Tuesday 22 November 2016


We need to talk about my bladder.

Well.  To be honest, I think there's a pretty good chance that you could probably do without this particular chat...but I'm going to talk about it anyway.  If you're squeamish, it's probably best to look away now.

In some ways, I'm an atypical MS patient: as I'm very aware, there's not all that many of us who are able to run marathons. That's not to say that I don't have any problems at all.  I know that I've talked a lot here about the loss of muscle strength in my left hand side and the challenges that gives me with my running, but I haven't really talked at length about anything else.  I might have mentioned my bladder before, but not surprisingly, it's not something that I particularly care to dwell on.

I've never had a particularly strong bladder.  I've always been one of those people who goes when I can and not when I have to, and I have a certain reputation amongst my friends as having a smaller than average bladder capacity.  Over the last few years, and like many people who suffer from multiple sclerosis, I've noticed some changes... sometimes, my bladder doesn't seem to empty properly when I visit the toilet, and I find myself needing to go back for another visit almost immediately; I experience something of a 'rush bladder' too: this is where you get a sudden, pressing urge to pee and have to stop whatever you're doing and try to get to a toilet as quickly as you can before you have an accident.  Sometimes, at times like these, there can be a little leakage too; I sometimes also need to get up several times during the night. It's not terribly by any means, but it can be a bit awkward and sometimes a little bit embarrassing.

I did see a nurse about this for a bit, but other than trying to discipline myself to only go to the toilet when I really, really needed to go, there didn't seem much point in doing anything else.  I definitely don't want to go onto medication, and to be frank, nothing I was experiencing was really serious enough to pursue any further.

All these things are very common in people with multiple sclerosis.  If you look at the spectrum of possible symptoms (and, frankly, I try not to), then you'll see that bladder problems are very common -- according to the MS Trust, they will affect up to 75 MS patients out of 100. Self-catheterisation might not be something you care to think about, but for lots of people, this is a practical way of managing an issue that might otherwise dominate your life.

I mention all this because this has started happening to me.  Beyond the frequent need to get up in the night and pee, I actually woke up in the small hours of Sunday morning, made a trip to the bathroom and came back to find that I'd actually already wet the bed.  At first I didn't believe that this could have happened - why on earth did I go to the bathroom and pee if I'd already emptied my bladder? Surely that must be something else, right?  Sweat, maybe? Then I was just shocked and embarrassed. What else could it be? My wife was absolutely brilliant and rushed to reassure me and to get things straightened out... but I have to tell you, dear reader, I was appalled and distressed.  We'd been out at a friend's house for a party, but I'd had a couple of beers and a couple of glasses of wine all night... nothing out of the ordinary for a weekend and nothing much for several hours.  Why was this happening to me now?  Why did it happen at all?  I have a bit of a cold and a nasty cough at the moment and spent about 18 hours of the following day asleep in bed: perhaps that was a trigger?  I honestly don't know.

I'm a rational man, and my brain is telling me that, although this might not be a one-off, I really shouldn't start worrying about this until it become a more regular occurrence in my life.  And if it does start happening more often, then I have the support network in place and access to great medical care so that I can do something about it...... but I have to tell you that I'm now living slightly on edge in case it does happen again.  What about when I'm staying round at someone else's house? I've made some practical purchases, but really... I'm 42 years old and this really wasn't where I hoped I'd be at this stage in my life.  Should I stop drinking caffeine and alcohol or what? Are espresso martinis now a thing of the past for me?

Why am I telling you this?  Well, because I think it's important that we talk about these things. If I'm happy enough to trumpet to you about my wonderful achievements running with MS, then I think it's probably only fair that I'm also realistic about the other ways that my multiple sclerosis is affecting me.  It might feel a bit embarrassing, but there's really nothing to be ashamed of here.

Life can certainly throw a lot of shit in your direction, but it only beats you if you let it.

We will endure.


  1. oof - sorry, have only just picked up on this (and only then because i saw it on the MS Trust facebook page) - i have my own ongoing bladder-related battles so, again, this is nothing so much as me saying you're not alone in this AT ALL.

    i went through a bit of bladder retraining and it has helped (it hasn't completely got rid of my issues but that probably has more to do with my own weak will-power) but filling out a dreaded voiding chart was the most helpful thing for me - basically measuring everything in and out (it appealed to my gross nature).

    it spends so little time inside my body that i sometimes think i should pour coffee straight down the toilet and eliminate the middle-man!

  2. It's on the MS Trust facebook page? *dashes to look and then read it again by clicking on their link.*
    I was mortified, but felt a weird kind of compulsion to write about it. Why should this be a dirty little secret. I wish it hadn't happened, but as Gandalf said: "so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us".

  3. 'Life can certainly throw a lot of shit in your direction, but it only beats you if you let it.'

    Great article btw, and yes variations on that theme have happened to me. Not yet at the self-catheterising /botox injection stage yet, but I'm sure it will come, whether I want it to or not. Willpower and trying to beat it' will make fuck-all difference. Bit like saying a positive attitude helps to 'fight cancer'. It doesn't.

    1. you know that I'm talking about attitude and approach and not just about disease progression, right?

    2. OK, perhaps that was a little brusque, but this is something that I feel strongly about! Life in its various forms, can and sometimes does 'beat' any individual, regardless of his/her attitude or approach. Like you, I'm stoical about MS. But that's my nature. I equated your quote with the evangelical 'I've got MS but it hasn't got me' badge of martyrdom. Was I wrong?

      You may counter by saying that it's up to any person to decide how he/she is going to deal with a serious illness. Absolutely. But people will either get better from their condition with or without treatment etc. or they won't. Martial terms are inappropriate, especially if the 'battle' is lost. When it's clear that things aren't going well, there's enough to contend with and feeling that if only he/she had 'fought' that little bit harder, the 'battle' would have been 'won', is helpful neither to the person (guilt-ridden) or the family.

      Yep, with you 100% on the disease progression front. Glad we agree on something!

    3. I think we're broadly in agreement, actually. I'm a firm believer that you should worry about the things you can control. I can't control my MS in any meaningful way or choose how it affects me, but I can choose my attitude. Easy for me to say with my symptoms, some might say, but I hope that will remain true whatever. You're right: my attitude won't affect my disease progression, but you don't have to be a victim, do you? I can't abide pity parties. Do what you can within whatever limits you have.

  4. Thank you so much for your frank and honest description of how MS has affected your bladder control. My husband and I both have MS and experience bladder problems. I use a combination of drugs to help my symptoms, my husband does ISC.
    It is amazing how differently people respond to this problem. Most friends and family gloss over "wetting occasions" but we have also experienced hostile reactions in the past.
    This symptom is the most embarrassing one of our "visible" symptoms and hopefully by openly talking about it, more people will be aware that it is a common MS symptom and be more understanding towards the MS sufferer. No-one asks to have MS after all ....