marching on...

Long time readers will likely know a couple of things about me:

1) I like to run

2) I have been very lucky with my MS to be able to continue running.

I try not to take it for granted. I actually only really began taking my running seriously after my diagnosis. I think there was something in my head that made me more determined than ever to stay active. Multiple sclerosis is not something that I can really control; I can't change the way that my legs feel or the other ways that the condition is affecting me, but I do have some degree of control over my own determination to get out and to exercise. 

My first marathon was in 2015, and I've run six in total. My high watermark of this madness was between April 2018 and April 2019. In that time, I ran four marathons. At the beginning of October 2018, I ran the Chester marathon in a time of 3:58... that was a PB of something like 22 minutes. My last marathon was a glorious day spent accompanying my wife to a personal best at the Vienna marathon in April 2019. We got married in the city in 2007 and have some wonderful friends there, so it was a joy from start to finish. I haven't retired from running marathons and half intended to get one booked for 2020, but.... well, lockdown happened.

Actually, more than lockdown happened. MS seems to have taken more of a grip on me over the last few months. Since my symptoms first appeared in 2005, I've always had a certain level of loss of sensation/pins and needles in my legs and feet. It does feel weird to run on legs like that, but it's amazing what the brain gets used to. Over the years, I've increasingly had problems with cramp in my legs. Initially this was in my calves, but it's slowly spread so that I was getting muscle spasms in my thighs. There's also a fair amount of stiffness. I've been accustomed to staggering around a bit like an old man when I've been sitting at my desk for a while, but now this seems to be happening more and more often. After resisting for many years, I now take a very small dose of baclofen (a muscle relaxant) before I go to bed. I may need to start taking a higher dose soon.

I'm falling over a lot more too. The loss of flexibility in my left ankle and strength in my left side has always made me a bit prone to this. I drop my left side as I get tired and start scuffing my left foot, which leads to stumbles. This is happening more and more often, meaning that I now go out running wearing knee and wrist guards (my knees have taken a frightful pounding from this and are now sore most of the time). 

I could stop running, but I don't want to. In fact, although I might be running more slowly at the moment, I'm actually doing more miles in lockdown than I think I've ever done before. I managed about 1220 miles in 2019 and I've done 1382 so far this year with 7 weeks still to go. I'll probably go comfortably over 1500 miles for the year. I'm still capable of running more quickly, but my default pace now seems to be a rather sorry plod because I don't really trust my legs any more.

I'm not telling you any of this looking for sympathy. It's just that I'm starting to acknowledge something that I've tried to ignore for more than a decade now: my MS is progressing. The official shift in my diagnosis from relapsing-remitting to secondary progressive a few weeks ago was recognition of that simple fact.

My own sense of self and wellbeing is bound up in my ability to run. For better or for worse. I'm going to keep running. Of course I'm going to keep running. I'm just slowly starting the process of coming to terms with the fact that I'm not bulletproof and that I can't control the progress of this godawful condition.

 You adapt, though. What other choice do you have? I'll always have that 3:58 marathon, eh?

you are the unforecasted storm...

As an addendum to the post below, I received a letter the other day from the neurologist. Apparently, my November 2019 MRI scan shows no evidence of new disease activity.

This is clearly excellent news.

From the very beginning, my MS hasn't seemed to follow the usual patterns. Although I have technically been diagnosed with relapsing-remitting multiple sclerosis, where patterns of disease activity are followed by periods of remission and partial recovery, my MS has always behaved a bit differently. Most of my initial symptoms can be traced to a single lesion in my cervical spinal cord, but I haven't had a clear relapse since that first one and I don't seem to have developed any new lesions (the scarring on the brain or spinal cord left by the inflammation). That said, although I haven't developed any radically new symptoms, I have seen a general (albeit fluctuating) worsening of the ones that I do have. Relatively speaking, compared to others, I'm doing great... but the disease has changed my life. As well as the muscular symptoms of weakness, numbness and pins & needles, I also now take a pill to manage bladder urge and self-cathertise every night to ensure that my bladder is completely empty before I go to bed (I'm also careful of the volume of what I drink after about 20:30 at night. No more last orders at the bar for me). These things are different from what they were when I first developed symptoms in 2005. I may not have visible signs of disease activity in my MRI scan, but you can now see them in the way that I walk.

I think what this shows us is how complex a condition multiple sclerosis is; how it's an umbrella term for a massively varying set of symptoms and presentations. It's a handy label to put on people, but every single person seems to experience the disease differently. It's amazing how much the doctors and specialists do know, but equally very clear how much they don't know too.

I'm doing well. There's no sign of new disease activity in spite of the fact that I've now been off all medications relating to my MS for a couple of years now. It was a risk to stop injecting the drug that may (or may not) have been slowing my disease progression, but for the time being, it seems to be a risk that has paid off.

Long may it continue.

In the 43 days of 2020 so far, I've run 155 miles. I don't have much to complain about.

wet...

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.

almost so clear...

Dear Mr. Swisslet

This is to update you regarding the MRI you had recently [recently? the beginning of September...but do go on].  It did show low volume of white matter lesions which is consistent with a very mild form of multiple sclerosis you have.  The MRI of the brain and of the spinal cord has been reassuring.

We will meet in the clinic as planned [at the end of next year] but do let me know if you have any new issues.

Yours sincerely

Dicated and signed to avoid delay

[to avoid delay? are you kidding me?]

---

That's pretty good news in neurology speak, I think.  Don't you?  (I think it also suggests that they never did find those comparison scans from 2005, but that's okay).

I clearly have no excuses for not running faster that I am currently, eh?

bang bang

late night mood lighting in the MRI unit

I had an MRI scan yesterday. There’s much debate about whether or not our NHS provides 24x7 cover (in my experience, it’s always been there when I’ve needed it), but I will admit to being a little surprised about having my appointment for a brain and cervical spinal cord MRI scan appointment come through for 20:10 on a Wednesday evening. I was half-expecting to get there and to find that it has been a mistake… but no, they were there and they were running ahead of schedule, so I was scanned almost as soon as I arrived. They’re busy doing appointments until 21:30, at which point they’re on call for any emergency scans that come up.

Anyway. I haven’t actually had an MRI scan since I first started displaying the early symptoms of my MS in 2005. The scans revealed one lesion (or sclerosis) in my neck, but it wasn’t clear if there were any more in my brain or elsewhere in my central nervous system. As I’m sure you’ll have worked out by now, to be clinically diagnosed as having multiple sclerosis, you need to have evidence of more than one sclerosis… and in the end, it was another 4 years before I got my definitive diagnosis as a result of a lumbar puncture and the protein banding in my spinal fluid.

I saw my MS nurse a few months ago when we needed to discuss a change in my medication. She asked me when I was last scanned, and was appalled at the answer. Just because I was doing so well, she told me, didn’t mean that my consultants shouldn’t take the trouble to look inside to see what might be going on. She sent me home with a flea in my ear to make sure I brought it up with my consultant next time I was in clinic. As it happened, I didn’t need to mention it because my consultant mentioned it to me. I’ve been injecting a disease modifying drug for 7 years now, and in that time my MS has barely progressed (by the standard measure of relapses, anyway). He wanted to do a scan to see if there was anything new to look at, otherwise he was going to recommend that they take me off the drugs. Well, I’m in two minds about that: I started injecting because, although doing nothing was a perfectly valid choice, I would far rather be doing something (that might do nothing), than to do nothing (which would definitely do nothing). I’ll be happy to stop injecting from a physical point of view, but at the same time, I’m a touch nervous that maybe, just maybe, it’s the injections that have kept me in such good condition ... it’s a tough one.

When I was scanned in 2005, it was at the MRI scanning unit of a private hospital – I was covered by health insurance at work, and before my diagnosis, all my consultations with the neurologist took place here. After diagnosis, I saw the same consultant under the NHS…. because the NHS is brilliant like that. This time around, I was scanned at the Queens Medical Centre: a real maze of a place where you can go into the building on one floor, and pop out on a different level without having taken any stairs. It’s massive, but I still think it’s a bit like the TARDIS. At the private clinic, I was told that I could bring a CD, and they piped soothing music as I was scanned. At QMC, they gave me earplugs and told me it was going to be noisy.

CLANK! CLANK! CLANK! CLANK! CLANK! CLANK!
BANG……BANG…..BANG…..BANG…..
WOOOOOOOO! WOOOOOOOO! WOOOOOOOO!
CLANK! CLANK! CLANK! CLANK! CLANK! CLANK!
(seriously... check it out)

…even so, it was reasonably late in the day and I’d had a full day at work and a run before heading to the hospital, so I found myself gently nodding off, in spite of the noise. Well, except for….
“Are you alright in there? I’m going to start scanning your spine now”
Every couple of minutes.
Oh well. Bless her, she was lovely. Not British, Brexiteers might like to note, but skilled and prepared to work long hours late into the evening to get scans like this done with less than a 4 week wait between consultation with neurologist and appointment.
Results in a couple of weeks. It will be good to know what’s going on in there.

I’ve actually been having a bit of visual disturbance recently. It’s a very common presenting symptom of MS, and I’ve had some problems with the dilation in my right pupil for a while now, but it’s definitely a bit off at the moment. I’ve been putting off an appointment with the optician for a little while now, because there’s quite a large part of me that doesn’t want to know if there is an issue and if I might need glasses again or whatever. Today I just got over that and made an appointment.

top marks for not trying....

Running is an intensely physical exercise, but so much of it is in your head.  I swear that as much of the battle is mental as it is physical.  I caught myself procrastinating at work this evening: I'd done everything that I needed to get done, and I was just faffing about doing nothing in particular.  Part of the reason was because I'd cycled to work and it was pouring with rain, but mostly it was because I'd promised myself that I would go out for a run before dinner and I was just putting it off.  As is well known, at least by my running buddies, once I've decided to exercise, there's basically nothing that is going to come between me and getting it done.  Not weather, not illness, not fatigue....nothing.  But that doesn't stop me putting it off for a while.  I'll go, but I'm not above finding other things to do first.  I'm frequently at the pool late because I've wasted a couple of hours not swimming in the office, and I spent two hours pottering about the house in my running kit the other weekend - it was raining and I was tired. Then I realised that if I'd just gone, then I'd be back by now, so I put my trainers on and went out the door.

This evening's run turned out to be quite pleasant.  Yes, it was pissing with rain, but I was listening "Build a Rocket Boys!" by Elbow and was running at a reasonably comfortable pace.  After a day cooped up in the office, it's nice to have a bit of alone time, listening to nothing but a decent album and the sounds of your own body.  Even as I was running though, I realised again how much I live within a little bubble as I run.  Technology means that I now know basically how long every single one of my runs is, how far I've travelled and how far I've still got to go.  I almost never look at it when I'm running because I'm entirely focused on much nearer targets: the end of the next song or the next 200m to another point slightly in front of me.  I find that if I allow my mind to start to wander into how far I've still got to go, or if I set the imaginary marking point slightly too far ahead, then my mind slips towards despair and I start to think about the futility of the whole thing and how much everything hurts.

Tonight, I felt pretty tired, and this week's injection seems to have bruised deep into the muscle of my left thigh, which complained with every stride.  My shoulders feel tired and my body is crying out for the day off that I'm going to allow it tomorrow night (well, apart from cycling to work, obviously).  I ran about 4.5 miles in total, but I never thought more than about 400m ahead, because I know that if I did, I would almost certainly slow down and would psychologically just feel worse.

I used to be crap at running at school.  I'm not saying I'm good at it now, but I was really shit at school. I used to loathe the cross-country runs we were forced to do every week, and I always used to finish towards the back.  Looking back, I think I know why: it's because I was always mindful of how far I had to go, and as a result I was always concerned to run within myself.  Some people can run fast with apparently no concern for conserving energy; they just want to see how far and how fast they can go.  If you take that approach, you might just push yourself hard enough to really surprise yourself with what you achieve.  If you take the other approach, and always hold something back, then you'll never surprise yourself.

I haven't changed that much, and I'm sure that my instinct in most things is still to hold things back.... but when it comes to running, I've become wise to the way my brain works and I've learned to trick it.  Don't tell yourself that the finish is several miles away, because you'll start to retreat backwards into yourself.  Instead, never allow yourself more than a few metres ahead.  You'll have to be disciplined about this, because the brain will keep trying to break free and race ahead... but if you work hard at it, you might just be able to fool yourself into running further and faster than you might otherwise have thought possible, no matter how crappy you feel.

Seems to work for me, anyway.  Luckily my brain seems to be suitable gullible to keep falling for this reliably on a regular basis.

do you see what I see?

One of the most common presenting symptoms of multiple sclerosis is optic neuritis. To quote wikipedia:

"Major symptoms are sudden loss of vision (partial or complete), or sudden blurred or "foggy" vision, and pain on movement of the affected eye. Many patients with optic neuritis may lose some of their color vision in the affected eye, with colors appearing subtly washed out compared to the other eye. A study found that 92.2% of patients experienced pain, which actually preceded the visual loss in 39.5% of cases"

Apparently, up to 50% of patients with MS will develop an episode of optic neuritis, and 20-30% of the time optic neuritis is the presenting sign of MS. As I know all too well, MS can somewhat slippery to diagnose at the best of times. Compared to symptoms as generalised and hard to nail down as numbness and pins & needles, it's really not too hard to understand why a sudden disturbance in your vision might be the thing that really scares someone off to their doctor and onwards to their neurologist.

...unless, of course, you've recently had your eyes cracked open and had corrective lens implants clipped onto the front of your irises..... in which case a blurring of your vision may not automatically have you reaching for your neurologist's phone number.

Since I had my eyes operated on in July 2008, I would say that my eyesight has been brilliant more than 90% of the time. I only say 90% because, although I don't regret the procedure for an instant, there have been one or two little niggles. The lens in my right eye is smaller than the lens in my left. The reason for this was that I needed a rigid lens in that eye to correct an astigmatism, and the rigid lens couldn't be rolled up before insertion like the other lens, and so needed to be smaller. Because it's smaller, in some light conditions my pupil approaches the edge of the lens and I get some leakage of light. It's not too much of a big deal, and once I got used to it, my brain basically tuned it out. But it's there. My right eye also seems to react more slowly to changing light conditions, meaning that my vision becomes slightly blurred when I move from very bright conditions to dimmer conditions, and once in a while my pupil seems to get "stuck", and takes a bit longer to adjust. Again, not a very big deal.... but it's there.

I also have an obsessive personality, and once in a while, my brain finds something tiny to latch onto to the exclusion of almost everything else. In the old days, this was things like the fit of my glasses or imaginary scratches on my lenses. Nowadays, sometimes it's my new eyes. Initially I fixated on some barely perceptible hazing that occurred in my left eye, caused by skin cells on the implant that my brain - if left to its own devices - would quickly tune out. When I finally let it go, the hazing quickly disappeared. In addition, once in a while, I'll notice that the correction of my right eye is fractionally less good than the correction in my left. I'll sometimes sit for a while, alternately closing each eye and comparing what I see. Then I'll realise that I have perfect vision with both eyes together, and perfectly acceptable vision even in my 'weaker' eye, and I'll get over myself and find something else to worry about.

So, with that in mind, you might understand why, when I start to experience more regular blurring in one of my eyes, I don't immediately assume that it is the onset of optic neuritis. Over the last couple of weeks, this is exactly what has been happening: the blurring in my right eye has been getting steadily worse. Where before it only happened from time to time, now it seems to be happening more regularly, and although my vision still tends to improve in brighter light, that doesn't now seem to be always the case. I've also noticed that, when blurry, my eyesight is less blurry at the periphery of my vision than it is at the centre. Not surprisingly, I've also been getting nagging tension headaches behind my eyes too. Of course, it's possible that it's still all in my head, or that there is some kind of mechanical problem with my implant.... but I've also started to come to terms with the fact that there might also be a neurological explanation.

I really don't know how I feel about that. Let's review the possible outcomes: if it's all in my head, I may well be crazy; if it's a problem with the implant inside my eye, then it could require surgical correction (or removal)....or it could be further neurological evidence that my MS is progressing.

What kind of options are they?

Well, one way or another, I guess I'll find out more on Friday - I've got an appointment go get my eyes checked up. It's a regular appointment that was originally supposed to happen in November last year, then in July and then last Friday, when I sat in a hospital waiting room for two pointless hours for my doctor to show up..... well, what kind of service do you expect when you go private? If the appointment does nothing else, it should help start the process of elimination.

Funnily enough, since the possibility occurred to me that this might be caused by something that is totally outside of my control and nothing to do with any choices I've made or how nuts or otherwise I may be, I've found the whole thing a lot easier to deal with.

Funny things, brains.

the future's so bright....

As I went out running this evening, I found myself squinting into the evening sun as I dragged my limbs, still aching from Sunday's 9 miler, around the Embankment. Why had I decided to run without my sunglasses on? I love wearing sunglasses and I almost never go running without them. I even have a pair that I use especially for exercise. It might have gone past seven by the time I set out, but it's not winter here just yet and there's still good daylight to be had long into the evening. What was I thinking? I almost never go anywhere without sunglasses. I'm very attached to my sunglasses.

I think there are two likely reasons for this attachment. The first is that, for thirty years of my life anyway, I wore glasses. I didn't get my first pair of prescription sunglasses until I was in my late teens. If you've ever seen the prescription sunglasses on offer as the "free pair" when you buy a pair of specs, you'll know that the choices are extremely limited and the styles generally unflattering. I began to wear contact lenses with greater regularity from my mid-20s onwards, and it wasn't long before I bought myself my first pair of proper sunglasses - a pair of Oakleys from a shop in Padstow. In fact, the very same pair that I still wear when I'm out running. I was thrilled with them and wore them almost as often as I wore my contact lenses. I've been wearing sunglasses like that ever since, even more so since I had my eyes done last year. It might be old hat to all you people lucky enough to have perfect eyesight, but the thrill of having a proper pair of (relatively) stylish frames with excellent lenses was like a revelation to me. It's a thrill that's never really worn off, and even though I no longer need to wear glasses or contact lenses, it's still the freedom to wear sunglasses when I want (along with the ability to see my watch on the bedside table) that gives me the biggest kick.

The second reason? I like the feeling that people can't see my eyes. Perhaps this is another fallout of wearing glasses for so long, or perhaps just because I'm a bit shy, but I like to hide behind my sunglasses: pretty much every pair that I own are big wraparounds with pitch black lenses. I can see out, but you definitely can't see in. Part of the reason I like to wear sunglasses when I'm running is that I want to keep the pain on the inside. I don't want anyone to see my eyes lolling about in my head as I drag my sorry body around the place, and somehow I think that sunglasses make the whole process look effortless. It's a bluff, but it's a bluff that somehow makes me feel better about myself and perhaps makes me run harder. A double-bluff, perhaps. Even if the only person I'm fooling is myself, then it's still worthwhile.

I might risk looking a bit of a prat walking around on a mildly overcast day, but I not sure I care. Lest you think I'm a complete moron who wears his sunglasses ALL THE TIME, I should add that I do have limits: the sun has to at least have the potential to show it's face, otherwise the sunglasses will stay at home. Even when the sun is shining, I will always take them off when I'm indoors and usually when I'm talking to someone. I'm not one of those people. At least I like to think I'm not.... maybe I am? I don't wear sunglasses to look cool, I wear them because it's still the thrill for me that I can wear the sunglasses that I want when I want to wear them. They make me feel free. It's a small freedom, I know, but I hope I'll never get bored of it.

Regular readers here will not, I'm sure, be surprised to hear that I like to spend my time fretting about possibly invisible scratches on the lenses......

guilt by implication, by association....

A historic judgement was made the other day that could remove the fear of prosecution from people travelling abroad to help relatives seeking an assisted suicide. I've written about Debbie Purdy before. To plagiarise myself:

"Debbie Purdy was diagnosed with primary progressive MS in 1995; she can no longer walk and is gradually losing the strength in her upper body. Her condition is only going to get worse, and if/when her condition becomes unbearable, she would like her husband to accompany her to a clinic in Switerland where she can end her own life in comfort and with dignity. Her dilemma, and the reason that she is going to court, is that she would like her husband Omar to be by her side on the trip, but it is not clear in British law whether or not he would become liable for prosecution on his return to the UK for assisting in a suicide."

The Law Lords have now unanimously ruled in Purdy's favour and the Director of Public Prosecutions has been ordered to immediately draw up a policy that would spell out when prosecutions would and would not be pursued - in other words, providing people like Purdy with the clarity they need to help them make their decision.

I'm not going to get into the rights and wrongs of this case, although instinctively I feel that I agree with Matthew Parris:

"I can’t tell you how simple I find these arguments: so simple that I’ve hardly bothered to write about the issue. Suicide is the greatest of human freedoms, underwriting all the others, for it gives us the possibility of defying every thing and every one there is. The possibility of suicide is what makes life voluntary and each new day an act of will. No wonder the faith community gnash their teeth at suicide. God Himself, if He existed, would gnash His teeth at suicide: the supreme act of defiance, the final raspberry. The knowledge that I’m here by choice, that every breath I take I take by choice, injects into my soul a transcendent joy. That we can let go whenever we want is for me the deepest sort of thrill. People should be able to choose. Obviously. And if they choose the end but seek help with the means, they should be able to. Obviously. End of argument."

Parris actually goes onto say that he is opposed to legalising assisted suicide - on the grounds that this means that someone has to officially decide who can, and who cannot, die:

"It is one thing for the State to decline, at its discretion, to prosecute someone who has killed without authority. It is quite another thing for the State to issue an authority to kill. We do best, I think, to stay on that first, more limited, ground."

Interesting, but the rights and wrongs of assisted suicide are not what has caught my attention most about this whole debate. Oh no. Perhaps not surprisingly, as a sufferer myself, I've been dismayed by the way that the coverage of the debate is presenting Multiple Sclerosis. MS, according to every single news report that I have seen, is a disease so awful that you will want to kill yourself. If you have MS, then your life is all downhill from here. MS will strip you of your mobility, your dignity and then it will kill you.

I know that this isn't the main thrust of these stories, but it is the - perhaps unintended - insinuation. Coverage like this will surely only help to reinforce people's existing misconceptions of MS. They're bad enough already: remember that poll the MS Society carried out back in April?

"Almost half of those surveyed in the poll couldn’t guess how many people in the UK have the condition, and of those who did answer, 80 per cent underestimated the true figure. In fact, only six per cent were able correctly to identify that there are more than 85,000 people in the UK with MS, making it the most common, disabling neurological condition affecting young adults. Just under half of respondents to the survey couldn’t name a single symptom of MS, while only a quarter realised that it’s a disease that mostly affects people aged between 25 and 34, when a diagnosis is most likely to be made. Around 40 per cent (two in five) of respondents assumed a diagnosis of MS meant a lifetime in a wheelchair, whereas just 20 per cent of people with MS rely on one. Alarmingly, six per cent of people attributed MS to ‘public health issues’ such as obesity, poor diet, smoking or germs. Some respondents even thought MS led to brittle bones, bad teeth, phlegm and loss of appetite."

Worse yet, can you imagine how you would feel if you read all this kind of coverage of MS at a time when you were just being diagnosed with it? You're likely to already be feeling pretty vulnerable, but how is seeing MS being linked so closely with all this coverage of assisted suicide going to make you feel? Not great, I would think.

I have MS. It's not something that I advertise, especially, but neither is it a secret. If someone asks me about it or, as they did today, asks a few direct questions about why I had a lumbar puncture, then I'll tell them. My symptoms are not obvious: I don't use a walking stick or a wheelchair and I'm still able to go running and to play football, but when some people - not all by any means - hear that I have MS, I can almost see their preconceptions slotting into place before my eyes. People do not really know what MS is. Why would they? Until I started suffering the symptoms and it became a possible diagnosis, I didn't really know anything about it either.

I'm probably being oversensitive, but is it too much to hope for that we might perhaps have been able to have the same interesting debate about assisted suicide without focusing on Debbie Purdy's particular condition? Or perhaps to have an explanation of what Primary Progressive MS is and that there are different types of MS and that every case is different? That there's no certainty of outcome? That almost no one actually dies of MS and that the average lifespan for someone with MS is almost (almost!) the same as for everyone else?

Is that too much to ask for?

In a word: yes. I'm sure it probably is. Lest we forget, you can probably also subsititute the "MS" in every sentence above with the name of any other disease or condition. Can we manage to be sensitive about all of them all of the time do you think?

Hmm.

Whatever next? Insisting on having a footnote on all meeting minutes indicating that the chairman could be a woman as well as a man and that the title doesn't necessarily denote the gender of the occupant? Well, it's either that or just calling them "the chair" or "chairperson" and that would just be silly........

It's political correctness gone mad, I tell you.

Perhaps this is where the internet really comes into its own. The newspapers and TV coverage may be painting a story one way, but if you're interested enough to go and look up Multiple Sclerosis on wikipedia, you'll find a really well-written and informative article. I know that not all wikipedia entries can be trusted, but this one has been pulled out as being one of the very best, and it's a great place to start. There are some very good information sites run by people like the MS Society, but there's also a whole world of more personal information contained within blogs (like this one), community sites (like this one) and even on dear old Twitter. I'm not bigging myself up here especially, but I know that I have taken great comfort from reading about and sharing other people's experiences. The process of being diagnosed, deciding what drugs to take and how to inject them, what to ask my neurologist, what a lumbar puncture will be like.... priceless human contact that all helps to dispel the uncertainty and to create a feeling that you're not in this on your own. I'm not setting out to preach, but if anyone happens to google their way here looking for information, then maybe, just maybe, they will be comforted and informed by what they read and might just have some of the bad juju of misinformation and ignorance dispelled.

...or they'll just learn a load of useless crap about whatever transient fluff is passing across my monkey-brain at any given time.

One or the other.

not there....

Yesterday afternoon, I found myself involuntarily reaching out to push the glasses I no longer wear back up my nose. I suppose it's hardly surprising, given that I wore them for the best part of thirty years. All the same, it was still something of a surprise to find them not there as I reached out to adjust them.

I suppose this kind of vestigial feeling must be similar to that experienced by people who lose a limb, although presumably it's infinitely preferable to reach out for glasses that you no longer need than to look for an arm you no longer have.

Life without glasses is good.

one wave short of a shipwreck....

My recent brushes with neurology have shown me how much doctors know about the human brain, but also how much more they don't know. Technology means that we can now see inside the human skull, but any understanding of it that we do have is very much glimpsed through a glass darkly. Thanks to MRI scanning, I have seen what my brain looks like, but I don't feel any closer to understanding how it works. This has never been clearer to me than it is now.

About two weeks ago, whilst playing football, I noticed that the vision in my left eye was slightly cloudy. I tried to ignore it, but it's still a little less than two months since my surgery and my eyes will not have fully healed yet, so I couldn't really help but worry about it. Immediately after the first operation, I had been anxious that the quality of the vision in my left eye hadn't been as good as I had hoped, but as the weeks went by, it seemed to get stronger and stronger until the point where it was at least as good as my right eye. In turn, the vision in my right eye seemed to be a little more variable, and I was troubled somewhat by the way that light fractured as my pupil approached the edge of the smaller lens in dim light. After reassurance from the professor that my brain would learn to tune that out, I resolved to put my worries to the back of my mind and to just leave my brain alone to adjust to my new eyes. The cloudy vision was a bit of a worry, but I was determined that I wasn't going to just go running straight to the professor just in case my mind was playing tricks on me again.

A week later, though, and the cloudiness was still there... perhaps worse... and I could now feel a nagging sense of pressure behind my left eye too. I hadn't been given a handy fact sheet that might tell me what to expect from the operations, so I felt I had no choice but to email the professor and ask for advice. He emailed me back fairly quickly and told me that he would have expected my vision to have settled by now and that I should make an appointment to see him on Monday - yesterday. The wait for the appointment was only a few days but I found it difficult: I was really starting to struggle with my left eye and was finding it hard not to panic about what could be wrong. I resisted the urge to google, but my mind started to dwell on doomsday scenarios: what if the pressure in my eye was dangerously high? what if the lens needed to come out? what if? what if?

The day of the appointment itself I found myself able to put most of this from my mind because I knew I was seeing the professor that evening, but the vision in that eye seemed worse than ever and I developed a headache behind my eyes. I was nervous. The clinic was chaos, as usual, with twice as many patients as scheduled appointment slots, but as I had been slotted in myself, I felt I could hardly complain. I waited an hour and was then called in for the reckoning. The professor tested my vision in both eyes, he carefully and silently checked the pressures and he examined both the surface of both eyes and my retinas. Then he sat back and he gave his verdict: all the empirical evidence pointed to nothing being wrong. My vision was normal in my left eye and better than normal in my right, as it had been when I last saw him; the lenses were attached well and the pressure was good. There was perhaps a thin layer of cells on the stickier surface of the left lens, but this would have been there since the operation that inserted the lens and would be invisible to me. All good news, but why was I seeing a haze? Why was my vision cloudy now when it had been clear before? The professor had no answer, except to say that everything looked extremely good to him.

There are only two possible conclusions I can draw from this: the first is that the professor, one of the most eminent specialists in this field in the world, doesn't know what he's talking about and has missed something that is affecting my vision, or my brain is playing tricks on me.

It must be the latter.

As we drove home, I was both relieved and depressed: relieved because my eyes were okay, but depressed about the tenacity of my brain in hanging onto a haziness that probably wasn't really there. It occurred to me that the haziness had started to bother me at about the same time that I was starting to stop being bothered by the fracturing light in my right eye. In other words, my brain was tuning out one thing and fixating on another, or perhaps it simply inventing something to fixate on.

As you might imagine, this is really difficult to come to terms with. C. wondered if I had substituted fretting over my glasses for fretting over my implants, and she's probably right. But the fact that this is likely all in my head does not make it any less real to me or the symptoms any less bothersome. The bigger picture is great and I'm still really pleased that I had my eyes done and I've been delighted with the results. If I could go back in time, knowing what I know now, I'd make the decision to have it done all day long. I'm not so naive that I don't realise that if it wasn't worrying about my eyes, my brain would most likely still be fretting about the fit of my glasses or the scratches on my lenses or God knows what. I might still be fretting now, but at least this way round I can see the clock when I wake up in the morning. Of course, if I could stop my brain doing this, then I would stop my brain doing this. Apart from anything else, it is incredibly tiring and I just wish it would stop.

I'm actually pretty stress resistant: I don't really let the pressures and strains of the office bother me, and I am well able to take other assorted crises in my stride. It's the little things that really get to me, and frankly I'm beginning to realise that the obsession with little things is probably a manifestation of problems that I'm having elsewhere in my life. Quite what those problems might be, I don't know, but I do know that, whatever they are, I wish they would bloody go away so I can think about something else for a while.

Meanwhile, I've got some more drops for my eye (placebo, anyone?) and I'm trying desperately hard not to think about my eyesight in the hope that my brain will turn its laser like (over-)analytical focus onto something else less bothersome.

My analytical frame of mind is probably my greatest asset. Turns out it's something of a curse too, and that I'm a mentalist.

It's enough to drive you mad.

like a coin that won't get tossed....

Although I'm only thirty-four years old, some days I feel as old as the hills. I went for a run during my lunchbreak yesterday, and it was fantastic. I was feeling a little bit tired from a game of football the night before and from my mandatory 3 times a week anti-WT upper body strengthening exercises, but within minutes of getting out of the door, it was obvious that this was going to be one of those rare occasions where a run feels great. Usually they just feel like a bit of a slog, a means to an end, but yesterday was great. It was a beautiful day, not too hot and not too cold, with just enough sun and barely a breath of wind. It felt as though spring was really just around the corner, and I found an unexpected bounce creep into my stride as I ran down by the river. It was great.

This morning though, I felt sore. The still-damaged ligaments in my ankle were stiff, my knees were a bit sore and my legs appeared to have seized up. I used to embrace a bit of after-exercise muscle pain as a welcome sign that I must have been working hard enough. Now though, it just feels like a window into my old age. Not that it's enough to stop me exercising so obsessively, mind you, and I played 90 minutes of football this evening. I feel worse doing nothing at all than I do flogging myself into the ground, I know that much. The physical discomfort is a whole lot easier to deal with than the psychological discomfort I inflict upon myself when I don't exercise. Ask me again when I'm a bit older though, eh?

I've been getting used to what cosmetics companies call "the visible signs of ageing" for some time now. I first noticed that I was losing my hair when I was in my middle-twenties, and I've been going grey since not very long after that. I imagine that the wrinkles around my eyes are coming along nicely too, although I've never really studied them with any great interest.... besides, what exactly am I going to do about it? I'm not bothered by wrinkles, so I'm not about to start using Protect & Perfect, nor am I likely to start having hair replacement therapy or get a weave done any time soon. I don't think I'm vain enough. It's not that I'm claiming I have no vanity, because I do, it's just that I'm not vain enough about my appearance to be interested in doing anything much about it. Grey hair simply doesn't bother me.

Well, I say that..... but in the last couple of years I have started to notice the odd grey hair appearing in locations. You know....other than on my head. On the whole, I can ignore them. For starters, I'm not an especially hairy man, and they're still pretty isolated, in the main, and clearly nothing very much to worry about. Yes, even down there. For some reason though, I seem utterly unable to tolerate grey hairs appearing on my chest. I simply can't stand the sight of them. No matter how much I try to leave them be, once I have spotted one of these interlopers, I have to pull the little bastard out. I'm aware that this is neither rational nor sustainable in the long run. As time goes on, there are only going to be more greys appearing, and before long I know that they will have a clear numerical superiority. Am I going to persist with my zero tolerance policy to its logical conclusion, or am I just going to get over it and learn to live and let live?

Who knows? For now I think I'll take it one day - and one hair - at a time.

It's just not logical. Why just the chest? Why care here but nowhere else? Call yourself clever do you brain? Well where's the consistency? Tell me that.

So yeah. I'm maybe a bit vain. Just in a slightly offbeat way. I may be ageing, but boy, do I take pride in the consistent colour of my chest hair.

Come to think of it, I'm not overfond of stray, Denis Healey-like eyebrow hairs either.

Especially not the ginger ones.

dream on...

I've had a number of things chewing over in my mind recently, and maybe as a direct result of this, I woke up at about 4am this morning having had an extremely vivid dream:

It is late at night and I am in the living room at my parents' house. Everyone else has long since gone to bed. The phone rings (only it isn't a phone, it is coming from my laptop). I answer and there is a moment of silence at the other end before a slightly reluctant voice speaks. I recognise the voice at once, even though I haven't heard it now for something like 5 years. It is my friend Justin. He wants something but he doesn't want to tell me what it is and asks me to go and get my older brother. I go upstairs to the room where my brother is sleeping and try to wake him up but he's soundly asleep and he barely stirs. I go back downstairs to discover that Justin is now quite agitated and can no longer wait for my brother to get up and talk to him. He has something he needs to say and it now looks like he will have to say it to me. He tells me that he needs someone to look after his parents' luggage. They are in the airport and about to go to Eygpt, but for some reason they have to leave their bags behind and need someone to look after them. As we speak, Justin tells me that he has already sent them to my mum and dad's house and wanted to make sure that they would be taken care of.

...but my mum and dad have just moved, I tell him. The bags will be going to the old house, and there will be noone there to receive them.

And then I woke up.

What does it mean?

Answers on a postcard please.

I was just guessing at numbers and figures...

I reckon that most people have an instinctive feel for numbers or an instinctive feel for words; that you either see the world in terms of 1s and 0s or in terms of a-e-i-o-u. That's not to say that the one view excludes the other, just that I reckon that most people have a preference.

I'm a words man.

Always have been.

As long as I can remember, I've had a facility for and an enjoyment of words, and it's a standing joke in our family that I never travel anywhere without a book. It's also something of a running joke in my family that I'm hopeless at maths.

To be fair, this jibe has some foundation in the fact that for many years I really, really struggled with mathematics at school. As is the tradition for the brighter students at an English Prep School, at the age of thirteen, I was sent off to sit a number of exams to see if I would be considered for a scholarship to attend Public School. I was duly awarded a scholarship, and proudly took my place the next term with my fellow high achievers in the tops sets of almost every subject...... every subject except maths, that was. In maths, I was put into set five. Out of six. All of my colleagues from the top form were in the top set. On the plus side, this meant that to have been awarded a scholarship at all, I must had done extraordinarily well in my stronger subjects, but it was a bit unusual. I was never exactly embarrassed by this, as I was also convinced that I was a no-hoper in the subject, but it wasn't really very much fun.

As it happened, I came top of the set by absolutely miles. As maths became less sums and became more about simultaneous equations, trigonometry, matrices and the like, I found it got easier. I didn't work well with numbers, but now I had a calculator to deal with that and could focus on things that now required the manipulation of formulae and not simply the ability to work with numbers. I found it much, much easier, as if it now used a different part of the brain. In the summer exams that year, I finished the exam with more than half of the allotted time still to go. As he had nothing better to do, my teacher started marking the papers of those who had finished in the hour or so still to go. After a while, he turned round to the blackboard and started putting up the scores so far:

Thompson: 46%
SwissToni: 98%

I got one question wrong. I think the score rather demoralised those yet to finish.

I was duly moved up to set three, and finished top of that set too... eventually getting an "A" at GCSE and idly contemplating doing the A-Level (until I came to my senses).

I'm still a lot more comfortable with words though, and I love the sound of the English language (sadly only English... I'm not very good at other languages).

So I find it incredibly frustrating that I'm not very good at Scrabble. Or cryptic crosswords. Or the Countdown Conundrum. They're about words, aren't they? I should find these a breeze, shouldn't I? Other people expect me to be good at them too. So why can't I do them?

I reckon it's because anagrams and crosswords and scrabble are all tied up with numbers. I think there is something very numerical about looking at a mix of letters and calculating the words that you can create from them. Hell, Scrabble even assigns every letter a number....

I do have tremendous admiration for people who are good at these things, but the plain fact is that I would like to be good at these things and I'm not.

I'm such an egotist.

And for the record... that's not the reason I have no intention of ever joining Facebook.

I remember it well....

I sometimes wonder at my brain's capacity for storing information of patently little use. Yes, it's a talent that occasionally serves me well in pub quizzes and Trivial Pursuit, but in the main it's a total waste of time. I can't help but think that all that space in my head could be better used.

Here's an example: I went to they gym this evening to go for a swim. I parked my car and wandered into reception. I was planning to rent a towel, so instead of pushing straight on down to the changing rooms, I walked over to the reception desk. Just in front of me was a short-ish, chubby-ish guy. I didn't catch what he said, but I did hear the receptionist asking what his name was. He gave it, and the receptionist let him through the gates and into the main body of the gym. It was a slightly unusual name.

So far so unremarkable.

The thing is though, that hearing his name had made me stop dead in my tracks. The reason? I remembered him. I'd never met him before in my life, but I knew him.

Rewind to 1995. I am studying for a Masters degree in Medieval Studies and am living in a postgraduate hall on the edge of the main campus. As you might expect, the postgrads living in the hall were an interesting mix of nationalities... German, Portuguese, Rwandan, Canadian, Greek... all sorts. As chance would have it though, my next door neighbour was from Bolton studying archeology.

Are you paying attention at the back?

Will, my next door neighbour, had completed his undergraduate degree at Birmingham University, so when he saw that they were featured on the new series of University Challenge and that one of his mates was the team captain, he made sure we all made it to the TV room in time to watch it.

His mate was a bit of a character. He had long-ish, curly hair and although I can't remember if his team won or lost, I do remember that he had managed to get under Jeremy Paxman's skin... for all sorts of reasons, I'm sure, but the one I remember most clearly is that he stopped Paxman mid-question to wonder whether, in fact, he should be asking a starter for 10.

"This is a starter for 10!" brayed Paxman.

I don't know why that's been stuck in my head for the last 12 years, but it has.

The bloke who wound up Jeremy Paxman? It was the same bloke who was in front of me in the gym this evening. A bit older, a bit balder and a little fatter perhaps, but very much the same person. Besides, how many other people have such a distinctive name. I nearly tapped him on the shoulder to remark upon this. I wondered if it would make his day if I mentioned something that happened to him back in the day. Perhaps it would have done, but I hesitated and the moment passed.

Still, if he or any of his friends happen to do a spot of ego-surfing on Google at any point in the near future...... Aeneas Rotsos, I remember your TV appearance very clearly and I salute you!

Mind you, as he appears to work for the BBC, perhaps this is no big deal for him. Perhaps Paxman put in a word for him after he made such an impression? Who knows, eh? What I do know is that I'm sure that if didn't use my grey matter to store nuggets of information like this, then I might perhaps have been able to put my mind to something really difficult.

Cryptic crosswords, perhaps. It would have been really nice to be good at them......