Saturday, 24 December 2016

dignity... always dignity

As I mentioned previously, one of the things we really wanted to talk about at my MS MOT was my ongoing issue with my bladder. Longtime visitors here may remember that I've been taking Solifenacin for a couple of years now (Oxybutynin before that) and have been through a bit of light Bladder retraining - who could forget my self piteous bellyaching about completing a Void chart?

Anyway, I've been feeling even more put upon recently with endlessly numerous trips to the toilet, before taking even the shortest journey. It's been getting harder and harder to leave the house, especially if I (or we) need to be anywhere at a particular time. And I can't remember the last time I was able to sit through an entire film at the cinema without having to nip out. Frustratingly, when I do go, although I do GO, it never feels like I've GONE enough.

As I've had the same issues and have been "dealing with them" for at least three years (if you can call planning all travel by toilets along the route "dealing with things"), the fact that I haven't had a UTI by this point is frankly miraculous.

I've recently been through a period where I've had to get up to use the loo in the night. But I've always been able to put this down to a variety of other things - too much booze, drinking anything too late, work-related stress. Even taking into account the fact that I haven't had any "accidents", it needs sorting out.

So earlier this week I found myself back at the QMC in Nottingham. The MS nurse I saw last week had suggested that I might be able to increase the dosage of Solifenacin which she thought might go some way to solving the issue.

Now bear in mind that before my appointment I had been to the toilet:
  • Twice at home
  • Once at my parents' house on the way
  • Once at the hospital
All things considered, I was fairly confident that my tank was as close to empty as possible.

So I'm sure you'll appreciate how surprising it was to hear the urologist say that my bladder was close to full - holding around 380ml.

The long and the short of it is that there's no benefit from upping the dosage of Solifenacin and no other drug options.

So in January I'll be visited at my home by a nurse who will talk me through intermittent self-catheterisation. Not really what anybody wants to hear.

But the urologist said that these issues won't go away, not the way I've been managing them anyway. And using a catheter once a day should give me a bit more control and maybe get my life back.

(I know that sounds dramatic but even at this stage it really has had a massively limiting effect on my life and the life of my family)

Even so in the walk from the clinic to the front of the hospital I went from frighteningly stoical about it all, to depressed, to full-on enraged, all in the space of 2-3 minutes.

I'm writing this with a couple of days distance. Now? I'm still pissed off about it.

I can talk a good game about certain things being necessary tools to get my life back.
  • Walking sticks? I have used at least one every day for the past 5-10 years. But I still really hate them.
  • Wheelchair? Sometimes necessary and often totally life-enhancing. But I hate it and will do anything I can to avoid using it.
  • Self-catheterisation? I can see that this could really be beneficial - plus I know all too well the affect these issues are having on my day-to-day life. But I can't imagine anyone has ever been overjoyed at the thought of doing it.
Yes, I know there are worse things in the world that people deal with on a daily basis. And whining about this makes me sound like the sort of "poor me", cry-baby Bad News Blogger that I despise

More than anything I feel bad for Little Steve. We've had good times over the years!

I feel like a guy who's looking fondly at the family dog, knowing full well that in a couple of weeks I'll be taking him to the Vets to get his nuts snipped off. Does he even know what's going to happen to him??!

Whatever. Like always I shall prevail!

5 comments:

Dicky Rock said...

Keep on trucking buddy. Keep on truckin....

Tripping said...

It's not that bad - I promise! This is a link to my experience with 'Cathy' http://www.trippingonair.com/2015/07/honey-i-peed-bed.html

stevedomino said...

thanks for both these comments - long delay in responding due to festive celebrations.

Dicky Rock - one of my oldest friends - thanks for reading, i hope things are good with you.

Tripping - i read about Cathy when you first posted that - i know deep down that it won't be as bad in reality as it is in my mind - i also know that the benefits will be exactly the same as the ones you outline in your post. thanks for the reminder

swisslet said...

Right. I have sporadic bladder issues and have had an accident in bed fairly recently... so I feel your pain. I'm on a downswing at the moment, which is very welcome, but I also rarely get through a night without at least one toilet stop and I'm very aware of how much fluid I take on, especially after 8pm. I feel your pain and frustration.... although I also have to say that the idea of having something that will help me PROPERLY EMPTY my bladder is a very attractive thought indeed, even if the mechanics are potentially a little humiliating (although - hey! - I now take an absorbent mat with me when I go to stay at a friend's house.... let the good times roll!)
You need time to mourn too. That's okay and doesn't make you a misery blogger.
I was at the urologist for something else the other day, and I might need surgery down there. Now that's a thought to conjure with.
Keep on keeping on, bro. And let's get another date in the diary at some point to talk about OTHER THINGS.

stevedomino said...

to OTHER THINGS!