Neuropathy Can Strike When You Least Want It

Today's post from aardvaarkwrites.com (see link below), is a personal account of how neuropathy can disrupt your life when you least expect it. It also talks about the lack of understanding from those near to you when you talk about your neuropathy symptoms - something many people will be familiar with. It's not surprising really, the symptoms are difficult enough to put into words, never mind explain convincingly. This person's blog may be worth following for those in a similar situation.

On the road to Mayo Clinic
Peripheral neuropathy and me — my run-up to Mayo
Dede Atlanta Nov. 6, 2013


Peripheral neuropathy at a time like this??

I guess it’s like having a baby; there’s never really a perfect time for it. So I’ve heard, anyway. But, peripheral neuropathy is like that. It has certainly interrupted my life at a most inconvenient time.

My family doesn’t understand me….

The title above is a gross generalization and not strictly true. But, when it comes to my struggle with peripheral neuropathy, there are some things they don’t, and really can’t, comprehend. This is my theory — three main points:
They can’t see what’s causing the worry and pain and embarrassment. It’s not like a scarlet letter.
They’re simply tired after listening to years of whining about my feet? It’s boring, after all.
And, finally, it’s an inconvenience to be around. They want to walk and see and explore, and my feet always hurt. Drag.

Truly, even my neurologist told me there were people in the world in more pain than me and that I should get used to it.

In fact, thanks to a referral from one of my doctors who does seem to get it (not a neurologist, interestingly), I’m off to the Mayo Clinic in Jacksonville in January 2014.

I hope, not for a different diagnosis, but rather some care and direction about how to cope, where I can find people who do understand and, especially, a neurologist who grasps that PN is happening to ME. I’m sorry for those other people in pain, but this is unequivocally about ME.

So, I plan on writing about my run-up to Mayo, like Steinbeck and Travels With Charley. Another great doctor (again, not a neurologist) suggested I start a blog to talk about how overwhelming and scary peripheral neuropathy is becoming. So, in response, this blog….

I know my family wants to understand, so maybe my writing will take some of the mystery out of this bothersome condition for all of us. I hope so.

I may end up my favorite and/or only reader, but I feel better already, and that’s a good thing.

http://aardvarkwrites.com/2013/11/06/peripheral-neuropathy-and-me-my-run-up-to-mayo/