More than a Feeling - Boston

Lyrics:- 'When I'm tired and thinking cold' - Scholz

Lady Coleman predicted that I'd feel a bit down after the weekend's Druid Challenge ULTRA-marathon on the ancient Ridgeway National Trail. For the uninitiated, it's an 84-mile trail-running ultra over staged over three-days, with daily distances of 29.4, 26.2 and 28.4 miles, where incidentally I'd won the Over-50 Category back in 2013. It's no wonder that I felt that way though, as post Guillain-Barré syndrome (GBS), I'm now only able to walk/jog two of the stages without causing myself a week of sleep and recovery and my times for the two days is now more than my overall time  in 2013.

I mean, I've got my pride - but then again after 1,004 marathons what have I got to prove, eh?

Well, I needed to give myself a much needed kick up the backside and a reality check so I looked back at my thoughts post Druid 2016 and into 2017. These make up 'Chapter 6' of my next book. I only did one day at the race last ear and it's interesting to see how I was thinking and how far I've covered so far in the 'GBS' Ultra.

CHAPTER 6

January 5^th was a big day for me, as it always is. And 2017 meant I was 23 years old; 23 years since I stopped drinking and went for that first run. That day still means a lot. And on this occasion, I'd been running dry for 8,401 days. Now when I see drunk people I think, ‘Yikes, I must have been like that, but worse!’ I think I did enough drinking in a ten-year period to last me a lifetime.

But the need to drink is just not there for me anymore. I'll go all the way through a Christmas and New Year period and not feel anything for it at all. It's been so long since I've had a drink that it's not even part of my life any more. I do have an app on my iPhone where it clicks over and adds a day every morning to tally up the number of days I’ve been sober which feels fantastic and very self-righteous.

Meanwhile, I was feeling elated by the fact that I'd just clocked up another marathon, my first road marathon in my running comeback. This one had been in Dymchurch, on the 3^rd December, down on the south coast near Hastings. It's organised by my friend Traviss Wilcox, another self-confessed Marathon junkie, and it follows a traffic-free, sea wall route using three flat laps. It’s a great marathon so that people like myself who are clocking up hundreds of marathons can get another one in, without the too much trouble for the Race Organisers coping with large numbers of runners, chcckpoints and road closures etc. The Dymchurch Marathon, you could say, was very much a low-key kind of event with Marathons on both days of the weekend.

In preparation, we packed the car, rounded up the children and I ran on the Saturday, while Jenny ran on Sunday. It was bloody cold out there, but really rewarding. I ran every single minute of my rather extended time of 6 hours and 50 minutes. And contrary to our expectations, even my wife who's a very competent runner said that it was one of the hardest marathons she’d ever done. I came last by the way.

But it didn't matter. I was now off the prednisolone tablets. I was in the Dymchurch marathon. And by the end of it, I’d clocked to my 980^th marathon. It was a big thing for me, especially getting off the drugs, even though no one knew what the side-effects of going cold-turkey might be, if any. You see, you try to make sense of what the Doctors say and then what the Internet tells you, but it's all so contradictory that it's hard to know what’s true and what isn’t.

Therefore, I'd decided to disassociate myself from those kinds of forums and advice websites. Reading uncertain people complain about how bad their lives were made me feel like I was drinking liquid kryptonite. I also didn't want to read about their conditions and subconsciously assume their character traits. I felt they were victims – I’m a survivor.

It's a completely self-induced mind set. But you need to be strong. It's so easy to give in. I know. I had a couple of days where I thought, ‘Wow, this is hard – give me some drugs…’ and when you add in the concerns you get from the doctor's about how not taking the steroids they've prescribed could kill you, it really gets you down. They said, ‘The steroids have helped make you stronger at the price of overriding your adrenal glands ability to produce adrenalin. If you stop taking them suddenly, you’ll die’. I'd been taking 60mg one day and then none the next in a bid to kick them and I thought, well I'm not dying on these alternate zero days, so maybe it's not as life-endangering as it appears.

What's more this drug only works in your system for a few hours. And after four weeks of taking it, your body gets used to it so it's not as effective as it was in the first place anyway. And then you're hooked on it, like an athlete drug addict, which is something I didn't want to be. So I gradually began reducing the amount I'd have to take further and further down to the point where I took my very final dose the day before the Dymchurch. And then that was it – I was off them for good.

Not that I told anyone.

I just did it privately on my own for ten days. I even kept it from Jenny, who went berserk when I told her what I'd done because she thought I'd taken a risk with my life. But I felt it was something I just needed to do for myself, in private, without any fuss. My main thought was that I didn't want anyone to correlate my behaviour with my cessation of the drugs. If I was acting tired I didn't want to be told it was because I'd stopped taking the drugs. I just wanted to get on with it.

Ironically, Jenny said to me during that period, ‘Your walking seems to be getting much better. And you seem much more with it’. I thought: ‘Hmm, that's interesting, seeing as I'm not even on the bloody drugs anymore!’

We had insider info too as Jenny’s Mother had also been on the drug for some time, however when she reduced her dose, even by 1mg, she really felt it which didn’t help my cause much. I worked out that it was going to take about 18 months to detox, when in fact the Rory-Way took me 18 days. The truth be told, I thought that everything I read about prednisone was BS really and yes, by 3pm each day I'd have what felt like chronic fatigue syndrome but luckily the running I was doing produced some natural adrenaline that it helped me– who knows.

Another thing that galvanised me was the consultant who was overseeing my treatment. He said I'd be on it well into 2017, and had explained it’s side effects like massive weight gain. I went to see him on December 19^th and when I walked into his office and he asked me how I was getting on with the drug, I said, ‘Great thanks, I've been off it for a couple of weeks!’ He wasn't surprised, he just said. ‘I’m not surprised, you're a risk-taker.’

He then checked me over to see how my physical strength was – toe up, toe down, and all that. And then he said I was fine if I didn't want to attend a follow-up appointment three months down the line as I was basically fine.

That said, coming off the prednisolone had taken its toll and by Christmas I was knackered. However, I got through it. The key point for me is that no doctor I met had experienced GBS for themselves and how it felt to be completely fucked. So really, I became the expert – as I was the one who was ‘living’ with it and having to find a way out. I was the one living and breathing the condition. I didn't need a medical crutch and I certainly didn't need an emotional one.

Every Christmas we go and see Jen’s parents. They live on the side of Caerphilly Mountain in a large house, which our kids love to run around in. Her Father Mike, is an amazing host and cooks a Christmas dinner to die for. But after you've eaten it you think, I better go for a run to burn it off. Running 20-minute miles, I was being overtaken by people out for an afternoon walk.

My performance was just pitiful.

I'd run to the bottom of the mountain, feeling broken and then head back up to Jen’s parents’ home… The level of de-motivation I started feeling was now extreme. I just thought, I could walk faster than I was running. Why was I even bothering? I was running so slowly that I looked like I was running in slow motion. People were looking at me, thinking, ‘What the hell is that guy doing?’ By the time, I got back to Jen’s parents, I was just sat there, completely wiped out.

Jen saw that and said, ‘You need to realise how far you've come. You were only in hospital three months ago’. She woke me up out of my slumber. She was right. I had come a long way. My expectations were way too high and it was distorting the truth in my own mind. She was right.

In my pursuit to be the best at long distance running in terms of clocking up more marathons than anyone else, I'm often so focused on the horizon that I cross the line of a marathon and think, when's the next one? And not being able to run up that hill was a reality check. It was life's way of telling me: this is going to be a long journey and you're back to being a novice runner again. Accept it and in fact celebrate the idea that you're even able to get a 271-meter high mountain under your belt today once you've run to the top of it. And when you put it into context like that, it all becomes a lot healthier as a perspective. It's a growth mindset instead of a defeatist one.

I didn't come to terms with this new perspective until about two weeks later even though had a great run the next day. That's just typical of life, isn't it?

I wanted to get that mountain conquered no matter how slow I took it because they in a hundred days’ time I was to run the MDS again, and I needed to gauge my fitness. Running at 20-minute miles I’d be timed out. And that would be a disaster. I'm a proud starter-finisher and to be pulled out of a race would be everything I'm against. I don't give in, I don't give up – and I don't get pulled out of races for being incompetent so that was playing on my mind.

I went for a run a couple of weeks later though – on January 5^th – and I felt in that moment like a runner again. It felt brilliant. The constant switching between feelings of feeling great and then knackered had really grated but they were now going. I was now running 10-minute miles instead of the 15-and-16-minute miles and my 5k was down to 33 minutes. My progress felt like quantum leaps, but still I wondered whether my body would be able to complete the MDS, which is what I wanted to do.

That's one of the things that having GBS reinforced within me. I don't tolerate people's quitting and whining anymore, even less that I used to. People always quit and it drives me crazy. If you're feeling it, work around it. My legs were now weak for example, so I began strength training my legs with a strength coach. Working around the problem and not giving up has always been my mantra.

The only difference now compared to before is that I'm more open to new suggestions that might speed up my progression with my health. Meanwhile when people would ask me how tired not being on the prednisolone made me, it was hard to tell. I still had a bit of mental fog going on. I'd not quite be able to remember things like I used to. The files were there in my head but they weren't instantly retainable like they used to be. I'd be giving talks where I’d normally tend to speak off-the-cuff instead of reading from a script but I didn't quite feel 100%. No one would notice, and my mental delay would only be for a nanosecond. But still, my world was foggy

Online I'd watch videos of people who'd had GBS and one was of a lady who was said to be back to herself and dancing. But as she was dancing, you'd see her drop foot and her knees hyperextend, and I'd wondered how long my recovery would take. I heard it takes about three years for your full memory to come back, and that was also a bit of a concerning.

Against that backdrop I was now thinking, wow, I'm nearly 55 years old, what am I going to do for the next 10 years of my professional life, from now until 65, when I effectively retire? You can only be the guy who’s run the MDS countless times and tell people what rucksack to take to the race for so long, so it was time to evolve.

And my thinking was, what's the next step? Did I want to become a full-time councillor, because effectively that’s what I'd become. But is this what I wanted to do for the next, and final, decade of my career?

2016 had been a test. It had been bloody difficult. But on the plus side, my change in circumstances had forced me to ask some very honest questions of myself. I'll tell you something else I learnt about myself is that you need to be aggressive in the pursuit of your goals, but you also need a plan. It's all very well going into a boxing ring throwing haymakers, but the haymakers never win fights. You can't rage against your situation with blind fury and unless you have a plan, you're screwed.

I went from wheelchair, to crutches, to walking –closing those airtight doors behind me, never looking back. I wanted my previous experiences to be locked in firmly behind me, just like I did 23 years earlier, when I went on my first run. To that end, I continued to run at 5pm every day. It was a routine I loved.

Plus, I also continued to line up the marathons as I headed towards my 1000^th marathon. As the prednisolone began leaving my system, it did weaken my spirit at times, making me wonder things I never would have previously, and sometimes it would make me think, Rory, you're on your own with this condition, even if Jenny was always there for me. It was my condition to overcome. And it was like kryptonite, but I wouldn't let it win.

What made things tougher was that I was running times no faster than I was back in 1994, when I'd only just started running. I'd also recover very slowly. I'd run a fast three miles one day and then the next day feel like I'd just run 145 miles down the Grand Union canal, which concerned me. How could I be recovering so slowly? The level of fatigue and soreness I’d feel after running really surprised me.

Yet I'm still someone who believes he can do anything, all it takes is mental conviction. I have clients for example who say, ‘I don't know if I'm going to be able to finish the MDS.’ But of course, they will and do. I also know loads of people who go to the MDS and get absolutely obliterated because they run too hard. They don't look after themselves. They don't pace themselves. They fall apart horribly in the desert. I'm lucky in that experience has taught me how to pace and look after myself. That's why I'm rarely ill other than when I'm hit with a big and unavoidable syndrome like GBS.

And for me, that was one of the emerging lessons of GBS: you need to get tougher when things get tough. And not get sidetracked with all the small things that pretend they're emergencies. For example, as I write this chapter, my son Jack is crayoning on my 4k lounge TV. He's loving drawing over the Charlie and Lola cartoon that’s on.

It’s ok though as I’ll wipe it off when he’s finished. When you've had an experience like mine and you are building your ‘Personal Momentum’, it puts everything else in perspective.

So there you go - Backside firmly kicked and a new direction in place. Even when things seem black, they are probably less black than they used to be and the dim light at the end of the tunnel will continue getting brighter the further you go.

The thing is not to give in and stop! And when you are tired - it's time to turn up the heat :-)

Amen.

Rory Coleman - rory@rorycoleman.co.uk

1,004 Marathons - 245 Ultras - 14 Marathon des Sables - 9 Guinness World Records

Location: Cardiff, Wales