In the spirit of really sharing what life is like with a chronic, progressive neurological illness, I felt like this too should be something you should get to know. It would be my preference that this part of it magically disappears, but that probably isn’t going to be happening.
My last mention of bladder issues was in my last update when the urologist increased my medication. The increase in medication to help me to urinate was not consistently giving me any relief, so the next step was to go in to have a nurse teach me how to self-cath. I called last Wednesday, they said to come in that day, and I cried as I hung up the phone.
I really didn’t want to do this. That was old news, but I didn’t know exactly why until the tears came when I hung up the phone. More than not wanting to, I didn’t like thinking about what it potentially meant in the big scheme of things.
Just the same, I went, cracked jokes with the 22-year-old nurse who was teaching me, and learned anatomy that I probably should have learned in junior high science classes. I toted out a large, clear baggie filled with single use catheters, along with my walker and purse back to the car.
Since then, I have gotten the hang of it. My skill level isn’t matching my comfort level with doing it, however. I find that each day I am growing more and more resistant to using them. I don’t like it. It’s gross. I don’t know that it ever won’t be icky. Of course it doesn’t matter how I feel about it, just so long as I do it with some regularity.
No one seems to be talking about this anywhere on the web. They mention it, but don’t mention anything else—particularly what it is like emotionally to self-cath. I never hear anyone with my illness talking about it, so it is my hope that someone somewhere might give me just a smidge of validation.
Neurogenic bladders aren’t talked about (some on MS and spinal cord injury sites) despite the fact that these are usually made worse by medications used to treat spasticity and clonus symptoms. I admit, this is not something I really want broadcasted out there on the world wide W myself, but it seems to me that someone needs to start the discussion.