Bit of a scare...

It's been a week...

It would've been a longish week anyway I cut it, 4 days in the office and 1 doing the charity thing in London on Tuesday... An early start, an important meeting, an afternoon at the CHF offices followed by popping to the British Museum to see the Benin Bronzes and then a bit of shopping before coming back...

And on Oxford Street the phone goes... My cardiologist, he's had the numbers from my MRI they don't match the numbers from my echo a couple of months before hand, can I pop in and see him on Friday afternoon, we need to chat through them...

SHHHHHHHHHHHHHHIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIITTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTT

There is no other way of putting it.

All the running, the PB's and the climbing, and races to come disappeared from my head... Worst case scenario - pulmonary valve has gone out of commission (a possibility for all fallots) and needs an urgent op.  Best case scenario... at that point there was no best case...

The inner sanctum (those three or four friends who would be the ones delivering food to hospital while I was in, and handling any enquiries from people about how I was doing) knew that evening, a few more and my bosses at work the next day.  I made no secret of it, but given the lack of clarity I wasn't going to broadcast it either...  A passing reference that I'd be getting the results on Facebook and back to doing my job, and a couple of gentle exercise sessions...  ok, that's a blatant lie - running 5 miles with a hard set of traverses in the middle isn't gentle! 

But it was needed for my brain...

And so the day dawned and the hour clicked over...

And there had been an error in the calculations, my valve will need replacing at some point, but not now, maybe not for years... It needs monitoring, as it always has done, and MRIs are going to be a feature every 2 years or so... I can live with that.  Its part of being a GUCH, an ACHDer, a Fallots. Part of being me!

So worry over, for now.  The inner sanctum are stood down, the plans which would have swung into place have gone back on the shelf and the sense of relief is very, very palpable...

And so back to the fun stuff!

Tomorrow is the OU day school, followed by a trip to Baslow for a 1 day photography course on the edges above Chatsworth on Sunday.

I recently wrote something to try and raise awareness (when I hear if it works you will) that I'll never take walking or running or climbing for granted.  This week is why...

TTFN

Paul

Comfort Blankets, Colds & Popcorn

We all have them, those little things which we do... and if we don't do we feel off, odd or just not right!

For me its the strapping on of the Garmin watch, seeing the satellites lock on, and the heart rate drop (its the relaxation I do as I get ready for a run) and then going...

Which is a right pain at the moment... My 310XT watch is back at Garmin.  For reasons best known to itself it has decided its 2007, and probably unrelated one of the buttons has stopped working.  Garmin customer services, are as good as ever, and a new one should be heading my way for the weekend. 

Fortunately, the duffness of the watch has coincided with a cold, so following the entirely sensible advice I've ratcheted down the exercise... Which is beginning to get on my wick... However, the cold seems to be dying down, the walk and the clambering today didn't have a negative impact. 

So a gentle gym session in the morning, and probably a climb in the evening... Tuesday is a long day to London and back for a meeting...

However, I do have a new snack - work's coffee shop have started stocking savoury popcorn, but as so often what they considered "hot" was a mild tingle... It also wasn't cheap... So for the price of 1 packet I've a huge amount of popping corn, and some more entertaining flavours... Peri-Peri to start:-D

So, hopefully the new watch will be with me mid week, just in time for me to be hitting the miles for the run in to the 1st of the marathon...

TTFN

Paul

Who let the (mad) dogs out?

I have a cold... my nose is a mucus stream

I'm tired - Long week at work...

I'm tired - Meeting about a pet project or two at the CHF offices on Friday, Friday night the requisite relaxation and discussion time (yes, that does mean a bottle or so of wine... Each) Trustees meeting in London on Saturday..

I have a cold - the rule books says take it easy...

I have a congenital heart defect - sometimes it has a moment...

The Mad Dog has been voted the best 10k in the country - and its bloody good, its one of my favourites (the Bug Runs midweek madness is v v close to perfection as well).

So, by the km...

1st - 6:06 - Too fast, swept along in the moment... Heart rate up, but not too far

2nd - 7:18 - first 700m far to fast, legs won't reset down... Heart rate higher than I like... Do the right thing, walk 300m reset the system

3rd - 6.59 - solid, PB territory, feels good, HR back to normal for running

4th - 6.58 - solid, wave at mate whose comment was I was looking faster than last year...

5th - 6:47 - take gel, blow nose, do the twisty bit.. Other runners start looking tired, pick target for next KM

6th - 6:55 - target taken early, slowed down afterwards - pick new targets for the run in...

7th - 6:57 - solid, woman running on my shoulder, sweeping my targets with me

8th - 7:00 - solid, woman on shoulder now in front of me, not letting her go... systems check, nose still dripping, heart rate ok, PB on if I hold steady

9th - 6:37 - take woman early, new targets set, legs stretch out, only 2000m to go, systems looking good, see where I am and then do the last one...

10th - 6:02 - watch not important, targets falling, spotted someone who'd got a good distance in front when I walking back at km 2... Can I do it... yup.. last 30m...

67:40 by the watch, 67:47 by the chip... Previous PB was 69:32 - so almost 2 minutes off...

Should I have run, possibly not, but the t-shirt is Grrrrr-eat!

The cold is still there, the dicky ticker is behaving itself, the gym kit and climbing gear is in the bag... Gentle tomorrow...

Oh, as I said I'd raise awareness - I was in Children's Heart Federation colours, my scar prompted comment in the changing rooms and I had a good natter with a few people... Job done, and done well:-D


TTFN

Paul

The Power of the Personal Best

I'm 40...

According to the books I should be slowing down...

Bugger that!

I'm not entirely sure where my sudden spurt of pace has come from, but its kept coming...

I've, in 10 days, taken over 2 and a half minutes out of a PB for 5 miles that has stood for 2 years... That would be enough to make my running this year a success!

In one run I slayed a 5km pm that again has stood for 2 years, taking almost 2 and a half minutes out of it... That's dream land territory

If it was all the short stuff I'd be worried as I'm not in this for the sprint, I'm in this for the marathons... A truism and a reality for me...

But I also took 6 minutes out of my 25km PB, not a distance I run often but still a massive improvement over the previous run which was in the build up to the Liverpool Marathon.

So what?

Running for me is a lot, an awful lot, about confidence... The demons of school telling me I'm slow, I shouldn't run, are still on my shoulders even now.  I ran the 5km start to finish at pace, I ran the 5 milers with the last km being the fastest (going as fast as my 5km pace in places), apart from 1 km (in 3 chunks - the muddy 500m, and the 2 x 250m fiddling with my hip pockets to get the gels out) I ran 25km.

So those demons are quietened down, for now... The hard miles are working, the strength work in the gym is working, the sports massages are working (painful but it all seems to be working)...

So my objectives - keep the demons at bay, keep the miles going... My odd combination of events means I've got to find time to put hills in as well as pace... Which was the potter around the West Pennines this Friday.  Now, I need to wait for the morning, it should be a 30km run... But ice isn't entirely sensible to run on, so I'd have to hold my frustrations at bay, and go to the gym... This is a run I intend to finish, so no glory dashes!

This week is an almost pain in the ass... I've a trip to London for work (if the West Coast line is working again) on Tuesday, a course in Buxton on Thursday and a much more pleasant trip to London on Friday for a CHF Trustees meeting.  And then on Sunday is one of my favourite races the Southport MadDog 10k - will it be a PB, I don't know, I do know I'll try...

TTFN


Paul

Awareness Raising - A View from the Trenches

It's almost the month of lurve...

The month most closely associated with hearts...

And that means it's time to think about awareness raising...

But what about?

Is it - we exist... some of us die as children... some of us have life limiting conditions... some of us defy the odds and run, cycle etc more than we were ever allowed in our childhoods - or it all of them.

In marketing terms its a complicated sell, what is the USP of being affected by a congenital heart defect?

I honestly don't know - 20+ years in the awareness raising game and I'm not sure if anything makes us a unique group of individuals.  We can be defined by having or knowing someone with a congenital heart defect but that in itself is not a selling point.

We're not all cute...
We're not all blue...
We don't all need help to do things...

So I'm still struggling with the USP...

What I do know, is that awareness raising is about going out into the wider world, telling people who do not know, and may be interested, that we exist.  Self referential awareness raising doesn't work - telling someone something they already know is a bit odd...

So break out of the shackles of Facebook and Twitter and do something to tell someone else about us... If that's wearing red, and most importantly explaining why, then do that!  If it is helping the Children's Heart Federation collect at one of the busiest train stations in the UK then click here

As for me, I'll be do my mix of behind the scenes stuff (yes you can raise awareness without it being plastered everywhere, its about influence) and running in CHF colours at my first formal race of the year - http://www.maddog10k.co.uk/

And trust me, when I tell some of the other runners that I have a heart condition they gain some awareness...

So pick your message, sell it well, say it true and remember just because congenital heart defects are important to us, doesn't mean they are to others - so be nice and respect people!

TTFN

Paul

A musical interlude - Might for right, not might is right...

I grew up with my nose stuck in many a book; my favourites then are still some of them now - The Scarlet Pimpernel, Sherlock Holmes, Tales of Robin Hood and King Arthur and the Knights of the Round Table.

Not having a set of particularly robust male role models I sought solace in tales of daring do, mystery and chivalry.

I also like musicals, and much to some of my friends disgust, and love Camelot and Man of La Mancha partly because they draw together some of themes from the books I loved and made them manageable.  They also managed to turn pages and concepts into a line or two of song...

Might for right, not might is right -

I've said elsewhere I don't like bullies, and its a sad fact that some who've been bullied find the attraction of the power that brings when they encounter someone they have some level of power over too tease, bully and impose themselves on that person becoming that which they hated most.

And boy, is that a seductive trap... Checking yourself constantly, getting those closest to you to check, and checking that when you provide help and advice you do it for the best of reasons...

Checking doesn't mean you have to always agree with people, and if they are wrong and present a risk to themselves or others they do need to be told... So get those people to check, review and let you know how close to the line you're getting...

Of course the recipient of the advice may not welcome it, especially when they are in the wrong - well that when you have to develop a suit of armour of your own.  Doing the right thing against the tide of popular opinion is a tough river to swim...

Man of La Mancha gave me the first nickname I didn't hate, or was from someone trying to bully me by making a joke of my heart condition.  It was from a friend now long dead, who saw behind the shield of humour, daring do and fire & brimstone passion to see a knight of woeful countenance

- tilting at windmills is something I seem to excel at, occasionally I may even catch my Dulcinea...

Finally, its not been a good week in the UK dicky-ticker world and while the rage against the night has been and gone there is now just that lingering feeling -



So to misadventures, if not adventures my friends

TTFN


Paul

A day to fall in love (again)...

... with the English countryside...

The Peak District is one of my favourite places on this planet, once you get away from the normal honey spots you can walk for hours seeing no-one else, and yet know that civilisation with all of its pluses and minuses is only a short way away...

When the day starts out like this, its not going to be a bad one... Throw in about 650m of up and down, and just under 22km (2000ft & just under 14 miles), a fair chunk of it over a moor that gives views of the sharp edges over the Derwent valley, and the rest through the historical plague village of Eyam (pronounced Eaamm, not Eyam, or by the American guest at the Youth Hostel E-YAM) down to Stonet Middleton where the climbers were playing and a slap up tea the Youth Hostel (they do do food, it's cheap and the better than much in pubs these days). Good Job I burned those 2000 calories!

 

The only downside on 2 and a bit days walking - a mysterious blister on my heel... Why mysterious, because the boots have done the best part of 80 miles before Friday, and I can find no reason.  But a decent compeed blister plaster seems to have done the trick.  I'm also fairly lucky with such things, given the abuse my feet get I average, roughly, a blister every 300 miles - which isn't bad!

Time for a soak I think

TTFN

Paul

ps Total so far for the year - 74km

Change the World... Another NY Resolution blog

New Years Resolutions...

Blargh....

Don't do them, when I did I didn't keep them...

However, that doesn't mean I don't do change... I just pick random dates... well semi-random...and some like the title are long term projects... Apologies, I'm on a blogging roll, so you'll need to wade through other stuff first...

Weight loss - Reviewing my training plans for 2012 in November, I decided one way to improve would be to carry less weight... My collection of titanium , tissue thin waterproofs and micro-towels is a good start. Unfortunately the only thing really left to trim weight off is me...

The best objectives are ones with an element of precision - so by the Belfast Marathon (7 May) I'll have lost at least a stone (14lbs, 6kg).

How - simple really - I'll eat a bit more sensibly. My slow cooker will work its magic for my evening meal, lunchtimes will be mainly a tin of soup and I will try to remember that although its easy to improve my mood with a large carb-surge it doesn't do my blood sugar or waist line much good.

Progress - the week before Christmas I was down half a stone. It'll have gone up a bit, but this is a long term aim not a crash diet.

More exercise - I can hear the puzzlement through my computer screen. Again its not really more, its better. Last year's marathon training was scratchy - I got the long slow runs in, but the mid week runs were intermittent and not always targeted. I have a bag full of reasons for that - my job is to work around them and do better.

So, specifically - I'll move one of my runs to after work, giving me more time to do a longer run. I've done it before when training with the specific aim of breaking the 2:45 for a half marathon, I will do it again.

A New Challenge - A difficult one - I run in anything from 5k's to marathons in a year... I've walked a fair bit too... Challenges have to inspire me, and possibly others, hence the 2012km, the Excalibur Marathon and the Nottingham ultra-marathon. All are beyond my comfort limits, each will push my determination, stamina and sheer bloody stubbornness to new levels.

Do something fun - well that's the Open University course, there is absolutely no need for me to do an arts course, I could just potter around art galleries and muse on what I see. However, I respond best to a goal and a challenge - so an Arts based degree it is (and yes fitting it in is difficult). So the specific is to submit the assignments on time, and to pass them all... Not entirely straightforward when confronted with a poetry assignment!

Change the world - nothing big there then. I have a certain skill set, nothing to do with the running, walking and climbing, and access to a wide range of people with knowledge which when combined can make things happen.

I don't write much about these meetings, email exchanges and presentations because most of the time they are frigging boring - and often they are the very long end of a lever. Some of them are behind closed doors and I can't talk about, but all of the input over the years is invaluable, others can be more open - and when I know which I'll ask for your specific help.

So, it's a bank holiday weekend, Sunday is officially one of my rest days from exercise so its a catch up on other stuff - 2 essay's to write (Poetry! Cats! Argghhh!), a blog for the Adult Congenital Heart Association (Here - they're worth a read, and not just mine!), training plans to finalise, and just to prove its not all a grind - I'm off to the Peak District next weekend for a short break, so the maps are out and the weather being checked...

TTFN

Paul

and for 2012?

It wasn't meant to be a thousand miles in 2011...

My stated aim at the begining of the year was to do 100km a month, coming in at 1200km - 745miles... A good loading for anyone, and one I wasn't sure I was going to make given the various competing pressures for my time.

But with 11 miles and c24h to go, I think I'm going to make it... I'll go for a stroll this evening and then tomorrow walk along another section of a new
Long Distance Path - the Wirral Circular Path. This bit will take in industrial archeology, Napoleanic defenses, battles of the US Civil War and finish near one of my favourite nature reserves - Hilbre Island.

This thousand hasn't been quite as structured as the last one, which has meant when it became a possibility I was left with more miles than I normally would've wanted to do in a month. November was the crux - and the challenge for £40 to do 4 whttp://www.blogger.com/img/blank.gifeeks of 40km for my 40th. That bought me to within 140 miles of that thousand... Just under 5 miles a day every day, come rain, come shine, come head cold...

It's not been easy, but I am chuffed I've almost done it... 1000 miles...

What that doesn't include is walking to work, or trips to the corner shops, or trips to get stuff after a days walking... a rough estimate for those would an extra 500km

Which brings me to next year, there is an obvious distance challenge, in kilometer form (I'm not completely insane!) of 2012... But that will mean I need you to give me money, well not me - give it to a cause close to my heart - the Donate Here button works or click here -

This year is about my fight with the inevitable aging process and defying my mid year crisis... an extra 250 miles in a year

So cough up, while I'm still at leave of my senses...

TTFN


Paul

What sort of patient are you?

First off, apologies to my pure-bred disability activist friends this is going to look like its steeped in the medico-legal model rather than the evolved social model... But you may like seeing where I go with it...

I was asked by a colleague about whether there was any training for a relative on handling their recently diagnosed diabetes... and after the usual nudges towards Diabetes UK, I started reflecting on the stages of being a patient, and though I'm sure there's a lot written by psychologists I thought I'd throw my tuppence into cyberspace...

A Pure Patient

When we discover we're a patient we're just that a patient - we need to go to a doctor, find out our prognosis, what we can do to help mediate our conditions - we're pure, we may have some previous experience of others with our condition but as it affects us, none...

An Informed Patient

We've joined the support group, we've read the information pack, we're carrying the passport/wallet/sos talisman/medic alert... We know the treatment we should get and and know what to do if we don't get it.

An Expert Patient

This is where is starts getting controversial, a lot of people will say Expert when they mean informed... The gap is the psychology part... Let me try and explain

The original Expert Patient Programme (EPP) was a 12 week scheme designed to take informed patients and take them to the next level, where they manage and understand themselves and their conditions. They know the impact of mood on their conditions, know that sometimes their control may not be perfect, but know that they are human and occasionally need that slippage.

I can't put it any better than this:

"This chapter introduces the concept of expert patients – who enjoy good quality of life despite
chronic disease; who have the confidence, skills, input and knowledge to play a central role in the
management of life with chronic disease, and to minimise its impact on their day-to-day living.

From: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4018578.pdf

For me the moment I became an Expert Patient was when my GP asked me how I should manage down a blip in my blood glucose... rather than telling me that I should eat less X or Y.

The next stage is my own, I've not read it somewhere and will probably get slated for it...

Weaponised Patients

We're not toxic patients they are the opens who shout and scream, demand a private room etc etc etc.

Weaponised patients are the ones who have the information, manage their own conditions, deal with their medical experts as equals and then take the next step...

The next step is getting involved in designing their services, at a local, regional, national or international levels...

Like all weapons they know only to use their full range of skills when the need is there, there is no pointing shooting off at the mouth all the time as people will get bored. We're the ones who end up on GP reference groups, running our support groups, being involved in our NHS trusts management structure etc etc.

The problem is the line between Weaponised and Toxic is very fine... can you look beyond your own experience and draw together the opinions of many, can you wade through document after document and make sure you know them so you can explain them to others... and can you go eyeball to eyeball with an expert in a specialist centre and tell them they're wrong, they don't understand what its like to be a patient as they do the proding rather than being prodded... and do it in such a way that educates an expert rather than alienating them?

There is also the fact that you, I and everyone can move between these "states" quickly, depending on the time of day, how lunch has settled and what news the medic is giving you.

Weaponised patients are quite rare, mainly I think because it is tiring, very tiring... And managing that is something that the EPP didn't cover.

Is there a less militaristic term for weaponised patients? Advocate, as a term, has been overused, misused and abused... so find me a name...

TTFN

Paul

ps the self awareness thing kicks in at odd times, so I've just realised that I blog more when I'm doing more exercise... 50 miles in 5 days... only 11 left to the 1000