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Increasingly Difficult to Accept Peripheral Neuropathy

Neuropathy | Last Active: Aug 27, 2023 | Replies (163)
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@njed

@jenatsky You bring up some good points and I tend to read your posts; they are of interest for sure. I have zero medical background and I think what was most difficult for me to understand about PN is that this creeps up on you over time and then, uh oh. Mine is idiopathic sensory motor and not a diabetic. I decided to learn what I could on my own by reading books and literature relating to PN. By getting to know more about PN, learning and understanding how it impacts us has made it easier for me to accept. Like many others, we were not given a choice do we want PN or not....but, we do have a choice on how we live with it and manage with it. Acceptance is the first hurdle. Best to all! Ed

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Ray Kemble | @ray666 | Aug 24, 2023

Good morning, fellow PNers!

Ditto to all that Ed (@njed) has said. I did much the same: I went from my diagnosis (like Ed's, also non-diabetic idiopathic sensory/motor PN) straight to learning as much as I could about my disease. (It did take me a while before I'd use the word "disease;" good ol' denial had me using words like "condition" and "situation.") Contact's mentors, like John, directed me to several sites (e.g., the Foundation for Peripheral Neuropathy) that helped to educate me and lessen my stress.

Something else I've been doing since getting my diagnosis is phoning and sending letters to my legislators asking that they put the full force of their office behind nationwide research funding. Friends have told me I'm wasting my time trying to persuade legislators. That's not the point, however, which my friends only partially understand. The point is to DO something, like educating myself and sending letters.

At first, PN left me feeling helpless. I hated that feeling. I felt like a marshmallow with a disease. I couldn't live that way. I may have to live the rest of my life with PN, but I don't have to live like a marshmallow. I encourage all of us to look for something that can be done, whether learning all you can about your disease (ah, I said "disease" LOL) or pestering your local politicos. It can make a difference. It sure has for me. 🙂

Cheers!
Ray (@ray666)

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