10 Things I've Learned While Mobile Tube Feeding
In addition to a double transplant and full body nerve damage, I have been adjusting to perils of living with gastroparesis (stomach paralysis) for the past few years and am now tube fed for up to 12 hours each day. I was fitted with a nasojejunal feeding tube four months ago, yet it has only been two weeks since getting mobile with an Infinity Pump and backpack. This is what I have learned about mobile tube feeding in just two weeks.
1. Being mobile again is fabulous. I was getting restless after being hooked up to an IV pole on the couch for three and a half months to feed.
2. After having not worn a backpack since high school, suddenly wearing one again for 12 hours a day with a decreasing liter of fluid is bound to hurt eventually.
3. When venturing out in public with a feeding backpack – people are going to look.
4. Actually, when venturing out in public with a feeding backpack, people are going to stare, and point, and whisper loudly whilst standing close by about the, “Thing coming out of her backpack and going up her nose…”
5. When venturing out in public with a feeding backpack, if that which was noted in points three and four above did not make one feel self-conscious enough – some people are going to ask what is in the backpack… and I am not talking about security guards, shop owners, or anyone that usually has the right to ask such a question as part of their job. No, I am talking about the man or woman waiting behind or beside you in the coffee queue, who would not usually dare to ask a woman whom they did not know, what was in her handbag or backpack.
6. When venturing out in public with a feeding backpack, avoid large crowds. People can become complacent in large crowds and knock into your feeding backpack, which may cause tugging on your tube. Some people can somehow even get their hands caught up in the straps of your feeding backpack, and if that happens, hang on for dear life… it is attached to your nose!
7. When getting in a car to drive with a feeding backpack, make sure you slip it off one shoulder before trying to sit behind the steering wheel, then shut the door before slipping it off the other shoulder and placing between you and the door. It is attached to your nose, and if it falls out of the car, it is going to hurt your nose… or perhaps your head as it crashes into the car door trying to chase the speed of the backpack falling.
8. When getting out of a car after driving with a feeding backpack, make sure you slip it over one shoulder before opening the door. Again, it is attached to your nose. Refer to point seven above to be reminded of what happens if the backpack falls out of the car.
9. When wearing a feeding backpack, it is best not to bother picking things up off the floor if possible, unless you are good at squats. Bending over is likely to result in weight distribution shifting, the back of your head colliding with the backpack, and the tube tugging abruptly on your nose as you attempt to pull yourself together.
10. Being mobile again is fabulous, but the reality is, I still must feed for 12 hours a day via a tube and pump for the rest of my life, and it is OK to be struggling with that fact some days.
Follow this journey on Instagram here.
We want to hear your story. Become a Mighty contributor here.