As humans we easily become creatures of habit, comfort and denial. How do you teach an old dog new tricks? With people, I have found that one catalyst can be pain. Pain settling into your body can force change out of necessity. Discomfort will move […]
Interstitial Cystitis -an autoimmune xxperience, I flare, pelvic floor tension, low back and hip pain – all engulf my body much more frequently than I’d like. Some days I am able to manage symptoms, but at other times they are terribly unbearable. Sensations to the […]
I hear my alarm and close my eyes tightly.
A stream of intense emotions hits me at once ranging from complete self loathing, disgust with my body, fear of my continued suffering experience - to guilt, despair, and shame about how useless I believe myself to be. Some mornings I wake up with blinding rage. This morning it’s a desperate loneliness. I’m isolated in my state, unable to participate in normal functioning society therefore I’m a failure.
Ignoring the screaming urgency willing me to move I hit snooze for ten more minutes. Just delaying the inevitable. I don’t sleep in that time but I wish I was. If I’m sleeping I’m someplace else and unaware of the suffering I’ll endure during waking hours. I fucking hate when Frank’s fired up.
Every morning I’ve allotted myself 2 hours to complete a lengthy routine of self care to manage the level at which my body will deteriorate throughout the day due to stress and general use. Pelvic floor exercises, painful stretches, body rolling and a hearty deep breathing routine. If I’m lucky that will be enough to stave off some of the oncoming suffering. Today I’ll be late to work giving myself an extra thirty minutes of attention. I’m grateful my boss doesn’t question my frequent delinquency. It’s embarrassing enough my coworkers know vaguely about Frank. I’m a freak, a zoo animal with allergies or some version of sick.
I manage my diet meticulously. I drink my lemon water. Today I avoid the recommended supplements. I question their effectiveness. I only eat the protein rich breakfast of eggs the nutritionist recommended. I frown at the lack of apparent snacks as I’ve not meal prepped due to increased difficulty managing two jobs and trying to maintain what’s left of my social life. It’s not like I need more food, more reason to question what’s irritating my bladder and the surrounding areas. If I don’t eat. Food can’t affect me.
I drag my feet leaving the house. Motivation and excitement evade me. Energy is a distant dream. I yawn to stifle a scream and leave for my desk job. I feel like I’m making motions but not really present. I’m trapped within myself feeling every second of discomfort without the ability to change it yet still moving through my days. I wear loose fitting clothing, cotton underwear and chew on my lip to stifle the burning tears attempting to escape my eyes. This can’t be my life.
The previous day was horrendous. I felt my pelvic floor spasm, painful and burning hot - All. Day. Long. A day that ended in tears and an embarrassing encounter discussing my disease with my boss. He was gracious, kind and listened but I’m ashamed I wasn’t strong enough to wait until later to cry or not cry at all. No amount of stretching, breathing or cursing would change the onset of today’s flare caused by the uncontrollable spasms. Please, body please stop.
I feel trapped by my inability to take adequate time I need to recover. Going to work is sure to increase stress and reduce my ability to cope with the pain. Not going to work means no money to pay for the supplements, the medical professionals, the physical therapy and all the other financial shit that tugs at my wallet. These catch 22 circumstances that have me pulling my hair out and breaking down in a sobbing puddle in the middle of my bedroom floor more often than I’d like to admit. I’d rather be in a puddle crying right now.
At my desk, beginning the longest 10 hours of my life, I attempt to ignore the screams coming from my loins. Maybe working will ease the obsessive thoughts in my head. The ones retracing my steps trying to figure out how we got here and what triggered Frank’s fire filled rage - the downward spiral that is my body rejecting itself with swelling, burning, urgency filled hell - this time. I’m exhausted, I need an out.
I sit at my desk, then try standing, then sit again. I instantly start researching my mortifying and excruciating symptoms on my phone. I work a few emails. My lip started bleeding. I switch to gnawing the other side. There’s a hole where my canine hooks into my bottom lip from repetitive trauma. I’m on the verge of panic but choke down the bitter taste of my own dismay. I read another article, respond to another email. I’ve been on this circular road for longer than I care to remember. Breathe, you’re alive, you’re in pain but you’ll survive.
By the day's end I consider the options. Give up. Ah yes, this unnerving nagging negative notion. The temptation to quit searching and submit to pain refusing to relinquish its grasp. Do I accept my shit lot for what it is? I remind myself I’ve had change. There’s been progress. It’s not everyday anymore. I’ve had days I feel better, I AM getting healing. Some days are ten steps backwards after one step forward. This flare is a temporary state and I’ll find solutions. It’s up to me to figure out the new factor that was the catalyst for this episode. I’ll find the healing means that work best for me. I’ll find and try something new. I have to, I can’t keep going on like this.
Persevere. Obsess. Fall apart. Pray that Frank relents. Obsess. Fall apart. Persevere.
Chronic pain will no longer control my life, I pray, I’m stronger than I think.
If your body could talk, what would it say about your needs and lifestyle? Would your body tell you what the gurgling in your stomach meant about your diet and how that would later affect your mood? Would it mention that you forget to warm […]
Loneliness can stem from rejection, from feeling isolated in our choices, our needs, and desires. At some point during the surrealism that is getting an Interstitial Cystitis (IC) diagnosis I began to loathe small talk. “Hey how are you?” became an insult to me as […]
I have been diagnosed a suspected celiacs.
Suspected sounds peculiar but I refused
To be subjected to being the subject of
Further testing. My mother cannot imbibe,
It makes me regurgitate the protein. I’ll choose
To believe I’m positive in my diagnosis, purely
Due to feeling better when I don’t giving-in to the
Sweet tooth lurking within. I’ll choose gluten
Sensitive positive versus hell scoped invasion.
What they forgot to tell me when I chose,
A gluten free lifestyle is I’ll feel alone. More
Alone than lonely. Alone in my decision,
Rejected as strange. I’ll be the odd piece of
Person in any room. I’m now the freak.
A zoo animal prepared to face an inquisition
Of my outlandish need to nourish myself
Appropriately. Temptation is now going to
Sit at my side doing what she does best
Tempting me towards taste and desire.
She’ll attempt to sway me back towards
Her land of delicious misery and sweet
Suffering. I’ll be strong and resist her.
I’ll miss dearly the delight of giving into
Her. Saying no will be my biggest challenge.
How it feels to be gluten free in a glutenous
World: A display of sharing is no longer
A restoration of my faith in humanity
But the makings of torture. A potluck
With all my favorite enemies lined up
And staring me down. Ash fills my mouth.
It absorbs any moisture and leaves me
breathless and wanting. I’m unsure if the
Sponge sucking the space from my throat
Is jealousy or fighting the impulse to imbibe.
I know I must practice constant will power,
Be good to my insides. I cannot further
Inflame the damage years of giving-in has done.
A little scream slips out of my lips as a hiccup.
Everything I can’t touch surrounds me.
I hold my breath scared of what the
smell brings with it. Desire, the insatiable kind.