Frustrated to the MAX!!!

I understand you! I think that you’ll find most of us on hear can feel your frustration. We might look OK and not have visible wounds so people can’t comprehend why we can’t take their simple, loving advice. Puts a lot of real meaning in “If you haven’t walked in a person’s shoes….” I think that’s why a lot of us looked four and found Mayo Connect. It’s frustrating and exhausting to constantly fuss with others about our limitations and they think we’re just defensive and in turn get frustrated with us. It’s the only place I have virtually found people who understand. We all understand and usually can learn how to live with this more than our doctors can help us.

I hope you take physical therapy. They’re the ones who can expertly help us use and strengthen our legs and arms without hurting ourselves and help get the most out of our days. Let them know some of the challenges and external pressure you get from others and suggestions on how to handle it. The bottom line for me, after 8 years of this, is my goal is to get the most out of every day. I am not trying to hurt myself in ways that will set me back days or weeks. I’ve learned my body and energy limits and try to balance them daily. Yes, people do frustrate me with their insistence that I could do things if I wanted to. It’s put distance in some of my friendships because I can’t run, jump, shop, and play with them. So I’ve learned to encouraged to live! I tell them to not let me hold them back, and I’ve had to find new hobbies and interests within my limitations. I sure hope you consider physical therapy or counseling to help you get through this frustration.

In the meantime and always, we have a great support group here that understands, and I’m pulling for you!

Hi @mrshill, I think all of us with neuropathy can relate to how you are feeling. Connecting with others who have neuropathy and learning what has helped them has been one of the best things that helped me after finding Mayo Clinic Connect. I think I shared a link to the Foundation for Peripheral Neuropathy with you after one of your first posts. The also have webinars on their YouTube channel where they keep all of their previous webinars. Here's a link to their YouTube channel that you might want to bookmark for finding other videos - https://www.youtube.com/@foundationforperipheralneu4122.

This webinar was from seven months ago but I thought it might provide some encouragement which we all need on a daily basis.

FPN Webinar: Session 4: Living with Peripheral Neuropathy: Real Stories of Resilience and Hope

Yes, but you must lose the anger no matter how much lack of understanding people have. People have less empathy for angry people. Force yourself to stay positive and pray. Prayer has helped in many lives of recovery. I do feel your pain as I have had neuropathy for about 5 years. I have realize it probably wont go away entirely, but It has improved with different remedies. I have been taking the magnesium supplement Mag 64 or Slow-Mag 2-3 time per day. I contribute this to less pain and cramping which has led to better sleep and more walking. Have your magnesium level checked.

Good morning, @mrshill

I believe we all understand you to some degree. What you're experiencing echoes what we've all experienced, and it's not just physical. I know you're sensing that, too. The inability of family and friends to understand can be just as painful, sometimes more so. I had an example of this only this morning. My partner and I are in the midst of a move. I'm unable to drive (more the result of sepsis than my neuropathy), although I've a perfectly good Jeep parked outside. My partner asked if her cousin might use my Jeep to carry some of our belongings across town. Ordinarily –– were I my former heathy self –– I would have said, "Of course! Use my Jeep." But a surprising thing happened: A possessive corner in my brain caused me to respond, "No, I'd rather not let your cousin use my Jeep." Mmm? Why did I respond that way? What possessed me? Moments later, I was able to explain to my partner –– after saying, "I'm sorry. Sure, let him use my Jeep" –– how much it hurts me not to be able to be able to help with our moving, that my disability makes me feel like a half-person. I know that's nonsensical, childish, too, but that's how it is. At least I was being honest with myself –– after a moment's reflection anyway.

You have my best wishes for recovering strength and ever-improving days, not only physically (in which we're all limited in our individual ways) but emotionally, too.

Cheers!
Ray (@ray666)

Living with chronic pain that NEVER goes away for a long period of time is draining, both emotionally and physically. No matter how much some one tries to empathize with us, they'll never really understand the toll that it takes.
I've been dealing with chronic pain from osteoarthritis and neuropathy for 10 years now. I know that I'm not going to get any better, at the age of 66 I feel like I'm 86. The only reason I'm still here is my wife of almost 43 years, our 2 kids, and our 4 grandkids. I'm living so I can see our grandkids get married, hopefully.
It's hard, I know, but you're not alone, so don't ever give in.

I love what you said and so appreciate the understanding. I’m going on a year with neuropathy and have found ways that work for me and my neuropathy. Others think, you can do it come on’ when in that moment the sharp pains begin, the burning, the redness and puffiness. What I’m experiencing now when I want to take a bath, but I know better to not irritate my feet and legs more because I’ll be in agonizing pain later. It’s just insane how this disease can take over and control you and I’m even on my meds to help elevate it all! I appreciate y’all so much! Being alone in this battle can definitely make you lose your mind, so thank you again!

@johnbishop thank you so much! I’m definitely checking out that YouTube channel now 🤗

@ray666 you hit the nail on the head! I’m a hairdresser and would always cut my husband and son’s hair, of course I can’t do that now, and it kills me every time they go out and pay for haircuts. It’s just another neuropathy slap in the face. I appreciate your story though. It helps to know I’m not alone in this ❤️

@mrmacabre I'm 34, feeling like I’m 74, and have said to my husband that if it wasn’t for him, our son, my dad, brother and in-laws, I wouldn’t see a point in keeping on trying. It just wares you down to nothing. I couldn’t imagine having another disease on top of it. My heart goes out to you! The people in our lives definitely keep us pushing, that’s for sure! Just know I appreciate you and we’re in this together! ❤️

Good morning, @mrshill

You are DEFINITELY not alone in this! The story I told yesterday about my Jepp and irrationally-possessive me was just a snapshot of what I'm experiencing these days. As I mentioned yesterday, my partner and I are in the midst of consolodating houses, so lots of noisy, chaotic moving going on. The sound of the unspooling of packing tape alone can be deafening. 🙂 This week, my partner has arranged for her sister and a duo of cousins to come to town to help with the moving. I have had to explain to my partner that when the noise and the yakkity-yak and the wheezing and the grunting get to be "too much," I will have to be elsewhere. She understands that my need to be elsewhere is not because I don't want to help; just the opposite: I WANT to help, but my PN prevents me––prevents me from doing anything but the most menial of things. That hurts. I wish it didn't, but––if I'm to be honest––it does. And thank goodness my partner understands. Thank goodness, too, I have an elsewhere (our other house) to which I'm able to retreat.

Cheers! (and I mean this most fervently)
Ray (@ray666)