Finding home

Today was one of the most painful, exhausting days yet was the day I felt most at home. I often have CFS (chronic fatigue syndrome) symptoms-extreme exhaustion-just walking 5 steps to the bathroom can leave me worn out. I slept on & off all night & day, & finally figured out that putting pillows under my arms helped the pain a little bit. Having extreme joint/elbow pain from rheumatoid arthritis, fibro, & oesteoporosis causes painsomnia. Even with the pain, tiredness, & fever-like feeling, I felt really at home today. For me, home has always been mental & not based on location-living in the Czech Republic I felt like I was home...& in the mountains of Brazil it seemed I belonged there. Deep down of course I knew that moving here would work out-I never have minded change, for that signified excitement & new experiences...but that was when I was moving around overseas, etc. Today even with boxes still packed & no pictures on the wall it didn't matter. Sleeping in my old bed, with 8 pillows arranged in order of relief, & a fridge full of Marnie safe food, & Chai bunny resting underneath my foot as if it was a bunny nestling above her head, mentally I felt ok with the world. Mom had sent over a jar of flowers-ones that had broken off an arrangement dad was taking to put on my brother's grave Sunday-& with wet hair from sticking my head out the door watching our turtle-who we named Pepper-walk around in the pouring rain, I took this picture to capture my happiness. To document the proof that I was ok. That even with tremendous pain I felt at peace. That my little purple house had become my home.

 

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Stillness

Some days the impact of what I CAN'T do overwhelms me. I've been living this way for years now, but certain days I wake up from dreams in which I'm not sick, then realize I still am. It's quite a cruelty joke-in my dreams I run, dance, love, date, am with friends...then the stillness hits me.

 

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The disguise

I painted a picture recently that turned out horribly. Really just awful...it was a flower, possibly a Poppy that grew outside an apartment I lived in during my time in the Czech Republic. This morning I put the painting through the fantastic Percolator photo app, & it turned out really cool. It so reminded me of a chronic illness-fibromyalgia, interstitial cystitis, rheumatoid arthritis, chronic fatigue syndrome, etc. It is such an ugly disease, but when mixed with a person it looks normal. They don't look sick. Anyone with an illness like this-even emotional illnesses as well know this too well-the 'you don't look sick' thing. Anyway, this painting just brought that disguised normality home today.