My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Friday, March 20, 2015


As most of you know, I'm stuck home most of the time from chronic pain.  We don't have a car at the moment, but will be buying one from a friend very soon.  I'm very excited about that.  My 1994 Chevy Lumina Euro has seen it's final days and will be headed for the scrap yard soon.  I wrote a poem about how I feel stuck at home; it's my first poem in years.  I've shared poems twice before, you can read them here and here.  Unfortunately, I find pain, fear, depression and desperation seem to help the writing process.  If you look at most of the great writers, a great many of them suffered depression or bipolar disorder.  Many also self-medicated with addictive substances, though fortunately I don't have that problem or issue.  Once we get the car I will be getting out of the house more, for a few reasons.  First, I'm losing my mind in here, and when you pit depression and anxiety versus pain, I prefer the pain any day.  In my experience I can handle any level of pain better than I can handle bipolar depression or bipolar mania.  I'd rather be stuck in bed crying and unable to move from pain, than exist in a numbed and hopeless state, or a fast, irrational, unpredictable manic state.  Second, I have a very poor quality of life.  I will be in pain if I'm here, or if I'm not, so why not have a higher quality of life and be in pain?  Third, I would like to be a mother someday, and it isn't an option to be stuck at home all the time if I'm a mom.  Fourth, I miss being around people, even if it's just the grocery store.  I'm in an introvert, in that people can wear me out, but I still love being around people and miss hearing other people talk and laugh.  Some people have the mistaken assumption that I have agoraphobia, which is not true.  I love getting out of my prison, it's the pain that has kept me here.  It doesn't help that my car (through no fault of my own) was always in a disgustingly messy shape, has no air conditioning, and rides rough.

I wrote this poem about how much I hate my life this way.  Please don't leave me nasty comments about the quality of my poem, I'm sharing it on my personal blog, not sending it into a literary journal.

TRIGGER WARNING:  Contains violent imagery


these four walls
are my prison
only my mind escapes
yet it leads me down a dark path
of shadow demons with
their eyes gouged out,
their faces melted with acid,
smelling like a wet dog

they close in on me, my body betrays me,
my feet are on fire,
pain shooting up and down my legs

My knees shake
I can't trust my legs
engulfed in the sharp pains of a long ice pick
hammered through my heels,
stretching into my hips

my shoulders ache
to hold up my breasts
my mind looks for escape
only to get tangled
in rusted barbwire

at one time I was beautiful
and full of life,
jogging, laughing, swimming, fishing
but that was a long time ago
before my body morphed
into the mess it is today

now I'm stuck
within these walls,
they smother me
I used to be beautiful
stood tall with confidence
I wasn't always
the person you see now

stuck in these four walls
has been the loneliest
experience of my life
alone but not alone

I'm alone
connections severed
from the life I used to live
back when my life had purpose
back before I was imprisoned
in these four walls

Monday, 09 March 2015

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