is my decision that I will climb those dangerous steps to the main level only one time today, and that will be when the rest of the house is awake and I’m showered and fully dressed and packed for our travel to our next destination, which includes a hotel with an elevator!!

So, when I’m upstairs and enjoying my coffee with my husband’s family in another hour, I will rejoice! But Andy, you’re right, the psychological stuff is real and challenging, and certainly never ending. We just have to keep trudging along the best we can while trying to keep the most sincere smile on our faces. I have been in dark places physically and mentally. I couldn’t control what happened to me or how I got here, but I am in control of a lot of the risk decisions I take, because my goal is to not get hurt and further handicap myself and my loved ones. It often means pushing back against people who think they know more about my abilities than I do after 8 years, but I’d rather them get mad than me break a leg or worse. What I’ve learned about this is more respect and understanding of other folks fighting challenges, and makes me more compassionate and flexible for them.

Hi Andy…great topic you’ve brought up. The mental aspect of this is sometimes as bad as the physical. While we delineate the physical vs the mental…it’s important to realize the mental causes the physical symptoms to be that much worse.
I too have neuropathy causing some numbness, a lot of fatigue, tremors in my hands, poor balance …and also told I have autonomic as well.
I thru waves of depressive feelings and then other times not so bad. I don’t really have a good way of dealing with it…other than going for walks…which thankfully I can still do although it’s getting harder all the time. Like you , a big concern for me is the future…I’m 62 now.
I’m curious what your symptoms are and how close they are to mine? Thank you for bringing up the topic.
Steve

It's very lonely to have neuropathy pain. I am 9 years cancer free but chemotherapy left me with my hell on earth. I have tried everything without success. I now have constant ringing in my ears too and there is no relief for either. I pray about it a lot.

"In other words, how does a 'prompt' work and how and where one posts it?"

A prompt is just a brain kickstarter. I use at least one every morning when I'm doing my crack o' dawn journaling. This morning, for example, one of my prompts was drawn from something writer Jenny Odell was saying last night about the difference between living in 'chronos' time and 'kairos' time. I won't bore us here with explaining what Odell was getting at. Most prompts are simpler; e.g., "The nicest thing anyone ever said to me was ________." You give the prompt a half minute's thunk, then let 'er rip: Write, just write, letting your brain go where it will. A prompt closer to PN might be: "Hearing that my PN was incurable scared the heck out of me … until I learned ________ (or read, or met, or saw)." The fun of responding to prompts, not fussing over correct spelling or punctuation, is seeing what surprising things you'll have written. Often the level of honesty is downright staggering!

Ray (@ray666)

Hi John,
Believe me I have nothing to hide and that's why I shared my email, but thank you anyway.

Just an FYI follow up... It's really not about having anything to hide but more to keep our members safe, safe being the keyword as scammers scour the Internet looking for targets and one of their tricks is gathering unsuspecting folks email addresses and deluging them with spam. It's OK to share email addresses but doing it via a private message keeps it between you and another member and hopefully prevents unwanted emails.

I have had my neuropathy for about five years. It has been progressive, starting with numb feet and fingertips, now it’s my full legs and has been very painful. I could walk independently until about a year ago. Now I need a full time walker. I think this past year has been my worst psychologically. I have been to some very dark places with reality settling in as to what I can and can’t do now. How I can and can’t live now. My balance is totally gone. I have a beautiful grandson that I have never been able to pick up. I’ve only seen him twice in two years. I was trying to muster up the courage to go see them next month for his birthday but after seeing my neurologist the other day I am going through another round of full spinal MRI and other tests two days before his birthday. I’m not sure what got me out of the blackness but I’m not dwelling on the negative so much. With spring coming I am loving the rebirth of our surroundings. I have a boyfriend that takes very good care of me and for now we’re ok. My Dr. still gives me hope so we’ll see. Sometimes it’s hard to read these entries seeing how long people have suffered, but I learn from them what helps. Good luck to all.

xxx Your Type of Music xxx
I uggg your music-type, @mrmacabre, but I’m a musician for the last 50 years and know different types of music and bands and singers and music-writers 🙂

xxx My Wife’s… xxx
I’ve heard your pain, hips, knees, and lower backs. That’s my wife and the rest of her family - specially, her mom of all 3 sisters and one brother - all of them has the same problems. For her adds meds daily. She has that disease of her and her family

xxx Of Me… xxx
It’s hard for my wife when she works - 5 days a week. Now, for me, a physical & mental problems are there. Three days a week, I exercise by stretching & lifting my back, legs, knees, arms, and my head including my brain…

xxx The Pain Inside Me … xxx
Over the previous 3-4 years, I fell down in my garage and hit my 2 rear-ends and killed my outside usage… no more cutting the grass & other outside stuff, including walking longer & supper pain from my Bach to the bottom of my feet - it’s gone. One years ado, that doctor saw my lower back & the problem that he could fix. My pain was gone. Still the loss of the feeling right foot, but was better as time comes. Exercising is great - daily help.

Thx,
Greg D. @greg56xx

I'm sorry to hear what you're experiencing, that sucks. It's hard to comprehend when you're given a diagnosis for a medical condition that has no cure, can't always be treated successfully, and is a lifetime sentence basically.
In my case, I've been dealing with osteoarthritis for over 20 years, and neuropathy in my feet for 10 years now, and it can be overwhelming at times.
If there's any way you can see your grandson on his birthday, do it, whatever pain or inconvenience it may cause, it'll be worth it in the end. Our grandkids are one of the few reasons I'm still here dealing with all this crap everyday.
All you can do is take it one day at a time.

With our without meds (lol) my symptoms come and go affecting every part of my mental and physical body, sight, hearing, swallowing, cramps, numbness, rapid heart rate, sexual function, balence……MENTAL stress and fog. Theses symptoms take turns go and come I am still with meds able go mask most or suppress of them(not the darkness)