Monday, 23 May 2016

so call on me, brother...

When I did that Guide Running course organised by England Athletics last year, part of their longer-term plan was to get a database of qualified guides for visually impaired runners up on their website. They had a theory that, just as loads of other people have started running and were taking part in 'couch-to-5km' programmes and heading out to parkrun, there were also loads of visually impaired runners out there too who wanted to start running but had a few more obstacles to overcome before they could get out of the door.

It took them a while to get that database off the ground, but it's online now and I've been contacted three times in the last few months by people in the Nottingham area who were looking for a guide to help them get out and running.  I ran with one at Colwick parkrun earlier this year; another asked me if I would be happy to guide them to a 3hr 45m marathon (happy? I'd be delighted to be able to run a marathon that quickly... even more so if I was somehow magically able to do it whilst guiding a VI runner). The third contacted me a little while ago, but because I was marathon training and he was busy moving house, we were never able to make it work.

Until this evening, when we had a little 6-and-a-bit mile pootle along the canal with my running club.  We didn't run all that fast, to be honest, but I don't think it really mattered.  Nick has just done a half marathon in 2:04 and is looking to train up for the Robin Hood full this summer and for London next year, so is clearly capable of going faster than we ran tonight, but we were feeling each other out and seeing if we could make this work.  He has other guides, but he's looking to get as many as he can so that he can manage all the training runs he's going to need to do without being totally reliant on one or two people.  I won't be running a marathon with him, but I'm happy to train with him when I can, especially if he makes things so easy for me as to meet at a running club session just up the road from me that I already attend most weeks anyway.  It felt good.

When I guide Terry at Colwick, he always worries that I'm giving up a run so I can escort him round.  That's nonsense, of course.  If I felt like that, I don't think I would do it and I run with him because I enjoy it.  It seems like such a little thing to do, to take someone round to enjoy something that I love to do and that they can't do on their own.  It helps when you're with someone as great as Terry, but actually I've enjoyed all of the guiding that I've done.  Nick and I had a good rattle as we ran and he seems like a decent guy.  I only dropped him the once, and he said he really enjoyed it, so perhaps it will be a regular thing. I'm also probably available for weddings, bar mitzvahs, funerals... Just talk to my agent.

One thing I don't understand is why England Athletics gave me a card to prove that I'm a guide runner.  They were really fussy about the picture too, so I've ended up with one that I took in a meeting room at work to meet their required standards, and as a result I mostly look cross.  There's some tiny print writing on the back too, indicating that I've been CRB checked and have qualified to guide.  I'm not sure how they're expecting this to work with a runner who is visually impaired: am I supposed to read it out to them and describe how I look in the photo so they can do the touching-your-face thing from the Lionel Richie video?  I'm not convinced that they've thought this all the way through....

Wednesday, 18 May 2016

bad head...

I’m usually fairly blasé about my injections. I suppose that might sound a bit odd when you consider that it involves putting a 2 inch needle deep into the muscles of my thigh every week, but it’s just something that I do.

I’ve been injecting since the summer of 2009, and I’ve injected in all sorts of places: outside a tent in Etosha National Park in Namibia, in a campervan on the Great Ocean Road, in Cambodia, Vietnam, Canada, New Zealand, California, Milton Keynes… all sorts of places. One thing that I have learnt in that time is that it's surprising and maybe a little alarming how easy it is to take these needles through customs. They can’t be stored in the hold of an aircraft because of the danger of the liquid freezing, so I have to carry them in my hand luggage. I used to ring ahead to warn airlines, but I don’t bother anymore because they're just not interested, and the only customs officials who ever asked to look at them were the ones in Hong Kong, where the doctor’s letter I always carry seemed to reassure them that I was legit. Given that they won’t give you metal cutlery on a plane (unless you turn left when you get on board, so my wife tells me), it’s maybe surprising that they don’t care more about a big needle, but there you go.

It’s just a part of my routine and I don't want it to be any kind of a drama. Some people stop injecting because they can’t deal with the side-effects, which can apparently be pretty horrendous, but I’ve always been fine. I take a couple of paracetamol and some ibuprofen before I inject and then think nothing more of it. As long as my quarterly blood tests show that it’s not affecting my liver function, we’re all good. It’s not as easy for some people, and as well as injection site problems, people report terrible headaches, shakes, sweats and general flu-like symptoms. The worst I usually get is the occasional gushing vein and a general feeling of weakness the morning after… not very nice, but nothing I haven't been able to handle.

I injected last night as usual, but when I woke up this morning, I felt terrible…… thumping headache, aching muscles and eyes that felt as though they were filled with glass. Even my eyes hurt, for goodness sake! As I struggled my way out of bed to get ready for the cycle to work, I realised that I’d completely forgotten to take any analgesic before turning in after my injection. So, for the first time ever, I was feeling the full force of the side-effects.

…well, I’m never doing that again.

Ugh.

One of my neurologists suggested to me a little while ago that I should maybe think about removing that dose of paracetamol and ibuprofen from my weekly routine as I probably didn’t need it anymore. I ignored him, mostly because the same guy also told me not to be afraid of using the same drugs to help me manage my symptoms. Judging by the way I felt this morning, it looks like it’s a good job that I didn't listen.

I just can’t imagine waking up feeling like this every single week the morning after injecting myself. This, after all, is a drug that I take because it’s hopefully slowing down disease progression. There’s no real way of proving if this is actually working, so I imagine I’d get bored of injecting it pretty quickly if this is how it made me feel.  Who would do that to themselves? I might be stoical and phlegmatic, but I'm hardly an idiot.

And it started raining just as I pushed my bike out of the door to head to work.

Of course it did.

Wednesday mornings - so often the morning after the injection the night before - have not really been my favourite time of the week over the last few years.

Monday, 16 May 2016

it's such a feeling that my love, I can't hide...


I caught myself walking around the office like an old man this afternoon: my legs were tired and I seemed to be hobbling around with a stiff-hipped stagger.  Someone saw me and actually asked me if I was okay. This is happening more often.  It's perhaps understandable when you've run twenty-odd miles the day before, but a little bit more worrying when you haven't done anything at all the day before.

Still, given that I went out this evening and ran a comfortable 4-or-so miles at a decent pace, I don't really feel as though I've really got anything much to complain about.

How about, instead of grumbling about something that isn't -- for now, at least -- impinging on the way I choose to live my life... how about I talk about a symptom that might be invisible to you, but that has a subtle impact on me and the lives of the people closest to me?

Whilst I was out on my run this evening, I saw a middle-aged couple walking along the river in the sunshine holding hands.  It was nice, but it made me realise how little I hold hands with my own wife.  I used to quite like holding hands.  It's a simple gesture of affection, but it means so much and I barely do it any more.

Why? Because I've lost sensation in my hands and because it makes holding hands feel weird.  Not nice: weird.  Imagine that.  It was such a nice thing to do.  You totally take it for granted until it's gone.  I wish it was otherwise, but that's the way it is. This same loss of sensation also means that I am starting to struggle with some of the little things that require finer touch control, like the ability to do up the top button on my shirts or the buttons on the end of my duvet cover.  Not really a big deal in the grand scheme of things, I suppose.  In fact, in spite of all this, I still consider myself to be lucky, because my younger brother's MS has robbed him of much more sensation in his hands and he has to use a special keyboard now just to be able to operate a computer.  As ever with MS (or anything in life), you never have to look very far to find someone worse off than yourself, eh?

But yes, I don't really like to hold hands anymore.  In some ways, I find it easy to cope with some of the bigger things that MS has to throw at me... but tonight it's the little things that feel like the biggest loss.

Thursday, 12 May 2016

lord above...


When Nadiya Hussain won the Great British Bake Off last year, people went a bit crazy. We live in a time when many (stupid) people associate Islam with terrorists who burn people in cages and blow people up with homemade bombs… and here was a lovely, charming lady in a hijab baking cakes in a big tent. She seemed nice and loved her family and everything.  Imagine! And she won! Well done Britain. What a bloody lovely, inclusive country we are, etc. She even baked the bloody Queen a cake for her birthday. Well, for one of her birthdays, anyway.

Lovely Nadiya, living embodiment of how wonderful Britain is, has been given her own TV show. It’s called - working title at least - “The Chronicles of Nadiya”.

Do you see what they did there?

Well, perhaps it’s just me, or is it a tiny little bit odd to name a show presented a Muslim after a series of books that are well-known Christian allegories? Aslan is JESUS, you see….

Am I overthinking this and just spoiling some REALLY CLEVER WORDPLAY, yeah?

Maybe she just presents the whole thing from inside a wardrobe surrounded by fur coats.

I’d watch that.

Monday, 9 May 2016

the dead man's hand again...

Perhaps it’s my age, but I seem to be accumulating medical specialists at an alarming rate at the moment. Naturally, a good deal of this is associated with my MS... but over the last six months, I seem to have acquired several more appointments with various consultants in treatment centres around Nottingham that are nothing at all to do with multiple sclerosis. In a way, this is great news: the longer my MS remains stable and relatively low maintenance, the better. On the other hand, I’m not seeing these other medical specialists just to pass the time of day.

As I was recounting my medical history to the most recent consultant as he carried out his examination, I jokingly suggested that I was beginning to feel a bit unlucky. He immediately called me on it, reminding me of the importance of maintaining a positive outlook in the face of whatever life has to throw at you.

He’s right, of course…. But it made me laugh to hear him say it because I’m pretty sure I must be one of the last people who needed to be told. I sometimes hear myself talking about my MS and I’m aware that I sometimes come across as perhaps the most phlegmatic, stoical man in the world. Perhaps I am, but the simple truth of the matter is that I fail to see the point of wasting energy on things that I can’t change. I might as well howl at the moon.  I can’t do anything about what MS (or anything else) does to my body, but I can try and control the way I feel about it. I would never have run a marathon (two marathons!)  if I had allowed myself to believe that people with MS don’t run marathons.

Actually, I think that having MS has actually changed me for the better in this regard, although maybe mellowing is just another benefit of age. I’m far less likely to rage about things now than I used to be, and I think at least part of that is down to my health. Considering MS as a blessing! Whatever next? Well, why not? It’s certainly been character building.

And the other stuff? Well, I’ve had a good innings. Chewed a few bones; chased a few cats… perhaps it’s the kindest thing to just put me out of my misery now rather than to let me suffer?

I’m allowed to joke about it though, right?

...as long as everyone knows that none of these indignities have broken me.

Not quite yet, anyway.

Wednesday, 27 April 2016

I won't do what you tell me...

#oneinamillion

Last Sunday, along with around 39,000 other people, I ran the London Marathon. 26.2 miles is a distance that demands respect and requires months of mental and physical preparation. Every single person who finishes a marathon has achieved something extraordinary.

I’m not like other runners. I have multiple sclerosis and I have lost 15% of the muscle on the left-hand side of my body and much of the flexibility in my left ankle. When I run, this weakness puts pressure through my knee and my hip; the left side of my body drops as I get tired; I begin to scuff my foot as I take a stride, sometimes resulting in falls. To combat this, and to keep running, I wear an ankle cuff with an elastic tether that hooks into my shoe to try to prevent my foot dropping. I certainly have fewer tumbles when I wear it, but the cuff scars my ankle as I run and the transferred pressure onto my foot often leaves me with pressure sores and blisters. A widespread loss of sensation across my body means that I can’t feel my feet and suffer from a dislocating numbness in the muscles of my thighs. I run with a distinct lurch as my body tries to protect my weaker side and I have to grit my teeth to fight off a fatigue that goes beyond tired muscles; I wake up in the night as the muscles in my legs spasm and cramp.

Frankly, it’s amazing that I can run at all, never mind finish a marathon. Why do I do it? Because every run I complete is sticking two fingers up to this horrible condition; proof that I might have a progressive neurological condition with no cure, but that I haven’t let it beat me.

I’m not dead yet.

I’m not a fool and I know what this disease can do. I’ve been in enough MS clinics to see the walking sticks and the wheelchairs and to know that I’ve been distinctly lucky so far. To many people with MS, a marathon is an impossibility. To some, it’s a triumph just to get out of the house. Together with my wife, I’ve raised nearly £12,500 for the MS Trust this year. That’s a humbling amount of money that will make a massive difference to the lives of people affected by MS. As well as running this marathon for myself, I run for them.

Take that, multiple sclerosis.

Thanks for being part of our journey at the 2016 Virgin London Marathon.

You can still sponsor us here: http://uk.virginmoneygiving.com/TCMS

Friday, 22 April 2016

here we go again...

When I was asked to be one of the official bloggers for the London Marathon, part of the deal was that I submitted four or five posts in return for the free stuff they were going to send me.  Fine, although to be honest, I would have done it for nothing.  They don't seem to be very organised though: they were slow to get started and took ages to get posts up after they were submitted.  Not the end of the world, but a bit annoying.  After a long delay between the posting of my first and second posts, we agreed that I would submit a post for the week before the marathon, and one just after.  Well, a week after submitting my penultimate post, it still isn't up.  Well, bugger them.  I'm putting it up here because it's really to be read before the run.

So here it is:

-

With less than a week to go before the big day and as the taper kicks in, my mileage is coming right down to make sure that my legs are fresh and ready for the challenge ahead of them. But you know what? Tapering is hard! Daft though it sounds, after months of slogging through ever-increasing distances, stepping that distance down is surprisingly difficult. There’s a fairly large part of me that feels vaguely guilty that my last ‘long’ run will be no more than 6 miles. After all, it was only a couple of weeks ago that I was running 22 miles; it barely seems worth getting changed into my running kit for something as short as a measly 6 miles. And yet…at the same time, those 6 miles seem disproportionately difficult, with every muscle feeling heavy and every step along the way little more than a sluggish plod. If it’s this hard now, how on earth am I going to find the energy to run 26.2 miles on Sunday?

You’d imagine that running was mostly about how much strength you have in your legs, but the simple truth is that it’s at least as much about mental strength. As the novelist and keen amateur marathon runner Haruki Murakami astutely observed, “Pain is inevitable. Suffering is optional”. It doesn’t matter who you are or how hard you’ve trained, at some point during a marathon, you’re going to hit some sticky patches and you need to be prepared. What gets you through those difficult moments is your determination not to stop, to keep going no matter what. Did you see Eddie Izzard running 27 marathons in 27 days? It was an extraordinary undertaking from start to finish, but watching the documentary, the thing that struck me the most was Eddie’s steely focus on putting one foot in front of the other, however much it hurt and however much he wanted to stop. I’m only running the one marathon, but the mental approach is the same.

My motivation to keep going when the going gets tough? I’m humbled by the generosity of the friends, acquaintances and total strangers who have helped us raise money for a cause that is close to my heart. We raised £7,200 for the MS Trust in last year’s race, and when you factor in gift aid and suchlike, this year we’ve already raised more than £10,000. We've been lucky to have the support of Virtual Runner, but what's really floored me is the generosity of those people who sponsor us, or who buy a raffle ticket for the chance of a rubbish prize or who put their names down for a finishing time in my sweepstake that they know I haven’t got a chance of making. The MS Trust is a fine charity and I'm proud to be raising money for them, but the reason I keep putting one foot in front of the other is because of the faith people like you are putting in me. Thank you.

Of course, you can still sponsor us!
http://uk.virginmoneygiving.com/TCMS

See you on the other side!

-

So, there it is.  I imagine that it will go up on the London Marathon site at some point, but it seemed a shame to waste it.  Consider it an exclusive preview.

All that remains now is to run the bloody thing.

Thursday, 21 April 2016

straight for your heart...

So, with that very gentle 2-miler, and after around 500 miles of training since Christmas, that's marathon training done!  There's now just the small matter of the 26.2 miles from Blackheath Common to the Mall on Sunday to go now....

Around £11,200 raised too, which should help keep me going along the way.  And look what arrived in the post today too.....


I guess there's more than one licensed guide runner in Nottingham now, so Pete is going to have to come up with a new brag.  I'm sure he'll think of something.

Wednesday, 20 April 2016

do it anyway...

Someone asked me the other day what my preferred weather would be for the marathon.

Hmm. Probably sunny but cool, but the honest answer is that it really doesn't matter. If training over winter has taught me anything, it's that you get the weather you get. If you have a 10 week midweek run in the training programme and it's dark and throwing it down with rain, then you still go out and do the run, don't you? I do, anyway.

If there's one thing about Sunday that I can't control, it's the weather... so it seems like a waste of energy worrying about it.

That said, this is ridiculous:


I guess I'll be packing a woolly hat and gloves that I don't mind throwing away, then.

Maranoia (n.): Fear of something going wrong (illness, injury, etc.) in the weeks before a marathon.

We've passed £10,000 in our fundraising, by the way.  Thanks for all your support and there's still time to donate!

http://uk.virginmoneygiving.com/TCMS

Tuesday, 19 April 2016

sing, sing, sing...

Sunday was the climax to the Spring season at choir, with a big concert at the Lincoln Performing Arts Centre.  The choir actually did two performances on the day, but I only sang in the matinee because I'm currently mindful of how much energy I'm expending in the build-up to Sunday's little run.

It's all about the bass....
The concert went really well, and we played to a packed auditorium, but it's been a bit of a bumpy season: I was initially quite keen to sing a solo, but for various reasons, decided not to go ahead with it... and with hindsight, I'm really glad I didn't.  It's not that I don't think I'm capable of singing to the standard required, it's just that I think I'd underestimated how much of my mental and physical resources training for the marathon would take this year.  Much more than last year, anyway. 

I've really enjoyed singing with the choir over the last year or so, and part of that enjoyment comes from the fact that you have to put in a fair bit of effort to learn your part well enough to be able to sing it without your book.  It's easy enough to turn up to rehearsal each week and sing, but to take it up to the next level, you need to be able to take your nose out of the book and commit to following the prompts of the musical director.  To do that, I find that I have to spend an awful lot of time listening to the rehearsal tracks of my part, downloaded onto my iPod.  If you listen to that enough, you start to learn your part, which is especially important if your part doesn't follow the tune, which is usually the case as a bass.  It really needs to be second nature.. which is actually pretty hard, especially if you know the song you're learning.

This season's songs included several that I thought I knew really well.  Probably the hardest was "The Sound of Silence" by Simon and Garfunkel, which is a great song but I had to work to actually learn the lyrics and to learn which bits I'm not supposed to be singing.  Even a song as seemingly simple as "Here Comes The Sun" turns out to be a bit of a nightmare of changing time signatures, requiring concentration to get right.

The net result of all this is that I basically listen to nothing by my rehearsal tracks for weeks.  This means that one of the greatest joys of finishing a season is that I get to listen to something else!  Since last Sunday, I've worked my way through some Muse, some Guns n"Roses, AC/DC, Soundgarden, a bit of Iron Maiden, Black Sabbath, Beastie Boys....

...the bad news is that the new choir season starts in exactly a week's time.  The rehearsal tracks are actually already available to download, but I'm just nowhere near ready to make that sort of commitment quite yet.