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Why I Don't Always Do What's 'Good' for My Illness

I spend every day controlling every minute detail of my life. To call me a control freak is an understatement. Each morning, I take a shower, brush my teeth, then take my morning handful of meds. I stop eating before I’m full. If I want to savor the occasional soda, I open it and leave it out until it’s flat, but not long enough that the syrup settles.

Now, I don’t do these things because I have a problem with control. Trust me, self control is not my forte. I do all of this to maintain a very sensitive homeostasis. If I get out of the shower and head straight for my meds, I’ll be nauseous before I’m fully dressed. Drink that fresh soda? I’m down for the count with a bloated belly. Forget about enjoying a full plate of delicious food. I’ll be in a Tramadol-induced stupor for the rest of the day, fighting the bull tearing through my guts. Crohn’s disease has introduced me to a life of schedules, rituals and monotony. I know the consequences and avoid them like a bitter ex-boyfriend. And I hate it.

I hate the schedule. I hate the fear of diverting from it. I hate the constant reminder of consequences and punishments. I want to enjoy sugar in my tea. I want to eat when I want, not when I know I should. I want to sit with my girlfriends and eat heaps of ice cream. I want these things so badly, but I know the hell I will have to pay.

Some days, I decide I can’t live in that fear. Some days, I make a choice that is good for my soul, rather than what’s good for my body. I eat a little more. I push myself a little harder. I do as the Romans do, so to say. I can enjoy the company of friends over an overflowing dinner table. I can eat the buttery, crispy popcorn I used to love as a kid. Will there be a price to pay later? Yes. But that’s OK.

I survive by waking a feather-thin line, juggling so many pins that can never touch the ground. But sometimes, all I’m doing is surviving. I miss out on the “living.” I miss out on the laughter and indulgence and joy. And those three intangible things are the best form of medicine for me. I need to partake in the joys of life every now and again, even if it’s against better judgement. I also know this can throw you for a loop.

As my loved ones, you run around with a safety net, trying to catch me if I falter. You live this life right along with me and know my schedule better than I do sometimes. I can see your raised eyebrow as I pop a baby carrot in my mouth. I can hear you telling me we can “leave any time.” I see your care and concern, but please understand: Some days are for me. I promise, tomorrow we’ll go back to the shower-teeth-meds routine. I’ll eat the overcooked veggies… Tomorrow. I’ll watch my sugar intake later. But today, my soul needs this. Today, we are living.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.