Monday, November 29, 2010

Disappearing Dragons and Spoonie Support

It appears that the major flare up that I've had for the last few weeks is going away. Thanks to everyone for their thoughts and prayers throughout the whole ordeal. I never thought that I would be so debilitated again, like I was post spinal surgery, but alas, Stills comes into my life and I can't do a damn thing physically. Its like I'm a two year old. I can tell people what I want but the only thing I can do for myself is go to the bathroom eat and sleep. Oh yeah, and there is always a nap time worked into a day.

I have found a lot of satisfaction in finding the website www.butyoudontlooksick.com where everyone understands what it's like to have a chronic invisible yet debilitating illness. It's a great online support group and although it's not specific to Stills disease, the people there do understand. We call each other "spoonies" and there are great articles, some that make you laugh, some that make you cry. They make it feel ok to just say, "I can't do xyz today, sorry!" without feeling guilty. What a wonderful thing.

1 comment:

  1. Have you ever checked out chronicbabe.com or dailystrength.com? I have un on dailystrength and I lurk elsewhere. It's like settling into your favorite comfy chair when you can talk with others who just get it.

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