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Monday, April 19, 2010

Strange journey………

I’d like, if I may, to take you on a strange journey……….
Just stay with me…….
We had a lengthy walk yesterday at Enupa Park over some not so level terrain which is very trying for me since I only operate on a balance system that runs at about 25%.  I’ve been through balance rehab; so I CAN make a journey like that. It’s just a real mental workout since I have to solely focus on the ground beneath my feet in order to keep myself upright. It leaves me exhausted and with a good case of brain fog.
So last night, time for sleep, right? Should be tuckered after all that walking, right? WRONG! Just as I was going to sleep my nerves began to wake up. Uh, not exactly the best timing guys. Can’t you see I’m trying to go to sleep here? They obviously didn’t care.  Maybe I should up their salary?
Anyway, imagine with me that you are a famous movie star from years past like Audrey Hepburn in Breakfast at Tiffany’s.  You’re wearing long black silk gloves.
zgloves
Now, you’ve realized your feet are cold. So you done some nice warm long wool socks.
zkneehigh
Crazy, I know; but, just stay with me here.  Now, this is where things get a little tricky.  Imagine that both the gloves and the stockings are hooked up to electric lines at low voltage.  They both cause the tingly, itchy, painful feeling that you get when your foot, or whatever, part falls asleep.  The problem is that you can’t wake it up and you can’t take off the gloves or socks. Welcome to my world of neuropathy!  The condition is known as gloves and stockings syndrome and it’s not fun. Most times, it’s just a steady, low current.  Last night, it was wildly fluctuating and almost caused a panic attack.
I decided that panic was no good, so I got out of bed to play around on the internet. Just something to get my mind  off of it while the drugs worked their magic.  Finally, about 2 a.m. after drugs and a long hot bath I was able to get my system to settle down enough to find some sleep!
Quote of the moment:Peace. it does not mean to be in a place where there is no trouble, noise, or hard work. it means to be in the midst of those things and still be calm in your heart." ~ Lady Gaga

5 comments:

  1. Hope the nerves have calmed down.

    I find that being up on my "pegs" so to speak makes it worse some days. And the more days in a row the worse it gets....sigh!

    Hoping for better day today for you!

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  2. In the midst of trouble I pray, maybe cry....repeat. Interesting information on gloves and stockings syndrome. That must be difficult to live with.

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  3. Ugh, I also have neuropathic pain problems :(

    You have a beautiful blog :)

    Annie

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  4. As I read this blog of yours today I am finally feeling that I am not going crazy, I too have had that electric feeling to through my leggs and lasts about 15 minutes. I then fall asleep but it really freaked me out. haveing cerebral Palsy I thought that might be it but now wondering. The cronic pain and weakness is trying me.
    We shou;d start a blog for amazing husbands that have wives that deal with pain..

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  5. Oh my! Is this related to the ACM type 1 or is it a completely seperate issue?

    BTW - I love this quote you included!

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