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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The Windy Shadows

As I watched the 2nd to last 'House' last night, I realized we actually have more in common than just chronic pain. & dependence on meds. & grouchy attitudes at certain times. ;) I love mysteries & puzzles as much as his character, but of course in different ways. I've always loved mysteries-I think my love for the Mystery Machine & the gang from Scooby Doo started it, & I have never looked back. At least 85% of my books I own or borrow from our incredible library (which lends loads of ebooks!) are mysteries. My dad & I share that, & our many tv shows we both love involve mystery, & we always put in our bets of who we think did it early in the episodes. My art, photography, & poetry involves a huge amount of abstract mystery. I enjoy the word play & working with word combos that involve a ton of deducing skills. As I've gotten to be a human puzzle & try to put together the unique pieces of my illnesses, I've gleaned skills. Anything I read, watch, even hear I use as tips or tricks in coping. Some are as simple as focusing on an intense film & others are borrowing survival skills from survivors & detectives. As I watched the really brilliant PBS 'Sherlock' tv series last night I felt it so much-I had a fever & was all covered up, watching the pair of them on the moors looking for a giant hound & having all the lights off I felt like I had the perfect mystery combo. Sick girl, puzzling story, windy shadows, cat knocking over a glass & scaring me to death (as the horror movie cliche goes) as I huddled under blankets watching Baskerville hounds. I recently got all the Sherlock stories for 99 cents, & am also reading at least 4-6 other mystery thrillers as well, & gaining every bit of wit & wisdom to take away with me on this insane journey.

 

Day 25-memory from another view-#HAWMC/WEGO health

The girl sits on the bed-naked-as any clothing that touches her skin feels like an attack of needles. She has an ice pack propped up on a pillow placed carefully so it covers two inflamed areas on her lower back of the spinal shots from earlier that day. Her left sciatic nerve starting in her back & radiating down the back of her leg & the top & bottom of her foot feels as though an electric prod combined with a vice is irritating the nerve constantly. It never lets up. Her left hip is so tender to the touch she hasn't slept on it-hasn't even leaned over on it-for the past 7 years. She tries to watch tv to take her focus off of the pain yet can't focus. She switches to Netflix on her iPad, trying in vain to find anything that can help focus her damaged brain's pain center elsewhere. After starting & stopping at least 3 different movies she finally settles on one. Tears start falling onto the screen. Beside her the bed softly indents as her house rabbit, Chai, as carefully as she can jumps up on the bed. Chai starts licking the sheets which in bunny means 'deep affection'. She puts her front paws up on the girl's left shoulder & touches noses with her. She barely licks her arm, but as it feels like acid she stops & hops around in front & licks the bedspread, pillows, & any clothing on the bed. As she examines the girl one last time she gives final licks & slowly jumps off the bed, flops down next to one of her stuffed rabbit friends as the girl smiles.

 

Chai bunny saves my night

I'm home alone for a few days, & after getting a call that left me in tears, I went to get my beloved bunny. I have been staying downstairs as Macy, the parents' cat, gets very upset & cries nonstop when they're gone. So Chai bunny making her excited going downstairs breathing noises was so cute-so nervous as she hasn't been back on my parents bed in forever. She was so shy at first, all huddled into me, cooing & softly making the sweetest, most tender crying-like noises as we cuddled. She got brave of course & hopped around the bed...in my room she's up & down on the bed constantly, but she was in newish territory. I got a few hilarious pics, one which got retweeted as cutest pic of the day on twitter (us watching Alcatraz together) & an under the chin shot where she looks like a shark-dolphin. She cheered me up, & I can't wait to bring her down later today. As anyone with a chronic illness knows, having the all consuming love of a pet is indeed the best medicine.

 

 

 

 

 

Happy birthday Kris-you deserved to be my 41

I watched Modern Family a few nights ago-hilarious as always. One of the characters had a leap year birthday, & so in his lifetime he had 9 actual, Feb. 29th birthdays, & this was to be his 10th, although he was turning 40. As it ended up after disaster party plannings & fall throughs of people, places, & things, his partner realized he just wanted to be 10 for that night, not 40. Hilarious, poignant, & so sweet. They rode roller coasters until they got sick & loved every single vomit filled minute of it.

I've never been a big birthday person about myself, & for the first time ever I will admit why. I've been sick all my life. Not like now-professional status, but amateur sick. My brother died of cancer right before his 13th birthday, & a month & a half after my 9th. He was 11 days short of turning 13, & died an agonizing death. Cancer didn't kill him-he drowned from the vomit in his lungs from the cancer 'complications'. Complications my ass. That's how it was phrased but shit, I think a stronger word than complications is deserved.

I always have felt guilty that I lived & he died. Still do, & I doubt that will change. Perfect kid, great at sports, so smart he'd be off in Memphis having surgery or chemo, come back to classes & ace tests over material he knew nothing about. Sweet, loving, loved the kids who no one else liked, treated everyone with love & respect. That kind of kid. I still question God's judgement on taking him but leaving me, a amateur in training sick girl. That's why I've never relished my birthdays. Mom & dad-no one knows this, but as my life is so open now, thought I'd get it out.

 

 

Right before I took on my professional status ;)

 

Fighting for peanuts

Being a vegetarian, I often will just know that I'm low on protein, so if I don't want to eat yet I'll just grab a handful of peanuts...dad's favorite snack. Today after dad came home I had my very own jar o'nuts with a big, red 'M' on the cap.


Mom has a way of marking food we share, which, while driving me nuts later makes me happy when I can bargain with dad if he has something I want : )

Since Zoe died, the parents cat Macy now loves to get right next to me when I'm downstairs in their room, watching TV. Never a substitute for Zoe of course, but having a cat curl up next to me & purr does give me a bittersweet smile. Her Macy is just a few hours ago, as close to my leg as she could get.



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Location:Downstairs

No bows for me

Many people like the neat, solved in 1 1/2 hours Hollywood endings.



I like the messy-the complicated-the real life in my tv & movie watching. Seeing how someone survives when a problem isn't solved but will have to be worked through-that's what inspires me. Watching the creative process the subject uses is what I love to see-& figuring out ways to get through the puzzle of whatever they are facing-illness, criminal, power hungry family, vampires or the justice system.



Take away the pretty bows & give me the knot any day. I want tips on how to survive!

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Location:In front of the TV/iPad