don't stop moving...

As they're obviously trying to keep (potentially vulnerable) people away from the clinic at QMC at the moment, I had my annual consultation with my neurologist over the phone today. Actually, it was a surprisingly effective way of doing it and was probably as helpful as any of the sessions I've had at clinic since I first started getting symptoms. 

The long and the short of it is that my disability has been slowly increasing over the last few months/years and today they've shifted my diagnosis from 'relapsing-remitting' MS to 'secondary progressive' MS. 

I think this sounds more significant than it is. Ultimately, it's just a label to describe the way my disease is progressing. Most people with MS have a series of relapses, each relapse bringing new symptoms and new problems which get a bit easier with time (without ever completely disappearing), before the next relapse arrives and starts the cycle again. Almost all the treaments for MS are designed try and slow down the frequency with which you have relapses, thus slowing the progress of the disease and increasing disability. There isn't a cure. 

I've never really had relapses and have just seen a slow, but steady increase in the severity of my existing symptoms. I haven't been on a disease modifying therapy for a couple of years now, so shifting my diagnosis is really only an acknowledgement of the way my MS seems to be progressing: I'm not expecting relapses, but I am expecting my legs to get stiffer (amongst other things). The shift closes the door to lots of treatment options, but may open the door to others. 

It's only a label... but at the same time, it can't help but feel like a significant moment. It sounds significant. 

Still, I have much to be thankful for: we're off on an 11 mile run tomorrow morning and I've run a little over 1,100 miles so far this year. Very little of that has been as fast as I would like, but I know that I'm still capable of running quickly when I really want to, and I was only a few seconds off my mile PB a few weeks ago. Whilst I now don't trust my legs to the extent that I won't go out without knee pads and wrist guards, running remains at least as important to me now as it ever has done and I cherish what I can still do. 

Every run, no matter how long or how fast, still feels like sticking two fingers up at this diease. Long may it continue.

remote control...

Not surprisingly, I've been thinking over the last few days about my own exam results. Of course, unlike this year's pupils, I was lucky enough to sit my exams in the usual way and to then receive my results at some point later in the summer. I got the grades I needed, so I went to my first choice University. It was pretty simple.

Then I thought about my experience a bit harder.

I expected to go to University. I was good at exams and therefore had a pretty crucial advantage that this was the preferred way of assessing someone's academic merit and deciding their future, both in the immediate term and almost certainly in the longer term too. But I expected to go.

My expectation went much deeper than simply expecting to get the results that would enable me to study the course I wanted at the institution I wanted: I just assumed that the way my life was mapped out, I would drift from school to University to job. Oh, sure, there were all sorts of uncertainties for me along the way and my exact future was clouded... but never for one second did I consider that my path lay away from further education. 

Of course, I didn't stop to think about this for a moment. I just went with the flow.

This privilege and expectation was a new in my family. My father was the son of a publican who ran a pub in the Plymouth naval docks. Dad didn't get especially good grades in his exams, but he was determined to be a doctor, and St. Bartholemew's hospital in London took a chance on him. By his own admission, he'd be nowhere near getting the grades he would need now, so the medical profession would have been deprived of 50 years of selfless service, with thousands of hours given not just to the NHS but volunteering for St John's Ambulance (apparently he used to do their pandemic response planning!). Even now he's retired and in his 70s, of course my dad put his name forward to volunteer as we went into lockdown. For my dad, this education was a gift and he's cherished it for his whole life (he's got a stack of letters after his name that often requires a second line on his latest certificates).

He wanted this gift for his children, of course he did. We didn't grow up wealthy, so my parents saved every penny they had to put their children through a private education. I was on a scholarship, but even so, for three kids, this was an absolutely collosal investment. The staycation is not a new concept for my family, that's for sure.

So, barely 25 years after my father became the first in his family to grasp at a further education, I was already drifting into it. He read Medicine and became a doctor, I read for a BA in Modern European and Renaissance History and then drifted into an MA in Medieval Studies and only didn't drift into a DPhil because I had the realisation that wanting to be called "Doctor" wasn't anywhere near a good enough reason to do four years of research into something that ultimately no one would care about, never mind to fund.

So I drifted through University. After 11 years at boarding school, being away from home wasn't a new or revelatory experience for me, and I actually found it a bit boring that so many people thought that it was. It was mainly an examined degree, so being good at exams was still an advantage for me, and I got a decent result without ever really throwing my heart and soul into it, whilst probably not being as good as I could or should have achieved (I ended up right on the cusp of a First Class degree). I can actually remember a conversation I had with the tutor who supervised my Masters dissertation ("Historical Precedent and the Deposition of Henry VI in 1471" - a page turner that showed the rise of parliamentary power in the sucessive removal of Edward II, Richard II and Henry VI). I can write and I was interested in my subject, but this tutor could see that I was only really interested in doing a good job, not an exceptional one and he helped me to achieve that. Looking back, I can not only see his mild disappointment at this wasted opportunity, but I share it. If I was to go to University again, this time around I would approach it very differently... as more than just another box to be ticked as I drifted through life.

This privileged drifting seems all the more infuriating as I'd already rejected a lot of the behaviour of many of the people that I'd been to school with. I had a massive, visceral reaction against the kind of arsehole that we now see running the country, swanning around as if they owned the place and everybody else in it. I also hated the idea of going to Oxbridge. My intellectual vanity did mean that I ended up applying to Oxford, but I received zero guidance from my very expensive school, refused to sit the fourth term entry exam (remember, I was good at exams) because I didn't see why they thought they were so special.... and then ended up applying to a college where I was pretty much the only person who hadn't done the exam. Nice job, everyone. My dad actually had a close friend who was the admissions tutor of a Cambridge College, and he arranged a meeting. Rather than see this as a priceless opportunity, my takeaway was that this guy had spent the whole time trying to boast about how every undergraduate was a published author. In my teenaged stupidity and arrogance, I rejected this (perceived) bullshit by applying blind to Oxford.  What a prat.

I do think that not going to Oxbridge after 11 years in private education was very good for me. Warwick and York are both excellent universities in their own right, their history courses arguably better than their Oxbridge equivalents, but they are also much more socially mixed, and I'm sure it was good for me to breath some different air. I had a girlfriend from Stockport, for goodness sake. Imagine that! (she's now a lecuturer at King's College, London, I'm told. Another person who took their education more seriously than me).

So yes, I look at the scandal of this algorithim that advantages pupils from private schools and I think fuck them and fuck the system that perpetuates their preeminence. They --- I --- have had every possible advantage in their lives to date and they don't need a leg up when there are plenty of other people who just want an even crack of the whip. Of course this government didn't see anything wrong with this approach: they've benefitted from this system every single day of their lives for generations. 

If privilege can be that corrosive in the course of 25 years and one generation, imagine how destructive it must be over 250 years and 10 generations; over 500 years; over a millennia. This country is dying under the weight of all this privilege and has been for centuries. The very idea of British exceptionalism is ridiculous and an insult to all the people and countries and cultures we've pillaged as we tried to claw ourselves out of the mire by standing on everyone else. If we now want to jump back in, it's probably best to just let us go.

Just let us go.

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.

what a waste, what a waste, what a waste of time...

As the great email clear-up continues, I find myself in 2011 and with the first draft of a blog post. Just reading through it is a reminder of why I never want to find myself working for this sort of company ever again. Just look at this nonsense. It's surely a form of low-level psychological abuse. For some reason, I put up with this for more than 20 years!

"Intellectually intimidating"? Imagine giving someone that feeback, ffs.

--

As the financial year ends, I'm finding that the usually serene progress of my working day (**ahem**) is being somewhat interrupted by the sour inevitability of year-end performance reviews. A particular favourite of mine is the 'consistency forum', where the senior people in my department try to objectively compare the populations of each grade to decide who has exceeded expectations, who has met expectations and who has fallen short based upon a combination of what people have achieved over the year and their "behaviours".

Unfortunately, the outcome of this forum is important because it determines the size of any pay rise or slice of bonus that we get. Objectivity is, of course, impossible. I'm not even sure they really even aim for it, to be honest, as each manager tries to get their own people into the top right hand "exceed" box at the expense of everyone else. When it comes to the "behaviours" score, in particular, perception is king. Your customers might all think that you are the best thing since sliced bread, but that's not as important as the impression you've made on the colleagues who are judging you. You are supposedly only being ranked on your performance in the last twelve months, but in practice, this is cobblers: there's no time limit on the judgement these people have made on you and there's certainly no measure

Take me as an example: coming out of my consistency forum, I was told that although my behaviours had improved markedly over the last six months, I was still scoring slightly lower there because of the time before that.

Um. But I've only been back at work for six months after taking most of last year off. So, what am I being judged on, exactly?

I actually did quite well in my forum, and yet they've still managed to find a way to piss me off.

One other piece of feedback I got out of my session was that I am apparently "intellectually intimidating". I'm not sure what I'm supposed to do with that, to be honest. Is that something I should be actioning? Is it even a criticism?

-

We waste our lives, we really do.

Speaking of the sort of nonsense people waster their time and money on in a work environment.... I saw someone on an MS charity's Facebook page today kick off a poll to see what myers-briggs personality types we all had to try to assess if there's a link between personality type (specifically the way we handle stress) and multiple sclerosis.

...OF COURSE THERE ISN'T!

It's all made up, pseudo-scientific nonsense where people use confirmation bias to try and pick out how much their profile really reflects their true personality. There's no link between a myers-briggs personality type and your personality, so there's hardly likely to be a link with the severity of your MS, is there?

Sheesh.

round and around...

In the process of clearing out the 10,000 surplus emails in my inbox, I've come across another post that I wrote for someone else (in 2009). As I'm loathe to let good(?) content go to waste, and because I find it interesting (even if no-one else does).... I'm (re-)posting it here.  Enjoy. I still have a soft spot for Nik Kershaw.

---

Memories Can't Wait.... a song that reminds me of a friend (originally written for Ben on Silent Words Speak Loudest, or possibly The Art Of Noise. I can't remember)

I didn't grow up in an especially musical household.  Neither of my parents are particularly into music and because it had never formed a large part of their lives, it was only natural that my two brothers and I didn't initially form much of an interest ourselves.  I've always found it a little hard to understand how two people, both just five or six years younger than Paul McCartney and presumably slap bang in the prime demographic for the Beatles, could have both have missed out on such a vibrant period of British music, but miss it they did.  My mum tells me that she owned a copy of Revolver and my dad had a pile of "Top of the Pops" LPs that he had inherited from his father's pub, but their hearts weren't in it and our house was largely devoid of background music.

My first real musical exposure, then, came instead from regular visits to the house of a friend just down the road.  Like me, Will had two siblings, although where I was a middle child, he was the youngest by several years.  I don't know if his parents were especially into music, but his dad worked for Rotel, manufacturers of high quality stereo equipment, and their house was naturally filled with top-notch hi-fis.  Although we spent a lot of our time together mucking about with computer games, playing with our Star Wars figures and riding our bikes outdoors, we did occasionally mess around with the record player and with his brother and sisters' 12" singles.  Although I can remember listening to the likes of Murray Head's "One Night in Bangkok", a bit of Level 42 and "Hole in My Shoe" by Neil from the Young Ones, the artist that always stood out the most for me was Nik Kershaw.  Both "Human Racing" and "The Riddle" were released in 1984, and we used to sit entranced by songs such as "I Won't Let the Sun Go Down on Me", "Human Racing", "Wouldn't It Be Good", "Wide Boy" and - especially - "The Riddle".  Our listening coincided with our reading of "Masquerade", the book of illustrations for children by Kit Williams that concealed clues to the location of a golden hare hidden somewhere in the UK.  The book was first published in 1979, but the hare had only (apparently) been discovered in 1982, so the idea of riddles was fresh in our minds as we tried to work out what on earth Nik Kershaw was trying to tell us when he spoke of trees by rivers, holes in the ground and old men of Arran.

Kershaw has, of course, subsequently revealed that there is no meaning to "The Riddle" at all, but to our ten year old minds it was a puzzle well worth trying to solve.  Besides, it was (and remains) a fantastic record, and through it I began to discover a love of music that has stayed with me to this day.  I can't say that I listen to Kershaw very much any more, but he has the proud distinction of being the artist who created the first two albums that I ever bought with my own money.  Better yet, whenever I think of him, I can't help but think of the letter that I wrote to Jimmy Savile in the summer of 1984 asking if he could fix it for me and for my best friend Will to meet our hero.  Saville never wrote back, sadly, and he certainly never fixed it for me.  Although his parents still live down the road from my folks, I lost touch with Will a few years ago after we both went to University.  Musically we had drifted apart, with him baffled by my love of heavy metal and me a touch confused by his love of Lenny Kravitz.  We'll always have Nik Kershaw though, and whenever I hear the chiming opening chords of "The Riddle", I'm reminded of my first best friend.

here's mud in your eye...

In the process of clearing out about 10,000 emails (I'm not even joking) from my account, I stumbled across this review I wrote of Glastonbury 2009 for one of my old blogging friends, Postculturist aka Queenie, aka Lizzie aka Urban Fox. Her website doesn't seem to exist anymore, and it's sort-of topical and kind of interesting, so I thought I'd reproduce it in full here before expunging the email into the digital void forever.

---
"Here's mud in your eye".

If Worthy Farm's Ministry of Propaganda has anything to do with it, and they were at it from the very first day, then the 2009 Glastonbury Festival will be hailed as the best ever. This is the view that will be slavishly be repeated in the rapturous reviews that will now be appearing across all available media outlets, print, broadcast and online.

Perhaps we've all been seduced by an affable 73 year old farmer and his Utopian ideals and charitable work, but of all the festivals, Glastonbury is the one that is most readily given a critical pass. Yes, Glastonbury has raised millions of pounds for charities like Oxfam, Water Aid and Greenpeace, but this is no hippy idyll and big corporations are everywhere you look: the beer is provided by Carlsberg; the mobile phone partner for the Festival is Orange; The Guardian and Q Magazine are the official print media partners and both have their own venues on the site. In case you missed their saturation coverage by actually being at the Festival, the BBC are all over Glastonbury like a rash, sending more than 400 employees and flooding their networks with saturation coverage. I actually thought that Steve Lamacq might be stalking me at one point this year, so often did I run into him.

Those parts of the site that made the Festival different are slowly bur surely disappearing: Lost Vagueness disappeared after 2007, The Leftfield Stage, run by the Unions and a place for campaigning, watching Billy Bragg play and Tony Benn speak, disappeared after 2008. As long as the Green Fields still exist and the Glade is still hosting endless gigs by Ozric Tentacles and Gong, then I suppose there's still hope. There can't be many people that really miss the drug dealers selling Class A narcotics on the bridges between the two main stages, but surely there's no denying that the individuality and anarchic edge of the festival is slowly disappearing, to be replaced by something altogether more corporate and conventional. There are now even special entrances for hospitality pass holders at the pedestrian gates, for goodness sake.

Given that I consider it essential to take a flask of homemade Mojitos and a cool bag filled with ice and fresh mint, I can hardly complain about the festival becoming middle class, but I do I like to think that I was at least a little less middle class than the couple carrying the flag proudly proclaiming that they were "Tougher than the Rest" because they'd got married in Italy and were honeymooning at the Festival. Tougher than the rest of the tennis club maybe. To steal a line from Jimmy Carr, they're not so much hard as 'al dente'. The Festival has become a place to be seen, something that you do to say that you've done it, somewhere you go with your mates to celebrate a stag or a hen do.

As a relative veteran of eight Glastonbury's since 1993, including several very wet ones, I tend to pack for the worst and hope for the best, I expect the toilets to be a little more basic than the one I have at home and I make do without a shower for a few days. I find it amazing to see people moaning to their friends as they struggle through the mud in their flip-flops and pull faces in the queues for the toilets as they push toilet tissue up their noses to try and avoid the smell. I know it's not something you would normally do, but does your shit not stink? Do you really need to straighten your hair, curl your eyelashes and have room for your own shower tent at your campsite? Is life not worth living if you don't bring your own stereo system into the campsite at a music festival?

Perhaps I'm just grumpy because it took me more than 8 hours on Wednesday afternoon to drive the last 25 miles onto site; because it inevitably started to pour with rain on my first full day on the site; because I barely saw a dozen bands over the whole weekend that I really enjoyed; because I found myself drawn to the main stages again instead of making a bit more of an effort to get around the rest of the site; because the sound at Maximo Park at the Queen's Head on Thursday was so appalling; because the crowd trying to see Rolf Harris at the Jazz World stage was so predictably large and so un-stewarded that we couldn't even get close; because I fell asleep during the much anticipated, but ultimately very uncompromising set by Bruce Springsteen on Saturday night (frankly, I can't top Dorian Lynskey's simile in the Guardian that watching the Boss play the Pyramid was "like someone standing in front of a magic-eye picture and being told that, if he stares long enough, he will see the Statue of Liberty but who finds, two-and-a-half hours later, that it's still just squiggly lines")

Was this the best Festival ever? Well according to such backstage luminaries as Harry Enfield and Peaches Geldof, then it certainly was.

Me? I'm not so sure.

Still, although it might not have been a classic Glastonbury, that's not to say that I didn't enjoy myself. Highlights for me included: finally arriving onsite after 12 hours in the car, that first pint of Burrow Hill cider at the Cider Bus, getting to wear my fedora for four days solid, Neil Young's seemingly endless false endings to "Rockin' In The Free World", listening to the early morning rain on my tent, the Fleet Foxes, that ridiculous rumour that Michael Jackson was dead, Lily Allen - yes, Lily Allen - on the Pyramid, watching the British and Irish Lions on a big screen in the blazing sunshine, Status Quo, Tom Jones, Nick Cave ripping the heads off a sleepy Sunday afternoon crowd with a coruscating rendition of "The Mercy Seat", Blur's stately rendition of those beautiful sad, slow songs in the middle of their set.....

My absolute favourite moment? Standing in a massive crowd in front of the Pyramid Stage on Sunday afternoon, surrounded by all of my friends for perhaps the only time in the whole festival, singing and dancing along to Madness. I love Madness. They're one of first bands that I can remember, and I haven't seen them performing live since Madstock in 1994, when they were supported by A Guy Called Gerald, Aswad and Ian Dury & the Blockheads. They have a new album to promote, but essentially they gave the crowd exactly what they wanted and played all the old songs we remember: One Step Beyond, The Prince, Night Boat to Cairo, Embarrassment, House of Fun, My Girl, Baggy Trousers, Wings of a Dove, Shut Up, Grey Day, Bed & Breakfast Man.... when they played Our House, I looked around to see (almost) everyone singing and dancing their hearts out with huge smiles on their faces, and found myself uncontrollably welling up with tears. It's a nostalgic song, and I was filled with nostalgia for my childhood, for the friends around me and for this moment at this brilliant festival. I pushed my sunglasses back down onto my face, turned back to the stage and continued to dance happily as the band brought their families out onto the stage to share the moment with them and with us.

Same time next year?

--

Though I say so myself, I think that stands up okay!

My last visit to the Glastonbury festival was 2016, the year I heard the result to the referendum when my phone pushed an update in the early hours of the morning in my tent. I actually haven't missed it all that much, to be honest. I enjoyed watching this year's virtual festival, watching some iconic sets that I actually attended on tv for the first time. Will I be hurrying back? Well, never say never, but - whisper it quietly - I've discovered that smaller festivals are actually more fun. Not that it's easy to imagine attending any kind of large gathering of people ever again, given our current situation.

Ah. Great days, crazy nights (not that I've ever been one for partying the night away at a festival, to be honest. And now I'm old, so.....).

I've often said it, but nostalgia ain't what it used to be.

something changed...

I was made redundant a little over a year ago. 

Even with all the various ins-and-outs of my career, outsourcing, insourcing and all the rest of it, it still felt like a pretty significant moment. After all, I first walked through the doors on 15 September 1997 as a graduate trainee and finally left on 7 June 2019. 

That's nearly 22 years. 

An awful lot happened in that 22 years that had nothing at all to do with work. Apart from anything else, in that time, I lost something like 40kg in weight and most of my hair and I gained a house, cat and wife (not in that order or in that order of importance). I was 23 years old when I arrived and 45 years old when I left. 

Given that I spent nearly half my life to that point working there, it was amazing how quickly I put it all behind me. If they hadn't made me redundant, I'd probably still be there now and still taking their salary.... but almost immediately, it became clear that they had done me a massive favour. Even if my departure hadn't been sweetened by a pretty hefty payment, this would still definitely have been the case.

I wasn't sure when I left what I wanted to do. The money meant that I didn't have to rush into anything, and I spent a good few weeks just decompressing from a job that, by the end, was sucking up a good 11 or 12 hours of my life every weekday and also involved out of hours and weekend cover. 

No one made me work those hours, but it's amazing how, when you stop working them, you realise how absurd it all is. Every single day of the working week, I was cycling to work, showering and getting to my desk by 07:15, often  not leaving to cycle home until after 18:00.

That's ridiculous.

My last job was probably the one in which I made the biggest contribution to the business and where I got the most satisfaction.... but as soon as I stopped doing it, it all disappeared in my rearview mirror and I didn't give it a backwards glance. I'm sure they didn't miss me either.

I'm now back in work. This wasn't a given, but I ultimately decided I wanted to do something and the right thing came along. I work three days a week over four days, and I now can't imagine working full time. In an ideal world, I'd be doing more volunteering, but the pandemic has put almost all of that on hold. When a more normal life returns, I'll have the space to resume that stuff. It's all good.

I'm healthier and happier. Even during a lockdown, I feel like my life is much more balanced than it was before.

So what have I learned in the last year since that redundancy? Something that I should have known all along: that life is short and time is precious. Do things that make you happy. No matter how important you think that job is, I bet there are thousands of better things you could be doing with your time that create more good in the world. 

Go and do them.

if I surround myself with positive things...

It was World MS Day on Saturday.

I woke up at about 03:30 to find my whole lower body in spasm. from the muscles of my lower stomach down through my legs to my feet. I've been getting cramps in my legs for some time, but this is different, it's not a sudden clenching of the muscles but something that lasts for longer. It's not as intensely painful, but it is uncomfortable and has a halo effect that lingers in the muscles for some hours afterwards, as a deep-set stiffness in the muscles.

As I often do when this happens, I got up and walked very stiffly to the bathroom. This is partly to ease the muscles off, but also I'm now pretty entrenched in the habit of emptying my unreliable bladder when it is convenient. I catheterise myself every night before bed to ensure I sleep with a completely empty bladder and take a drug every day to help resist bladder urge, but as I was awake it was a way to kill two birds with one stone. It was already pretty light outside and the dawn chorus was really starting to get underway. It was really quite a lovely.

That done, I staggered back to the bedroom to try to get some more sleep, popping an ibuprofen along the way in the hopes of waking up with a bit less muscle pain.

This is my new routine.

We already know that the problems with my bladder are related to my MS: my brain isn't able to reliably empty my bladder completely, and I will often get the urge to pee even if I've only just been, whether my bladder is empty or not. It's likely that the muscle spasms in my lower body are MS-related too. There are drugs you can take to chemically relax these muscles and to try and get a good night's sleep, but I'm reluctant to take them. 

After all, I'm a runner.

Running keeps me sane. This was true before the lockdown, and it's doubly true now. My ability to get out of the house and clear my head on a run is precious to me. I'm probably getting slower as I get older, but the speed I run is not nearly as important to me as my ability to run at all. As things stand, I don't want to compromise the ability of my legs to carry me and so, if the spasms are the price I need to pay if I want to keep running... well, then it's a cost I'm prepared to pay.

Mind you, I have been doing quite a lot of running recently: I covered 145 miles in May, almost all of it side-by-side with my wife, who hasn't run as far in a month, even when she was training for her marathons. Quite a lot of this mileage has been slow, on stiff legs. Where the speed of my wife used to be our limiting factor, these days, it's more likely that she's waiting for me. It's not that I can't run fast any more - I'm doing at least one set of intervals a week where I try to let the brakes off - it's just that I'm really just happy to be moving at all; delighted just to get out of the house in this beautiful weather and to enjoy the fresh air and the flourishing spring around us.

On Saturday, after another couple of hours of sleep, I got up and went out for a 5km run. It wasn't fast and it wasn't pretty, but I like to think that it helped to stretch some of that stiffness out of my legs. Maybe, maybe not. Either way, it definitely made me feel better.

I was diagnosed with MS in 2009 after 4 years of symptoms. It's an incurable condition with uncertain outcomes, so it's a frightening thing to be labelled with. Maybe I'm one of the lucky ones, but I do firmly believe that MS only has as much control of your life as you allow it.

As this film from World MS day a few years ago shows beautifully, a diagnosis with multiple sclerosis does not have to mean the end. Life is what you make of it, and other cliches.



I think I'm much stronger and kinder now than I was in 2009, and I thank MS for that.

numbers and figures....

Unlike lots of runners, I'm not really into stats. I do have a Strava account, I do track every run and I do have a general awareness of my pace, but I'm not one of those people who goes out and tries to take segment crowns and that kind of thing. Never have been. Good luck to people who are motivated by that kind of thing, but I'm just not.

The only person I'm competing with is myself.

I fight a constant battle with myself to stop feeling as though I'm slow and getting slower. I do run a lot of my miles at a relatively sedate pace, much of it with my wife.... but I enjoy those miles, and quite often these days it's me holding her back because her natural pace is sort of between gears for me and it's easier to just run a little slower. I also know, deep down, that it's true that I can run a lot faster than that when I want to, and I have done as recently as last year in the races I do for my club. Hell, I do intervals once or twice a week and I do it then too. It's nice to throw off the shackles occasionally, to not worry about my spasming legs or my stiff ankle or my creaky knee and to just run as fast as I've ever run before. My 10k PB was about this time last year, and it should have been a couple of minutes quicker again, but I got stuck on a narrow path at the start because I'd started too far down the field and got caught behind runners I should have started in ahead of.

Ah, this stuff is boring, I know.  I don't blog for months, and when I do come back with something, it's just a load of crap about running. I'm sorry/not sorry about that. Running has played a huge part in helping me to keep my mental health on an even keel over the years, but of course it's even more important now that everything else has gone on hold. The ability to go outside for a run once a day is absolutely priceless to me and I'm so grateful that I've been able to make the most of it and that I live so close to the river and some nice, spacious running routes.

I was looking at the graphs above and thinking about my running journey. I started tracking my runs in about 2011/12, at about the same time as I started taking running more seriously. I joined Sweatshop Running Community about then and started going out more regularly than just one short run a week. Running with other people seemed to really make me work harder and run faster too. Three years ago, I joined an England Athletics registered running club and started wearing a club vest and running in actual, sanctioned races.  All of this, of course, after my 2009 diagnosis with multiple sclerosis.

Never mind the fact that I've now tracked nearly 7500 miles worth of running, just look at those graphs. The one on the left shows a track of my monthly mileage - those spikes are the peaks of training immediately before marathons, of course. Most interesting is that graph on the right, showing a rolling tally of mileage over 365 days. You can really see that sharp climb up to that first marathon in 2015, but what interests me is what happens next: there's a dip in 2018 -- ironically, running 4 marathons in a 12 month period means that I actually did less mileage over the year because there are 4 months where I'm doing very little as a taper towards race day.. but after that dip, my mileage has steadily increased to track at around 1220 miles for the last 365 days. 481 miles so far this calendar year.

So sure, I've got problems with my legs and ankle and I'm maybe running a lot of that mileage more slowly than perhaps I might like.... but I'm doing okay, considering.

Like I said, I'm not really into stats.

What's keeping you sane?

like a lead leaf scrapes the gravelled ground...

It feels as though a lot has happened since my last post at the end of February. How can it even be possible to write a catch-up post that encompasses everything that happened during the course of the longest month since time began?

I don't think I'm even going to try.

Suffice it to say that the big news around here is that I've finally shifted across to a mesh wifi system. I've been meaning to do so for some time because, although my broadband is fibre optic and in theory very fast, in practice it's handicapped by constantly dropping wireless signal and the need for endless router reboots. Well, those issues are firmly in the past, let me tell you.

... Oh, there's something else?

As the New Yorker so elegantly put it in their cartoon today:

A brief montage of my March, then: we went to Austria and had a lovely week skiing that became a bit weird when it became clear that everything was going to be locked down and things started to close. We made it home on the last day they were operating flights from Salzburg, and we've been in lockdown here pretty much ever since.  Luckily for me, the new job that I started at the beginning of March is home based, so I'm obviously well-equipped to remote work. I miss my running clubs and I'm not uploading sessions for the group I coach onto WhatsApp, but the fact that I can still go outside for a run once a day makes all the difference to the way I feel. If I couldn't run, I don't know what I'd do.

Isn't it weird watching how people come to terms with the restrictions and how, as a society, we seem to have moved from panic buying toilet roll and pasta to loudly judging other people for how well (or otherwise) they're sticking to what they perceive to be the appropriate social distancing guidelines/rules from the government and assessing how well other people understand the concept of 2m of social distancing.

I also can't be the only one to feel slightly uneasy about our slide into "hero" culture for those people who work in the NHS or for other critical services. It's lovely to hear people coming out at 8pm on a Thursday night to applaud these "heroes", but at the same time, the best way to recognise these people is to pay them properly and to make sure they have the right equipment, isn't it? The Health Secretary may wear an NHS pin badge on his lapel, but he is part of a party that has systematically starved the health service of the money it needs to run effectively.  Let's hope people remember that when this is all over and we're next at the ballot box. And don't get me started on that tool from Wetherspoons. As for the clapping itself, I'm reminded of the mentality that some people have towards the armed forces, as skewered by Larry David in Curb Your Enthusiasm.

Strange times.

On a positive note, I think the MS charities have been doing an amazing job trying to keep people with multiple sclerosis up to date on the latest thinking on how the virus might affect us. It's all very well to try and reassure people that many of those people dying are old or have an underlying condition, but that's of little comfort if you are old or do have an underlying condition. It's a strange feeling to think that, if I were to catch coronavirus and die, someone would shrug and say, "Yeah, well he had MS, so.....".

Here's a really interesting post on shift.ms about how suffering from a chronic health condition like MS actually prepares you well for this world of social isolation. 

"Compared to the rest of the population, we are all used to:

- Being stuck in limbo, nobody can ever tell us how long something will last and if it will be permanent, temporary, relapsing remitting or progressive.

- Living with uncertainty. We all know only too well that nobody can predict what the future holds for us and that we have to plan as best we can, but always live in the present."

Well worth a read.

Stay safe. We're living in interesting times.