I've just spent the last half hour changing my pants and my underwear. If you wonder why it takes so long, talk to those who have seen me go through this process. It is anything but easy. It involves leaning from side to side, wriggling, jiggling, pulling and yanking. By the time I am done, I am exhasted.
Yet here I am, sitting in front of my computer writing about it.
The reason I had to change has everything to do with these damn catheters I wear these days. The kindest thing I can say is that they are not to be trusted. They leak. The flow back when full. They come off. They disconnect from the drainage hose. All in all, I do better without them. At least when I don't have a catheter on, I don't have that false sense of security. I know, when not wearing a catheter, that I am at risk.
The road trip taught me that, at the least. Never trust these damned things. I do better without them. It's not the failure. It is the false sense of trust. When I wear one of these things, I feel like I can pee without regard to the outcome, as it were. Yet the outcome is the very problem. The outcome doesn't always make it into the bag. Often it ends up on me instead, through failure of the seal on the catheter, through failure of the connection of the tube to the bag, or just because the bag at the end of all this is overfull.
I admit that the overfull bag is my own fault. Even the seal on my penis is kind of my fault. After all, I wiggle and move a lot. That causes the seal to fail. Yet, none the less, I have the false sense of security with these damned things. I simply cannot trust them, even though I want to. In the end, it is a problem of mind. I can wear the catheter only when I go out in my power chair, or perhaps my truck. Beyond that, I am better off without them, here at home. relying more on going to my bathroom and peeing in my jug. That is perhaps the most important lesson of the last few weeks.
Your blog is full of honesty, courage, common sense and humor. As the sister of someone very newly diagnosed with ALS (a few days ago), it gives hope. May you continue to inspire us for years to come.
ReplyDeleteI am so sorry to hear about your sister. Where do you live? How is she doing?
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