Wednesday, December 30, 2009


Monday, November 16, 2009
This month is my eleven year mark. It was November, 1998 that I got sick. What a horrible anniversary?! I don't think I could have ever imagined that I'd be sick for this long. What's it like? It's just painful, that's what it's like. I think losing hope is the worst part of the pain.

To celebrate my anniversary I have been sicker than I can adequately describe. My period hit flambastically hard. (I like to make up words.) Cramps that kept me from walking upright and my CFS symptoms through the roof. Wait, I'd like them to go through the roof but they stay inside of me, so that was an incorrect description. The point is that I have been in bed a lot. Missed a lot of life. I've spent 11 years trying to convince myself that the things I'm missing aren't important, but somehow I still care and feel miserable about having to be sick all of the time. I still care about not getting better. I still care about what this illness has taken from me. I still feel pain about not wanting to continue if this is really all I have to look forward to. How can I keep making this be my life? Only because I don't have a choice.

I feel so weak. Why am I not strong enough to push harder? There is no physical strength to even stand up for any length of time without feeling light headed and dizzy. Where the heck does this crapiola come from? (more fun with words) I find myself apologizing to the air around me. As if I've offended the space for being in it.

I realized most people would go to the doctor for the kind of pain I've had this past week. After 11 years I don't go to doctors anymore unless I really, really, really have to go for something that I think there might be a slight possibility of assistance available. I've endured a lot of pain.

Lately, I've been struggling with a sense of purpose. I wrote a book about what I've learned from living with this illness. About 300 pages. The few who have read it say it is very insightful and could help a lot of people. It sits on a shelf. I don't know what to do with it. I realized that perhaps my voice has changed since I wrote it. It took about 2 years to write it. I think my voice is now weaker and not as hopeful. This illness keeps taking away more hope and the book is about hope. haha

It isn't a happy anniversary. That's for certain.

carry on.

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