Tag: Chronic Pain

Pain As A Catalyst

Pain As A Catalyst

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 […]

Unavoidable Change

Unavoidable Change

Each moment brings with it the prospect of change. When I was first diagnosed with Interstitial Cystitis, my urologist informed me, “You have a disease you’ll now have for life but you’ll manage, you won’t die from this but it will require changes in your […]

Just Below The Surface Panic

Just Below The Surface Panic

It’s looming and crawling beneath.

It’s the reason I can feel my arm hairs raise with the goosebumps as they create a braille like story of my anxiousness, tattooed by my own subconscious across my skin. It’s the just below the surface panic I feel in silent moments, or loud ones. Loss of control, I’m on the verge, I attempt to think through every moment of every day before it unfolds. Trepidation is there, I can feel it. I remind myself to breathe. Constantly feeling one wrong step, wrong word, or wrong action away from a catastrophic panic meltdown. The reasons I feel dread echo loudly in my brain incessantly.

Is this a side effect of nagging perfectionism or the inability to see past my own pain? Maybe the agitation on the rise is both some days. How will I survive another minute, another hour, or another day?

It’s the maximum stressed feeling but it’s with me all of the time. There’s never a break. If I don’t think about my breath I hold it as I wait for the other apocalyptic shoe to drop.

I must keep the panic below the surface as though my skin holds back the insane hysteria. Like it’s interwoven and makes up all of me.

In the event I let it spill out, anxiety makes me crazy. I claw at my flesh in attempts to let the panic escape me. In that heightened frenzy I feel trapped inside myself. Tears and nonsensical strings of words flow freely. I collapse. I beat my own legs.

Breath. Breathe. Breath. Breathe. Nothing calms me down in those moments except letting the panic run its course. If these feelings escape they only has so much steam. Trepidation seems to run on fumes for days before the emotional explosion.

Recognizing the distance from my goals is much easier than recognizing the distance I’ve made from my starting point. I know that in the last year I’ve changed. I’ve grown, I’ve improved myself physically and mentally. I spend less time self loathing and more time self advocating. I’m less inclined to please the crowd and more inclined to take care of myself however the panic still exists, buzzing just below the surface. At any moment torturous negativity will spill through my mental veil rubbing my nose in the path I still must travel to achieve my expectations of success.

I’ll endure in my pursuits of mental health and happiness. Even though at times the just below the surface panic feeling is just as relentless, I’ll continue to dance with it through turmoil and fear letting it propel me to be my best self.

One breathe at a time. Inhale the calm. Exhale the panic.

Apple out,

K. Sullivan

What is Interstitial Cystitis?

What is Interstitial Cystitis?

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 brain’s pain center, telling you there’s knives slicing up your midsection. Your most intimate […]

Psychosomatic

Psychosomatic

Whenever I see my Physician for Diagnostic maintenance I remind her, Steadfast, I’m not interested in drugs. I only want to feel differently, better Than I presently do. Some nights I Go to bed terrified, anxious I won’t Rise for the next day. When I […]

A Day In Hell

A Day In Hell

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.

 

Apple Out,

K. Sullivan

The Tragedy of a Desk Jockey

The Tragedy of a Desk Jockey

I’ve always wanted to be a writer, poetry specifically has always called to me with a deep well of need. I thought desk life was going to be my destiny, and this belief became more clear through my job pursuits – customer service, ad service […]

Are You Listening to Your Body’s Language?

Are You Listening to Your Body’s Language?

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 […]

My Monster Has a Name

My Monster Has a Name

My palms are clammy. My thoughts race. Electricity crackles in my rib cage rendering my lunges immobile. A voice, I’ll call her Reason, she scorns me, “Suck it up buttercup, you’ve got a job to do.” Reason is telling me I must stay put and work through the discomfort and ever increasing pain.

A hushed whisper whimpers at the back of my mind “You know exactly how worthless you really are.” I’ll call her Despondency. Despondency is here as an advocate of failure and self loathing. She likes to remind me that my circumstances are my own fault and fills me with guilt. She enforces the belief that I am a burden. I’m embarrassed. I can’t breathe all the while my body betrays me. I’m at war with my physical and mental self more often than not. I’m on the losing side. Despondency and Reason always bring with them a cohort of stress, anxiety, and depression in response to one sensation - chronic pain.

Pain sears through me like a gremlin trying to rip its way through my bladder with razor sharp talons. I curse Frank the Fireman as I’ve so casually nicknamed my Interstitial Cystitis monster when it flares. Frank’s looking for an exit but taking his time torching through my pelvic floor. My head aches as I gently wrap my arms around my midsection. Sitting at work I pray the day ends quickly so I can go home and use what self care knowledge I have to try and alleviate any of the pain. Pain being a side effect of Frank’s rage.

“Frank the Fireman is raging today” is about a thousand times easier to say than “I feel tortured as the open wounds in my bladder spasm and lesions grow.” The hardest part of a chronic disease living inside you is the desire to feel understood, the need to communicate and the embarrassing tension that weighs the air thick and heavy between two people when something uncomfortable is the topic of conversation.

You don’t see the agony I feel. The terror the engulfs me every time I put food or drink to my lips. I wait anxiously to see how anything I consume will affect the sores coating my bladder. My sufferings are invisible to you. The battle within my body is unseen but I exert almost all of my energy managing my chronic disease or hiding the amount of discomfort I experience daily. Some days I’m better at coping than others, and on those other days I pray for relief - at times that’s meant praying for it to end, at times I’ve felt desperate and prayed for death. Please don’t give me your sympathy, I require none. What I want is understanding and acceptance as I am day to day. Accept me in spite of my struggles. I don’t want to be ostracized by this disease you don’t understand.

I have interstitial cystitis. I was diagnosed with IC May of 2015 right after I graduated college.I was told to give up gluten, chocolate, alcohol and caffeine. If I avoided acidic food and learned to manage my stress I’d be able to live with this disease but it would require a lifelong management routine of my disease, there’s no known cure. After over a year of diet alone not resolving my chronic infection like state, further testing showed gut inflammation. These results were met with words like celiacs and leaky gut. This war I’m at with my body is barely in it’s infancy. I still don’t fully understand what my body needs to heal and be truly healthy. I’m 29 years old and that’s 29 years of damage I’m working through. Its excruciatingly painful and I’ve never felt more alone.

Some days I’m on top of my self care and I feel closer to ordinary. On occasion life gets too busy and I miss a self care session or say yes to the wrong food, I end up reeling through days or weeks of agony. I have to fight my way back to find normalcy and routine. My social life plummeted as my days filled with destressing techniques, body work for tension relief and other tools necessary to manage my IC.

There’s still days I’m terrified I will spend the rest of my life with Frank’s blow torch igniting a fire between my legs. He eagerly invites Reason with her cruelty and Despondency to bring about shame, with him to any party he throws. I have Perseverance fighting by my side. She guides me through obstacles I face with the strength to endure.  I will still have to spread open my legs across table after table as I relay my experiences to healer after healer until I am healed. I spend more of my time alone with my pain than I’d like. I will keep researching ways to return any sense of control back to my life. I wanted to give up. I’m grateful my stubborn nature refuses to allow me to quit and Perseverance is my companion on this lengthy painful journey.

 

Apple Out,

K. Sullivan

For anyone suffering Interstitial Cystitis or other Pelvic Floor Dysfunctions, here’s a list of resources I found helpful for starting my journey, researching how to survive this experience and heal myself naturally. I’m still on my journey towards healing but I’m optimistic that I can live fully and thrive in life again. If you’re suffering and you’re feeling utterly lonely, know there’s resources and tools to help. Know you aren’t alone. Know that you have yourself, you’re strong and you’re the best advocate for healing you’ll find. Trust yourself.

https://www.ichelp.org

http://montrealhealthygirl.com

http://www.zenfunctionalwellness.com

https://www.urologyhealth.org/urologic-conditions/interstitial-cystitis