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Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: Oct 17 5:52am | Replies (571)

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@sunnyflower

Dear Rachel, my heart is breaking to hear all you've been through. I have a similiar story in that I have so many afflictions besides neuropathy. Neuropathy tries to destroy my life. The symptoms are so many. I fight for my sanity and crawal out of my skin. Ug. The Gabapentin and Lyrica have horrible side-effects but am now back on Gabapentin. It helps me not jump! Thankfully I'm a woman of faith and my God is so present and gets me through. His peace through Christ. I know this life is only temporary and I will get a new body some day!!! In the midst of all my diseases and unrelenting, often intolerable pain, I have joy and hope and assurance. I find I have to ask close people to adjust their expectation of me. I hate doing that. No one understands this pain. I00% of the time I tell people when they ask how I am, that these are facts not complaints. I will pray for you when my failing memory allows! Many blessings and warm regards, Sunnyflower

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Replies to "Dear Rachel, my heart is breaking to hear all you've been through. I have a similiar..."

@sunnyflower Neuropathy is often an invisible disease. I suppose some people's thoughts aren't very kind when they see me park in a handicap spot, and see me walk into a store with no cane or limping or whatever. They just don't know how much every step hurts, and as a rule, handicap spaces are closest to the door, saving me a few steps. Mental illness is another invisible one, mostly. People like my service dog, and sometimes will ask me what her service is. Usually, telling them that she's a psychiatric service is enough information, but sometimes people have a lot of questions because either they need a dog, or someone in their family needs one. I try to be polite, and hopefully make any interaction a learning experience. I've had only a few negative encounters with people who don't believe me, or don't believe that a psychiatric service dog isn't a real service - it should only be a companion dog or whatever. I carry a card with the ADA information to show if necessary.

Jim

@sunnyflower if you wanted to post a more complete picture of your illness you have an interested audience here on Connect. You mention "so many afflictions" as well as "no one understands this pain". On Connect I think you actually have found a place where many people might be able to understand what you mean. You also mention your memory failing. Many of us have memory issues due to aging but in your case is this another symptom of your illness? Just want you to know that, at least in my short time on Connect, I have found some pretty sympathetic and understanding individuals. My wife has peripheral neuropathy and lives in pretty much constant pain. We have learned a lot of info that has helped her by participating in online forums such as this, but I think Connect is a particularly good one, at least for our purposes. So feel free to unburden yourself if it helps. I am so glad you can find solace in your faith. I too rely on that as my rock, as does my wife. That can hold one together like nothing else. Best, Hank