Increasingly Difficult to Accept Peripheral Neuropathy

@fisbo - We have all been there at one time or another but it is not a good place to be. I don't have any magic words or treatments that are going to cure your neuropathy. I'm no longer who I was either. I have difficulty walking and doing many other things that were fun when I was in my 50s and younger. Growing old with PN is the pits to say the least.

What helped me was to not focus on what I couldn't do anymore or the health issues I struggle with on a daily basis. Instead, I try to focus on things I specifically can do. One of those things for me was to examine my surroundings and find something everyday that I enjoy. Sometimes it's watching one of nature's little critters bouncing around looking for food and sometimes it's just helping a friend or neighbor.

This feeling of being a boring burden was the “valley of the shadow” for me, and it is a lonely, frightening and disorienting place to be. I found help from my spouse and family, from friends, and from a therapist and antidepressants. The pain is a breathtaking addition to all of the emotional and existential dislocation we feel. I agree with John’s note that focusing on what I can do has helped greatly. Gradually I rejoined a club and a chorus, and I stay in today, not in the scary future picture my imagination can create. This takes practice and the company of like-minded people. It also takes time, and spiritual, emotional and physical therapy for me.
I hope this is of some help and comfort. You are not alone.

I recently realized one of the big changes this illness has caused - my self-confidence is badly damaged. I’ve always been a leader, doer, expert in my professional field. All that is gone.
I told one of my long time friends recently “ the old Julie is gone. This is the new Julie”. Because I don’t complain, they don’t understand. And maybe they don’t want to see what could happen to any of them. Maybe they think I’m exaggerating.
But … not to further depress you, fisbo. In spite of this, life is pretty good. And I can always find someone with worse problems, right?
But it sounds like you are not at the acceptance stage, and that’s okay. Don’t give up - you don’t have to live in terrible pain. You just haven’t been given the right treatment yet.

There is an older discussion on the same topic as this discussion that I thought it might be helpful to see if some of the members from that discussion might have some additional thoughts to share here in this discussion.

@jshdma, @harriethodgson1, @jimhd, @oldkarl, @thankful, and @artscaping shared their thoughts in the discussion started by @keeptrying back in 2017. I thought they might have some new thoughts since they last posted on the topic here:
-- Acceptance: Anyone have difficulty accepting new limitations daily?:
https://connect.mayoclinic.org/discussion/acceptance/

Acceptance of a disease that includes chronic pain is difficult. I was dealing with depression, anxiety, PTSD, and suicidal thoughts before pn struck. I have therapy regularly and have seen a string of doctors, looking for ways to lessen the pain. Over the years I've, for the most part, come to terms with both the physical pain and the emotional/mental pain. I find it very difficult to face living with a progressive disease for which there is no cure, and at the same time acknowledging the possibility that the mental issues will be maintenance issues. It's a work in progress, and the more I learn acceptance, the easier it is to live with life's difficulties.

Jim

Fisbo - Mentor John is 100% correct, all of us with PN experience similar thoughts and feelings. I spent about 5 years figuring there has to a reason for this. I was in my mid 60's and healthy. Got to be a cause then comes the cure, isn't that the way it works? After going thru many tests at Mayo in MN and then other tests, all confirmed what Mayo said. It sort of hits you that this is how it is going to be. The discomforting effects of PN are serious. But, the acceptance for me was more difficult. My primary doc sat me down a year ago and said you can't spend your life looking in the rear view mirror, you need to look ahead - don't look at the past, look forward. Concentrate on what you can do, not what you can't. I took her advise a year ago and things slowly changed. As Mentor Jim says "learn acceptance" and it takes a while but I'm sure you will work through this. As you more accept this disease for what it is, your outlook will improve.
You will feel different, hard to explain. Wish you the best and remember...look forward and think of everything you can do and do it. Ed

Hello,
I was inspired by your post. I was diagnosed with PN about 4 months ago. Like you have said it is very hard to accept that this illness will be with me till the end. I am getting better at it. I was terribly sad, angry, irritated, and withdrawn until a few weeks ago. I realized that I was relating everything to my illness. What I ate, the medications, how much sleep I can get, how much exercise, and on and on. I would work myself up into a panic attach. I have tried to stop that. I am doing stuff without always relating it to the PN. Everything is not happening because of PN. We have to learn to allow ourselves to get involved with life and accept that we have a disability like millions of others....and man many of them are a lot worse off than me. Thanks for the post. Like I said, it inspired me to keep getting involved.

The biggest problem I have with my diseases comes from my family. They seem to be obsessed with the idea that it is their right to tell me what I can or cannot do with my situation, such as drive, or exercise, or go to church. I know I have a variety of diseases which will hold me back, but I am still alive. And each disease bites me in a different part of my "you-know-what". My eyes are going. I have Torres del Muir from knees up to scalp. Every cell has its own cancer. I have had 55 cancer surgeries now. LGMDr23, GSN, TB, CPVT, CMD, DEE, PYGM, RELN, MY, CF, RANP11-9 CCND1, ETC. PER3, SLC0181, DU0X2, SERPINAL, LI FRAUMENI-S, FKBPI4 (EDS). ETC. My body keeps me informed. oldkarl

To Pocodennis - Thanks for your comments. You are doing well for being recently diagnosed. To me, sounds like you have realized early on that having PN is like many other disabilities and you are fortunate that you have the ability to incorporate PN into your life but not let it stop your life. Wish you the best! Ed

My husband has neuropathy. What keeps him going is a positive attitude. I am very supportive as his wife.