I’ve been really struggling lately; walking the tight rope of gastroparesis and chronic illness has my brain short – circuiting. Chronic illness whether it was irritable bowel syndrome as a teenager or gastroparesis now takes over almost every sector of my brain and life, especially now. I was always so proud that I was still able to be a functioning, independent woman and now I’m a partially functionally, frequently dependent on others woman.
The truth is what chronic illness takes from me is not my independence but rather my choices. My ability to make the choices about my own life has been completely diminished. My days are ruled by how bad the pain, the fatigue, the nausea, the TMI bathroom symptoms are; its not my choice as to whether I get to go on a long walk or just make it to my kitchen. I have to have a running tally is my head of where my symptoms are at, what I have to get done, and what I want to get done. Often if I want to spend an hour or two out in the world and depending on the activity; I’ve been resting, eating/hydrating precisely, and practicing mindfulness for days before just to have the best chance of participating and each event costs me. Every day the questions are: need, want, can I handle the costs, and what if I’m wrong.
All the while the world keeps spinning and I miss those choices I watch others make from the sidelines. Choices like what career they want to pursue, job they get to go to everyday, where they get to live, having a family or not, what/how to balance their wallet every month, and even building relationships. Choices larger then every next right step or move to maintain my health, obey the doctors and my body, stay out of the hospital, and mitigate the damage across my entire body from the doctors, loss, illnesses, and side effects. I live in shifting sands grasping onto the belief that making the smart choices now and facing all the uncertainty will ensure a more stable, better future.
*Although in our current medical system, it strains “the powers that be,” not the actual doctors, to believe that my gastrointestinal health impacted my dental health as well as my mental health. *
Ultimately the truth is my story is still being figured out; I live my life one day at a time or three months at a time between my gastroparesis specialist appointments. I’m reminded every time I log onto social media, I’m not the only one having to make these judgements and live in these narrow parameters. Some days that’s helpful not being alone but there’s always an aspect of loneliness because I’m the only one living in my body feeling each symptom and each choice slipping away from me. Some days it makes me grateful because for all the uncertainty I’m not writing this from a hospital bed or with tubes sticking out of me or as a child. Today the weight of it all just has me a little too contemplative, lost in the weeds of all the things, and holding onto the hope that my tomorrows will be better. And at some point, my story is more figured out balancing the illness and a full rich life of simple yet beautiful choices and opportunities every day.
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