as small as a world and as large as alone, Tuuuuuuuuuuuuuubes! Tuuuuuuuuuuuuuuuubes! ...

3:58pm September 5, 2014

Tuuuuuuuuuuuuuubes! Tuuuuuuuuuuuuuuuubes!

Sorry, sometimes I get caught up in how much I love my tube. It’s like… being a cyborg, in the coolest possible way. Because I don’t have to taste any of that medicine (unless some of it burps its way up my digestive system, which happens every so often, especially with the stronger tasting ones). I don’t really have to feel very much of it going in, unless I put waaay too much water or something. I can eat all day long and not even notice that I’m eating. People can turn on my feeding, or give me meds, without me even noticing, because I’ve gotten so used to people manipulating my tube.

Here I’m doing it the easy way. The food tube is covering the large port of the j-tube so I don’t have to hold it shut myself. If the food tube wasn’t there, I’d have to have my thumb over the large port to avoid the meds shooting out and hitting me in the face potentially. This early in a tube’s life they rarely do that because the tube is so stiff, but as the ports get looser with time it becomes a problem. And sometimes even when the ports are stiff it happens, so you can never count on it not happening and become complacent. But with the food tube in the large port it’s a moot point anyway.

I wish the whole world could be as happy about my feeding tube as I am. I know I can’t really expect people to understand. I can’t expect people to understand that I have an actual emotional relationship with a little piece of plastic stuck into my stomach and intestines. I can’t expect people to understand that I absolutely love having something that a lot of people would literally rather die than experience.

Maybe it’s because I remember what life was like before the tube, and how hard it was.

But that’s not all of it.

I just really, really love my tube. And I wish I could share that love with more people.

I know that some disabled people get this way about our adaptive equipment. I’ve never really had it happen before. Lots of wheelchair users get this way about their wheelchairs. I liked my wheelchairs, don’t get me wrong, but I never loved them and named them and all the things I’ve seen some chair users go all out doing.

But feeding tubes, I love them, I absolutely love them, I feel like they’re people, I feel like we go through things together, I feel like I have an entire relationship with them, and I can’t explain it at all.

Oh and that’s Mestinon/pyridostigmine I’m giving myself here. It’s for myasthenia gravis, and I’m definitely discovering it helps with the head-tilt problem in mid-afternoon where my head starts falling onto my shoulder.

tl;dr: I LOVE MY FEEDING TUBE.