Face it, most people love to eat. Our days revolve around what time we’re eating and our holiday festivities around big dinners with lots of food. I scroll down Facebook and half of the posts I see are about food. Our world is pretty food-centric which is reasonable considering its one of the main necessities we need to survive.
After being part of this world my whole life and now, relying on a tube for nutrition, it can be pretty odd at times. Food still plays a big part in my life just not in the same way as it did before. Using a feeding tube has definitely made me change my daily routines and become more recognizant of and grateful for certain things.
One of the biggest things it has affected is family dinners. Most of our holiday celebrations are centered around eating but it’s not only on holidays that I miss out. Growing up, we always made time to all have dinner together at home every night but now I can’t participate like I used to. If I’m feeling okay, some days I sit at the supper table with my family regardless just to be in on the conversation. Others, I stay in my room. Not having a plate of delicious food in front of me during family dinners and celebrations though has helped me be more grateful for the company and conversation which is the real reason for our get-togethers.
Tube feeding has also caused me to run on a different schedule. Most people’s schedules revolve around meal times but mine around the window of time between flushes. To keep a feeding tube clean, you’re supposed to flush it with water every four hours. I’ve noticed that I’ve started planning things around those flushes rather than around meals like I would’ve before. Sometimes, it’s easy to forget when making plans with people that they actually do need meals and don’t run on my odd schedule.
I’ve also gotten a lot of use out of having memorized my multiplication tables as a kid. There’s surprisingly a lot of math involved in tube feeding! You need to know how many bottles of feed you will need to hit your calorie goal for the day. Then, you need to find out how many hours to run it and a which rate to get it all in. After you figure it out, you can then feel safe going to bed knowing your food bag won’t run dry.
Speaking of food bags running dry, you know how much you hate the sound of your alarm clock beeping in the morning? Us tubies have a much more dreaded sound, the beeping of our pumps. For some reason, problems only seem to come up when you’re sound asleep. Suddenly, you lifted out of dreamland with a machine beeping at you loudly. Then, the panic of finding the problem ensues. Is my tube clogged? Had my feed run out? Or is the pump giving me the dreaded “no flow in” message? Most of these (minus the clogging) can usually be pretty easy to resolve but are an added pain in the butt.
Because of the nature of tube feeding, I now have enough medical supplies in my house to run an emergency room out of my bedroom. Various waterproof medical tapes? Got it! Syringes of all different sizes? I have plenty! Not to mention, the 20-some cases of tube feeding formula sitting in my basement, enough to live off of for months. If ever there were a zombie apocalypse or some sort of huge natural disaster, I’m all set!
All in all, tube feeding is a different lifestyle than most people live, that’s why spreading awareness is important! Through awareness comes understanding and acceptance. It’s important to realize that what’s normal for you may not be normal for someone else and that’s okay. Sure, we live differently but my lifestyle isn’t “weird”. Tube feeding isn’t limiting, I just stick my pump and feed in a bookbag and bring it with me! Anyways, rather think being able to eat all day while doing other things is definitely a super power!