I haven’t been able to make my usual Gastroparesis Awareness Month post yet this year! It’s been pretty crazy trying to get everything done between work, training, and G-PACT for August. Make sure to check out our awareness month site for what we’ve got going on this month!
I truly hate this disease. I’ve seen first hand what it can do to someone, and seen it take the lives of too many, too young. Losing the ability to digest food, not being able to EAT to survive, starving, constant pain and nausea….the list goes on. This disease has taken quite a bit from me over the years, but I’ve given it a pretty good run for its money.
I’ve been pretty lucky; since the G-POEM in October 2018, I’ve been successful in living on a relatively “normal” diet. That said, I still can’t just eat whatever I want. That’s not how the G-POEM worked. I can eat better, more whole foods, and can enjoy some treats. I still struggle to eat ENOUGH. I still rely on tube feeds because my caloric demand is too high with how active I am, and I cannot eat enough calories to support myself at a healthy weight. I’m just able to get my calories from better foods now.
My most recent admission into the hospital, I wasn’t able to eat much. First of all, hospital food tends to be gross (except the gluten free PB&J. That was freaking amazing.) Some of the time I was NPO, which meant no tube feeds either. The combination of inconsistent tube feeds and not enough oral intake, within a week I’d lost more weight than I was happy with. It’s not as easy as it seems to put it back on. As much as I would love to not need tube feeds anymore, things like this happen that make me realize how much they’re really doing for me. In order to be the strongest, best version of myself, I need fuel; even if that fuel is skipping my belly and going right into my small intestines.
I wouldn’t wish this disease on my worst enemy. While the physical changes became obvious over time, what the disease did to my soul was much worse. It made me look at my body differently. It made me hate my body. It made me have a different relationship with my body. It made me into a spiteful person.
Thankfully, I don’t feel those things anymore. Rather than causing a daily struggle with those thoughts and feelings, they come and go. Some days, I have really bad body image days. Losing control of whether or not you’ll gain/lose weight all while everyone and their mother has an opinion on how you look….that messes with you. When you start to gain weight back you wonder if you’ll keep gaining weight. When you lose weight, you wonder if you’ll keep losing. It’s a daily struggle to find the balance in between it all.
The last year though, I’ve developed a much stronger, healthier mindset. This body of mine has been through hell and back more times than I can count. It’s been beaten, it’s been broken, it’s bled, it’s lost all hope of survival; but it’s still kickin’.
That’s something chronic illness GIVES instead of takes; the will to live, and desire to beat it. After getting sick, I had two choices; give in, or fight. I fought. With some luck, a medical team, and a whole lot of resilience, I am sitting here typing this to remind YOU, whoever you are, that YOU can fight back. I know you may be tired. I know it hurts. I feel you. I know it seems endless. It’s okay to feel that. It’s okay to cry and be mad at the world or God or whoever for what’s happened to you. It’s okay to grieve the life you won’t be able to live; the one you dreamed of. It’s going to suck before it gets better.
But it will. Just breathe, and remind yourself who the hell you are. YOU are relentless, and this disease has NO idea who it’s messing with.
Gastroparesis taught me how to fight. It’s one hell of a fighter, but I can take one hell of a punch