To be a real girl

Day 3 of the National Health Blog Post Month (NHBPM) is the topic 'I don't know about this, but I'd like to', & today for me that is without a doubt How to be/act/respond like a real, normal, functioning person. A little while back, mom & dad had over a family friend, & of course I told them I would come over the 20 steps through the back yard & spend some time with them. After the fact I came back to my little house wanting to crawl under my pile of clean clothes & never come out. I was deeply embarrassed, & it stung badly. The friend in no way probably meant this at all of course. Here's the humiliating details with names & dates changed for those involved. Well, all but me. O. o 

After staying up all night per my usual painsomnia, I had just gotten to sleep when my alarm went off. I got up, took my morphine which would mean a gap in my normal routine later but that's the cost of doing business in my world. Walking through the back door I saw the friend's face change. Eyebrows raised, shock registering before they could help themselves, & as I went to hug them it was if their body forgot how to hug. Acting as if I hadn't just hugged a marble statue i tried to smile & sat down. The poor friend then blurted out a comment/observation about my appearance, & let me just say it came out the exact opposite of the intended tone. Answering the question, it hit them how it sounded, & as dad started to laugh (as he & I had discussed this just a day or two before) & I was really glad to have an excuse to change the subject. It was truly about as low on the humility scale as i'd ever experienced, & i could feel tears coming, but I managed to hang on to my last bit of dignity & not cry. I also didn't want to make them feel uncomfortable-so i just sat down at the me-painful table. Physically sitting in normal chairs kills me, but I didn't want to make the situation more awkward, so I said nothing & sat as we had a small bite to eat. Getting more & more uncomfortable, I squirmed around like a child. The friend had been going through some tough times, & I had seen something that reminded me of their family & I had made a note to tell them-as I tried to get the words out the lack of sleep, pain becoming more painful, & fibro-fog clouding my brain left a fragment of a sentence hanging out of my mouth. I couldn't make any ordered words continue as they stared at me-totally lost I just stopped talking & thankfully mom's plentiful storytelling continued as I stuck food in my mouth to replace my garbled words. Ugh. A few more just odd/half insult sounding things were said, again-they didn't mean them but regardless-my body couldn't take anymore & my heart was already sagging under my dejected weight, so I released everyone & left, smiling as I said my fake high spirited goodbyes. Sinking into bed Chai bunny got up with me & positioned herself under my hand, waiting to be loved.

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Finality in Lights

I love having my new, own place. Chai bunny has loved exploring & ripping pieces off the maze of cardboard boxes, climbing up my 7 pillow stacks, searching for the previously hidden tootsie roll bag with her massive hound dog nose, & taking her stuffed friends all over to show them their new home. We put up a string of lights as a banner on my bed, adding some whimsy & light to my otherwise kept vampire-like dark I keep for my insane fibro-sensitive eyes. Otherwise I've felt I have had nothing to say, nothing to feel, just nothing. My doctor is good, although his wanting to skip a month in visits & not really planning anything new in the way of treatments is a bit worrying. I guess I feel that like an elderly person going into a home I've gotten to the place in a figurative sense I've come to die. That's ok, but just so final. One of the main reasons we moved is to be closer to family, for my parents know after they are gone I'll need help just existing...though I worry & feel badly for whoever gets saddled with the burden of me as a professional sick person. I hate feeling or thinking like this, but it comes to me when I'm sleeping through stress dreams & is on my mind when I wake up. Hopefully Chai bunny will continue to jump on my bed & wake me up with her fuzzy face & big eyes watching me as I open my eyes.

 

 

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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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Sleeping lessons

After finally moving into my motorcycle workshop turned my purple apartment, I've been sleeping with less pain. Being back in my orthopedic mattress sleigh bed is a huge part, along with a few adjustments. My house is small, but a separate house & perfect for me. I made my bed a focus as I spend most of my time in it-it kills my back to sit in chairs/sofas/etc, so sitting in bed is my answer. I stacked 4 pillows behind me against the headboard & 2-3 pillows under my knees, creating a recliner type effect. It really seems to alleviate a bit of pain while sleeping.

 

 

Dad & I put together the Tetris like impossible shelf so my records have a great place to live! After we got a toilet & sink put in mom & dad donated 2 large bookshelves to create a privacy barrier around them, & I found my old James Bond poster-& I'm thinking of hanging it up so if anyone ever broke in they'd see a life size picture of a man...the man guarding my home. I can't think of a better bodyguard. ;)

 

Of course the shelves & walls will be filled with all my art, overseas treasures, etc but we are unpacking & setting up 2 households so it will get done in time. We are getting a WiFi extender as I am barely getting a signal out here & am having Internet & Netflix & Facebook withdrawals-so hopefully that will solve that problem. I can't live without my Netflix!

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My amethyst house

As purple is the awareness color for fibromyalgia-& a longtime fav of mine, dad so lovingly painted 2 walls gothic amethyst, a grey-silver light purple & the other two a dark eggplant color called purple blanket. I love the names of paint colors! He had a toilet & sink put in-I'll use their shower in their house for safety, & we angled my bed against the two white shelves we're using (that mom lovingly donated to the cause) as a privacy barrier in the corner by the bathroom. As I spend so much time sitting/reclining in bed, I wanted it a major part of the plan so I can see the tv, face the love seat for company, etc. I had gotten the black wooden sleigh bed back in graduate school-it has 4 spiral silver knobs on each corner that I adore. Mom & dad gave me the gorgeous batik bedspread (that perfectly fits my queen bed) they got in Indonesia. It's perfect! Chai bunny is loving the huge space compared to the only place she has known-the old bedroom. Though the apt is basically an efficiency it is huge to her! It has a garage door that we are covering with my massive vinyl collection on shelves & an old school pull-down school map. I love that I have built-in shelves by the bed for keeping my cords/iPad/kindle, etc right there in reach. This is my 2nd night & I'm just thrilled! Thanks for all of your great wishes! Also a huge thanks to mom & dad, & my brother for finding the guy to put in my bathroom-he chose a great guy.

notice Chai under the table...

my magic bed

media center & my Indonesian triangle shelf

Chai bunny in bed

Watching the last 'Closer' from bed :)

Record players & shelves

 

Headboard details & gorgeous eggplant paint!

 

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2 days & Zoe

It's 2 days until we drive away from this house. It never felt like home except for my parents being here, but nowhere else did either. The Czech Republic felt more like home than here-I at least met people & made fantastic friends, went out, etc.

 

Zoe cat died Feb. 1st, 2011 & I still haven't been in the backyard to see her. With the emotional state I'm in, how on earth-this solar system will I say goodbye?

 

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