There are days I wish I had already made the decision to get a gastric pacemaker. Or that I had already decided to go on TPN or a feeding tube full time. It feels like these days my stomach is constantly on my mind. Between five surgeries in six months and their ensuing pain treatment I barely catch my breath before the next wave of gastroparesis complications wash over me. Food is no longer a pleasure but a constant source of anxiety. Can I digest this? Will I ever lose this extra weight? Will I ever be able to not feel pain and actually digest a meal ever again?
I can’t say the whole thing doesn’t depress me because it does. Massively.
I never know anymore what the smart choice is. Are there any smart choices? I want to be healthy, eat salad, eat vegetables—but in the end it always feels like I’m trying to digest pieces of plastic. They are not biodegradable! But my other foods aren’t great either. Heavy carbs and meat may not cause me pain during digestion, but they take just as long to digest as anything else.
I spent my entire day today just flooding myself with fluids. Like an unhealthy amount of fluids. Drinking and drinking and drinking until I felt nauseated and then kept drinking because the only way I won’t feel nauseas is if some of this food actually moves through my body and maybe an insane amount of water might help that.
Meds don’t work. Punching myself in the stomach doesn’t work. Screaming at the scale doesn’t work.
You know what sometimes works? Drinking a chocolate milkshake. Sometimes taking a stupidly large dose of ex-lax works. But sometimes they don’t work either and I’m left just sitting there with poison in my body.
It’s not like, a problem I chatter on about in my daily life. I hate even discussing it with my doctors. I can’t even tell you how much I hate discussing it with my doctors with my husband in the room. I feel ashamed. I feel like I’m so stupid, like I never make the right choices—even when I know there is nothing else I could have done.
Food has always brought me so much joy, but the days of dysautonomia just keep getting darker. I was scrolling through my Facebook feed tonight looking at pictures of friends on spring break vacations and going to parties and thinking I can’t be there because I have to be near my bathroom. Alone. So when this is all over I can have the privacy I need to cry and medicate and throw my useless body into bed.
I wonder if this will all pass or if I’ll finally get sick enough of this pattern to start the process of handling my gastroparesis. If I can say goodbye to sushi and dinner dates and popcorn. If trading them for a more active life is even a bargain that I get to make.
I’m really enjoying the work I’m doing for ChronicallySmiling.com and sending out care packages to other patients who are probably facing much more intense medical dilemmas as I am.
I don’t know. Some days, when you’re living with a chronic illness, you just look around and think my life could be so much bigger if I wasn’t locked down to this body.