People often use the analogy of climbing a mountain whenever they’re faced with a hard journey. Gastroparesis, or really any illness for that matter, is most definitely a mountain, one nearly as tall as Everest.
If you would have asked me this summer, I probably would have told you that I was, in no way, shape, or form, climbing the mountain. Tripping over my feet and somersaulting backwards down it is probably a much more accurate description of what I was doing. At that point, we knew that the mountain existed but, because we didn’t know what it was named, I had lots of trouble even finding the mountain in the first place to even allow me to climb it.
Once we finally named the mountain after a battery of tests and being poked and prodded endlessly, it was time to pack my bags and climb it. The climb started out at a surprisingly fast pace. I got my first NJ tube and was feeling pretty fly minus the persistent sore throat and nausea (but the dilaudid I took for that definitely helped with the fly feeling). I was gaining weight pretty quickly and no longer looked like a skeleton.
The climb reached a standstill when I got my surgical feeding tube, a PEG tube, and had to try putting my stubborn stomach to use. We quickly found out that didn’t work when an avalanche of symptoms came on and we retreated down the mountain to a safer place, switching back to post-pyloric feeds, a path that was already tested and proven effective.
When I eventually got to come home from the hospital, I expected my climb would improve from there. That it would get easier and things would get better. Boy, was I wrong. Coming home brought on a whole new group of obstacles onto my path but I wasn’t ready to give up.
We continued up the mountain but at a much slower pace than we had previously. I started making some improvements. I was able to switch my tube feeds so I was only feeding 19 hours a day instead of 24. I started physiotherapy and, with the help of my kindhearted therapist, climbed a literal mountain (a.k.a a flight of stairs but who’s counting?). My walking was improving and I was clocking more and more miles every single day.
But all of these changes took a toll. The new formula that I was on in order to get my 5 hours off made me so nauseous I wasn’t sleeping at night. It was also making my tube clog, at the bare minimum, once a day. My literal mountain climb took so much energy that I hibernated for the next few days and it was suggested that I stick to much smaller mountains. My strength was improving but my muscles were sore constantly and I had to reintroduce tylenol into my medication rotation.
Sure, on paper, things were improving but my quality of life surely wasn’t. These changes weren’t worth it so I decided to go a little ways back down the mountain. This time though, it was the right way. Instead of stumbling backwards, I took carefully planned steps down. I went back to my previous food that worked better for me. With the help of my physiotherapist, I found exercises that would take less of a toll on my body. Though these changes weren’t necessarily all helping in terms of long-term improvement, my day-to-day life was better.
When using the mountain analogy, usually going up is regarded as the right direction but I’ve come to realize that there’s no right way to tackle a mountain. Sometimes, you can tackle it all in one slow and steady climb. Sometimes, you need to take breaks as you go along to get your bearings and then continue sprinting up. Sometimes, you need trip and fall to find out how to properly climb a mountain. And sometimes, you need to head back down the mountain and find a better path in order to make it up. None of these choices are the only right choice and none of them are wrong either.
That’s why I’m no longer regarding moving backwards as a failure because I see now that, occasionally, that’s what you need in order to move forward again. When you get sick, nobody hands you a map pointing you in the right direction. Rather, you get a list of several pathways and it’s up to you to find which works best. I made the choice to go backwards to find a better path for me and I’m enjoying the climb much more now than ever.
Don’t ever let a few steps backwards stop you from climbing the mountain.