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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Views of my visibly happy afternoon & purple house

After walking through the backyard to my parents/caregivers house to pick up meds & magnets, I walked around the yard looking for our adopted outside discovery, Pepper the turtle. I didn't find him but I did smell the gorgeous flowers left behind from the previous owners. My back was going out quickly, so I dashed (a very slow dash...) home & after resting put up my favorite Wilco poster from my brother with my super heavy magnets on my fridge.

It's right next to the soon to be record player orange corner! Very excited about that. I then put on my ultra expensive lidocaine patches-they take a bit of the edge off of pain, though they are $500 for 60 patches-& I have to get my neuro to sign off on them so insurance will pay. Ugh.

My old dorm room white board is on the fridge, where we keep notes-today was hoping our cat Macy gets better-she has badly damaged kidneys & it looks as if these are her last days, so we are really sad. Next a celebration of invisible illness week, & after last week it finally feels a bit fall-ish in the air. Ahhh yes.

I've been in my little purple house a month or so, & for the first time I lit candles. Mom is always fearful of this as sometimes my meds make me sleepy, but of course I'll be mindful. I haven't really been able to use candles since moving in with them 6+ years ago. Amazing how lighting a candle brings me independence & joy-something most people think nothing of & light candles daily-for me it's a huge deal!

 

The candle in the dark as seen from my bed-on the coffee table. I'm really starting to feel this little house is mine-that it is my safe place where my illnesses are ok-that is my skin is hurting I can be naked & not worry as Chai bunny doesn't mind, & being on the back of a fenced yard my windows are safe & private. Being sick sucks, but making small changes to accommodate mean the world!

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Chai bunny's new neighbor

Being housebound I don't go out. Really ever...except to doctor appointments or into my parents. Dad had found a turtle last week when mowing, & today came & told me that the turtle-we think a box turtle-was out running away from the weed eater. Mom suggested I throw bits of Chai bunny's leftover veggies to keep him safe in our fenced yard-but I was feeling ok & actually went out twice-in 107 degree heat index weather. I took a piece of carrot & found the turtle digging a pretty decent size hole to hibernate in, & when I gently lifted him out he/she hissed at me! Very Chai bunny-like behavior. Later I returned & walked right passed him without noticing. Fantastic coloring! He had eaten the tip off one side & came out & started walking. He isn't at all nervous around us to my delight...we are still trying to come up with a name-& me energy to search for him more often.

 

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