When I was a kid, the popular book series was “Goosebumps” by R.L Stine. There was a particular set of books called “Choose Your Own Adventure”. These were by far my favorite growing up because it wasn’t a set story. You would read so many pages and get a baseline of what is going on and then you were given a choice: Open the door or continue down the hallway? Stay together or split up? Based on your answers you were taken to different pages and sometimes your choices would lead you out to a happy ending or you had a dark fate. I enjoyed these books so much that I would re-read them over and over so I could see what all the possible outcomes were then read through one last time so I could have the best story I could make. I feel like my life has turned into one of these books. Each story is a regular work day and the decisions I have to make will determine if it goes well or turns bad.
My daily story isn’t filled with drama or comedy but every little detail is a choice that can either lead me out the door or straight to bed. I can’t peek at what each possible outcome could be. All I have is what I think I’ve learned from past choices, but even then my paths aren’t certain. All that is certain is that Gastroparesis is unpredictable.
I thought I had found a good rhythm with Rice Chex cereal for breakfast but found out that if I drink too much of the milk I get really bloated. I thought I found a good breakfast substitute in protein shakes, but depending on the brand and how I’m feeling it could actually ruin my day by bloating my stomach so bad that you can physically see my stomach inflate. I have tried to reason and I have tried to find trends but I feel it’s hopeless. Any lists that I make contradict themselves. What’s “safe” one day may not be “safe” the next. So it makes it hard to make “good” choices to get me through the day.
I joke that I feel better as long as I don’t eat. Some people chuckle but others know that this is a true statement. As long as I don’t eat solid food or drink anything that has the potential to bloat, I can almost live on Pedialyte popsicles and Gatorade… almost.
This keeps me hydrated but it doesn’t provide the basic essentials to keep my body going. I need carbs, protein, and fats. I need vitamins and minerals. Sure I can take supplements but they only do so much. I’m literally starving for a routine, a list of safe food choices so I can have a somewhat basic routine.
A normal person has a day full of choices, but they don’t have to think about how much energy this will use, how will this make me feel right after, and again in 20 minutes. I know now that I took for granted not having to think about much and just go, go, go all the time. Before I got sick I could wake up get ready and be out the door in 1 hour if I needed to. But now I have a series of choices to make before leaving the house—a “choose your own adventure” book.
I start my day by waking up at 6:30 am every day. I have to decide if a shower is going to be too much for me. I have to play Russian roulette with my breakfast choices. Depending on the outcome of that will tell me how much time is left before I have to leave at 9:00 am. Now, do I have enough energy to straighten or curl my hair? After I get dressed and pack my liquids for lunch, I have to evaluate myself. Where is my energy level at? What is my pain level? Am I able to safely drive and focus on the road instead of my stomach? If all the right choices are made, then I can successfully drive the 45 minutes to work. Then it’s a whole new story and series of choices to see if I’m making it through the entire day.
I used to love these types of books. But now that my life has turned into one… I want to make sure people know what they are taking for granted. All your sunny days could suddenly be turned grey. I’m thankful to have such a great support system though. Because of the understanding people in my life, I’m able to see the sun shine on cloudy days.