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.

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Who I was & what I wore

Funny how our wardrobes somewhat dictate or openly invite the world into our personalities-we show them very intimate facts about us simply by what we wear. Who I used to be vs now are as polar as opposites can be. People like me wear elastic waist to avoid buttons. Panties 2-3 sizes to big so as little material as possible touches us-for me my lower spine. Clothing becomes something to tolerate, not express. For a fashion lover like I am it absolutely sucks. I had to go through my wardrobe today to keep, donate, or throw away. Several things had literally worn out-evidently I worked & played really hard ;). Seeing my grad school/Little Rock years gutted me. Amazing how an item of clothing can hold more memories than a camera. Some items I had to keep, way to old & small, but to put in the back of a drawer to pull out when I need to remember. Here is who I used to be, that few of you were able to meet.

 

My absolute ultimate me item. A very thin long sleeved patchwork shirt-ripped, sewn & repaired beyond repair, & scented with Brazil nights on the beach, teaching days at UALR, & my old tangerine perfume. I so gently put one hand & arm through a sleeve, just to feel the old me again.

My orange long patchwork skirt. Usually worn with combat boots, a denim shirt & confidence. So great how a piece of clothing gives you confidence that no self help book ever could. It too was worn all over Little Rock, Brazil, etc. I normally wore it with the next item.

 

The simple denim shirt/jacket combo. The pockets were over the chest, & great to stick money, my ID, phone, & lip balm in...look closely at the bottom right of the pocket & you'll see the cylinder shape of a Burt's Bees lip balm. I wore this as a shirt or jacket at least 3-5 times a week.

 

My wardrobe had loads of shirts & jeans paired with blazers & tennis shoes. The blazer dressed it up for teaching, & the shoes for walking all around that seemingly huge campus. I loved mixing stripes, so I often wore pinstriped blazers with totally random striped tees.

 

My favorite statement...'your future ex-girlfriend'. The dating scene post divorce, being overseas for a decade, etc was a new world. I was shocked people still stood you up, broke up through emails, & other fun dating no-nos. I quickly developed a cynical outlook but deep down was the 12 year old asking 'why didn't he like me?'. This shirt at least made me feel that to those possible idiots I wasn't as sweet as I seemed in that aspect.

I don't know who I am now. My wardrobe reflects so little of my true nature, & that is one of the unspoken losses invisible illness people often face...so the next time you see someone like me, remember them for who they used to be able to show.

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The guilt of being sick

As dad is in my room, vacuuming & preparing for the carpet guys to come measure for carpet to replace what Chai bunny & I ruined, my heart breaks. I feel I shouldn't be allowed even to have pets. We say some people shouldn't have the right to have kids in their care & now I wonder the same about me after Chai bunny passes.

After seeing my brother, his lovely wife, & adorable nephews yesterday, I woke up today so sore my arms feel like they have been run through pasta maker arms that flatten over & over-& I wasn't even able to sit while they ate lunch, pick up my one year nephew & barely could gently hug my older nephew. I realized as we will soon live a few miles away from then they are probably realizing that I will become their burden-one they don't deserve, need, or should have to handle.

 

 

TMI Tuesdays-WEGO Health-behind the curtain

Many of you know the basics of fibromyalgia. The pain, merry-go-round doctors, trial & error medications, etc. all of that is a huge part, but even for all my openness & knowledge is power, there are a few things that only my parents know. There are things so humbling & humiliating that I keep most of them to myself. One of those things is the lack of personal hygiene. Often times taking a shower, even with the little plastic stool I use as a safety precaution & the fact that I can't stand for more than about 3 minutes at a time-even sitting down showering is exhausting. Many days can & do go by when I can't shower or bathe, & it's a crushing weight to one's self-esteem. To not be able to jump in the shower is a luxury I used to take granted-or a soothing bath. Things like this that go unsaid make me want to curl up & hide.

 

Day 26-5 things-#HAWMC/WEGO health

Day 27

 

5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going

 

Difficult parts:

1-humility that comes with things like personal hygiene taking a backseat at times

2-pain that nothing can quiet

3-feeling invisible

4-guilt that I've ruined my parents lives & plans

5-not seeing a future I can handle or a future I might could have had if I hadn't gotten sick

 

Small victories:

1-getting my pics & story published in a magazine

2-feedback from people who identify with me-or one friend who said she wanted to be a good friend to her newly diagnosed friend & reads my blog for advice

3-the sense that I'm fighting with every pic, blog entry, etc.

4-seeing who my real friends are...strangers, old friends reconnecting, etc

5-taking my loss of photography that I loved overseas & repackaging my subject as I turned the camera into myself, soul, & opened up the raw nature of my life. I found immense freedom in that!

 

 

Submerged

For a chronically sick person, we all know that whether it's physical or emotional, etc there is the overall picture. Pretty parts, confusing parts, abstract bits, things you somewhat understand & some that are baffling, but if you look at the close up, there is so much submerged below the surface. Much darker, supportive, hidden parts. My hidden things are so humiliating. So embarrassing. They make me feel like I'm 7 yet 87 at the same time, yet I'm no Benjamin Button. As open as I am there are a few things I keep deep, deep down for fear of the reveal of some things that happen often & feel so crushing.