Stillness

Some days the impact of what I CAN'T do overwhelms me. I've been living this way for years now, but certain days I wake up from dreams in which I'm not sick, then realize I still am. It's quite a cruelty joke-in my dreams I run, dance, love, date, am with friends...then the stillness hits me.

 

Posted with Blogsy

My independence days

When you become a professional sick person, you give up loads of things you wouldn't have ever thought an issue. Holding open a book. Needing fresh sheets but not wanting to bother your caregivers. Not being able to cook. Not being able to pick up your nephew.

I recently watched the movie Drive through Netflix streaming. It woke something up inside that I have missed so much. From the moment I could drive the car & endless roads out by our local lake became my refuge. I'd go & sit in my special scenic spots with my now forbidden diet cokes & listen to music, write, take pics, etc. Driving was freedom. I spent hours upon hours driving & finding meanings to life ;)

Watching that movie that excitement of the journey hit me hard. The title song Nightcall would be a perfect example of a song I'd listen to nonstop if I could. The dark, French electro-pop with shadows would last me miles around the beautiful huge lake I spent so much time around. I miss that independence-that lake-that magical marriage of the perfect music & the perfect drive.

Posted with Blogsy

Dream stress pic

Just a pic of an image of a dream I had. Not a ghost but a look at a mistake maybe? Titled The Brown Veiled Wisp

 

Posted with Blogsy

Art under a microscope

After taking some pictures that didn't come out as expected, I saw something in them I wanted to explore. After putting them through a litany of treatments, these two showed something about my anxiety I couldn't/can't yet explain.

girl with everything she owns on her back lost on the dark side of the moon.

 

A bat with a face (look close!) captured in the orbit of a planet. If he escapes he burns up in the surface or flies into space, weightless & lost. Kind of reflects my stress dreams, minus the cool space travel.

Hands keep the fear away

I've always loved horror films, books, etc. A great thriller or race for scary survival & I'm there...but from a young age through my teen years, I would watch with my hands over my face, peeking out between my fingers, knowing if I got too scared I could close that gap & be protected. I still love horror-not just slashers but ghost stories or Jaws or the enemy might be a microbe or robot. I love the bravery. The fight. The willingness of some to sacrifice for others.

 

Now, having had severe stress dreams for the past 5 years, funnily enough they aren't your typical horror, but scare me so much more. I'm abandoned. I lose my pets or can't find food for them as they die in front of me. I'm back trying to work while the boss is ganging up on me because I can't pull my weight. I wake up exhausted, & honestly I hate to go to sleep. When you dream such vivid things you make yourself stay awake sometimes, terrified to go back to bed. This stems from lack of control-the stress felt when you can't choose anything anymore. I so often wish I could just sleep with my fingers across my brain, & keep the terror from entering my soul.

 

Bizarro day

My 'days' are strange-normally I sleep a lot during the day as my pain gets worse at night...& there's better tv on. ;) I was downstairs with my parents cat Macy-she's been really sick & so while they are gone I slept downstairs. It was great as I could prop my iPad up on the side table & was able to recline sideways so much easier than upstairs.

I started getting so tired & ended up sleeping half the night. Macy woke me up & around 5AM I went & checked the mail, which ridiculously enough exhausts me. After just a bit I fell back asleep. Today was the day my morphine was due, & with dad gone, he had our lovely friend Brenda pick the Rx up & bring to me-she is a huge reason in the cons part of moving. Even though I don't see her much we email & text & keep in touch through the parents. I knew she would be bringing the meds inside & I was trying to stay awake to see & thank her. Of course I was dead asleep, having the worst stress dreams. This is my painting of it-using a great new 50 cent stylus pen. I love Amazon!

So a few hours later Macy wakes me again as she too was dreaming-& she wakes herself up crying in the saddest way ever. She sounds like a haunted duck trying to bring her head up from under water. Maybe we were having the same dream? Completely out of it I see a text from Brenda, & I go to the kitchen & see my meds with the greatest thing ever! Donuts...Homer Simpson would be proud. One was a cream filled chocolate dipped one with bright blue icing dots, the next a four round tiny ones combined in a clover-like design that were raspberry filled. So good. & the best & last-a heart shaped donut with a blue icing smiley face! She told me later she thought that having sugar to make the medicine go down inspired her. She is by far the best 'babysitter' ever! Just without question. I'm now full of sugar & morphine, have almost forgotten about the awful stress dreams & painting. I try so hard to see & enjoy to the fullest the good surprises that pop up along my way. Thanks Brenda. :)

 

Mind on fire

This is the state of my Chaosed Mind. The scary, the part that misfires & causes me to seize up & fall, the part that causes me to lose so much strength in my hands (why I have been tested for MS twice in 4 years), the memories, the fears, the stress dreams, the fog, the over active pain center, the hopes, the wants, the needs, the creative, the stings, the grasps, the missed, the smiles, the music, the poetry

The fear

Many of us live with fears. I grew up with fear twisting around my every muscle, thought, & mind as my brother going through cancer treatments, & later dying left me thinking fear was normal. I used to throw up nightly as my fears took over & my stomach felt it had to release this fear. I got better as I got older, but after getting sick, the thought of getting fired (they ended up letting me resign) or losing friends (count is at 3 significant friends) & losing myself in these illnesses caught right back up with me. I have horrific stress dreams, where I'm usually trying to find something that I never can find/finding my pets starving to death/being back at unusually cruel workplaces/& my family abandoning me. I wake up with this on my mind 29 out of 31 days on average a month. My fears now are moving, leaving my doctors, having to tell my doctors, not finding a good replacement (though I promised that there are no takers & we are supposed to move in 3-4 months), etc.

 

Masks

We all wear masks at times. Mine lately seem to be mask of the unknown future. Mask of a move. Mask of the old me. Mask of saying nothing & keeping the peace. Mask of hiding how scared I am of leaving my doctors. Mask of feeling forgotten.

 

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.

 

 

Worth at least a few words

After yesterday's adventures in dentistry, these pics show better than I can explain how I feel on the outside, inside, my physical self, emotional self, mind, soul, heart, & brain.

 

 

Pretty fluff

  In many flower arrangements, the filler is often some generic, fluffy stuff. It tends to be ignored & dismissed & is often bland to make the beauty of the flowers stand out...like a bride next to ugly bridesmaid dresses. I woke up today with Chai bunny thumping me awake & saving me from my nightmare, got up & wondered if it was my moaning in pain that alarmed her instead. I try & take these awful painful extra morphine days as the fluff, so that the less painful days really stand out.

 

A pic speaks my 1,000 words

 

Hearts follow

 I started seeing hearts (& I've never been an I love hearts kind of girl) right before I started getting sick, really sick, about 6-7 years ago. I still catch glimpses, though not as much now. I would see them walking across campus at UALR in leaves, etc. today, after waking up in the middle of the night to the worse panic attack that still hasn't subsided hours later, this showed up, as I reached in the toilet paper bag for a new role, & pulled out this random roll. & no, this wasn't taken during any 'act'. ;)

 

 

 

My eyes realizing

Tonight I realized...I can't go on living here. I can't live without a dr in Arkansas. I can't keep my parents saddled with me. I can't hold them back. They've spent so much time house hunting, yet no time dr hunting as no one there will take my case. I can't keep going to sleep having nightmares only to wake up exhausted, depressed & worse off then when I went to bed. 

The yes when you realize there is no end. To pain, to a life, to a good living situation, to peace, to going on any longer. 

Stress dreams

I have stress dreams. Not nightmares-someone trying to kill me would be a pleasure given the crap I dream about. This is a representation of why I hate going to sleep.