I'll be honest, I'm visually impaired, so this post actually taught me a lot as I don't know much about the topic of bladder problems in general. However, I am an msw student working in the mental health field. I don't feel like you're being hypocritical. Things do change: some problems get worse or better, you learn to manage symptoms better, and sometimes better technology replaces the need for something previously less desirable/cumbersome I'd imagine in the physical realm. Even people who don't have bipolar or any other kind of mental illness can go back and forth on an issue. I know what you're talking about is different and obviously distressing to you, so I of course don't mean to minimize. But I feel like it's probably normal. As for putting a note in your file, if this is something you're sure about, it might be worth having. It would be something akin to mental health or medical advance directives, only something inbetween the two maybe? I don't know the legality of that, nor do I know what country you live in. Anyways, the only ting I would caution is that you think about how you would feel if you felt "ok" but were having problems caused by the bipolar and then being forced in to a medical procedure (or talked out of one) that you've already described as painful. If you have some stress reaction surrounding the situation already, it may not be wise or in your mental health's best interest to do something like that.
Would putting a note to the effect of saying that you have to wait a period of time before they'll take it out be something they would consider? As in, the length of a typical bipolar episode for you... or maybe until you've met with your therapist to discuss it? Something so that you would still ultimately have control but that would insure you have proper support through the decision-making process?
Again, this is only my 2 cents. I know almost nothing about the medical or legal issues involved, but from a mental health standpoint (of a student), those are my thoughts. I'm glad that therapy is helping, and I'm also glad you seem to have found a clinic where they are interested in what is best for you in all ways, not just socially etc.
Not minimizing at all- really appreciating the response :-)
You hit it right on the head about still having control but needing help in the decision making process. That's what's happened to me during some episodes, like I can't process what's going on and freeze up. My idea was basically already deciding that yes, I need to be cathed and I'm ok with it, sort of my default mode on it, so that way if I do look distressed or start seeming iffy, or insisting that I can go without it, that they know to take a few minutes and remind me that I need it.
I like the idea about having a note saying I need to wait a period of time before having it removed. I seem to have two types of episodes- some that last a few hours, and some that last for a few days.
What's always been frustrating about it is that I function fine overall, but the bipolar disorder and other problems are just enough to really make functioning difficult but not so bad to justify not going out and doing things, and in the past most of the bad episodes have occured when I've been alone, or in a situation where I could work my way through it without anyone really noticing or someone just thinking I was in a bad mood that day. Nowadays though I'm out doing much more than I used to and *that's* when things get bad- combined with social anxiety, and it gets so difficult to "process" what's going on sometimes. That's why I was thinking having the clinic staff know about my situation and the difficulty I might have sometimes. What's embarassing is that I can't easily deal with stress because the only thing that works for me is, let's just say a bit childish and not something I can do in front of people. The other embarrassing part of it is that when I'm having difficulty processing things, the only thing that gets through is having to be talked to like I'm a child- that's what the nurse had to do when she explained that she was going to cath me. I mean, of course I know what things mean, but for that few minutes, it's like logic shut down.
But I really will see what the clinic staff and my doctor thinks about my idea. Like I said, it's my decision, but it would really help knowing that they can step in and go with what I need rather than let me make a wrong choice at that moment because I was in short-term distress. I'll also see what my therapist says about it.
But is it hypocritical for me to have insisted that I was never going to need one, only to now change my mind so much about it?
No, it isn't. Not at all. None of us can foresee how our needs will change, disabled or not. You made an initial decision based on how you felt about things at the time - things are different now and you've decided that your original decision was incorrect and perhaps a little short-sighted. But all humans are all kinda myopic when it comes to what lies ahead, and expressing their opinions about it.
Agreement with your comment! :D
2011-03-07 08:43 am (UTC)
thanks! :-) Still trying to process needing a cath to prevent panic attacks ;-)
Yeah, that would be a big one.
Just never expected to need one because I was stressing too much. The November treatment will have worn off in the next month or so, meaning the retention would have been coming back. So I guess I'm cathed already so I won't have to worry about that ;-)
Although I've been able in the past to force myself to void completely prior to a clinic appointment so the scan shows an empty bladder and I get out of being cathed. Can't do that anymore ;-)
Well, then I guess it's time to bite the bullet and keep the cath. It will definitely make your life easier, because it's one less thing to cause you stress!
Indeed it does look like I'm committed to the cath- despite a couple of bipolar episodes where I was feeling tempted to call the clinic for an appointment to have it removed. I'm feeling alot better about it and I hope I do get used to it. While there's still some discomfort, I've also gone for hours hardly noticing I even have it.
I'm thinking the best way to get used to it is to stay cathed for a while ;-)
Also looks like I can increase my fluid intake. Still feels odd filling whichever bag I'm connected to and not even feeling it.
Also looks like I can increase my fluid intake.
Drink it up, bb! ;)
Still feels odd filling whichever bag I'm connected to and not even feeling it.
I bet! That would be... really odd. But at least you can drink lots of fluids now and not worry!
thanks for the encouragement :-)
Ironic I'm more incontinent while cathed compared with having some control just in a diaper. And it feels a little strange needing a diaper even with the foley in place, but I do need the backup, as well as in case some "other" problem arises.
I still wish I wasn't having bipolar episodes that make me want to suddenly want to have it removed- *that's* more challenging that adjusting to having the foley. I think that note in my file is going to be necessary.
Also feeling a little strange knowing that this time I'm more or less going to be permanently cathed.
Well, you've gotta do what you've gotta do, KWIM? It's probably for the best, in the long run.
My therapist was telling me that today- she said I looked more relaxed and it sounded like I was doing the right thing, instead of endless cycles of the botox treatments, having them wear off too soon, stressing about retention, and the panic attacks and indecision on the whole cath/no cath decision. She reminded me also that as the bipolar is treated, I really will feel a lot better about it- not letting stress over short-term problems that might arise making me want to have it removed, and I might not need to have any special instructions for the clinic staff if I'm used to it enough.
More positive encouragement :-) Going to miss having bladder control ;-)
Well, at least you don't have to stress out about how much liquid you're drinking. There are pros and cons, and you have to decide which one outweighs the other!
Very true! I do feel a lot better not having to monitor fluid intake so much, and I think I can solve the full bag problem by getting a bigger bag.
It sounds like the pros outweigh the cons. It's just a lot to get used to, and the idea of being like this permanently is going to be an interesting experience- I hated having foleys in the past, so it's confusing feeling better about it now. But I am trying to make it work :-)
And it's not written in stone. If you later decide - for sensible reasons, not because you're in the throes of bipolar! - that you want to take it out, you can. So there's that too!
Said it better than I could have ;-) I do think I would have felt differently about it a long time ago if I had access to better info and support about it. I was never against it merely to be defiant or thinking I was better than anyone, but because for me, anything is automatically suspect if the only reason for it is "everyone else has to" or "them's the rules". I've never understood the obsession some people in the disability and healthcare community seem to have with either intermitent cathing or having a foley, and then I've wondered if that's the norm or if it was just my bad luck of running into narrow-minded people when I needed more objective points of view. I honestly think I might have done things differently if I had been able to have a frank look at all options a long time ago. Even in the disability literature or info I've found online over the years, there sometimes seems to be an inordinate amount of attention spent on trying to convince people that catheters are the only acceptable way to manage bladder problems. I swear I thumbed through one disability magazine and couldn't help but notice the large number of ads for companies selling catheter supplies. I'd be just as irked if I read a photography magazine or website and only saw ads for Nikon cameras and gear. Nothing wrong with Nikon of course, but I have a Canon and get great photos with it ;-)
I think one huge difference nowadays is having found a urology clinic with good doctors and staff working there. I've really appreciated how they presented having a foley this time as something worth trying, and not being judgemental about my past reasons agaisnt it- and I get "I told you so" from any of them when I let them know that I'm actually doing ok with it ;-)
I'm wondering too if things overall in the world of disabilities and related healthcare has changed- I admit a lot of my negative attitudes were the result of very negative experiences a long time ago, so when I come along now and give something a second look, things really are so much different.
It seems to me that you were putting a fair amount of pressure on yourself not to need a cath in the first place, to stay "less disabled." You are probably the only one who really cares that much about whether you "really need it."
It would probably be a wise thing to have them put some kind of notation in your file in case you try to make changes during a bipolar episode.
Btw, anxiety can make you hypersensitive to sensations in your body.
2011-03-07 04:12 am (UTC)
Indeed I was putting a lot of pressure on myself ;-) But it seems that I was getting a lot of "social pressure" about it in the past.
I admit it- a little under two weeks with it, and perhaps I do need it ;-) I've been so much more comfortable, and even sleeping better. It just feels so *odd* having zero bladder control with it, and having to be connected to a bag all the time.
What I don't get is why it's more comfortable now compared to the times in the past that I tried it out and hated it.
I'll be talking with my therapist and later on the people at the clinic about having that notation in my file- I really do want this to work for me and I *don't* want change anything because I might be temporarily distressed over a minor problem that might arise with it. Odd I know asking that the decision that I need it might have to be made for me sometimes but I'd rather not find myself going through another round of off and on foley placement.
But you are more comfortable with it, and that is a huge factor right there. No one but you is going to hold your previous distaste for the catheter against you. It sounds like then it wasn't the best solution for you, but now it is. Things change, no matter how much we resist that change.
2011-03-08 12:42 pm (UTC)
I'm learning that now ;-) Still not completely sure about it and I've had a couple of bipolar episodes where I started trying to find excuses to have it removed and really had to work through them.
I hope it doesn't take too long to get used to it. It's really a strange feeling waking up in the morning not feeling full but seeing the large night bag full, and not even felt like I was going, and sometimes not even feeling like I've even cathed until I notice I need to empty whichever bag I'm connected to. Strange feeling having no bladder control when I'm cathed, and at times I do get an odd feeling like I have to go really bad, a lot of discomfort, then suddenly it goes away. And I'm a bit paranoid about the catheter somehow slipping out. Plus I still need to be in diapers as backup (catheter leakage being one reason) But I don't think those are pressing enough reasons to have it removed ;-)
Any ideas on how I can better get used to it?