Sunday, September 16, 2012

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.


Friday, September 14, 2012

Beautifully Broken

We have loads of flowers in our yard-red, yellow (my late grandmother's favorites), & pink roses, as well as white cabbage roses. Huge bushes of gardenias which smell amazing when the wind blows just the right way, & these purple flowers on an almost tree size bush. Mom discovered that when they wither up they become heavy & break off, & the ground below is littered with the fallen flowers. They are very pretty, but the ones that fall off become a darker shade & are a much more beautiful, very different looking flower. The live ones remind me of the normals-people who don't have the chronic invisible illnesses. They give to the world. They add something. The wind picks them up & their scents fill the air. Many people I've talked to feel guilt over not being members of society who work, do good for their communities & add positive aspects to the world. Every Monday especially I feel such guilt that I'm home in bed when most people are out contributing to society. Having been a teacher I really feel as though I let my former students down. I'm the burdened withered up broken flower who now litters the grass. Though I much prefer the darker, richer shade of purple I've turned into, trying to get through the guilt is so heavy that my petals pull inward inside the center, become very heavy, & prematurely fall to the ground. I know my guilt is unfounded, yet it's still there, on the back burner of my conscience.

The flowers open full-we aren't sure what kind these are.

Dried up fallen ones that mom brought over last night.

The gorgeous colors of the dying, withered blooms.

Wednesday, September 12, 2012

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!

Tuesday, September 11, 2012

Visible Hope

My mom/caregiver is fantastic about fixing little surprises for me, like these flowers in the backyard we share, & dad/caregiver for walking them over to my little purple house! Having these things made & brought with love gives me double the hope during my often dark days. Thanks guys!

Monday, September 10, 2012

Hope through Coping

Today starts the Invisible Illness week! The theme is Visible Hope-finding hope in the midst of pain. For me I've found that having coping mechanisms is crucial in getting through a pain-filled night, or during the wonderful but stressful holidays, or the days anxiety & depression seem impossible to escape. One major thing that brought me out of the dark, lonely space that is housebound living caused by fibromyalgia & friends is photography. After a life of living, working, & traveling overseas & documenting everything in pictures...going from being out in the big wide world to inside a house 24/7 was so difficult-but a year after becoming housebound I started taking pictures with a cheap, non-smartphone. It was so liberating to see the face of pain staring back at see this invisible pain visible. Now I take pics of everything in my small world & I'm always stunned to find how many things I find just in the small 4 walls around me. An example? Chai bunny in bed with me after she patrolled the bed, making sure I was ok.

Having been an art student I hadn't been able to paint, draw, or much of anything artistic until I found the many art apps. I can now draw, paint, sculpt, etc. on my iPad. There are great apps covering every medium-watercolors, oils, etc. in every price range-I got most of mine on sale for 99 cents or less. After getting an iPad a few years ago from family opened up the world to me. I've discovered my love of art again through the mentioned apps as well as art history-I can tour museums & see artwork from my favorite artist who had severe chronic pain most of her life-Frida Kahlo. Her paintings showing her pain in vivid detail are so inspiring to me. This painting is a little drawing I did earlier...with fibro awareness color purples of course!

I miss star gazing & seeing my moon most nights-I can't always make it to the door to look up into space, so I use the amazing Star Walk app. I can hold the tablet over my head & see what is all around me in the real time feature-& watching meteor showers without being outside is almost as good. Finding ways to see/do things I love is crucial to my survival-if not I think I would wither up & disappear. Some nights I'm not able to pick up the iPad above my head yet I can still explore the sky using these apps.

Many people are playing games on Facebook-I haven't gotten into that but I do play words with friends, or my favorite zen-like game called Kometen-comet in Swedish I believe. This little comet is in my care, & I orbit him around planets to eat space junk, teach him how to make loops, & send him zooming around through the stars. That game can calm me down & have me & my comet playing forever-I get lost in the game & it really focuses my mind off the pain & panic attacks.

I have rediscovered reading-it became harder & harder to hold books open...that seems so ridiculous but I've heard many others having the same problem. I got the free Amazon kindle app on my laptop, & they have tons of free books you can keep, or now most libraries have ebooks you can borrow, & you can check them out without having to leave home. That opened up a lost love-I used to read 2-3 books a week at times, & then went 4 years without reading anything. If you have a cheap computer you can get all that for free-I know most invisible illness patients have money issues as medications, doctor visits, procedures, etc. cost so much & so many things aren't covered by insurance. Even me on disability-you can't imagine how many things still aren't covered. Finding things like this are fantastic!

Of course Netflix tv & movies are a mainstay-when the morphine isn't touching the pain getting lost in a film doesn't take pain away but can get me so immersed in the story that I somewhat forget the pain for a short while. Also listening to Internet radio & free podcasts of a million different topics-including my love of space-are so easily found now. Technology has opened up the world for us all-& for invisible illnesses it gives us friends through Facebook, twitter, etc. who understand & identify, & is a valuable resource for so many things.

Finding things you love & ways to incorporate them into your life is crucial to have a more meaningful life-having outlets to help you grieve, laugh, forget, learn, & get lost in was something that honestly saved my life & my sanity. Finding hope in a dark place is possible-not easy, but possible.

Sunday, September 9, 2012

Tuesday, September 4, 2012

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.


Saturday, September 1, 2012

Fevered dreams & little surprises

After a week of fever, swollen glands everywhere-one even hardening into a small marble under my arm-I woke up this morning after having feverish stress dreams panicked & stuck. After starts like that it's nice to find some little surprises & discoveries. My love of detective mysteries was delighted to find that netflix has 'Cracker' & 'Durham County' on streaming. The forst stars the fantastic Robbie Coltrain set in the UK, the second a strange, twisted, nightmarishly fantastic Canadian series that has moments of last year's 'American Horror Story' from FX running through it.

I stubbornly want to decorate my little house like I used to be able to, & a few days ago got out & shelved about 50 of my vinyl record collection, of course overdoing it in the process. A guy I used to work with gave me all of his record collection-& it's a really, really good one. I got it about 7-8 years ago but never really was able to see all of the records-& putting them up found loads of the Rolling Stones, the Beatles (with posters from them still perfect in the sleeve), the Who, Led Zepplin, & Neil Young-& the wonderful Johnny Cash. My friend & I used to play the side with I Walk the Line over & over again. Swoon.

I found a giant hedgehog, or a Czech 'Jezek' from a class of a dear Czech business I taught & loved. Chai bunny is in love & took to him, licking his furry nose immediately.

Dad brought in my grandmother's old mirror, & even though it isn't up & might not be for months-it's ok. Just having it around thrills me.

Mom found my bedspread/blanket I used in Indonesia, with all it's holes, faded stripes, & soft love clean & ready to have as an extra blanket on my bed.

Last but certainly not least, dad was mowing & found & brought this adorable turtle for me to see. It stuck his head out & started walking, not at all shy. Of course I'm now leaving little bits of veggies & leftover Chai bunny food outside for it, hoping he will become friendly & we can have a proper turtle/tortoise & the hare/nut head bunny fable happen in the apartment! Chai bunny had made a path around the sofa, under the bed & beside the boxes where she zooms around-last night I heard her skid off the carpet & onto the concrete floor as the sound of little paws & nails went across she's practicing! All we need now is Mr. Turtle to return! Finally, & with fever I had to go numerous times & stand in my front door & let the hurricane rain soak my face. Having my own front door to open in private behind the house & fence of my family is great. I can stand in just a gown & no one can see my moon face happily letting rain run down my neck & back, for Chai bunny to investigate after.