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A Tale of Two Cities

“My life has been full of terrible misfortunes…..most of which never happened”

I am 50, with MS, a tumour and moderate to severe clinical depression. But I run. A lot. Sometimes I have to run with the dogs. Sometimes I run for other people. Now and then I get to run for me. Those times are precious and can take on meaningless significance. Meaningless to anyone but me.

I am driven by the fear that tomorrow will be different. That my body will fail or my mind will break. It creates quite a focus considering in most ways I am lucky. My MS seems to be of the ‘diet’ variety. My tumour, the wonderful Nigel, sleeps. And the dogs can be run off, scared away. They are just dogs. But the fear remains and it is the fear that causes more damage than all my co-morbidities.

When I run for me the focus changes if I am lucky. And I was lucky in Leeds a couple of weeks ago. The Woodhouse Moor Parkrun, the first to be formed outside London, was a wonderfully friendly affair. Almost 400 people, my atheist church, came to worship. People came from as far as Dubai and the run was perfect. With that many people I found my rhythm within a few hundred metres.

For non runners that will be meaningless. For those that do, you will know what I mean, that perfect balance between pace, breathing and heart rate. It’s when running is a joy. When all you can do is run. By accident I went so fast I got my first ever sub 20 minute parkrun, stayed for the Red Welly Relay (you will have to look it up) and walked back to my hotel before heading off to York for this year’s Sprint Triathlon.

Readers of this blog know I have an affection and history with York. However from the overpacked train (York has a busy horserace track and it was a race day), to the slow puncture (thank you Fulford Cycles for fixing it), to the botched room at the inn it seemed nothing was quite going to work. It’s a beautiful place full of happy memories but, once again, I failed to hit the 69 minute target to finish the triathlon. Last year I had the excuse that I couldn’t find the bike in the transition area (twat). This year I was just….preoccupied. Once again I failed.

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The journey home didn’t help. I lost my kit bag which had huge sentimental value for me. It was my Dad’s who died a while back. And I had another course of steroids to start on the Monday after. From the high of Leeds, the events in York were…hard.

But that quote at the beginning, from the French essayist Michel de Montaigne, is the only way to focus on life. It’s shit but then there is Barcelona. Tale of Three Cities then 🙂

See you all on the starting line at Selva de Mar in October.

Who Let The Dog Out? From Salisbury to Slough Part One.

The dog returned recently. Unexpected, unwanted but scratching at the door never the less. By some reckoning 50% of the inglorious MS tribe suffer from depression and other mental issues. When your own body decides to take against you it isn’t always easy to ‘be positive’ and ‘cheer up’. The random nature of the condition and how it can eat away not just at your physical frame but your sense of self can be overwhelming.

Besides depression isn’t being sad it’s being empty, stateless and wondering where all the air went. My dog isn’t evil but, as I get older, the frequency that he returns is perhaps of greater concern than the fact he exists at all. I did years without him, then a year, now months. I joke that I run to get away from my condition, sprinting from MS. I realise the truth may be more prosaic. My life has been constructed to survive the hole in my psyche. Running is just the latest attempt to find a way of filling the black hole.

It’s a little known (and less interesting fact) that I have a qualification in astronomy. I should know you can’t fill a black hole. It just keeps taking. I prepared for the Salisbury 10 mile with my dog who just wanted to drag me into that hole. I trained with the dog yapping at my heels, I did weights and stretches and wondered why I was there at all or if I was there at all. If you run long enough and hard enough you can gain a certain peace or at least ‘quietness’ through exhaustion. But then the day returns.

I am not running away from anything or to something. I run because the very act is an act of defiance. I run because it is my best hope of making a statement of independence. And as I finished Salisbury, in a shit time, the dog seemed further behind than recently, the hole smaller. The race hurt, the photo not of a man enjoying himself but trying not to stop. Dead stop.

Salisbury 10ml – 9.4.17 – www.salisbury10.salisbury-arc.org

Over the years I have met a number of people with depression. An ex once took her life, I was attacked by a man with an axe, I had a ‘stalker’ for a while. Depression surrounds us all, laced through society with ease. I have come to the conclusion that is why we don’t see it. It is the background noise to our lives, like elevator music but with the elevator only going down.

And that is the most important truth for me. This isn’t MS related. I have had depression far longer than MS. I just didn’t see it.

Seasons Greetings

The beginning of March is a milestone for me. It has become my end of winter, the real beginning of the year. In the UK we have four seasons but for this long term multiple sclerosis ‘sufferer’ there are only two to three seasons. My calendar is shaped by my elective treatment and my need to squeeze the last of me, to poke me with a stick and watch me yelp. Well, sort of.

Read my blogs, I take an unconventional patient pathway for MS. Three times a year for over a decade (with a short break for bad behaviour) I have hooked myself to a steroid drip. The evidence behind this is weak in many ways based on a old Italian study and some distrust by me and my then consultant on the structure and execution of original interferon trials. A ‘cure’ looking for a disease a friend once joked to me. This blog is not a critique of trial design for long term chronic conditions (is two years data really enough?) more of a social observation of how we are shaped by our treatment.

Winter, spring, summer, autumn, Vivaldi’s inspiration and how most people unconsciously mark time. I, however, have unconsciously divide my life into three; March, July, November. In the first week of each I head towards my local NHS trust for my choice of elective treatment. I have been doing this for over 12 years. My life quickly became organised around it including work. Well almost. There was one ‘famous’ occasion when I had to present to a board pretty much off my marbles but no one died and the fact I did it in iambic pentameter still gets talked about today…Plus the time I ranted at my boss for so long his first words when I took a breath were “go home”. Actually, I might not have been on steroids for that one 😦

The point remains. Multiple sclerosis changes you (obviously) but the treatment as much as the condition. The rhythms of a ‘normal’ life become bent, your life out of shape. Every treatment has side effects which themselves must be treated or at least managed. Doctors understand disease, the difference between acute and chronic. Even if they can’t feel your pain they can see it. What they can’t do is see your life.

And my life has changed again. I suddenly realised I don’t even have three seasons anymore. Steroids have complications and I have a number of co morbities anyway. As such I exercise, perhaps to the point or close to self harm but then I have to run. Not to regain my lost youth or to remind me of the man I was before MS. That man was pretty much an unreconstructed w*nker. I run because as my lungs burst I am reminded that they still can. That has meaning.

So before every steroid session I run a race. This year the Milton Keynes 10k (just gone), July the York Tri then before November the Great South. I have noticed that July no long registers the way it does, only March and November seem to. Because March is when the mornings begin to lighten and November when the evenings disappear. March is the first race of the year, November when I bind my wounds and look for a long winters nap. I only have two seasons now; light and dark.

Managing MS and my decline, managing the co-morbidities and the regime to counter the worse effects of the treatments means my life is now governed as much by run routes as formal patient pathways. But they are all intertwined. I need three steroid sessions, two opposing seasons but just one wish. To be allowed to be the patient I wish to be. 

And 42 minutes 26 seconds at the Milton Keynes 10k. Fuck you MS.

Bugger BrExit

Firstly, this isn’t a political blog. It’s about running with MS, a small tumour called Nigel and a brain that is ever so slightly out of whack. But no man is an island and recent events have added greater impetus to how I spend the time I have left. All of us are counting down to the end. For some of us that clock is louder and may jump a few steps ahead with little warning.

With limited options ( I can’t drink myself catatonic, I have kids that deserve a semi sane father etc) I have taken to exercise and (hopefully) evidence based nutrition. I get that my kids call me the ‘sugar nazi’ and I look forward to the day when they realise asking them to eat less cake is in no way comparable to Belsen but I digress.

In a week where Trump finally got his little hands on the big nuclear codes and Theresa Maybe outlined her plans for BrExit, a prosaic thought entered my head which may affect the next couple of years of races. We live in a connected world that will become less connected in a couple of years time. I have run in Ireland and Italy and have done the Barcelona Triathlon for a number of years now. Tourist events have always been the most challenging and the most fun. Not speaking any language apart from English there is something magnificently stupid flying somewhere and trusting to luck. It simply isn’t true that ‘everyone speaks English these day’ as I found out to my cost when the Barca Tri had shifted its racking area and I really didn’t know where to go…

But I digress (AGAIN). I am 5o this year and was considering whether I should throw caution to the wind and sign up for the Great Ethiopian Run. It is considered one of the great Great runs, if that makes sense, and it seemed a wonderful late 2017 celebration of my birthday if I make it that long as a viable entity (terms and conditions may change). The problem, as always, is medical insurance. Africa poses its own challenges for travellers and as a man with multiple sclerosis, a Nigel and zzzzzzzzzz.

I know dull, I do go on about it :). Insurance for Ethiopia would be difficult and expensive to cover everything.  The risks of running a high altitude race with insurance exclusions seem daft even by my levels of stupidity.

BUT I DIGRESS AGAIN. I got to thinking that maybe Europe was enough for me. Then I got to thinking that maybe Europe was about to become my new limit. Because Theresa Maybe is about to add not just unnecessary trade barriers, nor restrict freedom of movement beyond what any sentient being might think the referendum indicated. Nope she is going to take us to a place outside the EU (fine, done deal) AND outside the European Economic Area (EEA) too.

EU, EEA erm…..It seems such a minor thing. An extra letter on another acronym. However for this aging scrawny bag of bones it is meaningful. The European Economic Area is not the EU and was not on the ballot paper. The EEA is the area in which the Agreement on the EEA provides for the free movement of persons, goods, services and capital within the European Single Market. That’s all the EU members. And a few other countries too. But apparently we are leaving it anyway.

So what Rusty? The E111 European Health Insurance Care, the EHIC, that’s what. The EHIC which creates reciprocal health care arrangements throughout the EEA, not just the EU. If we leave the EU there are many futures. If we leave the EEA as well one of those futures includes travel insurances premiums looking hotter than that final 5k sprint on Selva de Mar…

BrExit might be a fantastic adventure. But it’s difficult to get adventurous when you can’t get affordable travel insurance.

Bugger.

BrExit.

Has running become a new co-morbidity?

I am sitting in the conservatory, frost turning the windows from transparent to translucent. The heat has quickly left my tea but I am not moving, considering something many people have hinted at recently. Is my exercise routine a help or a hindrance? Are the running and the triathlons keeping me on the road or causing more problems? If exercise is an obsession has it become my latest co-morbidity?

The case for the prosecution is clear. I now spend more on entry fees, kit, physio etc than I did on booze before the Great Immune Attack of 2014 removed my ability to be a happy yet ineffectual lush. I plan holidays around running terrains and the possibility of races whilst away. I have become a running bore and can debate the quality and effectiveness of different carbohydrate gels whilst anyone standing within a three metre radius weeps with boredom. I have pushed myself so hard I have begun to damage my knees. Am I running to stand still, to keep the MS at bay, or have a discovered a subtle way of self righteous self harm?

The case for the defense is simple. Exercise, MS or not, is essential for a long and happy life. We have become a sedentary species, us English, the complications of which may become too expensive to comprehend. Many years ago I had a coffee with the Director of the Institute of Ageing at Oxford. She was expansive in her views that we were the ‘sandwich’ generation, our parents battling dementia, our children diabetes. We need to exercise. My neurosurgeon, who keeps a watch on my friend Nigel nestling at the base of my spine, has shown me the MRI detailing the current state of play of each of my thirty three vertebra. The wear and tear was obvious. When I asked her whether I should stop running the answer (with respect to my back) was no. Doing nothing would create bigger problems still.

I have lost three stone over two years and many people who I use to work with recognise only my voice now. I am guilty of a level of obsession, that is true, but I believe (mainly believe…) that is no more than a side effect of being human rather than a new co-morbidity. Some people go bird watching, others have more shoes than cupboard space. I run. A lot.

But but but…nothing makes you think more than sneaking out the house early on the 25th of December to go to a Parkrun whilst your sons slumber the first moments of Christmas Day without you. Even if it was a seasonal best at 20 minute 43 second.

Ho ho hum.

Continuavano a chiamarlo Trinità

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What is it that makes a man, defines him?

Before you run away this is not going to be some BS blog about the glories of manliness and how the great feminazi conspiracy has kept me from my rightful place as pack leader. I am a white middle class middle-aged bloke living in the South East of one of the most prosperous countries on Earth . There is no glass ceiling based on my chromosome count, more of a glass platter with some rather good cheese on…

What makes a man then or at least what traits are more likely to be evident in men than women? Two things come to mind but this blog concentrates on one – our love of numbers.

To be clear I don’t mean maths. I have two kids. One loves the subject the other abhors it but both love numbers. They love to quantify things. I still chuckle when I remember taking a group of 9 year olds to football practise a while back and listening in to an argument over ‘favorite moons’. They were all compiling verbal lists and collating a winner (Phobos since you ask, my vote for Europa roundly ignored…).

Men tend to love to quantify, to measure, to number. This maybe no more than conditioning. From an early age we look at league tables and memorize sport stats. I don’t believe or pretend this to be an exclusively male trait but it seems heightened within us or within the men and boys I know.

And within me as I am utterly driven by ‘threes’.

Nothing exists until it is repeated, done or measured three times. Once? Pointless, a single point on a curve. Pah. Twice? So what, a simple echo. Three times…..ooooooo….ding dong.

I use to think that this was an affectation of my (failed) training as a biologist. Three is the smallest number any meaningful statistics can be performed on and then only just. My doctorate, written mainly in the alcoholic afterglow from the Jabez Clegg or Mantos, was littered with data points repeated 3 to 5 times. But as I said I think the need to count, to replicate, to quantify runs deeper than that. It is a defining characteristic.

My MS wasn’t real until the third attack. I couldn’t process the spinal tumour until the third scan (which I paid for myself). I could go on.

But the same applies to my running and triathlon. I have run 5k races timed under 20 minutes only twice in my life. But I will not call myself a sub 20 minute runner until I hit it three times. I can retire from half marathons because I ran three under the target I set (90 to 99 minutes). If not, knee problems or not, I would keep trying. In my head all that the Great South Run in 69 minutes means is I now have a target. At least two more 10 mile races that have, just have to be under 70 minutes. I’ve already signed up to Salisbury in April and the Great South again. My MS and comorbidities means I push the pace a little. Get the trinity done. Move on. Tomorrow it may not be possible.

This post was to celebrate but also to explain the last 6 weeks. To fund raise for Asthma UK I set myself three challenges. The Great North, the Barca Sprint and the Great South. It hurt. It was stupid. But if it wasn’t three challenges, it wouldn’t have been a challenge at all.

That’s it till the new season. An early Season’s Greetings and see you at the starting line at Milton Keynes in March.

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Breast(stroke) is best…

It rained, it was cloudy but, by fuck, it was good.

Having changed sponsors from Garmin to Santander apparently mid-stream the organisers had made a number of changes to the triathlon this year. Normally it has been a festival of sorts, lasting three days with the race on the Sunday. But a more subdued organisation prevailed this year, opening quietly on the Saturday to pick up race packs, roads being closed late Saturday night and the dismantling of the course by mid-afternoon Sunday.

In the past they had separate racking areas for those doing the Olympic distance to those doing the Paralympic (sprint) and super sprint races. This year it was all as one which was cosy. Whether that meant that less people had signed up to it I don’t know. It felt smaller and the course slightly different. Add to that pot I couldn’t hire the bike I wanted and had to accept a heavier one and my ongoing knee injuries I approached the day a slightly diminished figure.

But there are certain things that raise a smile. For some it’s the smell of freshly baked bread. For some it’s that first cup of tea in the morning. For me it’s racking the bike (heavy or not) and heading towards the water’s edge.

 

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Second wave. Far too fast for a rusted out bag of scrawn like me. An estimated time based more on a moment of hope than experience as I entered all those months ago. Second wave, expected time between 70-80 minutes for the Paralympic distance. With my bones and based on realistic expectations, 100 minutes made more sense. This was not a moment of self-hate on the sea shore. I remembered that I can’t really swim…

Yup. My eye sight is so bad (minus 10 or so *coughs gently*)  that I have to swim with glasses. You can get prescription googles but at that strength they bend reality as well as light and the one pair I tried (custom made) leaked. Pointless for swimming over any distance. Swimming with glasses means one thing. Breast stroke. Slow, ponderous but gets you there in the end.

In pool triathlons I end up starting way back on the list as, for the uninitiated, pool triathlons have staggered starts with competitors ranked by estimated swim speed and separated by 20 second intervals. Not a problem. I know my place…

But my optimism when I entered the triathlon earlier in the year was coming into sharp relief standing in the sand. Second wave (out of eight I think); would I even finish the sea swim before the last wave?

The sea is a cruel Mistress someone once said (God, I’m eloquent….) but she is also a great leveller. Freestyle may be faster in a flat pool or calm lake but many of the Catalan triathletes ended up attempting to swim through the water whilst end (up to a point) skimmed. I can’t swim, I really can’t but I wasn’t last to get the shore from my wave and only one or two from the wave behind caught me. I actually passed a couple from the first! I fell onto the shore and with little breath and less composure managed to make it into the stadium and pick up the bike.

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I realised two things. Firstly my knees were holding up. Secondly I hadn’t adjusted the bike straps for my trainers making me Dr Twat, Head of Twatology, Cretin University. Having wasted a minute (crucial in a sprint) trying to adjust the pedals with cold non-functioning hands (thank you multiple sclerosis for removing working opposable thumbs when cold) I legged it with the bike to the next stage and pedalled as fast I could without the extra power and speed strapping would have allowed.

Twenty uneventful kilometres later (save for a drafting argument in a language I don’t speak over a rule that makes little sense for this tri) I was off on the final sprint. And, as per normal, passing many of those ‘better’ swimmers earlier. Paced by a young Catalan lad (thank you 1984 your time is most definitely not up) I crossed the finishing line in a personal best of 82 minutes and 15 seconds. With this body, riven with an angry immune system and uncertain spine let alone aged knees this was an excellent result.

 

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What threw me (and still does) was my run time. 5k in 19.47minutes. Formally timed and perfectly formed, only the second time I have run 5k in under 20 minutes in an official race. Maybe I am more second wave than I thought.

Next stop the Great South in under two weeks. Will my knees hold?

Watch this space…