Okay, so this journal won't be a mass of self pity and misery, I promise. But, I also feel it's important to enlighten the general public about the rare disorder I have. So.....

I am 40 years old, and I have Fibromyalgia, Bi-polar disorder, and Ehler Danlos Syndrome. The rare disorder is Ehler Danlos syndrome. It's basically a defect of all of the cartilage fibers in my body. That means I have muscles that don't work right, very loose joints and tendons, and fragile skin, bones and blood vessels. In me in particular - I bruise very easily, have a clotting time that is triple what is normal, and tend to break bones very easily. Next up - fibromyalgia, which is a debiitating fatigue disorder which causes muscle weakness, fatigue, and sleeping disorders, in that I don't sleep.

Okay, so why do you care? You probably don't, but since part of this journal is going to be dedicated to my pain and fatigue levels, you might wonder why I have the fatigue and pain levels. The sleeping factor (or lack of sleeping) causes the pain and fatigue to spike. On top of all this fun, I look perfectly normal. Gee, what fun are we having now?????

Great websites for more info:
www.ednf.org
www.fibrohugs.com
www.butyoudontlooksick.com

Today's weather - overcast and gloomy with a lot of dampness
Today's pain levels (scale is 1-10) probably around a 7
Today's fatigue (again, scale is 1-10) is around 8

Tags: eds, fibromyalgia, paid
Current Location: Home
Current Mood: uncomfortable
Current Music: none