Today I heard from a woman whose 56 year old husband had his bladder go atonic, dysfunctional, two months ago. Understandably, he's suffering both physically and psychologically given this abrupt change in his life.
She had read the essay I wrote for 180 Medical, which supplies my catheters, that had the not-very-cheery title, "My urinary catheter-related depression and anxiety." I was asked if I had any resources, advice, or support I could suggest.
Well, here's the thoughts that come immediately to mind. I'll use this blog post as a reply to the woman, copying it into my email reply. I'll speak to her husband, hoping that some of what I say can be of some help to him.
First, and most importantly, know that these early months in your newfound catheter life almost certainly are the most difficult you'll experience. Things will get easier with time. Hey, like me, you've spent your entire life up to this point taking going to the bathroom for granted.
When you had to go, you just went. If a bathroom wasn't available, a tree would do.
Now you're faced with having to organize your peeing, to schedule your peeing. That's a huge adjustment. It's completely normal to feel upset, angry, anxious, depressed, maybe even guilty if you think you could have done something to prevent your bladder from going on strike, as I like to put it.
Guilt is something I've wrestled with, as I said in my essay. Recently I had three sessions with a counselor. One useful thing he said when I started to talk about how I felt bad that I might have been able to prevent my bladder from going dysfunctional was this:
"Hey, Brian, had this ever happened to you before?" I said, "No, of course not." "Then how could you have known what to do, since you'd never experienced anything like this?" Good point. That helped me shunt my guilt into a corner of my mind rather than front and center.
I've also been helped by a talk I heard on Sam Harris's Waking Up app by a modern practitioner of Stoicism. He spoke about how each of us, without exception, is living a dream life. Why? Because no matter how difficult our life might be, someone else has it worse, so to them we're living a dream life.
I keep this in mind when I'm feeling sorry for myself because I have to insert a plastic tube into my urethra, and thence into my bladder, five times a day. There are many people who can't walk. There are many people with incurable cancer. There are many people with intense pain.
Would they be overjoyed to trade my bladder problem for their problem? Absolutely. Now, this only gets me so far, because even though I can envision having a worse problem that a dysfunctional bladder, the plain fact is that I don't have that worse problem. I have a bladder problem.
I do feel grateful, though, when I see someone in a wheelchair and realize that not being to walk would be a heck of a lot worse than not being able to pee properly on my own. (And it isn't uncommon for someone to both not be able to walk and need to use a urinary catheter.)
A lot depends on finding a easy to use catheter that is comfortable to insert and remove. I'm a big fan of the Flex Coude Pro pocket-size catheters. Being on Medicare, I don't have to pay a whole lot for them, since they're spendy.
It was aggravating at first when I had to apply lubricant to an inexpensive catheter, be super cautious about not touching it with dirty hands, and all that. Now I can carry several Flex Coude Pro pocket size catheters in my hip bag for when I need to use one when I'm out and about.
(I much prefer private restrooms, but can do my catheter thing in a bathroom stall if necessary.)
Deciding how open to be with friends and family can be a difficult decision. Using a urinary catheter isn't a normal conversation topic. If you have a bad knee, or a sore back, that's easy to talk about. Having to stick a plastic tube into your penis, not so much, to put it mildly.
Since you're 56, probably you're still working. Depending on the sort of job you have, using a catheter at work either could be fairly easy or more difficult.
How open you can be with co-workers is another issue. It's hard to find humor in using a catheter, but you could always tell people something like, "In case you're wondering why it takes me longer to use the bathroom, here's why -- and it's probably not what you think."
Along that line, I tried out a hypnotist to see if she could make me feel better about my bladder problem. Once she asked me how long it took to do my catheter thing. I told her, around seven minutes, I guess. She said, since you do it five times a day, that's 35 minutes a day, right?
Which helped me to realize that while using a catheter occupied a really big space in my anxious brain, it wasn't a huge part of my day. After all, obviously I was spending time in the bathroom prior to using a catheter. Now I was just spending a bit more time.
I was familiar with the term "differently abled" before. Now it means something real to me. And hopefully to you. We're both differently abled when it comes to peeing. Some people have to use a cane to help them walk. My whole life I've worn glasses or contacts to help me see. Now I use a catheter to help me pee.
Yes, it's a big deal. But not such a big deal for me as it was five years ago. Sure, adjustments large and small have to be made in our lives, and also in the lives of our wives. Yet life goes on. Hopefully these ramblings are at least some small help to you.
If I've missed the mark on what you're concerned about with your catheter life, email me and I'll try to share some ideas more tailored to your needs and situation. Know that you're not alone in your struggles, though sometimes it will feel that way.