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

Undertow - Genesis

Lyric:- Stand up to the blow that fate has struck upon you, make the most of all you still have coming to you - Banks.

Song Choice:- One of the best songs from the 1978 album, 'And then there were three', and one that showcases Collins early lead vocal perfection, perfectly.

Anyway, it was the 'Undertow' title that I was really interested in. You know the constant undertow of the sea can easily catch you out especially after a big wave. That was like me last week feeling that by Friday, I'd really thought I'd turned the corner and I could see a clear path ahead of me to a nice and full recovery...I was riding high on a big-roller, and there I was on Facebook announcing to the world that there were good times ahead...

Oh how wrong can you be…

as literally over the weekend, I fell off the wave and crashed into the 'Undertow' and am now so weak, I've got to return to University Hospital Wales, in Cardiff, for more immunoglobulin iv to fight the Guillian Barre Syndrome (GBS) and to find out if I have in fact got its ugly sister Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) which is a nasty acquired immune-mediated inflammatory disorder of the peripheral nervous system. Google it, read it for a few sentences, get frightened shitless and close the window on your PC as fast as you can, as that’s what I did.

What am I going to do?

Well, I’ve got to keep on going, keep on fighting and roll with the punches. What else can I do? I accept that I’m really seriously ill and that there's not a nine-day wonder-fix for this and the prognosis of either condition isn’t that good but I owe it to myself, my family and all of those that have supported me through the past few months (you know who you are too), to keep on working with my consultants at UHW Cardiff and get this illness beaten as much as I can.

Right now, just to walk a few steps unaided would be a complete revelation. The saying, ‘It’s not how you fall; it’s how you get up’, rings in my ears and maybe I’ll get the call tomorrow that a bed is free for the whole process to start-over again. Let's hope eh?

I’ll keep you posted with my progress and lastly a HUGE ‘Thank you’ to everyone that’s helped me or my family over the past few months. The overwhelming support and messages received have been so humbling.

How I will ever repay that, is impossible to say, but THANK YOU.

Rory Coleman
976 Marathons - 9 Guinness World Records - 13 Marathon des Sables - 1 Big Illness

Lily-white Lilith - Genesis

Lyric:- 'I can see the corner of the tunnel, lit up by whatever's coming here' - Collins, Gabriel & Rutherford

Song Choice:- I wanted a good 'tunnel' lyric today and luckily 'The Lamb Lies Down on Broadway' Double Concept Album provides just that. Have a listen to what you've been missing here.

The Tunnel? That's the Guillain Barre Syndrome (GBS) Tunnel - stands for 'Getting Better Slowly', I was told yesterday, ha ha. However this week, even with it's ups and downs, has been a good one for my own GBS Journey - 'Grind Back Steadily', I call it.

No Heroics, No Guinness World Records, Just plain pure honest Graft.

I'll see just how much of this has paid off when I meet my Consultant Neurologist on Monday afternoon. I wonder what he'll think of it all eh? Not much I bet!!!

Anyway, luckily for me, t's Friday, I'm post exercise during Wimbledon Fortnight and the Mighty Cymru taking on Belgium tonight, the World isn't too bad a place now is it?

More tomorrow,

Diolch - Rory Coleman

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