A J-tube isn’t going to stop me nursing!
Just like anyone who isn’t unwell, each day for me is different.
On most days I snooze my alarm a few times, like most, before finally waking up for work.
Before I even move I think about and check my heart rate. “Is it too fast? Am I dizzy?” I sit up as slow as possible and check my rate again “phew okay not too much of an increase”. I have dysautonomia, and because of that, my heart can race for no reason but especially on changing position. I could be at 60 beats per minute laying down and just by sitting up, get all the way to 120 beats per minute. It’s exhausting and not how you want to start the day, so I move slow.
I also have Ehlers-Danlos Syndrome, a disorder that causes my joints to be to be unstable and dislocate. So before I stand up, I do what I like to call my inventory. My right shoulder almost always subluxes in my sleep, so I fix that with a loud pop. Next, I check my fingers and wrists, assessing to see if anything needs shifting back into place. Lastly the knees and hips. If all seems right, I make my way to the bathroom where the rest of my routine is pretty “normal”.
After getting ready for work I say goodbye to my amazing boyfriend, grab my tube feeding pump and head on down to the kitchen. Ehlers- Danlos Syndrome and dysautonomia have slowed my digestion down so much that I use a feeding tube for most of my nutrition.
I grab my tube feeding backpack that I will wear all day because it will hold my formula and pump for the day, I get out a new feeding bag, my extension tubing, and my formula. I attach my extension tubing to my J tube button on my stomach and flush my tube, I prime my bag, tuck everything neatly into my pack, attach my tubing to myself and I’m off to work!
So I guess you can say my morning routine is a bit tedious!
But I’m off to my job as a nurse, which I love! Once I’m at work my day is just like anyone else, talking with friends, getting some work done, complaining about the usual topics, but I also field some curious looks and questions from my patients. “Why are you wearing a backpack? What’s a feeding tube? Is that forever? Do you eat food?”
I’ll admit sometimes the questions get bothersome but I can never fault someone for asking about something they don’t usually see. I’m careful to answer these questions quickly and in a way that doesn’t make people feel sorry for me. It’s not the time or place for that, not to mention I am not fond of people feeling bad or sorry for me.
Some days work is cut short. Emergency allergist appointment because I’m breaking out in hives and don’t know why, or loud messages from my pump telling me there’s a clog in the line, backflow from my tube indicating I need to get my self to the hospital for an unplanned tube change. However, if I make it through the day I happily say goodbye to my friends and make my way back home.
When I get home I do what everyone does, relax and unwind! I play with my cats and catch up on my shows. When it’s time, I’ll hear my favorite sound…the sound my pump makes when it’s finally done my 13.5 hour infusion of formula. I disconnect myself from the bag, flush my extension tubing, clean my tube site and put fresh gauze around it to keep it clean and dry. Then back to bed to prepare to do it all again tomorrow.
A day in my life can seem pretty boring, and those are my favorite days because exciting usually means a trip to the hospital or doctor! Having Ehlers-Danlos Syndrome and dysautonomia have given me a very different life than other 27-year-olds; a different life then I thought I would have right now. It can be trying and upsetting at times but really, I have a pretty good life.