Neuropathy and Keeping Your Cool

Ray - I do blame neuropathology on some frustrations. When I was in a wheelchair I most certainly had pity parties and would cry when I was alone. It’s hard when you feel helpless or forget to think positive like Ed says “ focus on what you CAN do, not CAN’T do”.
But I wouldn’t discount that losing your shopping cart items wasn’t a real issue. Before I ever even had neuropathy, my computer could bring out some of the most unladylike like, potty-mouth words I have ever spoken!! Debbie

Ray
I think your reaction was very normal. We all have to deal with our diagnosis in our own way, no matter what disease we are going to fight. If it’s a new diagnosis which you find out is in curable as in neuropathy it becomes a pretty devastating affair with so many reactions delayed or immediate presenting in stages…I was just so pissed off at first then moved onto finding a cure, reading everything I could on google, searching tirelessly for a cure that just isn’t there …eventually comes acceptance but not without a big fight in my case. I look back on great physical activities and adventures I had with much appreciation …Now I’m just looking at tips to managing pain, live life as best I can, while my legs die and go numb from the toes up and hoping that in my lifetime a cure will be found. This diagnosis of neuropathy and living with it, is by far the biggest challenge in my life and I’ve had a few …..All the best with acceptance and coping in the days and years ahead ..

Ray, It kind of reminds me of the old Mills Brothers song - You Always Hurt the One You Love. Acceptance and neuropathy are something that's taken a toll on me also but I'm still a work in progress (aren't we all!). I know we are not alone since there are a couple of other discussions on the topic.

--- Have You Made Any Kind of Peace With Having Your Neuropathy?: https://connect.mayoclinic.org/discussion/have-you-made-any-kind-of-peace-with-having-your-neuropathy/
--- Increasingly Difficult to Accept Peripheral Neuropathy: https://connect.mayoclinic.org/discussion/nor-accepting/

Happy Friday my neuropathy friends! And may you have pain free day with lots of sunshine.

" … my computer could bring out some of the most unladylike, potty-mouth words I have ever spoken!"

That had me roaring! It confirmed my determination to remain a digital minimalist. You might not believe I'm one from my many posts, but I am; I had to become one, or else I'd never get any daytime work done. I found I'm so susceptible to the lure of the digi-sphere that I've resorted to using a browser blocker. Besides helping me to get my work done, the blocker also spares me from shouting any of those potty-mouth words. LOL

Hi, Roslyn

You're so right when you say that acceptance takes time. It simply can't be rushed. Although my diagnosis is relatively recent, in only a few months, I've become a voracious reader of information, trying always to be very selective in where I go for that information. (There's such garbage out there.) My condition, too, is turning me into quite the activist, something I'd not been before (not as energetically as I seem to be now). I'm pushing as hard as I to see that research funding is both there and sufficient, not necessarily that there might be a cure in my lifetime but in the lifetimes of people to come.

Take good care, Rosalyn. I hope we'll get to exchange more posts in the future.

Cheers!
Ray

John,

THANK YOU for these links! When I created my topic yesterday, I wasn't sure if others had created similar topics in the past. I was almost sure someone must have; after all, once you've learned as much as you care to learn about the medical ins and outs of your disease, learning about the balance between what good health remains and simple acceptance seems the next step. And, although I'm quite the realist about my condition, there are always things a patient can do, for some of us, that's less than for others, but if you look, there's always something a person can do, a little for ourselves, a little for others.

Have a fantastic weekend, John!
Ray

I agree, and you have given lots of great "object lessons" of distracting & interrupting the brain from receiving as much pain. My myokinesthetist/PT had me doing similar exercises~ unfortunately they aren't effective when it comes to the problems of instability, imbalance, and the annoyance of continually dropping things, especially to the floor. But, being a person of faith, I have turned this last frustrating occurrence around and thanked God for reminding me that I haven't stretched, bent or exercised as much as I need to, to keep my gait body from being so stiff. And so I thank Him for the exercise! 😃😅🙏

Hi Heidi @erythromelalgiaca, Actually we are all in this together and learning what we can so any discussion you can find helpful is the right place for support. There are several discussions that you might find helpful for Erythromelalgia:

--- Anyone out there with Erythromelalgia?: https://connect.mayoclinic.org/discussion/erythromelalgia/
--- Peripheral Neuropathy vs. Erythromelalgia: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-vs-erythromelalgia/
--- Erythromelalgia: What medications or therapies have helped you?: https://connect.mayoclinic.org/discussion/erythromelagia-medicationstherapues/

The search function on Connect has recently been improved and categorizes the search into sections for related discussions, comments and more if you use the search box at the top of the page. It's really quite helpful trying to locate members with similar conditions. Check it out - https://connect.mayoclinic.org/search/?search=Erythromelalgia+

If you use the search box above the list of discussions on the Connect home page and type a word or phrase, it will find all of the related discussions.

@ray666 No doubt, again, you brought up a very important subject to all of us with PN. I've noticed in the past two years, my patience level is not what it was....well, OK...it was never that great to begin with, but my wife reminds me to be patient with things that have become a struggle in the past several years. She is the opposite, calm personality which contributes towards our 51 years of marriage. PN has a degree of fatigue, and it is frustrating because unless you have PN, you don't know what it's like. I have battled off many other health issues including epilepsy which is under control with meds. But, PN has no meds, no fix. I feel it is OK to get frustrated now and then. You ask how to deal with it. I put on some music - the 60's stuff, relax and think about things other than the PN. Ed

Hello!

There have been so many generous posts about the need to be kind to ourselves, and because there have been so many, I can't be sure if they're direct responses to my little dust-up of a few evenings ago, but if any were, I need to assure you that pretty good about being kind to myself (I sometimes think I'm spoiling myself. LOL)

I'd posted about my five-minute flash of anger and how I'd later realized I was at the end of a long day during which my PN had been a recurring pain in the a**. The moment was unusual enough for me to think it might be worth posting. It certainly was a reminder to me to remain vigilant when I feel an onrush of thoughts of how much I can't do thanks to my PN, to right then and there take an inventory of all the things I can still do – and, frankly, if I can avoid feeling sorry for myself, that inventory is a long one.

Stepping outside of the world of PN just for a moment: I find myself impatient with friends (not angry, just impatient) who, when some setback strikes them, often a minor one (but not always), retreat into a bog of blaming, giving in to feeling exhausted with the world, letting themselves believe the situation is hopeless. They skip pausing and asking themselves: What can I DO? I know that can be a tough question to answer …

Just look at us, folks with our various forms of PN: What can I do about my PN? can seem an impossible question to answer. My ticket to seeing to it that feeling sorry for myself is a once in a Blue Moon event is always to believe there's something out there I can do (no matter how remote; after all, what other choices have I got?) and then take at least one or two steps to move myself closer to that something.

This post has been long-winded (and for my tastes, waaay too New Agey-sounding! LOL) to thank any of you who thought I was descending into despair. I'm not. Just the opposite. I hope you, too, can say the same.

Cheers!
Ray