Day 10-laughing out LOUD

So this is a LOL post-which I often forget means not just laughing but laughing out loud. I laugh a lot but I don't laugh out loud, loudly...all that often. When you're in pain all the freaking time even when I laugh I don't out loud all that often-from exhaustion & pain. The last time I really laughed was about a week & a half ago when my darling nephew & brother were over. We were outside & he was playing in the potted plants, & mom was showing him a (planted) flower, & he excitedly plucked out the flower with a little mound of dirt & roots with it-his little one year old face was so pleased, & mom & I lost it. He then started laughing as we were laughing & it just got funnier. He is so precious.

Chai bunny keeps me laughing-she is 99% personality & 1% sleep. No, she even has personality when sleeping. She wakes herself up thumping, then is alarmed & keeps thumping. Last night she moved one of the 2 bunny slippers (Sugar) to her food & later went over to eat-instead of moving Sugar she stood on the back foot part-leaned around & ate reaching her furry head around & sideways to reach the plate. Earlier we had gotten dad to help wash all my bedding & halfway through she jumped up on the bottom sheet & licked away. I finally had to just sit & wait for her to finish. She is THE joy in my life.

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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 me...to 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.

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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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Simply Sunday

As I sit listening to my beloved rain that I love but my evil body hates, I focus on the little good things that have happened in the past few days. Chai bunny remembered how much she loved to get in bed with me for bunny massages, & has been up with me, getting her ears, little face, head & jaw rubbed no less than 15 times at least the past few days. She has a place on her tummy which entails a vet visit tomorrow or Tuesday, but today I'm concentrating on her fuzzy face.

I finished my 4th book this year! It was almost 700 pages & involved me checking it out from our ebook library 4 times, but totally worth it-the first book in the Girl with the Dragon Tattoo series. I just got book 2 from the library. Chai bunny & I shared a strawberry today...her first & she loved it! I got several free ebooks & a few on sale that I can't wait to read-& Amazon held their word-I got my replacement Kindle last week & it is working great! Great tv tonight which is always a good focus off pain point, as well as my books. There are times in my new life when thinking about the good, even if tiny actually does take my focus off pain for a small little while, & that's a massive help.

Day 13 (ahhh Friday!) 10 things I can't live without WEGO #HAWMC

Ok, other than my parents who took me in after I got disabled & housebound, etc, here are some things that keep me GOING. Whether it is acts or material things, here is a how to ten for me...

1. My house rabbit, Chai. She is my little nurse. Jumps on my bed to check on me, jumps up & frolics often, & fills me with joy when I have none.

 

2. My iPod. When waiting at various doctor waiting rooms, blocking out everything & letting dad be my ears is crucial. Sitting in uncomfortable chairs & smelling the various scents of people & their vices-smoke, too much perfume...my brain's pain center goes into overdrive. Closing my eyes & turning up my music with my body folded into myself gets me through.

 

3. My iPad (no, I'm not an Apple spokesperson!) keeps me connected to the outside world. My Flickr pic project, blogging, Facebook, twitter, not to mention losing myself & trying to focus on games, Netflix, entertainment, etc. I count my blessed stars daily for this magic machine that isn't too heavy for my weak body to carry!

 

4. My cheap not smart cell phone camera. To not document this illness would mean the end of me.

 

5. My new baby Kindle. After not being able to hold books open & read, ebooks got me back to reading. I used to read 3-6 books a week, then one for 5 years. Since getting my kindle in mid-February I've read 3 books already!

6. Art. I do all of it through painting apps on my iPad as I can't stand the paint fumes or hold brushes, etc, I can paint again with oils, watercolors, etc. :)

 

7. As a vegetarian, I eat Amy's organic veggie/vegan meals once a day. Also Lean Cuisine veggie meals, & the veggie Kashi meals. They save me-I microwave them & as I can't stand for more than 3-5 mins I can sit & wait. I so miss cooking properly, but I count my blessings that these products are available. (no pic but Chai bunny's a veggie eater too!)

 

8. Little surprises...at times like this one, when looking down, crying, the blown glass light fixture reflected in my iPod at my neuro office, are always a little extra I live for...

 

9. Pills, from pain meds to magnesium to ice packs & heating pads. A necessary evil.

10. My doctors. They understand me-they know me-they honestly care. I don't know what I will do without them when we move. How will I ever find them again? My sadness at the thought.

 

 

Sliced life

As many of my fellow sickities or those who know me know I often talk about the old me & this new me. More precisely, as it's been 5+ years, I think I should call it the now me. Today was a pretty decent day-no horrific stress dreams, pain more bearable for the first time in days, watching Justified & Southland & being amazed by such talent & incredible writing-dad finding my favorite veggie Lean Cuisine tofu strips & veggies in a tomato curry sauce, etc. Still though, I woke with a sense of doom. Seeing pics of friends & family on spring break trips thrilled me but made me long for the days of teaching ESL. One spring break I had 2 out of my 13 adult students in Little Rock who didn't have plans, so I took those 2 guys with me everywhere...out for drinks, the movies, anything-as seeing them so happy for their classmates going off on adventures yet sad to be left behind & alone crushed my heart for them. We had a blast, just doing normal things but getting to know them better-Ronaldo from Brazil, & BK from South Korea. BK opened up so much, & Ronaldo & I loved it as he & I were already good friends but seeing BK coming out of his shell was so liberating.

 

Today out in the garage, grabbing a club soda (or magic water as I lovingly refer to it) I saw some of my overseas things & student's gifts in a box, & it was the epitome of bittersweet. I don't know if I will ever fit the slices of my lives together well, but at least I can say on most days I try.

 

 

Prettying up the pills

 I get so sick of taking medicine, so I did a photo series making the ugly in my world...though I depend upon them for pain, sanity, etc...a bit prettier. 

 

 

 

 

 

Watching the Quadrantids in bed

The awesome app Star Walk allowed me to watch the first meteor shower of 2012, while sick & in bed. The Quadrantids were fantastic & here are my pics of the shower I saw-which is nothing like it was...my camera sucks! ;)

new year, new books, new headphones

I spent most of New Year's Eve watching a Big Bang Theory marathon, reading my new books that were free on Kindle or the 3 books I won from Mira Ink. As my headphones-the earbuds that are noise isolating...necessary for survival in my waiting room hours-broke last week, I used some Christmas money and got some new ones for under ten bucks. I wasn't expecting them to get here until after the new year, but a happy surprise hit when they arrived yesterday. They are fantastic-they really drown out the outside noise and amplify the music, movies, tv, etc. really well. 

I slept through the midnight mark-and woke up around 3:30 AM. I got up, read some, watched Netflix, and tried to forget that my last kiss was over 6 years ago. And it wasn't a good one. Ugh. All in all though with my last glass of champagne and new headphones and new books, it was pretty tops considering. Happy new year to all of you-wishing you laughter, peace, great snapshot moments, surprising little joys, and fun this new year. xxxooo

Ripped. The app, not me ;)

Mom & dad surprised me with champagne for new years! It's always a hard night...& this being my 5th year of housebound, alone celebrations, they gave me the bottle to spread out over 2-3 night. I have a new photo app called 'ripped', where you can rip what sections of a pic to show...it's awesome. Woke up at 3:30 AM as I hadn't taken my pain meds & am know dying, but I can remember & will the bubbly fun I felt while drinking in my love-champagne! 

the old me reared its head

today, even through the pain, somehow i was able to be a bit of the old me. i laughed and smiled and even giggled. i try to remember these moments when the pain comes back and takes that away, but for now, i'll enjoy it 

the advantages of a bent-over pain posture

after my spinal shots at my neuro on tuesday, dad went out to drive the car around as we had parked at the end of the lot and i was not able to walk the length (which isn't long at all for most-but for me after shots-no way no how) back. i had been crying in the waiting room. the pain of the drive over and sitting in the chairs finally got to me-and after hearing Sarah Jarowz's cover of Radiohead's 'The Tourist', i lost it-i always find it interesting to see which song i lose it to if i do-last time it was Adele-Lovesong cover (the Cure). by the time i got back and was on the table waiting for him to come in, my left sciatic nerve and back where it stems from on the left side was so bad i wasn't crying-i was wailing like an animal. When Dr. T walked in he used the entire shot on just that area, instead of halfing it between two places. he then didn't even ask-just sent me straight in to get a pain shot. thank god above!

back to where i started-i was sitting on this ottoman/coffee table soft cushioned cube with a few christmas decorations that still were waiting to be put up-and i was hunched over in my pain. i noticed a gorgeous gold ornament had fallen off the tree in the back, by the corner window, and only from that hunched position could i see it-it was reflecting back the tree lights and was gorgeous. i picked up the cell camera and took a few shots, and for a small while was ok with the pain for the gorgeous ornament i identified with. apart from the tree and my real life, but able to reflect back something, somehow.