I really have had enough of this – and I really don’t know what I can do about it… Since I left hospital, almost every catheter I’ve been given has expelled itself, with full balloon, within 24-72 hours on average. I don’t know how, and I don’t know why. But what I do know is that once again I am at the mercy of another thing controlling my life. Again.
I can’t really go anywhere anymore – again – because I don’t know when it’s going to come out. I can’t sleep properly because it causes “pain” – strange sensations that are basically very painful to experience but aren’t like normal pain. They’ve given me Baclofen, but the dosage needs to be raised. But I know it’s not going to help that much with this (it’s great for Fibro spasms though)… From some of the sensations I get with them, it feels like they’re just not going to be tolerated… and my system will do whatever it can to simply be rid of it. And it does a pretty good job of it, too.
I should be seeing a urologist ASAP, but we’re talking about NHS waiting lists here… I’ll be lucky to see one before I take out my pension (which will be at age 85 at this rate…). I probably require a suprapubic catheter… though apparently sometimes injections of Botox into the bladder is occasionally used to stop this from happening too… Not the most pleasant idea, either way. But if it stops this? I’m all for it.
I’ve been through countless catheters in the last three or so months. The District Nurses don’t know what to do with me – except, just put another one in, of course. This one was by far the worst one though – it was trying to come back out from the moment it was put in. Sometimes I do wonder what kind of trauma has happened to the urethra, too… Flushing out rather large balloons constantly almost every other day for weeks cannot be very good for it. I know it hurts a lot to pass water when there’s retention buildup – which is quite constant now, for some reason. Then the force of the water expelling dislodges the balloon – and with every one, it wriggles more and more loose until it expels once again.
Regardless of how much longer can I take this – there really is the question of how long my urethra and bladder can take it… It’s going to end up harming them badly, shoving that balloon out several times a week. You’re supposed to average one catheter every three months, not three every damned week, after all. It must be causing great irritation. And I can’t manage without one. Oh, yes, that ship sailed a long time ago now.
If the District Nurses gave out Air Miles, I could go to the damned moon and back, I’m sure. I’d definitely be eligible for a free pen, at least. Or maybe a keyring.
I can’t even find any other reference to such a thing happening elsewhere. No reference to it online by other people, nor on medical sites or even where there is advice on catheters. It just isn’t mentioned. Not expulsions that happen nearly… Every. Single. Day.
It also doesn’t help when you have places to go, appointments to keep. Or a life to be lived. I have only just returned to some form of an existence after spending at least eight months firstly bedroom-bound, and then hospital-bound. I was expecting to be able to have at least some freedom to do a few things that I pleased. But no… at this rate, we’re back to being bedroom-bound again.
I am again not even certain I will be able to realistically make it to the appointment I have tomorrow, quite far away, for a new wheelchair consult. Well, my first wheelchair with them, because it took them bloody forever to get to me on the waiting list… But that’s a different type of gripe…!
I can’t realistically go out in the car for well over an hour each way, plus appointment time, without a catheter. If the next catheter only lasts 24 hours I’ll either not be going or I’ll be out there in the middle of it when it finally gives up the ghost.
I really can’t work out just how the hell it’s managing this… The thing just quite literally fell out this time. No spasm, no massive flow of water… It just fell out. Just like that. I’m going to go out on a limb and say it may be getting worse….