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Increasingly Difficult to Accept Peripheral Neuropathy

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

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@fisbo

You don't get any choice with neurologists under NHS so getting one who specialises in peripheral neuropathy would be lucky. Presumably you suffer with it. I find myself sleeping away a lot of the time. I go swimming but that has gone down hill nowhere near as I used to be. I have been like this for 2.5 years now and not getting used to it. I cannot accept it and I am incredibly depressed about it. Everything about me has changed and I am nowhere near looking as I used to look and be as a person. It's taken so much away from me and left me afraid and nervous.

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Replies to "You don't get any choice with neurologists under NHS so getting one who specialises in peripheral..."

I’m not sure what NHS is. Are you in the US? I think probably most of us have had our personality. I use to be funny and it made me feel good when my friends laughed. They said I missed my calling and should have been a comedian. I don’t have much of a sense of humor. I find it difficult to laugh when I’m so miserable. What makes it worse is we look normal to people and I have heard “ you look normal to me”. Or my wife wouldn’t understand one day we are in bed feeling like we are dying and the next day I would cut the lawn. You don’t know from hour to hour how you are going to feel. As far as anger and depression you’re going through the different stages of grief. No doubt this disease controls our entire lives. One of my friends who was dying of bone cancer told me she felt so bad for me and said she is glad she has cancer and not Small Fiber Neuropathy and Autonomic Neuropathy. To put this in context she did not feel bad or have pain until her last few months. We start out with terrible pain. And the pain can be so different from day to day and rarely do we get breaks from the relentless pain and exhaustion from going through the pain. I’m
15 years into this. Knowing I have to deal with this today is overwhelming just thinking about it. I still try to live as normal of life as I can. Then 2 years ago my wife divorces me because “she has better things to do in her retirement other then sit around watching me die.” She is tired of the doctors visits, emergency room visits not being to travel because of me. 25 years we were married with 4 kids and she leaves. Talk about being depressed…,.,,
Hang in there, you will learn to cope. Yes your life and personality has changed, but try to find something good each day. Even if it’s just laughing at something you read or watched on Instagram. I wish you the best.