I don't want to write about real life right now. You ever feel like that?
We've had a rough summer. D's health scares. Family drama that I don't dare set into print. A young cousin gone forever. Another very ill family member. The stress of living amongst continued house projects. And all the other various stresses that have rocked us this summer.
It's affected my health and caused a terrible flare up of my disease. I'm on day 15 of continuous, mind-numbing, head exploding, pain, with no relief. I talked to my doctor's nurse yesterday and she said, chill out, girl, you've got to find a way to just chill. Easily said, right?
So, I'm trying. I'm trying very hard to ignore the bathrooms that need cleaning and the laundry that's not doing itself and the to do list that has created it's own zip code. I'm not programmed that way. Type A? Yes. Perfectionist? Yes.
I can't help it and those traits are why I've been successful in many things. God works in mysterious ways, doesn't He? Perhaps he sent this disease to me to knock me off those tracks.
When the pain of my disease really gets to me, I'm not real positive. I get gloomy and think a lot about how I'm letting my kid down because I should be super mom and be taking him to art museums and parent child pottery classes (like those things would fly with him!). I dwell on the fact that we haven't done enough exploring this summer and that we really should call a friend and head to a local lake for fishing or swimming or whatever. That he shouldn't have to worry about having a sick mom and trust me, I've perfected my mom's fine smiling act to the point that I can switch it on the minute he walks into the room, so that he's clueless.
The hardest part about having this disease is that it hasn't killed my will to want to do more, be more, see more. The drive in me to work, play, see, and do has never disappeared. I look at my calendar and realize that I lose almost half of my life to this disease, sometimes more. And it's hard not to dwell on the unfairness of it all.
A little while ago, my doctor had to write a note about how I'm not able to work as a registered nurse because of this illness. Seeing this in black and white was more than jarring. It actually stopped me in my tracks and hit my chest hard and sudden, the realization was so raw and sore. He once said to me, "Be content with making your home a happy place for your family. Be content with less and you will find more." I know. I KNOW! He's so right, but I want to feed the homeless and start a nonprofit and protest the war and work towards universal health care and paint my house and make a quilt and learn to sculpt and volunteer at church and write a book and organize my closet and have a party--all in one day.
Having an invisible illness is hard. You look fine, but you feel awful and you try to explain it all to fall on deaf ears because you might smile. Because if you smile, you must be fine, right? What they don't realize is how much you had to reach deep down inside yourself to pull from that amazing inner strength you've accumulated, just to get up and dressed and stumbling through the pain to life to get to the point where they see your smile.
This is a jumbled, makes no sense post, I know. I'm frustrated, I'm hurting, and I can see no relief in sight. I'm thinking a lot about life and what I want to do and how I want more than anything to be outside of this pain. Do I dare even post this?
The Internet is a beautiful thing. Through it I have met and shared with people who live as I do, with a debilitating, invisible illness. Every once in a while, I feel almost good enough to not think for a few moments about my health. And when that happens, I think about the days I had before I got sick when I didn't think EVER about my health. I just hummed along in the bliss of feeling fine, taking it for granted. Those were the days. And I didn't even know how good they were.
I promise. Less gloom next time, but until then, say a quick prayer for me to whatever you believe in. I'm finally, after 9 years of this crap realizing that asking for help isn't a bad thing.