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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Time's humor

I was taking a pic recently & ended up capturing the wrong edge of the intended picture. Doesn't matter what or why, but I found the accident photo compelling. My eye in the pic is looking up, looking to see if I'm holding the cell camera right...which I wasn't, but my eye looks normal. Not so sad. Not filled with tears & dread-I was so focused I was too busy to look like my soul felt. I was playing with my hair. Let me explain-I found a subject a day chart on the net & thought I'd try it-& that day's was descent...however you wanted to cover or interpret it. My hair has changed so much since I got sick & I was thinking about the descent of my hair from well to sick, though my hair itself is really healthy. I don't style it, blow dry it, put any product in it-so it is totally boring & natural. Anyway, thinking about the last time I had it cut professionally-I can't remember.myears. A decade maybe. In a few hours I'll leap out for the first time in years to call a pain clinic. Evidently we are moving this summer, & I need to call them to see if they can take me, what I need to do to start the ball rolling-all the stuff that terrifies the one's who feel a good doctor is far more important than most anything else in life. I'm so scared-what if they aren't accepting new patients, or what if they are not a good fit? I've even had dreams of calling them with disastrous results. For me the unknown used to be so exciting. Move to a new country in 6 weeks without knowing anyone or speaking their language? Can I come now? Start grad school in my 30's with no money? Sign me up! Snorkel the great Barrier Reef even though I'm scared of fish & sharks? I only live once! I was pretty brave. Really fearless. Now making a phone call that signals me leaving my beloved doctors is much scarier than getting on a plane to commit to a country I can't pronounce most of their words. & away I go.

 

Sick opposites attract

So many professional sick people I talk to feel they need to be one thing & yet of course often feel another. We feel strong for just fighting & making it through another day, but so weak for not being able to somehow just smile & overcome. We try to love ourselves but hate our bodies & our diseases/illnesses so much. Many others tell us we seem well & we don't look sick. I love to be happy & laugh, but find myself crying over the laughs & relieving the pain. I want to be positive & be grateful for the good things. I really do, but some nights it is all I can do to get through until morning.

 

Roles we play

As human beings, whether we are straight forward or a bit more mysterious & in the shadows, we all play certain roles. Child, sibling, co-worker, friend, ex, virtual connection, parent, aunt, cousin, etc. I play many of these roles, but mine have decreased greatly in past years. I lost being a teacher, co-worker, graduate student, apartment renter, car owner, driver, bar & restaurant patron, shopper, independent person, etc. I gained as well-facebooker, twitter-er, patient, blogger, documentarian, the caregiver's person, bed sitter, disabled person, etc. Often I feel just 2-3 roles. The real me, the brave face hiding me, & the trying so hard but the facade breaks down me. It's a strange world in the brains of the chronically sick.

 

It's all me but I'm split into 3

 

Often I just want to hide.

 

Or keep my sliced life at a distance

 

I try & disguise the pain behind a mask.

 

& end up giving bits & pieces of myself to different people, but did they get to see the whole me?

Day 18 WE ARE DIREWOLVES...#HAWMC WEGO

Our starting point for today is to open a book (or in my case-my kindle, though I did open the book I was reading & turn the pages) & the first sentence you see to use that & free write for 15-20 minutes. My book is the first Game of Thrones books...full of epic battles, love, loss, dragons, knights, power, the throne, kingdoms, flaws, strengths, strong women, smart men, etc. All the things you could possibly want from that genre, with a bit more. Oh, & direwolves, violence, & wildlings. ;)

'She's not a dog, she's a direwolf.' I immediately go to the 'but you don't look (or sound as I was told recently) sick' phrase all of us invisible illness people have heard at some point. We may look like a normal wolf, but we aren't...we are direwolves. We are different. Stronger. Smarter. More intuitive. I've met so many of us who seem to have or have gained these qualities from having these illnesses. We may look like a wolf, but inside, we are special. We are stronger. We are direwolves. There are many minuses in being 'special'. I don't have to waste your time in listing all of them. I've learned though that we are so much stronger, tougher, wiser, & braver in being abnormal. We have the fire inside of us. We have the strength to be vulnerable. We are on the battlefield daily, & we have many, many scars to prove it. As one of my twitter friends says, we are chronically awesome.

Pic titled The fire inside

This morning...#HAWMC WEGO day 12

Today we are to start with the given sentence & just free write. 'This morning I looked in the mirror' & immediately looked away. It's funny. I've been documenting my illnesses for almost 5 years now, & most of the pics are self portraits. I don't mind looking at them...even though they are me they aren't. They're the subject of documenting fibromyalgia & how it looks, acts, is. Taking pics & opening myself up to something so vulnerable is a project-a coping mechanism, just like blogging & a pic a day is-it might seem vain but it's a far cry from that. I used to photograph my overseas living, travels, & when I became housebound I had to turn the camera on myself to face what I was becoming. It was a way to learn to live with this new, foreign me in a distant way. Taking it as a project kept it from becoming too personal at first. I was looking at a disease. I hate seeing myself. I hate looking into a mirror. There are days I purposely don't look in a mirror for days, yet I see myself in photo manipulating pics daily. I'm sure it will continue to stay that way, though I know it's not totally healthy. Just trying to make it minute to hour to day to week to month is hard enough.

 

 

Snowed Fibro White & the 7 Phased Dwarves

The ever present Sleepy

 

The fear

 

The Lost

The Numbed

 

The Angry

 

The Pained

The Confused

 

The Depressed

Prettying up the mundane

Lately a few things have happened-been said-etc in which the subject was played up or down to disguise the honest truth. Not lies, just made-up or tweaked in order to appear a bit better. If you strip down me to my absolute basics, am I too much to take on? Have the medicines that make me gain weight change minds? Do the humiliating truths of the basic life & personal care & lack of force someone's decision one way or another? Is the real me, not cropped & photoshopped so different that offers & futures come down to that? The real me? I don't know if I want to know the answer. Just like this simple picture of my AM/PM medicine strips is made to look prettier, cooler looking...not as boring & honest as the actual 'weekly filling of the pill strips' that I hate doing just too much for someone to admit into their lives? I honestly don't know.

 

Sides of sides

I just watched Bridesmaids, & had no idea it was as serious as it was funny. I often feel like the main character-left behind while everyone else is married with 7 kids & perfect jobs, etc. Of course that isn't the case-& everyone sees & takes information & life differently. We all interpret the same thing so vastly unique, & as lonely & out on a limb as I feel I know there are those who feel the same though to me they seem to have everything together. This is a painting I did, & put through different techniques just a few tweaks off you get interpretations that are miles apart. I have no answers or solutions to which one is the way my life should o, & I'm not going to pretend that it is easy in any way, shape, or form. I do know that I like each picture for their own merits, pros & cons.