New Life - Depeche Mode

This way...

Lyric: - 'Operating, generating, new life, new life' - Clarke

Song Choice - A brilliant song from the 'Boys from Essex' and Vince Clarke at his writing best, with this 1981 classic. If you've forgotten the track, take a look at a very old 'Top of the Pops' here which accompanies today's special blog - just perfectly.

The birth of a new child brings with it a spectrum of emotions and fresh hope. A whole new life ahead. A completely fresh start and a lifetime of learning and experiences lie ahead for Baby Charlie. It's really exciting. I wonder what he'll be like when he's 54. I'm not sure if I'll still be here to find out but I hope he makes the most of his new life that lies ahead of him.

Maybe it will get turned upside down as mine's been, during this past three month.

Maybe it will be rejuvenated by witnessing a 'New Life' entering one's world.

Or Maybe it will be refreshed by the realisation that sometimes it's ok for one's to be out of control and still be OK.

OK? Yes, it's OK really. In April when I was originally unwell with GBS my world felt like it was crumbling before my very eyes. The perfect 'Wall of Life' I'd built around me was falling faster than I could rebuild it and of course it came tumbling all round me. A real-life disaster movie with a headless chicken in the lead role, what a nightmare. The feeling of being out of control is something I'll never forget as well as the fight it created within me. 

And Boy did I fight...and got nowhere.

Then again, when one's world is going up in smoke in front of you, what are you expected to do?

Three months on, and the Wall is slowly being rebuilt to a fresh design with a firmer foundation and of course, hopefully twice as strong. The good news is that psychologically I've accepted that the old me is a thing of the past and I'm only looking forward to 'New Life' just like I will for Charlie. A further boost will happen later in the week when I'm moving to a smaller hospital in nearby Llandaff. There I'm going to get even more intense physiotherapy which will hopefully see me walk unaided yet. I've just got to the standing stage...

Finally Standing...

Don't ask me how long it's going to take, as nobody knows. It's going to take as long as it takes is the only answer I've got and on my part this is a good lesson learned.

If you feel your wall is falling down around you, you'll know exactly where I'm coming from. If it is don't stand in it's way. Let it fall, plan, rebuild and enjoy your 'New Life'. It might not be as bad as you fear. Take it from an expert.

More tomorrow.

Rory Coleman™

976 Marathons - 241 Ultras - 13 Marathon des Sables - 9 Guinness World Records - 6 Children

www.RoryColeman.co.ok

Time Stand Still - Rush

'Moroccan Time Out'

Lyric:- 'I turn my back to the wind, to catch my breath, before I start off again - Peart

Song Choice:- It feels strange choosing a song that's nearly thirty years old to illustrate today's blog about time standing still but the feeling of rebirth and regeneration is so slow in my world, that it does feel like I'm standing still whilst the world around me speeds on past leaving me in its wake.

The shocking thing is that actually I'm speeding along nicely at 0.5mm a day which in neurological terms is the equivalent of racing at the speed of sound. Nearly three weeks into this episode back in hospital, I'm a functioning human being again. One of today' s milestones was being strong enough to press my deodorant with my finger to spray rather than the flat of my hand. It might sound like nothing to you but finger strength is something that I've lost along with, of course, my ability to walk...

Right now, I'm just like my son Jack was a few months ago standing - I can stand, holding on and wobbling before quickly sitting down to avoid a fall. Luckily for Jack, his motor-nerves work perfectly. Mine are still getting up to speed again and on my first time of standing, the head-rush of blood and vertigo of being 6ft tall again was most weird. It was a real ‘wooaaahh’ moment.

A week on and it's not weird anymore. I've moved on, well 3mm anyway to be exact and my major effort today has been put into trying to stop my hyper-elastic knees, hyper-extending when taking a few steps with a frame, ouch! They'd better soon co-operate, otherwise my cruciate ligaments are going to start squealing. I'm also rebuilding my quad and calf muscles by cycling which is now a daily routine… 

Watch out Sir Bradley!

In fact, there's now a lot of physical activity in my world again; this time in short sharp bursts followed by lots of rest and as much protein as I can absorb to help the recovery. I needed more than a good forty-winks after cycling six miles this morning!

There's a lot of mental activity too as I'm editing my book and reliving my early running adventures, which is great for the soul. If I apply myself to getting well again as I did in my early years of running, I'll get there eventually. I can't be more focused right now and my concentration is in full 'Coleman Overdrive'.

I'm lucky now to 'Stand Still' and in 'Time' will be making each sensation a little bit stronger just as Peart's lyrics say.

That's the beauty of a 'Time Out', even if you haven't chosen it for yourself. It makes you appreciate the things you take for granted, especially if it's just a simple aerosol squirt using your finger.

Is your 'Time Standing Still?'

Rory Coleman
976 Marathons, 241 Ultras, 13 Marathon des Sables, 9 Guinness World Records

PS - There's still no Baby yet :-)

Watercolour - Pendulum

Lyric:- 'Feed the fire, break your vision, throw your fists up, come on with me' - Swire Thompson.

Song Choice:- What could be a better fit for today's blog than the amazing 'Watercolour' from my current, favourite band...Pendulum. Have a listen here to see what you've been missing.

There's something anthemic about their tracks which I love. And after a week of editing my book and reliving some of the things I've done with my life, I'm enjoying the journey all over again. It's been like meeting old friends or viewing some past masters that I've created or  painted.

That's where the 'Watercolour' part comes in and the whole theme for today's blog came from. It came about during a conversation with a client, where she said that she missed her painting and being creative as it helped exorcise her demons.

I know exactly where she's coming from and although I haven't painted myself since my art-school days, I feel like I've been creative in a different way. Continuing our conversation we chatted about the paintings we love and have seen. I love the National Gallery and all of it's famous paintings and if you've been there you'll have seen 'The Hay Wain' in all its glory. Constable spent months putting thousands of white highlights on it to get it just right and it's a simply stunning painting.

Jokingly, to my client, I said that there must be a painting by numbers version - and there is!

And that's where my key message is for today. Sure, I've done a lot of marathons and ultras painting by other people's following a predetermined path and of course, enjoying the ride. However, it's where I've started with a blank canvas and created the mega-day marathons that have taken me thousands of miles where I feel I've enjoyed myself the most.

'London to Lisbon' is the highlight of the book so far and something I'll always be really proud of. 

The good thing is you don't have to be a good artist to be creative. You just need to think outside of the box and set your own challenge - it's extremely satisfying and it's something I'll be looking to do again in the future, if and whenever I can as there are still 24 marathons to go...

So think on, you might be a lot more creative than you think and don't need someone else's numbers to follow to create your own true masterpiece.

Rory Coleman - 976 Marathons - 241 Ultras

13 Marathon des Sables - 9 Guinness World Records - 8234 Days' Alcohol Free.

www.RoryColeman.co.uk

The amazing 'Crowd Funding' total is now over £25K...so far, so thank you, thank you, thank you.

9000 Miles - Pendulum

Well over 9,000 miles...

Lyric:- 'It's 9,000 miles back to you.' - Swire Thompson

Song Choice:- A perfect track from Aussie Band, Pendulum. Take a listen yourself and if you've ever been in a similar position to me where your mobility is suddenly taken from you, you'll understand how I'm feeling right now. It's not like being injured as there's always a known sort of timeframe to get your head around.

With Chronic inflammatory demyelinating polyneuropathy (CIDP), there's none. You just have to wait and wait, whilst the world and everyone around you races by as your nerves slowly, and I mean s-l-o-w-l-y start to wake up and grow about 1mm a day. Mine have just come out of a mini ice-age and are starting to thaw out.

But that's ok as any improvement is a good one. This isn't about walking or running yet, it's about functioning as a human being and being able to wash, use the bathroom and being able to feed myself. Conquering these feats are marathons just on their own and I'm making some ground on them and trying to be as independent in hospital as much as I can, whilst feeling safe knowing I have the experts at my tingling fingertips 24/7.

I have at least a few more weeks’ intense work here to do before I'm fit enough for rehab in another local hospital before we can work out a long term plan to eventually get me walking unaided. The amazing 'Crowd Funding' will provide the best possible outcome for me and again, I'm staggered by all of your generosity and good wishes. The total is a whopping £22,988...so far.

As for 9,000 miles, it feels like I've done that in just two weeks.

My thoughts are very positive and I've enjoyed sharing folks success at the recent 'Race to the Stones'. It reminds me of what I've done in the past and hopefully what I'll be able to do again one day. I'm only too glad I can appreciate how lucky I've been and I am as lots of folk never get to feel the serenity that I feel right now, lying typing away in a hospital bed.

Enjoy the Summer while it lasts...I'm going to.

Rory Coleman

976 Marathons - 241 Ultras - 13 Marathon des Sables - 9 Guinness World Records

1 Desire - To Walk Again

Verve - Lucky Man

Lyrics:- 'I know just who I am' - Ashcroft

Song Choice:- Long before Richard Ashcroft started believing his own press, he penned 'Bitter Sweet Symphony' and the beautifully crafted 'Lucky Man'. If you get a quiet 4.53 minutes to yourself later on, or over the weekend at 'Race to the Stones', have a listen. If you are lucky enough to be at RTTS over two days and are camping overnight, look out over the landscape in front of you and enjoy the topographic serenity of freedom that trail running can bring you. I looked at it for ages last year and it was simply breath-taking. I felt really lucky.

True I'll really miss being there this year, encouraging my Dixons Carphone Runners during their first Ultra on Saturday and onto their first 100km multi-day on Sunday. It’s sad, I’ll miss the triumphant finale to all their training as right now I have to concentrate my energy into exorcising the CIDP plague that, despite more IVIGs, is still causing me mobility problems and means I'm in for an extended stay in hospital.

So why choose 'Lucky Man' for today's song? Well because I think am. I’m lucky to have ‘Raced’ to the Stones twice already and it’s just not important right now as there’s the joy of our Baby being born next week (hopefully), and me being able to support Jenny for once instead of her propping me up all the time. What with that and the amazing family and friends supporting me with a massive crowd funding total that has simply stunned me. Who’d disagree?

There’s lots going on out there and I have a grandstand seat via a great internet connection at the hospital. I’m using it to keep my mind active and I'm watching the 'Days of Sobriety' totalizers click over for some of my clients abstaining from alcohol. I have 20, 100 and 300 days 'Since-a-drink' milestones in progress and feel proud and valued to be part of their successes.

My own 8000+ days is still one of my greatest achievements to date and luckily it's one I can maintain during the battle I'm facing over the next few months for sure. The battle is over on that one.

Knowing when to fight CIDP, when to rest and when to fight again is now becoming more natural for me as I get to learn even more about my inner resolve. As you know I'll never stop battling. Today's standing up from a sitting-down position might have taken all my energy, but it's another tick in the box and I’ll repeat tomorrow, twice. But you probably knew that anyway…

Any small gain feels like a victory, so I’m battling on, with your help with our Crowd Funding.

Rory Coleman

976 marathons - 241 Ultras - 9 Guinness World Records - 13 Marathon des Sables

Planet Earth - Duran Duran

Lyric:- 'Look now, look all around, there's no sign of life' - Le Bon, Rhodes, Taylor, Taylor & Taylor.

Song Choice:- I've always enjoyed this early Duran Duran track and the lyrics reflect where I've been this past few days as it's not been an easy time to say the least. Realising that I'm seriously ill again, and worse than my previous internment came as no surprise. Looking in the mirror my eyes just looked frightened and I'm sure I am worrying the life out of all of those near and dear to me right now.

Five days on and a lot of tests, retests, lumbar puncture (they really hurt) and five lots of IVIG and I'm safe. My Guillian Barre Syndrome is in fact the more Chronic version CIDP, yep the scary one I told you about the other day that I didn't want. My protein level in my spine was very high which is the killer blow. It's still to be rubber stamped but I know...

The prognosis? Well your guess is as good as anyone’s! It's true as no two cases are the same. Unfortunately the syndrome is long-term and not associated with good outcomes – some never recover at all, most have regular intervals of around 6-8 weekly cycles where they take on more IVIG, peak, crash and repeat… either making marginal improvements each time or getting progressively weaker until the treatment doesn't do it's 'pick me up' trick.

I'm just glad to be out of the jaws of the relapse. Five days of bed rest has given me lots of space to prepare myself for the next episode of my CIDP horror box set and with the main players back at the hospital tomorrow, we can decide where and what to do next for the most optimum result possible.

So far, I'm feeling stronger in my arms and my legs are back moving when I'm lying flat but not strong enough to hold me up. There's a trip to the MRI scanner planned (which they will need to knock me out for 'cos I'm claustrophobic) to check I don’t have any additional back problems, and then physiotherapy, more observation and more electrically charged needles coming my way.

Then I'll know exactly what I'm in for, well for the near future anyway. Until then, there's another little Master or Miss Coleman due next week to draw fire from the CIDP fallout that clouds each day and hopefully provide a ray of sunshine into our world.

Enjoy your Sunday folks and send me a photo if you go somewhere picturesque - the pic at the top was taken above Avebury last year and is one of my favourite runs which you'll see next weekend at Race to the Stones. 

It's my kinda Planet Earth!

More later...https://crowdfunding.justgiving.com/TheColemans

Rory Coleman

976 Marathons, 241 Ultras, 9 Guinness World Records and 13 Marathon des Sables

Pendulum - Watercolour

Lyrics:- 'When I'm falling down, Will you pick me up again? When I'm too far gone' - Swire Thompson

Song Choice:- I've used this song so many times in my blogs and it narrates the last 24 hours perfectly. Even Jack Bauer would have struggled with this plot.

The decision to go back into ITU at the University of Wales in Cardiff for more treatment wasn't a difficult one. A week of Zimmer framing around two rooms at home like Torvill and Dean, skating blindfolded and excessively drunk, being supported by an eight months’ pregnant wife dodging a very active 18 month old toddler, was becoming a recipe for disaster. There were far too many close shaves and a couple of nasty falls. Mrs Coleman has been amazing throughout it all and I'll never be able to repay her care and kindness...

Being chaperoned by friends (Thanks James and Mike) and being dead-lifted a couple of times off the hall floor by neighbours (I have strong neighbours) it was time for me to wave the white flag and beg to go back to the place I so wanted to escape from in May.

Ward C4.

The lyrics continues...'Will you take me out of here? When I'm staring down the barrel, When I'm blinded by the lights'.

This time there was just relief and hope that I can at least get to walk again in the future. There was no gun at my head, just one last epic drunken skating journey to the car and a short drive to 24/7 professional care., I won't go into the unblocking process. 

This time without shame, without a tear, without a fight.

All I believe, and all I've been for 22 years, may have been taken from me, for now. I now have to face uo to this way of living - My world might have collided with the worst Kryptonite a Coleman could ever come into contact with, The world of 'Chronic Inflammatory Demyelinating Polyneuropathy' (CIPD) now diagnosed for sure.

But at least I now know what I'm fighting.

I took my last couple of steps last night before becoming bed-bound for the next week or so as I'm just too weak to stand at all any more. We'll see if the 'Immunoglobulin' intro-venous antibodies can get the CIDP to recede back down my arms and legs and some more MRI scans of my back which are clouding the issue as my discs are also blocking some of my central nervous system to add to the mix.

And maybe regain some strength...

I will too you see, it's too easy to be frightened, but I'm not. I feel calm and ready to take on this next life chapter. I've used the chorus of this song lots of times when the brown stuff has hit the fan in the past and it's my anthem right now. Listen to Pendulum for yourself and see what you are missing...and shout with me.

‘Feed the fire, break your vision.
Throw your fists up, come on with me’.

My fists are up ready for Round Two - Come with me!

More tomorrow.

976 Marathons - 241 Ultras - 13 Marathon des Sables - 9 Guinness World Records - 1 Vision