Wow.... I am so sick of hearing it. Since my nervous system and life has been under attack and I am struggling through the days, it seems everyone likes to tell me how I look. I don't care. I want my life back.

and....sorry to disappoint the few people I see who even know that I have a "disorder", I feel terrible. Sorry if that makes you uncomfortable!

It seems like the expectations after 5 months since that trip to the ER, that some of my extended family members are just sure that I must be better by now. I get it! I should be, because what the heck is making my nervous system go completely haywire anyway???

Any advice? What to you say at this point when you are feeling this badly? Is there even a point? Should we smile and say good, yeah better, great... as there are icy hot needles pricking and muscle spasms, numb body parts, dizziness........just to appease?

Just because I'm not complaining every time I get stabbed in random body parts or that my vision can't see straight sometimes doesn't mean I am normal. Actually I feel like an alien.
Wow. I feel better now that I just got that out of my system.

I tell people I wish I felt as good as I look or that looks are deceiving. I don't get too many people that tell me I look good right now, but, for 15 years, I wanted to cry every time I heard that.

I smile and say that's nice, can't be bothered saying anything else anymore because they just don't want to know as they are all talked out. Do t take it personally is easy to say I know, and I know also how much it hurts that they just don't get it. But, it will be their road to hoe someday no doubt in the future and they will look back on their comments to you and the penny will drop. Cold comfort, but there you are, it is what it is.

--discussions about this int he past, as neuropathy is one of those "no-see-um" conditions in which you can look perfectly normal while greatly suffering.

The people who get motor neuropathy, in which their muscles atrophy and/or in which their movements become impaired, or who eventually require canes or wheelchairs, tend to get fewer of these comments, obviously. But that is not the majority of neuropathy patients, whose symptoms are mostly sensory, though they can be extremely debilitating.

There will always be a group of people who ask "how are you" as a social convention who really don't want an honest answer. There's little one can do to change or educate them, other than they themselves being stricken with such a condition (and honor keeps me from wishing that TOO often). One CAN eventually drive them away by actually answering the question in great detail (I've had considerable success with that ).


In the end, you will learn who actually cares about your situation, and whose queries need to be ignored or answered pro forma.

when asked how his mom was feeling, (she had cancer) he would respond, "the same."

that seemed to be a polite answer which didn't offend the inquirer and ended the discussion.

http://neurotalk.psychcentral.com/thread211022.html

I lost ~60 pounds at this point. All I hear is how good I look from people. Having an overdeveloped sarcasm portion of my brain things were messy at first.

Then I realized, **** this is going to continue. So I matured... a bit.

"wonderful" or "simply wonderful" when asked and I am having a one of those days (like today)

as your interactions by conversation is how are you doing with the sense of loss? That was what made me want to scream into the wind. I still bubble w/anger sometimes but it is getting better. A smarter person would know the stages of grief. It is a subject that is so deeply personal, I fear hurting your feelings even more. Your life is not what it used to be and I had to examine what it was that I was feeling. Coping mechanisms come naturally and I guess that is where the old saying "Time heals all wounds" comes from. Wishing you the best, in my most apologistic tone,Ken in Texas.

Time may heal all wounds but scars remain. I heard that somewhere.