blood on the tracks...

TRIGGER WARNING: if you’re squeamish, you might want to sit this one out.

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I’ve been intermittently self-catheterising for a few years now. For those not in the know, this is where you take a lubricated, 40cm long plastic tube and insert it into your urethra until it reaches your bladder, at which point your bladder drains. Why do I do this? Well, one of my least favourite things about multiple sclerosis is that the nerve damage it causes has affected the wiring between my brain and my bladder. What this means for me is that my brain tells me that I need to pee much more often than I actually do need to pee, but also means that my bladder doesn’t completely empty when I do pee. This is a pretty toxic combination, because retained urine can cause infection and also because it means that you can’t trust the signals from your brain telling you that you need to pee. Annoyingly, on top of this, I also get sudden bladder urgency, where I will go from not needing to pee at all, to desperately needing to go in the space of about 60 seconds. 

Annoying, right? 

Well, one solution to this is self-catheterisation. If you catheterise, you are absolutely guaranteeing that you have completely emptied your bladder. This means both that there is no unpleasant retained urine, but also you can know for a fact that any signal from your brain that you need to pee is a false flag. 

It might not sound ideal to be shoving a really-quite-long tube down what was previously a strictly one-way deal, but it’s amazing what you can get used to if you have to. 

Now, sticking that tube down isn’t actually that big a deal: it’s lubricated and there aren’t too many nerves down there to mean that you feel anything. You feel a little bit of resistance as you push through the prostate, but if you persevere then you’re pretty much there. You do need to be slightly careful to make sure that your hands are clean and that you keep the risk of infection as low as possible, but that’s not too much bother. I initially only did this once a day, just before bed. Just recently, I’ve started doing it a little more often than that, but it’s not really a big deal and it’s worth it just to be comfortable. The catheters are supplied to me free of charge, to my door by the NHS and it’s all good. 

Well. Until it’s not. 

On Wednesday this week, I decided I would cath before heading out to a choir practice. I felt a little bit of resistance a little higher than usual, but I was in a bit of a rush, so I just pressed on, pushing until I had reached and drained my bladder. As I pulled the catheter out, I caught sight of a tiny drop of blood flicking into the toilet, but I didn’t really think much more of it. By the time I got home a few hours later, there was blood inside my pants. 

Yes, it is a little alarming to be bleeding from the tip of your penis. The next morning, when I peed, my stream was a deep, bloody colour with a few clots before running clear. Nice, huh? I was pretty sure that all I’d done was to scrape my urethra and that it likely wasn’t all that serious… but even so, right? I rang the continence clinic before guiding my friend Alan on a 4.5 mile run, and they told me to head to the hospital. I completed my run, did a couple of hours of work and then headed into City Hospital, where they were expecting me on one of the wards. 

As has almost entirely been my experience of the NHS, all the staff were fantastic. I had to wait around for a bit, watching with a terrible interest as the doctor explained to the nice old gentleman at the bed opposite that the bladder normally has a capacity of about 1.5l before it starts to be in danger of bursting, and that they had just drained over 2l from his… 

It turned out that the doctors were more concerned about the dangers of me possibly retaining urine than they were about the bleeding. Had I catheterised since I’d started bleeding? Well, no. I was peeing normally. Bloody, but otherwise normal. I wasn’t in a hurry to shove another catheter down there until I knew that I wouldn’t be causing any further damage. After a consultation with the registrar, I was offered a catheter – something that I would have to wear, full-time, for the next two weeks. Not my 40cm tubes, but the whole nine yards with bags and everything. This would give my urethra a chance to heal whilst making sure that I wasn’t retaining any urine that might cause infection. 

Look, if I felt it was necessary, I would have worn the catheter. Hell, the day may come when I can’t avoid one… but I didn’t feel that this was the time. I catheterise mostly because I don’t want to be going to the toilet every half hour, not because I am in serious medical danger of an infection. Not yet, anyway. I have the luxury of being able to choose whether I catheterise or not; I find it helpful, but I don’t think it’s a medical necessity for me. I gently pushed the doctor back, and after consulting with his registrar, he agreed to let me go if I self-catheterised successfully before leaving the ward. Reassured that it was likely to be okay to do so and that I wasn’t about to reopen my wound and start bleeding profusely again, I happily did that and then we all agreed I could go home. On the way out, I poked my head around the door of the staff room to thank my doctor, who had been lovely throughout. It was a pretty small room, and it was filled by about six junior doctors (including mine) with their heads buried in textbooks, cramming for their exams. Sheesh. Who’d want to be a doctor? 

Thirty-six hours after the initial incident, I’d stopped bleeding and everything seemed to be back to normal, which I will admit is something of a relief. However, I have learned (or been reminded) of few important things:

 - The NHS is an amazing and precious thing. It was there when I needed it and helped me without question or charge. The staff are hard-pressed, under-rewarded and yet somehow (on the whole) manage to retain their grace

 - It’s amazing what you can get used to. A younger me would find the idea of self-catheterising awful, never mind the idea that I might one day find myself to be oddly calm and rational about finding blood in my pants (or that I might also have a wife who was equally calm and reassuring at the sight of the same. Although, to be honest, younger me might just be astonished that I have a wife at all. Does that mean I’m maybe having me some sex too?)

- If you find yourself self-catheterising and you encounter some resistance (above and beyond what you’d expect from your prostate), don’t push! 

The tl/dr version of this is that self-catheterising can be scary but it's really good.

I wasn't going to blog about this, but Steve had someone comment on an old post of his about self-catheterisation just the other day, and it occurred to me that this sort of information might be useful to someone in the future. There's a lot of unhelpful and often just plain negative stuff about MS online, which is one of the reasons why I've been determined to be honest but up-beat in the first place. If you have stumbled across this, I hope you found it useful and not frightening. MS can be a lot to take in, but I'm pretty sure you've got this. Feel free to drop me a line if you want to discuss anything I've talked about here. 

I mean, clearly, I have no boundaries.

can't trace time...

Over the last couple of years, my MS has been steadily getting worse.

Every time I sit down to write about this, I always seems to fall into a kind of relentless optimism. Perhaps this is a defence mechanism, but I think it's actually how I feel most of the time. As I've said many times before, I honestly don't see the point in wasting my time and my emotional energy railing against something that I'm not going to be able to change. It is what it is. No one knows where this is going, and sitting down and crying about it simply isn't going to achieve anything.

Of course, that's not to say that I sometimes don't feel like crying about it...

On my last visit to the neurologist, I was told that I was a shining example of acceptance of my diagnosis. I think this is because I acknowledge that I have multiple sclerosis and that my disease is progressing, but I try not to let this get in the way of going about my business the best I can.

I suppose this is best illustrated in my running. I ran a bit before my diagnosis, but for whatever reason, started taking it a lot more seriously afterwards. I've run six marathons and countless other events since. My MS has weakened my left side and my left ankle is slowly losing its flexibility. This makes running harder, but thanks to the support of my MS team, I have been able to keep running using a series of different strategies, insoles and orthotic devices. The most recent of these is a pretty snazzy piece of kit that adds some spring-back into my ankle and seems to have stopped me from falling over.

Before this, I was falling over so often whilst running that I was beginning to cause myself some real damage. This brace works well enough that I've been able to go out running without wearing the wrist guards and kneepads.

 Even so, I'm basically fighting a losing battle. 

A consulant surgeon who specialises in sport (and who is a runner himself) told me about ten years ago that it probably wouldn't be my MS that ultimately stopped me from running; it was likely to be as a result of some of the compromises my body was being forced to make to compensate for weakness elsewhere. It seems that is likely to be the case for me. As well as the creeping stiffness in my ankle and the muscles of my leg, I'm told that the weakness in my left hip now means that my running gait has changed. Apparently, instead of driving my left leg through my running stride normally, I now "throw" it in front of myself because I lack the fine muscle control required. 

Running is hard and has got a lot harder over the last couple of years. My last marathon was in April 2019, and it now feels unrealistic to think that I could put my body through that kind of a distance, never mind the hundreds of miles of training. Perhaps more importantly, I'm not sure I have the kind of determination you need. Instead, I've found a joy in just being out and running at all. I can't run as far or as fast as I did before. Usually, at this time of the year, I'd be out with my club taking part in a local series of cross country runs. I've never been very quick, but they're very inclusive events and they are a lot of fun to run. There's a certain joy, I've discovered, in the mud and the hills. This year, I've sat them out. I just don't think it's realistic to put my body through that kind of stress and I'm just not confident that I'm strong enough to pick up my left leg over that kind of terrain for a 10km race.

All these things make me feel a bit sad, but I'm also determined to continue to focus on what I can do, rather than to dwell too much on the things I might have lost. 

I suppose this is what my neurologist means by acceptance.

He also told me that my MS progression was quite unusual: it is not at all normal for patients this far after their diagnosis to be as fit and healthy as I am (my first symptoms were in 2005 and my diagnosis was in 2009). This is obviously good, but it's also a bit depressing. Yes, I've been lucky, but I suddenly have a real sense that the sand is running out of my timer.

Over the last two years, my condition has progressed. I haven't really developed any new symptoms, but the symptoms I do have are getting worse and are affecting me much more in my daily life. I take drugs to help manage my bladder urges and I self-catheterise every night. I also take muscle relaxants to try and control the muscle spasms in my legs that have woken me up at night for a little while, but are now starting to affect the way that I walk and even make it hard for me to sit still in the evening. I walk stiffly and can feel that I swing my legs from the hip as I walk because I tire easily and don't have the strength to drive them through normally. I wouldn't be all that surprised if I needed to walk with a stick at some point in the relatively near future (I actually find walking a lot harder than running).

I am relentlessly positive about these changes, but that doesn't mean that they aren't on my mind. I am really disciplined about not allowing myself to wallow in where this journey might end. No one knows the answer to that one, whether they have MS or not. But.... it does make me a little bit sad.

I reckon I'm pretty strong and resilient, on the whole and maybe I am a shining example of disease acceptance...but these changes are still a lot to take in. 

Well, I'm doing my best.

be brave...

For as long as I can remember, I’ve been called cynical. Cynical, negative and pessimistic. For a time, I was called it so often that I almost believed it myself and began to build my sense of self around it. 

The cynic. 

To be honest, I’m not sure that this has ever really been the case. It certainly is true that, as a younger man, I would throw stones and would criticise without feeling the need to offer up anything constructive. I’m pretty sure I’m not alone in going through that phase. It’s also true that, when feeling frustrated or powerless at work (annoyingly often), I would sometimes deliberately seek to tear people down in a way that was ultimately self-destructive…. But I was young and stupid and I don’t work there anymore (which is probably just as well: some people choose never to forget the person you were fifteen years ago, even if you’ve long since changed). 

I think it probably boils down to this: I like to ask questions. These days, it’s usually to genuinely try to understand something because I’m curious. The problem is that lots of people don’t like to be asked questions; they don’t like to be challenged by someone because, if you don’t know the answers or you aren’t very secure in your opinion, it can feel as though you’re being criticised. No one likes to be criticised, right? I try not to be threatening about it, but nobody’s perfect and I’m probably not the finished article even now. 

I think my MS has changed me, actually. Or maybe it’s just revealed another side to my personality. Nobody knows what causes MS, nobody knows if it will progress for me or what my outcome will be. There’s very little that I can do to change any of these things. I’m not really one for serenity prayers, but I do think that this has taught me acceptance. To paraphrase Kipling, to meet with Triumph and Disaster and to treat those two imposters just the same. I’m calmer, more relaxed and better able to approach life on an even-keel (whilst also remaining perfectly capable of frothing in indignation watching the news. Nobody is perfect. My wife is doubtless scoffing as she reads this). 

What’s the point in being pessimistic? I’m well aware what MS might do to me and I know all too well what it’s already done. I simply don’t see how dwelling on either of those things does me any good at all. MS pages on Facebook seem full of people wrapped up in their own invisible pain and suffering. I don’t doubt that they suffer, but I simply don’t understand the attitude because I try never to allow myself to think like that. Perhaps that’s easy for me to say, but I hope it’s a philosophy that will stay with me, whatever happens. “The Road not Taken” by Robert Frost is one of my favourite poems; my interpretation of it is that you should never waste time regretting the path you didn’t take. 

They say that a pessimist is never disappointed. I think they’re always disappointed. Besides, I’m a runner, and as Kipling also said:

If you can fill the unforgiving minute 
With sixty seconds’ worth of distance run, 
Yours is the Earth and everything that’s in it, 
And—which is more—you’ll be a Man, my son! 

Well, I can definitely do that. Maybe not as fast as I use to be able to do it… but I can still do it.

slow down...

Let's not make any bones about it: I've been lucky with my MS.

Sure, I have some problems: numbness, pins & needles, muscle weakness and wastage, spasms, bladder issues, fatigue... but when it comes right down to it, I've run 6 marathons since I was diagnosed in 2009 and I still go out running 5 or 6 times a week. In the grand scheme of things, my problems are small.

Just recently though, things have been getting a bit worse and are really starting to affect my running. I was warned years ago that this day might be coming: a consultant specialising in sports medicine told me nearly ten years ago that it probably wouldn't be my MS that stopped me running directly, but it would probably be something caused by my MS. This doctor was a runner too, and he'd recently had to stop running because of back surgery, so he was quick to spot how important running was to me and quick to realise how critical it was to keep me on the road. He understood. To be fair, he also said that I would probably never run more than 10km again, so he clearly didn't know everything.

Perhaps he was just a few years early with his prediction.

I've been steadily losing flexibility in my left ankle for a while now but it's become quite stiff over the last couple of months and the achilles is very tender; I've had stiffness and numbness in my legs almost since the very beginning, but it's now taking me a mile or two to shake it off and get into my running stride; the muscle loss in my left side has been apparent for a while now, but I'm now getting niggles across my core and on my right side as my body tried to compensate.

I ran four marathons between April 2018 and April 2019. I'm still running around 25 miles per week and have run just short of 1000 miles in the calendar year to date. It feels ridiculous to complain because I've sat in enough MS clinics to know what this disease can do and how lucky I've been.

... but still, it is upsetting. I was hoping to run another marathon in spring 2020, but at the moment, even a half marathon feels like a bit of a stretch goal. We're almost exactly 12 months since I ran a half marathon PB (at Tissington) and a marathon PB (at Chester) in successive weeks.  It feels so frustrating to find my mileage restricted by a failing body.

Still, although it's frustrating, I hope I'm wise enough to realise that slowing down a little isn't the end of the world (even if it might feel like it is). That doctor was right: running 10km slowly is a lot better than not running at all.

Dangnabbit.

A runner just wants to run.

he just stares at the world, planning his vengeance....

Within my own personal social media echo-chamber, I follow a number of MS-related pages and blogs: some of the main charities, but also a few interesting individuals too (hi Steve!). At their best, they are an excellent way to keep up to speed with the latest news and developments,  but they're also a good way of getting some basic, nuts-and-bolts factual information about multiple sclerosis. Of course, as with any other form of social media, you have to wade through huge amounts of memes and other unsubstantiated nonsense from the great unwashed to get to the good stuff.  If you haven't got a finely tuned bullshit filter up and running by now, then you should probably just stay well away from the internet for your own safety.  Still, if you do have the patience and a modicum of critical appreciation, then you can pretty quickly find the nuggets of gold of helpful information and a support network of organisations and individuals ready and willing to offer you support. If you know what you're looking for, then you really don't have to go through this alone. This is one of the things that the MS Trust is fantastic at... providing unbiased information and support to people with MS or going through the process of diagnosis.

There is an awful lot of old toss out there, though.  My own personal bugbear are the pity parties, the people who use these forums as a way of wallowing in their own world of personal pain. There's one guy on the MS Trust pages who posts a different "no one understands my suffering so don't judge what you don't understand" memes every single day. Every. Single. Day.  He must have a folder on his desktop where he saves them down when he finds them from his google alerts so he can quickly publish them every morning. I suppose he's looking for validation and a bit of human engagement, and he gets it in spades.  Every post is re-shared and filled with comments from people saying "so true, so true".  Look.  I get it, I really do.  MS is one of those conditions where people can get isolated and where increasing levels of disability must make the temptation to mourn what you've lost impossible to resist. It's also easy for me to judge when I'm able to run marathons.

But that's the thing, isn't it? I can run marathons, but that doesn't mean that I haven't suffered as a result of my multiple sclerosis. I ran before my symptoms and diagnosis, but I had only done one or two half marathons. I had no idea that running was going to form such a central pillar to my life, nor that my body was going to be robust enough to stand finishing 6 marathons (to date), including one that dipped under the 4 hour mark. These things seemed impossible to me before my diagnosis, but that diagnosis somehow gave me a strength and determination to try these things and not just to lie down and be beaten.  I'd like to think that, even if I couldn't run marathons, or if something happens that means I can no longer run that far, then I'll find something else to focus on instead. 

Starting with parkrun, I've discovered a joy in volunteering. Now, as well as happily volunteering most Saturdays, I also give up my time to coach as Couch to 5k programme at my running club, and when the first batch graduated, I started coaching an Improvers group too. I've got enormous satisfaction from watching these guys go from C25k to pulling on their club vests and racing 10km races for their club.  My point is that something made these guys get up off the couch and to start running. If they're anything like me, they have a little voice in their head that is constantly questioning what the hell they think they're doing running around a track with all these excellent runners; that they don't belong and that they look ridiculous. Like me, they've faced that fear and done it anyway, and now there's no stopping them. It would have been a lot easier to stay on the sofa and say that they couldn't possibly ever do these things, but instead they've taken the harder path and faced down their fears. 

MS is similar, at least in my experience.  Sure, not everyone is going to be able to run, but there's always going to be something else you can do to stop yourself wallowing in your own suffering.  Or, even worse, projecting that suffering at other people.

The other day, someone on the MS Trust Facebook page published a link to a story on the BBC website about someone with MS who completed an Ironman triathlon.

Conor Devine - the Ironman with MS

Here's the comment she put up to accompany the link:

"This is fab for him, but makes me angry. I am just going to sit here and try really really hard to overcome optical neuritis or trigeminal neuralgia for all of us. I am so pleased he can do this, but I (we) can not go out and improve our mobility more than we can. This implies to the world that we could be well if only we tried. Pleased for all of you who can do any degree of activity to keep you fit, some can’t. If it had just said that"

Someone else felt the need to add, 'Great now the dwp will think we can all do this'

Now, the BBC could definitely have done a better job in that piece of making it clear that MS has a variety of possible outcomes, and that completing an Ironman probably puts you at one extreme end of the scale.... but I find it so difficult to stomach the wilful tunnel vision displayed by this kind of attitude, an apparent inability to share in someone else's successes and a determination to wallow in their own limitations.  I once received a comment (here or elsewhere) from someone else with MS saying something along the lines of "There's always someone like you, climbing a mountain or running a marathon when I can't even run for the bus". Why can't we just revel in these successes? Where's your generosity of spirit?  Someone else's success doesn't reflect on your own failures, does it? Why try to limit your expectations to a world of what you can't do and not think upwards towards what you might be able to achieve instead?

It's a cliche, but you really don't know what you might be able to achieve until you try. Sure, you might not be climbing a mountain or running a marathon, but who knows what you might be able to achieve instead?

I'm doing my training with Guide Dogs tomorrow, so I'm about to embark on another chapter in my volunteering. It would be a lot easier to do nothing and to stay at home instead, worrying about the progression of my MS and how no-one understands my invisible pain, but I'm trying to do something useful with my life instead.

I'm not dead yet.