It's occurred to me that not everyone may know what Interstitial cystitis (IC) is. I’m going to ask you to imagine an experience. This experience should feel traumatic, scary and overwhelming. Delve into your imagination and envision burning, urgent discomfort. Agony bursts through to your […]
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.
I'm not talking about the kind where you read other people based on what they are saying physically, I'm talking about ques your body sends you. Are you listening? If your body could talk, what would it say about your needs and lifestyle? Would your […]