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'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 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 up with stretching while exercising and your repetitive lifestyle is causing gradual discomfort, pain, injury or illness?
Why is ignoring what your body’s trying to communicate common place in our society? We ignore pain, work through it, mask it and then ask why it exists when it becomes unbearable and we’re burnt out?
Stationary lives and lack of movement greatly impact our ability to use our bodies fully and accurately. Your body wants to be balanced and well functioning. Comfort is what we seek to feel happiness. We avoid discomfort at all costs emotionally and physically. Figuring out our own health needs are difficult. It’s easier to choose convenience and place blame with thoughts like, “Genetics are to blame for our current situation” and we’re waiting for someone else to come up with a fix to our current problem.
Desire alone cannot change our lives. Until we rearrange our priorities and we choose to listen to signals being communicated with us by our own bodies, we’ll be stuck in the same routine, fighting the same internal conflict and making no progress.
Your mental state, the emotions you feel and the physical signals are all tools your body is using to communicate with you. You are the captain of your own vessel. You choose how you feel in this life. You’re in charge of your own health journey, the advice you buy into and that which you ignore. You can hear your body telling you that pain is coming before it’s painful if you pick up on those signs. Numbness, burning, tingling, awareness of individual body parts are all signals that should be listened to rather than ignored. Weight gain, mood swings, stress, and mental challenges can also be a reflection of what’s happening systematically within your body. Whatever’s calling your attention, that part of your body trying to tell you there’s an issue before it becomes something worse. Are you ready to listen and take action?
I’ll step off my apple core now.
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 […]
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.
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.