Author Archives: Man of Rust

About Man of Rust

Too many years with MS, too few years to go...

It’s Been Emotional

So every story has its ending. This, my friends, is mine.

It seems unlikely that I will be able to run again, at least not at speed and not for any meaningful distance. I have loved running (a sentence I never thought I would write). It helped keep the dogs at bay, gave me a sense of self. I was, for a short while, the Man of Rust.

There is no irony in the fact that I have now rusted, worn a piece of me to the point of no return. There is no irony that the MS has not caused my immobility but my attempts to run away from it. It’s just life.

An earlier blog talked that my life is governed by numbers. It’s true. But the most important numbers are no longer getting 5k in under 20 minutes (I did that twice) but the following. 4 and 7. The years til my boys reach an age that in theory they can stand on their own two feet. Men. Well, trainees 🙂

I have used running and triathlons to keep me going, as a way of feeling that I have some form of control. It was always more Canute than clinical but it worked. Now I need a new ‘stabilizer’ and this blog has run its course.

See you on the other side

Love ‘n’ hugs

MoR

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Hipster

“It takes a village to raise a child”

An old African proverb, perhaps most famously used by Hilary Clinton as part of a much earlier run for the White House than the recent clusterfuck in 2016. It always struck me as such an eloquent way to sum up a simple truth. I am a function of the parts of every place I have lived, from (what was then) often described as Britain’s ‘gun capital‘ to a city more Hogwarts than Dirty Harry.

In many ways my village was not and is not a place as such. I was born in the NHS and live and thrive¹ by its grace.  Does anyone not? Does anyone get to become scrawny and old² without using it or needing it? Even those that hate the concept and only go ‘private’, use social insurance (look it up, it does exist) or just smell to get well (FFS…) will still be using the NHS. Our system trains the doctors that work in public and private systems and revives those that take cures what ails them based on organic frog spawn³.

Our healthcare system is a living embodiment of that old African proverb. You may say “Come on Rusty you’re not a child anymore” but I am male. As an ex once said “There are many boys, some blokes but very, very few men”. I’m still a big kid 🙂

And a big kid with MS….well you know the drill. If it’s not the co-morbidities that hurt it’s the treatment and lifestyle to counter them that do. My running may have finally got the better of me. At the recent Bearbrook 10k, a hilly race that I totally misjudged the pacing of, I managed a PB of 42 minutes 3 seconds. In the final 500m I hit a wall (mental not physical) and struggled over the line.

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More annoyed than pleased I at least went home thinking job done, holiday time. The day after, my left hip stiffened up dramatically, an episode I just reduced to over exertion on a tough race and age. It was still ‘runnable’ and I would take it easy on a two week break in the sun.

Forty degrees and counting wasn’t perhaps the best running weather but the countryside was glorious in Spain and the hills begged to be touched. I stuck to a 5 mile course early evening and the hip got no worse and actually began to improve a little. But then I can never just stick to the script.

One day I went on a new run to the lake and back and got lost. I barely speak English let alone Spanish, I had no phone, money or water. Stopping would have been futile as the heat was still in the high 30s and there was little shade. Speeding up disastrous as my adventures on a Portuguese island last summer showed (blog passim). I ended up back at base 9 miles later more foolish than thirsty, but only just.

Now I can’t run. I am a hipster and not the cool kind. My hip has gone.

Now I need my village. My physiotherapist. My psychologists. My chiropractor.

I need time I haven’t got and patience I never had.

Barcelona is in a month. The Great South just a couple of weeks after. My village will get me over the line for the first, the second I just don’t know. Maybe it’s the end. The point is it takes a village. Go find yours.

 

 

¹(terms and conditions apply)

²(other conditions are available)

³(alledgedly)

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.