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Member Neuropathy Journey Stories: What's Yours?
Neuropathy | Last Active: Oct 17 5:52am | Replies (571)Comment receiving replies
@bethunger
Beth, you certainly convey a wistful melancholy that has accompanied your journey. You feel you have lost much to this illness. You no longer can take your bike rides, do things you'd like to do with your husband and son or enjoy the work you used to be able to do, helping others with their parenting skills. You have, I think, eloquently captured the essence of what neuropathy does to a person's life. It changes everything, often relatively quickly (much like covid has changed the world in such unexpected and dramatic fashion).
As far as your pain, how well does the pain pump help? Are you still able to enjoy life to some extent, or does pain now rule your life? You talk about "before and after". It can make us sad to remember all that we once had in life but do no longer. The best thing (if the pain is not dominating everything) is to take joy from new or different things. Whatever can keep your spirits up, that is the key. Have you been able to find such things? I appreciate your story, thank-you for sharing it. Best, Hank
Replies to "@bethunger Beth, you certainly convey a wistful melancholy that has accompanied your journey. You feel you..."
Thanks Hank for the kind words. You asked about the pain pump and how well it works. It does help, but like all of the medications it doesn't take it all away. I suspect that like many patients with neuropathy, we are not given the luxury of forgetting the pain entirely.
However, I do enjoy some things now. I enjoy painting despite how amateurish the end result is. I have a little dog that we rescued from our local pound. I enjoy his company. He is deaf and blind but totally in love with life. He exudes joy. He inspires me and keeps me company during the day. I think one of the things I am learning, is to try and be present. To totally attend to whatever is happening at the time. To let myself just be sets off a great deal of guilt. I am trying to recognize how that response isn't helpful. I am hopeful that my husband and I will be able to enjoy some long weekends or other driving trips. I hope you are able to enjoy your life, you sound like you are doing better at that than I am. I am going to keep that guidance in mind; to try and keep my spirits up. It is very good advice, thank you.
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@jestfactsmon, Glad to hear from you and sending thanks for your response to Bet. I think one of the challenges of aging, not to mention chronic health issues, is learning to accept and adapt as graciously as possible to life changes we have to make in the "now". Not an easy task to be sure but so agree that looking for the bright spots that make a day go better is well worth the focus in life altering circumstances.