Wednesday, October 17, 2007

National Fibromyalgia Association NFA

I'm a member of the NFA and I logged on last night to see what's new....they are launching, what I believe to be an ingenius campaign! "take the clothespin challenge" The challenge is simple, place a clothespin on your finger and leave it there for 15min...then you donate x amount of money for every min that you didn't keep the clothespin on your finger. This is a simple exercise to show people a glimpse of what it's like to live with chronic pain. Can you imagine feeling that same finger pain, amplified around your entire body? pile on top of that extreme exhaustion, and sensitivity to light and sound???? How well would you cope? definately something to think about.

Living with this disease it's easy to forget just how MUCH stuff we deal with everyday, on top of the everyday living experience. I'm starting to see a clearer picture of why I'm frustrated, have very little patience, constantly feeling overwhelmed....well it's simply trying to adjust to my disease and integrate it into my everyday living. I can't keep up the same pace anymore....the hard part is some days I feel reasonably good and forget that "reasonably good" for me means moderate (not severe) pain, tired but not (drop dead exhausted), clear thinking (not in a total fog)....before current "good day" would have been a nightmare day!

It always comes down to perspective doesn't it. I noticed that my family thinks I have super sonic hearing, because I'm constantly asking them to turn down the TV, talk in a quieter voice etc. In reality I'm oversensitive to ALL noise. What's sitting quietly on the couch for my husband is for me.......

the dogs nails clicking on the tile floor, the kids outside yelling and playing, the furnace running, the dishwasher banging, the pencil my husband is writing with scratching on the paper AND the TV on. ...

I hear all of these things at what to the rest of the world would be 8 on a scale of 1-10....10 being, your ears bleeding it's soooo loud. If it was just one thing I'd be ok...but I hear all of these things, and on a bad day, I feel totally bombarded and would be easier to have 5 people screaming in my face, because then everyone would know why I was frustrated. It's these weird little things that crop up, that amaze me daily, that this has just become normal for me......and I'm not sure if it's good or just is, I guess.

it's all soooo very weird! I'm rambling I guess...I'm sure I had a point to this...but for the life of me I can't remember what it was lol lol lol lol

anywaaaays, check out the NFA website if your interested! take good care my fellow


1 comment:

aplseed said...

Is that what it is? LOL

I have been noticing an increased intolerence to the usual roar around here all summer. The TV is on nonstop and the family who have been staying here till they can afford to find some place of thier own talk loadly,Sometiimes I just want to scream. I spend alot of time here in the morning before they wake just injoying the relative silence. Like now for instance I can hear a fan that is blowing 7 ft way,and it seems overly load,I can hear the breathing of someone sleeping in the next room.Last week I had this horrible whirring in my head and thought I was crazy. I tapped on the router and it went away ,thank God.. It does seem wierd.