Increasingly Difficult to Accept Peripheral Neuropathy

Hi, Barb (@bjk3)

That's ironic. All of my life I've never thought of myself as a "people person." I've lways been the sort of a guy who, at social get-togethers, you'll find in some quiet corner reading a twelve-year-old National Geographic. Maybe PN has changed me in that way, too. Possibly? Has PN made me both a wall-walker and a people-person. Should I thank PN. Naw, I don't think I will. 🙂

Ray

LOL!
~ Barb

I learned many years ago, that feelings are neither right nor wrong! You are entitled to express your feelings!!

No cheerleading from here. Just what has so far helped me--
I have felt similarly for different reasons. I had a relatively good run into my old age, eating and exercising healthily. Then, wham! Stenosis, sciatica, failed PT, spinal fusion surgery, unrelated infection, re-hospitalization, dropped left ankle, numbness, pain, neuropathy, defensive surgeon, more pain, then searching for and finally finding an inquisitive neurologist, and an optimistic, knowledgeable physical therapist. Meantime, and crucially, my husband was able to switch to caregiving, assuring me we were still in this together, and I was not a burden. This was key to my beginning to regain a sense of worth.
Staying in the day and staying out of the dark movie my mind can produce about my future also has been key, along with therapy and prescribed medication for depression. Joining the local senior center and continuing a Zoom meeting with a former support group has also helped me keep my head up and more accepting of the "new normal."
In my mid-80's, I am learning to walk again, first with a rolling walker, and lately trying out forearm crutches. I'll still need my power chair, but I have greater leg strength through PT and exercising, and PT will concentrate more now on my endurance. My pain has lessened over the years, which is never guaranteed, but for which I am grateful.
My husband and I are also making plans to get ahead of any future health crises by selling our beloved home and moving to a nearby independent living community. These are big changes, but we are able to ask for and get help from our family, to navigate it mentally and emotionally, and to have this option financially.
So, while this is a long post, it's the condensed version of my time since neuropathy arrived in my life. While it is different from your story, the value we can find here is that we are understood, and not alone.

Good morning, efgh1020 (@efgh1020)

Yours is one of the most eloquent posts I have read in a long, long time. I hope you'll not mind my sharing it with my partner who, this morning especially, needs a lift. Only yesterday, she was told by her doctor that she's to begin what promises to be a lengthy journey of tests, not to identify the cause of what's ailing her but rather to eliminate the many things that aren't the cause. She's nervous, as am I. I want her to read your words. You say so many things that hit the bull's eye. "Staying in the day and staying out of the dark movie my mind … " are precisely the sort of words she needs to hear right now.

I wish to a glorious weekend!
Ray (@ray666)

Thanks, Ray. The road to diagnosis can be a rocky one, with lists of tests of all kinds. If anything shared here can give your partner a lift in her fact-finding process, it would be a plus for me as well.
Thanks for your good wishes for the weekend. I wish you both the same.

Ray
I am so frustrated with my PN for so many reasons. But the most depressing reason is that I cannot walk without using a walker. Even with the walker I can only walk maybe twenty to 30 yards before I have to sit down. I have a transport chair that my wife can push me around in if I want to browse a store or go to any event that involves walking a lot or standing a lot. I’m 76 but before this PN hit me last September I was very active as a senior. I played golf, went to concerts and never missed my grandkids sporting events. I could go on forever about how my midlife has changed for the worse. In spite of all the tests and doctors and physical therapy and pool visits and home exercises I still can’t walk on my own. So I’m not going to give up but there are times when I really really want to give up. Thank God for my wife, who does EVERYTHING for me, and my friends who will not let me give up. Best wishes to you.

My partner was as moved by your words as I was. Something in what you said echoed what the doctor said, advising my partner not to jump to conclusions (especially conclusions induced by reading too much on the Internet 🙂 ). Once more, here's wishing you and your husband a 5-star weekend! –Ray

Hello, @rjack6618

When you say, "I’m 76 but before this PN hit me last September I was very active … I could go on forever about how my midlife has changed … " I immediately think, "Oh, boy, do I know what you mean! I was a long-distance runner. Can't do that anymore. I made my living as an actor. PN made stage work impossible, if not downright dangerous. Although I've adjusted fairly well, I can remember what it was like a few years ago, when I got my PN diagnosis, looking in the mirror in the morning and asking my reflection, "Who are you?" It's taken a bunch of months for me to figure out who I am––who I STILL am!

Cheers!
Ray (@ray666)

Omg. Im so sorry that you have to live with this. I also have severe sensory autonomic polyneuropathy. Im in constant pain throughout my body.
Dr's are having a difficult time diagnosing the cause. Mine began in my toe in 2014, today its all over, my eyes my memory is going. I have it severely in my feet, I can no longer feel the ground and need cane or walker or I'd fall over.
My eyes began with blurring, now the light blinds and hurts my eyes. I've lost a lot of weight due to the disease. Im so weak, fatigued, anxious and lack sleep due to it.
When driving it sometimes feels like I'm in a tunnel it makes me anxious and afraid, but leaves in a couple minutes.
The severe throbbing burning pain in the legs from ankles to buttocks is so much worse when I lye did it's 24 hour pain.
Im becom a mean woman and can't seem to control my emotions.
I thought from the pain med, but have since gone off them and still can't control my feelings, mainly if something irratates me.
My hands and fingers have lost their strength, I drop things. My hand writing is beginning to be affected by it.
I cannot take the gabba, but still take it to help the pain some. It makes me feel so loopy also contributes to my imbalance.
I cannot live with this much longer. It's consuming me and has taken away all my joy, with family, friends, and all socializing.
Tell me you're still with us! I've told my family that this disease is killing me but no one seems to take the time to read up on it. They are oblivious as to why I need my cane or assistance.