The Walker With Heart

12% of a plan…

2022-08-23T20:55:00.000+01:00

It’s been a month. A month since the new heart valve was inserted… the chaffing has died down, I’ve been sensible and built my walking up, restarted my apple fitness plus bits and bobs (boy has it been a long time since I bent like that, or cycled/spun like that) and I’ve been for two runs – a gentle 3k which worked as a prelude to my return to my local parkrun… I finished, my tally went up 1, and I remembered just how tough it is to run the first mile on so soft, dry sand… In hindsight I would’ve been better to walk the first third and conserve my energy (and pool of fitness) to the prom and the grass thirds…

Relive 'Return to Parkrun!'

Yes, it does look the first bit is out to sea…

Monday was a random day off work to get out and do something, so with a bit of head scratch and some nifty plotting on the OS Mapping app I wandered along the canal, and then down the Transpennine Trail & “loop line”… Almost pancake flat, I know it well from marathon training of years gone by. The plan was simple, follow my nose to the end of Merseyrail line that’d get me back to home (via lunch)…

And I did…

Relive 'Distance test - ✅✅✅'

Which brings me to the plan… well, to quote a space rabbit, 12% of a plan…

The rest of this year is all about getting a bit fitter and a bit less fatter… Jumping into a hard program is a recipe for injuring myself, and with my frozen shoulder still thawing (and the physio reminding me this stage could last over a year… ) injuries are something I would like to avoid.

So what’s the plan…

Keep doing the walking, throw in a couple of runs a week, something long (walk, run and eventually cycle)… balance this with some stretching, yoga, core and even an occasional HIIT session and my baseline should improve. I’ll even start being sensible with the food (no crash dieting, been there – doesn’t work), this is sensible rebalancing.

The events we have in the calendar, lend themselves to this plan…

GNR – walk/run… tab it out, enjoy the day.

Scouse 5k – I’m in a giant wig… hopefully run/walk.

Ladybower 20 miler – it’s a walk, its mainly flat…
Winter Tolkien Trail 10k – cold, hopefully wet… close to the end of this phase… let’s see…

Parkruns when we’re about… I have a red t-shirt to chase down…

That will take me to 2023… and then I need a challenge, I’m a big fan of a Big Hairy Audacious Goals (BHAGs)… https://www.jimcollins.com/concepts/bhag.html (Jim’s wife is a triathlete, he’s a bit of a runner and he’s a rarity in management gurus – he can give a decent talk).

The search for a BHAG will also happen during the next couple of months. I’d love it to be that triathlon I wanted to do before I was 50 (I’m not going to beat myself up about the impact of a global pandemic) but this shoulder can barely take throwing a tennis ball, let alone pick up my swimming lessons! So, probably on foot, possibly with a bit of bike (shoulder dependent)… and definitely fun!

It’s a kind of magic (the science kind)…

2022-07-21T20:37:00.001+01:00

Well, operation done – I have a funky new valve and a bit of a sore groin. I was in hospital for 28, sleepless, hot, hours and unconscious for about 4 of them.

While the insertion points for the three catheters I had in me in at the same time heal it’s a case of taking it easy, let my body get over the various manipulations (sore throat, the impact of the still there frozen shoulder) and the simple lack of sleep from stress and some noisy neighbours on the day ward I was on.

There’s really not a lot else to say… I went in, did the usual pre-op checks, had a chat with the interventionist, had a chat with the anaesthetist, signed the all-important consent forms (kids – that’s when you know you’re an adult; parents, that’s when you know your kid is in charge), was wheeled across to a hybrid cath lab… laid down, bit of banter with the team and the next thing I knew I was waking up, sore and not actually knowing whether the funky valve had fitted me…

It had, so I had the delights of groggily trying to sleep through one of the hottest days, and nights, in UK history… ok, the second hottest and hottest night in UK history. With a couple of very scared, very loud coronary event patients trying to compare notes with each other and letting their loved ones know what was going in a lot of detail.

Two huge recommendations – noise cancelling headphones and a neckband fan… helped keep me as close to sane as I normally am!

Mrs Jiminy was brilliant as ever; from sorting out the transportation and accommodation (my bed was sorted, she had the fun of the Travelodge) to the provision of much needed ice filled bottles of juice… She yet again was my shield, and my prop…

So, a bit of a boring blog… apart from being a nerd I’ve spent a bit of time looking into the magic… and it’s like a Marvel movie.

Picture the scene, 1929, a young German doctor has an idea… why can’t you put a small catheter in a vein and follow it back to the heart.  His head of department says you can’t do that!  So he convinces a nurse to help him, lets her prep the theatre, straps her to the operating table leading her to think she’s getting the procedure done on her… then proceeds to put a catheter in his own arm, and then released her and they both went to the x-ray team and guided the catheter into the right side of his heart.

So via a couple of twists and turns, he was sacked, became a urologist, a member of the Nazi party, a POW, a lumberjack, and then back to being a doctor.  His write up of his slightly odd approach to developing a new technique was picked up by some American doctors who publicised it, refined the technique and in 1956 was awarded the Noble Prize for Physiology and Medicine… The full story is here: https://onlinelibrary.wiley.com/doi/epdf/10.1002/clc.4960150715 with the wiki version here https://en.wikipedia.org/wiki/Werner_Forssmann and  the presentation speech for the Nobel prize https://www.nobelprize.org/prizes/medicine/1956/ceremony-speech/.

Still with me?  Yup cardiac catheterisations were invented by a rogue German scientist who tied his helpful nurse down and then walked to the X-ray department to prove it!!!  I think I’ve seen that movie…

For ten years measurements were taken and drugs administered directly into the heart, and then someone, I like to think at a kiddies birthday party, had the thought… Coronary heart disease has a component when arteries close up… could we blow up a balloon to widen the tubing up?  The answer is yes, but some of them collapse back in quickly… so then the idea of scaffolding, or a stent was thought up… The timeline has been kindly set out here: https://academic.oup.com/bmb/article/106/1/193/321394 .

Throw in then ability to measure and manipulate the electrical pathways in the heart… by a special breed of magicians known as electrophysiologists and things were ticking along nicely.

But there was a growing need for something extra… Operations on the pesky kids with congenital heart disease were becoming more and more successful, and the kids were growing up, some of us were even getting jobs, having kids… but relatively often we needed new heart valves; and full open-heart surgery isn’t something anyone particularly wants, let alone wants more than once.  So, another German cardiologist had a bright idea, and tried to put a valve in a stent… lots of hoops were jumped through and the fairly well-known Medtronic Melody valve was created https://www.medtronic.com/us-en/patients/treatments-therapies/transcatheter-pulmonary-valve-therapy/melody.html … That was back in 2000…

Now, here’s the thing.  Not all patients are suitable for transcatheter procedures – their veins may not go the correct way, their heart anatomy may mean the catheters can’t get around the corners or the surgical work back when they were kids means things won’t fit… or as I found out last year my tubes were too big for anything that Liverpool had.  Which is why I went to Leeds, to see a man with a bigger valve… and a much bigger funkier valve…

The story of the development of this branch of magic now becomes one of undoubted genius coupled with population size and economics.  With a population of 1.4 Billion, and c17 millions births a year… and assuming a 1 in 100 birth rate of congenital heart kids, that’s a hell of a lot of potential patients for a new bigger pulmonary valves.

I don’t know enough about the reason why a balloon stent device isn’t big enough for the likes of me to explain it - but it means I’ve got a nickel-titanium memory-metal double flared end valve in me.  Of course, being the hottest day of the year my valve needs to cooled under ice to let it be compressed to fit into quite a large catheter.

This is it https://www.venusmedtech.com/index.php/list-45 it should be good for 5 – 10 years, by which point hopefully there’ll be another entry in the madcap progress of science!

So what happens for those who can’t get their valves via a catheter… Well, if they’re like Seb who I’ve met, and met his Mum and Dad a couple of times normally while running the GNR, it’s the skills and science of open heart surgery. Seb, being Seb, took it in his stride and has been inducted as an Avenger…

A lovely update from @benshephard @CharlotteHawkns & @RichardAArnold on @GMB. Featuring messages of support from @VancityReynolds @brielarson @MarkRuffalo @chrishemsworth & @SamuelLJackson; not only supporting Seb, but all of our @CHUFOfficial Heart Heroes. #HeartHeroSeb pic.twitter.com/byCMfkYaX0
— Ivan Hollingsworth♥️💙♥️ (@Seb4chuf) July 21, 2022

If Seb is the Avenger, then I may just have to be old school https://youtu.be/0CPJ-AbCsT8

TTFN

Paul

A great passes… and I’m getting knocked out again…

2022-07-02T19:42:00.001+01:00

It seems odd, a man whose skills have meant for the last 47 and a bit years I’ve been able to do all of my adventures the only man whose had their hands inside my chest cavity, has died. Marc De Leval was a great, and not just for me… ok, even I’ve not got that much of an ego!!!

Lots has been written and will be written about why he’s a great – the start of paediatric heart transplants in the UK, his 30 years of surgical practice, his work on taking congenital heart surgery around the world…

But for me, it was his humility… His Autobiography is called “Humanity & Humility: 40 Years in Children's Heart Surgery” and although I have never met Marc (well never in my memory) I have met most of the others on what I consider to be the greatest example of humility in a congenital heart surgeon - https://www.sciencedirect.com/science/article/pii/S0022522394703507 as a surgeon he had a run of cases where children died, and did not brush this off as “bad luck”, but opened himself up to analysis, and retraining – identifying that there are other indicators that could have flagged up issues earlier.  This was back in the 1990s, if all followed his self-aware, humble approach, recognising that the route to better outcomes is data then the world would be a better place for kids and adults with congenital heart disease.

Which brings us to me… and the latest technology!  Almost exactly a year ago, they knocked me out and tried to stick a valve in via my leg.  It didn’t work, my tubes were too big… Which left me in a bit of a pickle, not ill enough to start contemplating open heart surgery but knowing that’s the route I was heading down.  Then at my check-up my cardiologist mentioned a trial being done of a new type of transcatheter valves and he was happy to get in touch with Leeds to see if I was suitable and met any trial criteria.

Well, I’ve always said that I don’t want to be the first to do anything, but I could well be in the first 100 to get a Venus-P valve in the UK.  As you’d expect me and Mrs Jiminy have had lengthy discussions with the interventionist, who genuinely seemed to enjoy explaining how this technology works to a pair of professional nerds… A nickel-titanium mesh holds the memory of its shape at STP (standard temperature and pressure), a piggy valve is sewn into it and its kept ready for action.

When the day comes, it will be chilled down to about freezing, as this allows it to be squished small enough to be put in my leg… then when it gets to the right place, they let it warm up and it expands and all being well holds itself in place.  I’m skipping a stage or two (checking it works for my anatomy, making sure my tubes aren’t still too big, knocking me out… ) but unlike the last go, there’s no stent to go in first…

The risks should be the same as any other catheter, and yes that doesn’t mean its risk free but it does mean the risks are acceptable to us.  We’ve been given fair warning that although everything looks good to go there’s a 20% chance that when they get in and take the detailed measurements they’ll decide it won’t fit and I’ll be back in the hinterland.

So, two weeks until we head to Leeds – yup two weeks… So, upping the conscious attempts to avoid covid, and planning for my recovery… Last year it took two weeks for me to be me again and longer for the leg to recover.  So, I have the Lego planned, by the day, as my ability to concentrate improves and also a crafting/cosplay project… Mrs Jiminy got me a Wedges Antilles pilot’s helmet for Xmas… so my project is to turn this natty organe boiler suit into a X-wing flight suit…

The (re)start of a blog - New Adventures, 214 of them...

2022-04-30T09:19:00.017+01:00

A long time ago I used to blog a lot… maybe too much… but blog I did, as I trained for and ran marathons, ultras, multiday ultras. I also talked about the various poddings and pokings that my medical teams call tests and as ever promised I would be honest.

A lot has happened since the last post… which was just over a year ago. We’ve lost too many loved ones to list without seeming like each name is a number, we’ve found our “bungalow” so have gone from the views of the Mersey to a garden, other people’s cats and our own front door to the world. On the down side we have a decent chippie 250 metres away…

I’ve also had the fun of a failed valve insertion, via the blood vessels in my groin… More on that in a minute… Shielding, a busy stress-eating inducing job (without the balance of hard exercise) has had a bad effect on my diabetes, so I’m currently running through the options and dosing to get things back on an even keel and will get my eyes lasered next month.

On the heart valve the current position is “hold until change” as although I’m unfit I’m still chugging up hills (more later) although there is a chance that I’ll get a newer, bigger, fancier valve shoved up my groin later this year.

And so to the new Mr W in mine and Mrs Jiminy’s lives…

It started with a random decision – we’d done a fabulous Trail 10k (if you’re into that sort of madness look these guys up – they are brilliant! https://www.penninetrails.com ) on the Saturday morning, and had decided to do something in the Lakes as a walk… Loughrigg Fell…

https://www.relive.cc/view/vXOdYKJLd46

This view led to a discussion about the other hills we could walk up, both of us have done bits and pieces in the Lakes (I’ve walked the length doing the Cumbria Way and crossed it before my feet gave out on my attempt at the Coast to Coast)… which led to the greatest collection of views in the Lakes. The Wainwrights, 214 hills described in loving detail, each chosen for its view… The emphasis on the view is important, we’re not doing this fast, we’re not going out to “bag” them and we’re quite prepared to walk in other places, and non-Wainwrights (more on that later).

And so it started, a quick trip to Scotland just before Easter weekend led to a planned couple of days…

Day 1 – quick hop up Binsey…

https://www.relive.cc/view/vxOQoQ4gr2q

Day 2 – Little, Great Mell Fell and Garrowbarrow…

With a boggy bit in the middle…

https://www.relive.cc/view/vXvL218EN16

We then took a day off from Wainwright bagging… or rather, decided to do a fun walk with art history (Ruskin), National Trust history (centenary stone), short shrap climbs to superb views (Walla Crag), a stone circle (Castlerigg)… ok, we should’ve known that Walla Crag was a Wainwright…

https://www.relive.cc/view/v7O9BJPKPQ6

We then went home… took one look at the weather, and booked another night… A sparrowfart the Monday took us up to Martindale, for a long stretch over five Wainwrights. It was a Bank Holiday (for those not in the UK – national or religious holiday type thing) so were very surprised that we probably saw less than 10 people on the hills, especially with views like this:

https://www.relive.cc/view/vr63BwEjQ8O

17km/10 miles later we sat in the car and decided to leave little Hallin Fell for the morning… and it was heavenly, with glorious views over Ullswater:

https://www.relive.cc/view/vrqok5Wzyyq

As we go around the 214 Wainwrights we’ll shout out our favourite gear, shops and places to stay or eat… For the first a big shout out to the Keswick Boot Co https://thekeswickbootco.co.uk nice people, who know their stuff, and only sell you want you need rather than under or over selling like many places do.

The books are out, planning our next adventure, due to other things it’s unlikely to be in May, but early June we’ll be back… and hopefully will dip under the 200!

TTFN

Paul (& Mrs Jiminy)

In brightest day, in blackest night… (the end of shielding)

2021-03-28T12:08:00.005+01:00

No, I haven’t been passed a ring from an alien policeperson (nerds will get the reference).

It’s been just over a year since shielding began, it’s been just over a year since I became a virtual hermit, and that year begins to end on Tuesday.

With the exception of a magical week in Wales my world has been predominantly our flat, with a rough 3km circle of wandering there and back distance. The physical impact can be seen in an expanded waist line, despite cycling Lands End to John a’Groats on the exercise bike and almost half way round Iceland, and becoming mildly addicted to Cockney Kim, Jamie the Lad, Gregg of the unfeasibly low body fat on Applefitness+ the simple fact is in normal times I walk about 10k a day, these days I’m lucky to average three.

I’m lucky, I have got out a bit. I have friends who haven’t. We’ve not had major problems with getting food (thank you Asda for having collection boxes you can walk to) and we’re as safe as we can be.

I may be lucky but that’s not the same as it not having an impact, I know my mental health has taken a knock. I’ve developed a twitch whenever someone comes close to my personal space (which is probably best described in kilometres rather than metres at the moment), and the instinctive stare and glare at non-mask wearers who aren’t even bothering with the lanyard of miraculous immunity is going to get me in trouble. Yes, I have friends who can’t wear a facemask, for good legitimate reasons, trust me these aren’t…

I also have developed genuine fear of places where 2m is more like 50cm+… The responsive risk assessment that we all probably do (even if we don’t call it that) has for me introduced safety factors that in a previous life I’d almost have scoffed at.

Part of this impact is because I’m me; I’m the long distance walker, the recreational ultrarunner, and all the other stuff I do for fun… and I’ve got letters with the signature of two ministers telling me I’m “Clinically Extremely Vulnerable”, I could ignore it, but that wouldn’t be sensible and if things went wrong and I caught Covid at the very least the conversations about me in hospital would be more complex than for others – and that takes time, time which is needed for others.

Which brings me to the next couple of months, fingers crossed the numbers will keep going in the right direction, for me (and I guess many) we’ll be going to the shops for the first time, getting used to the social distancing others have had months of practice with and working on our fears. We know the vaccines work, but nothing is 100% and we know we’re probably going to need boosters – most of us are used to that, we get the flu jab every year. If enough of us have the jab, and we keep to some of the rules of the new normal, then with everything crossed the coming year will be a lot better than the last.

For me, being me, I have a rough plan sketched out – not a lot changes immediately, and nothing changes quickly. I need to get used to things again. But I have a bit more control, I can decide that meeting up on a windy day, on opposite ends of a bench with a fellow shielder is a good thing to do, I may well pop into shops (but reserve the right to walk straight out again) and hopefully, I start feeling a bit more comfortable going out for a walk…

So please do your bit, this is a virus spread from people to people, even when you’ve had your covid jab, especially if you’ve only had one of the pair – through the air, on surfaces etc. You know the rules, they’re there to protect you and others… please.

To finish a shout out to Mrs Jiminy, without her I’d be more of a mess… As well as me, she’s been supporting her Ancient Parent, and on two occasions has isolated in the spare room for 10 days after visits with lots of interaction with people. Looking after one grumpy old man through the last year has been hard work – and she’s had two!!!

TTFN and Stay Safe

Paul

Getting fit for heart surgery

2020-11-11T09:20:00.000+00:00

A dramatic, but appropriate, title for my first long blog in a while.

First up I’m fine – I don’t feel any different from all of the other times where my cardiology team has hinted that the time has come to do something about my aging dicky ticker. Aging is a good word – it was 46 years ago today (if you’re reading this on the 11^th November) where they did my original operation at Great Ormond Street. Even back then they suggested they’d need to keep an eye on my pulmonary valve… and so they have…

My interventionist called the 46 year gap between valves remarkable – I think he was being polite, I’m a freak. Most people with Fallot’s I know have had one or two valves by now. So, I know I’m lucky…

The luck continues, I’m a scientist, I read the developments I watch the progress of technologies… Due to the weird internal anatomy of my heart I haven’t been a candidate for transcatheter valve implantation… until now. The plan will be to have a good look around, check that things fit and will bend around the kinky corners of my heart, and if all is ok put a stent in. That stent should shore up the tissue and will be left to bed in for a number of months and then a valve will be inserted.

Sounds simple, and if it all goes to plan then I get a new valve (bovine, so no anticoagulation) in exchange for a couple of weeks off work and a sore groin.

Fingers crossed.

And no, I’m not being brave, I know there are things that can go wrong, I know they may do the detailed scans and decide they can’t go forward, throw in the issues around Covid and who knows what could happen.

And I’m used to this, Mrs Jiminy isn’t, exposing cardiologists and cardiac interventionists to me as a scientist and my beloved wife with her engineering head on could be considered unfair. It’s not. Mrs J will, and has, asks the questions I forget, not allow my prior knowledge get in the way of there being complete understanding and most importantly she’s there for the days when I’m not able to be the scientist and need someone to cry with.

The practical stuff will come; the dental checks, the self-isolation due to Covid, the trips to hospital for test after test, the checking of the will, and most importantly hugging Mrs J.

So, as some of you may have picked up from my microblogging, I’m in the shielding category (GP criteria… ) which cramps my style a bit on the exercise front. However, whatever comes all the evidence I’ve read is that if I can get a bit fitter and a bit lighter then things will be easier. So, I need to keep going on the exercise bike, try and keep the creaky back in working order.

I’ve almost done Land’s End to John O’Groats – about 100 km to go… So I need a new challenge, so I will circumnavigate an island I’ve always wanted to go to – and when this Covid stuff is over will do – Mrs J and I have northern lights to see, hot springs to lounge in, volcanoes etc etc etc and I have friends to see and introduce Mrs J to.

So, the next challenge is 828 miles, 1332km… around Iceland I don’t know how long I have to do it, and the back limits how hard I can push it, but that’s the target.

As you’d expect, cos I’m a fundraising whore – there’s a page if any of you want to support the charities that have supported me and will continue to support all with heart conditions from childhood. https://uk.virginmoneygiving.com/getfitforheartsurgery

Thank you for reading, and really all being well I’ve got an easy ride…

TTFN

Paul

In the Year 2029...

2019-12-31T17:30:00.001+00:00

So that was the 2010s… a decade of running, running, gongs, running, fighting for services, losing friends and falling in love & getting married.

Any retrospective of a decade focuses on the highlights and or the low lights, and skips over the middling murk of normal life that we live in most of the time. So, I’m not going there. Instead, I’m going to jump into my TARDIS to 2029 and look back at the 2020s…

In 2029 I’ll be almost 60, I’ll still be running and will finally have got a t-shirt worthy number of parkruns done. I’ll still be moaning about my hip, my ankle and probably other bits of me. But I’ll still be plodding, often with Mrs Jiminy beside me, in costume (from the second decade of Marvel films), around courses and taking our annual pilgrimage to Newcastle and the Great North Run.

Work will still be work, although I’ll note we are all complaining about the pay and car parking despite the fact that money was outlawed in 2025 and we all access work remotely by VR…

Mrs Jiminy and I will have had a decade of being favourite geeky Uncle & Aunt to the growing collection of friends children and (say it quietly) grandchildren… VR goggles are more truly immersive and the hug-suits (suits with air pockets that mimic the pressure and movements of a linked person) mean though we’re on our island retreat (complete with volcano for my lair) we’re never far away.

Health wise there’s been up and downs, threats of surgery have come and gone, and come again… but we’re still as active as we can be, having fun and smiling- even if our dream of climbing El Cap is only now a virtual one.

I was present when the baton was passed to the NW of England as it became initially the best CHD all-age service in the country and then the world. The loss of follow-up work that me and my charity chums had been banging on about since the early 2010s has led to lives being saved.

The Lego collection has now reached the stage where it’s on display for children of all ages to enjoy – yes, we got the gallery space… yes, we still have Lego to make from the wedding… no there’s never enough Lego…

So as the 2020s come to a close the shadows and the light.

To my friends who aren’t here, I have screamed at the night in my impotent rage at not being able to help you in your hour of need. I’ve tried to improve what we have, I’m sorry it never seems enough.

In terms of highs, I ran my 10^th Ultra, and won an age category (it was a very small race!!!), and I’ve done the Yorkshire three peaks in under 12h and finished the Fellsman.

Lastly, and most importantly; Mrs Jiminy is my rock and my star, over the last decade my love for her has deepened and become a feeling I can’t imagine ever being without. She makes us us and I can never say I love you enough.

TTFN and a Happy New Decade!!

Paul

I was last (man) and I loved it...

2019-10-21T22:18:00.001+01:00

I'm overweight and over slow - work has been hell, and my buttocks are moulded into the shape required to sit in the cheap seats of a virgin pendalino...

However, that doesn't matter cos this weekend I was racing the personification of Death himself (a him this time, not anything interesting from the fertile mind of Neil Gaiman).

The Beat the Reaper is a run like few others, two laps of a mixed terrain course... muddy enough to demand some grip, tarmacy enough to demand some cushioning and with an array of death's little helpers popping out to scare the willies out of the unsuspecting runners...

Mrs Jiminy and I dress for the occasion...

The other feature is that the Reaper is real, a ringer in plain sight - he starts at the back and races the pack, chases down those who dare think they're fast enough - I don't I was happy only to be lapped by the front 15 or so.

So, on to my race strategy - sounds odd, I was the last man how the hell could I have a race strategy... to get me around. The dicky ticker is the limiter, especially when I'm chunkier than ideal and not getting the miles in... So, it was a modified walk run - run 300m, walk 150, run 300 and walk out the km... 10 times...

This, like the GNR, is a run to smile through - the dappled sunlight through the woodland, the friendly marshals and running friends at start and finish. It's very easy to be negative when you're not running well, when health things are being a pain, work is busy and so on and so forth...

My only advice, for this run and the next is to smile, walk when you need to walk and enjoy the experience - no two races are the same, talk to people, you can have a lot of fun chatting with people at the back - maximising their value from the entry fee as you are...

So I was last man, does it matter - no. I loved it, does that matter - yes!

TTFN

Paul

Singing in the rain, the sunshine & the wind…

2019-09-16T22:33:00.004+01:00

This is our holiday week; other people’s children are back at school, its mid-season enough to be cheaper, mid-season enough that most places are still open, it’s mostly warm enough for Jiminy (Mrs Jiminy?), and mostly cool enough for me…

For various reasons we’re both significantly under fit, so knew that our game plan for the week was common sense and plod… and plod we did, the Whitley Bay park run was beautiful with views to St Mary’s Lighthouse and the coast, then the perennial Great North Run… I’m not sure if it was my 18^thor 19^thbut it’s an event, not a race (at least not where I am)… to give you an idea of the scale I was 1 ½ miles into my 13.1 as Sir Mo finished… it was hot, it was crowded, but the locals were as fab as ever; jelly babies & haribo, ice pops & water pistols, high fives & fist bumps – first or last it doesn’t matter- it’s a half marathon of fun and friendliness. We also had a mad dash around to find the elusive Elmers… recommended for a fun trip around Newcastle & the surrounding areas!

After the GNR was the dreaded 4am start, to get a cab to get to the train to get to the bus to get to the start of St Cuthbert’s Way. Whether it was the heat, the cold we’ve been fighting off, some of the haribo or just fatigue from working hard at the day jobs and our various charity thingies but we were wiped out, so did the first 19 miles of St Cuthbert’s Way the easy way… by bus… it did mean we got to see more of the towns we would normally have left early and arrived late in – a bagpipe playing pig and Mary Queen of Scots pears being highlights…

We also rested and got ready for the next day – which the book said was shorter than the various GPS devices told us when we finished. Midway was an expected delight – a church/café with Richard, a very nice chap, doing it all himself… the food was good, the cake was great and the welcome was warm – all of which we needed before the big hill into Kirk Yetholm. Wideopen Hill has its name for a reason that only pictures can show…

KY – you can make your own jokes – was the first of our hostel nights – a Friends of Nature hostel, which was amazingly quiet (only us two and one other in); quiet, friendly, warm, clean – with hot showers it was all we needed and more…

KY across the border to Wooler was always going to be a hard day, about 14 miles according to the book, and a lot of inclines.

The weather was odd, no other word for it… odd. Hot in the sun, unpleasantly warm for me, but so windy that anytime I stopped I froze… Mrs Jiminy, was cold throughout the day… We also had a strange encounter of the walking kind…

Canadian over took us - ski gauntlets, insufficient gear & listening to music...

Canadian over took us - ski gauntlets, insufficient gear & listening to music... who’d gotten lost...

Canadian over took us - ski gauntlets, insufficient gear & listening to music... who’d gotten lost again...

Canadian over took us - ski gauntlets, insufficient gear & listening to music... who hadn’t gotten lost, but was waiting for us with our map, book, GPS etc to point her in the right direction...

Now its always possible to get lost, but St Cuthbert’s Way is well waymarked, very well waymarked and the weather conditions though odd were not difficult to navigate in. Ok, I’m a walking nerd, so had map, book (inc mapping), OS map app, e-book, and Mrs Jiminy had the book as well… But only on a couple of occasions did we check the book – none on that day because the other pair of eyes normally found the “missing” waymarker or the next one in the distance.

We sang our nations national rugby songs as we crossed the border and as miles accumulated, various “marching” songs warbled up to scare the birds.

Wooler YHA was lovely, it was built as accommodation for the Woman’s Land Army during the war, and walls were covered with history or lovely paintings. We changed footwear here – because the terrain was getting easier, and our feet were beginning to feel the miles (see below for our gear review).

Wooler to Beal is a walk with three small ridges in the way, you can see the last of them pretty much from the first. It should, and was, an easy day’s walking apart from two things… We had unforecast rain, and I mean we were soggy in our waterproofs – and yet very warm… and when we got to our fabulous B&B with the lovely Anne and her friendly labradors, there was a power cut in the area… Fortunately the power was back on for tea so we ate well and readied ourselves for the last day.

Time and Tide don’t wait for anyone, especially not us, so we were a bit stuck on the last day of walking – we could follow the Pilgrim’s route across the sand, but would be racing the tide… or we could be sensible and walk the causeway, do the sights and get the bus back. Readers, we were sensible… A high speed dash across the causeway, only interrupted by playing with the gimbal and having to report dead seals, took us on to Holy Island. Where there was coffee, cake, chutney & honey… with added majestic views…

So that was the walking (and the GNR, and the parkrun) – all in c111km/70miles (plus walking to the pub, shops, bus etc) with a reasonable amount of height gain in a week – we’re happy with that for our first multi-day walk together, and given how underfit we are.

Gear review:

Boots – we both love our Alt-Berg Nordkapps – they hug our feet, and provide an excellent platform in anything muddy or ledgy, our feet didn’t move in them the two days we wore them. But they are fairly full on boots, and on stony trails and roads they didn’t flex like light boots do and our feet got tired.

Shoes – our second choice footwear – Salomons for Jiminy and Inov-8s for me – they worked, were softer under foot but we both missed the security (if not the weight of) the Alt-Bergs.

Waterproofs – Berghaus, your vapourlight hyper lightweight smocks and jackets are a work of magic, almost see through, lighter than some of my windproofs and yet waterproof in full on conditions. We love them and wished you’d still make them, because we know one day they’ll rip on a fence!!!

Backpacks – the highest accolade goes to Osprey for packs we didn’t notice; my Talon 18 is an old trooper these days, Mrs Jiminy’s Tempest 20 is new… none of the days did they need fiddling…

Tech – the Apple Watch kept chugging along, recording the walks for hours after the Garmin had died – ok it’s a little wrist strap style Garmin but it was soundly beaten by the Apple Watch. The IPhone XS was waterproof, and with the OS Map App we knew where we were and where the route was… we even played with VR at one point…

Books - The Cicerone guide book is great, as ever it takes a day to get into the mindset of the author, and I’ve emailed them about the harvesting of a plantation. There was one grumbly bit of navigation as well, but I think that was due to a farmer (and impromptu Grouse chasing... they were camera shy!) Harvey’s did the strip map, and that worked well as well.

Baggage - we had our big Osprey bags, designed for being lumped over long-distances... so we found Carrylite, a wonderful company that made it all work as if by magic, we left the bags in a hotel in Melrose, and then they just appeared at each of hostels and B&Bs we had asked them too drop them off at. No fuss, no bother, and remarkably good value - recommended Link to Carrylite

To answer the unspoken question – yup we will do another multi-day walk… just a question on when…

TTFN

Paul

Been a bit busy... sorry...

2019-08-21T23:07:00.001+01:00

It’s been a while, the longest gap since I started this blog many years ago…

It’s been a while for many reasons, not least I’ve been a bit busy and injured – and as regular readers know (well knew, its been a while) I don’t blog well when I’m injured.

I’ll start with the busyness… the good busyness… Jiminy Cricket is now Mrs Jiminy Cricket, we got married in June, with a small select gang of our closest friends up in Scotland – she looked as radiant as ever, I looked hot… We followed this with a day of celebrations for more of our friends – we started with our local Parkrun, followed by a walking tour and then finished with a proper party and one hell of a cake. We had friends from all of our worlds; some travelling for days to come and see us and join us in our happiness… THANK YOU ALL

We planned the hell out of the wedding and the celebration day, and between Mrs Jiminy Cricket’s attention to detail and my Bridezilla moments we had an almost stress free couple of days – I still worry about false teeth and inflatable batman taking too long to inflate… but if that’s the only stressors then I think we did good.

Our honeymoon was characterised by rain, lots of rain and lots of fun – our mini-castle was a wonderful base camp for adventures near and far, culinary and in virtual reality.

So what of the running… Well, I’ve tried… the new year half marathon was ok, a run walk that we enjoy, as there’s no pressure on anyone to finish quickly, apart from the pressure that all runners put on themselves. Then the first of real fun runs of the year – the Mad Dog, dressed as a hotdog (yes, it’s a hotdog – not a penis!)… However, half way around my ankle creaked and I walked the second half, in pain and grumpy.

The grumpiness continued for most of the spring, ankle not quite getting better, me trying (probably too early). However, I had some fun – Fat Thor is an easy costume for me to emulate (well the fat bit). Five and 10Ks came and went, as did the Liverpool Rock & Roll half: reasonable walk – run (definitely that way around).

We’ve walked a bit, again not as far or as high as we’d have liked – Ben A’an is a delight, short, steep, lovely views – if you do no other hill in Scotland do this one. It really is a beauty, and was Mrs Jiminy Cricket’s suggestion…

We also attempted The Cobbler – and had a fit of sanity, I’m experienced enough to know when to risk a yellow weather warning and when to change walks to something else… The mildly amusing Glen Loin and for ¾ of the walk I thought I’d sold us a pup, and then the heavens opened and the rain did bounce, and we got soaked. We were safe, it was a long and gently undulating walk – the height gain was accumulated in thighs rather than knowing you’d gone up and up. Special shout out to the Arrochar hotel who found and returned my beloved kindle… The journey back was a nightmare – the problem with the highlands, one road in, one road out… or other road out is a 70 mile diversion. But it was a good walk, and tested our new alt-berg boots out – lovely alt-bergs and in a weird couply thing, we have the same sort of odd shape feet – you’re meant to go aaaahhhhhh at that point, unless you don’t like feet.

We DNS’d a couple of runs, neither of us is completely injury free and then just as I’m feeling my ankle may be ok I bought some new walking sandals… wore them indoors, and all was fine… then walked outside for two kilometres and was bleeding… massive blisters on both heels – compeed is good, but nothing could make my heels able to be run on – so instead of building up for the Great North Run, I’ve been trying and failing to get myself ready solely for a weeks walking holiday.

Part of that, and part of my usual routine is the annual check-up… the first with the service now safely moved to Liverpool Heart and Chest – they were friendly and professional… Good job, Mrs Jiminy Cricket came along for the first time! Basic message, no real change from last time… At some point they’re going to want to replace a valve, no I’m not a candidate for trans-catheter, most of the "when" of when they want to do things will come down to when I start feeling effects… I know I’m not as fit as I should be, but two half-marathons and some long walks suggests that’s not now. There are many advantages to keeping fit with a CHD, one of them is knowing when things are beginning to slip… I need some luck with injuries and a bit more mojo and I’ll be back:-)

If I had any doubts, which all of us do, then walking around Edinburgh for the last couple of days helped push them away – Edinburgh isn’t a flat city, and c100,000 steps in five days puts a smile on my face.

It was a normal Edinburgh Festival & Fringe for me – in that I had a varied diet of pie, baked potato, curry, and pasta… I want a salad…

The shows varied from performing in a silent disco flash mob rendition of Bohemian Rhapsody, solo cellists showing off their range, an exploration of the universe by a nine-piece brass band, the songs of Bond and ten songs to make the world a better place (basically, don’t be a dick, and weirdoes will save the world).

So, where now – Newcastle & the Great North Run – so if you’re about give us a shout and lets see if the CHDers, CHD-rellies and CHD-friends can come together for a photo on the front…

TTFN

Paul

That was the year that was....

2018-12-30T21:36:00.002+00:00

My first blog in seven months... Sorry, so this is a bit of a round up... a reflection on 2018 if you like...

Friends have died this year, people I cared for, people I loved and people I admired for what they did and how they did it.

Some, like me, were born with their heart condition - none of them would have considered themselves sufferers, they looked forward to each new day with a smile, a grimace or the occasional ache and pain but they then lived that day. Not in some new age claptrap YOLO, live life to the max, being a warrior, because those ways are intensely tiring and when you are living life you don't need something else to tire you out.

There will always be regrets of conversations not finished, or worse not started, of hugs not given and news you can no longer share, but I am proud of them, the lives they lived and hope my part (however big or small) in their lives made them smile.

One thing that would've made many of them smile would've been the costumes Jiminy and I have worn as we've supported the Childrens' Heart Association - we've been Santas kidnapped by aliens, Harry & Meghan, R2D2 & BB8 and then in the weird category Hippos in Tu-Tus and Boxing Day Sharks...

The medal haul looks good...

But hides the fact but between the races (inc ones without medals - like when we raced a barge; it went through a tunnel, we went over the hill) I've barely trained, 10 park runs do not make a solid training base. So, the new year comes around and I'll try to build the good things in, the things I know I can do and have done before - the solid base, three or four runs a week most at a steady slow pace and cross-training in between - my new fun 45 minutes a week of boxercise and the bike and dreaded concept 2000 (I'm sorry my knees and elbows interlock on a regular basis... its not pretty)...

So what hit the training? Partly life, the fun stuff - the month in Oz, just me and Jiminy being me and Jiminy and the less fun stuff. Someone recently said that being a patient rep isn't an onerous task... No, it shouldn't be, but when a service collapses and patients are in harms way that's when patient reps lives can be turned upside down... The small group of us in the NW have given up lunchtimes, afternoons, evenings and weekends to attend meetings, argue for our care, to listen to patients concerns and do our damnedest to represent them fairly. Some of this will never be seen, the emails and calls alerting the nurses to patients on their way into A&E, who've raised what look like urgent concerns in our FB group, through to the time we spend just reading posts to see if there's something that can be done to help or ease what someone is going through. The CHA has been amazing in the support they've given us adults in the NW and without them I don't think we'd still be standing.

So in a year where I've been a Stormtrooper to Jiminy's Darth Vader; a bunny being chased by her fox, my last and biggest thanks is to her, for putting up with me when I've been wading through NHS terminology, getting grumpy and distracted by things...

So onto 2019, and the first run... (other than the park run) a gentle half marathon around West Lancashire - last year there was ice, and Freddos!!!

TTFN

Paul

The price of free(dom) events

2018-05-31T22:43:00.001+01:00

The thing about running more is I have more headspace to mull things over and to draft things in my head... So, as people know I do a fair amount behind the scenes for a number of charities, not just the heart ones most people associate me with – and this isn’t a humble brag. When Jiminy Cricket says she’s a charity widow its only half in jest.

Anyway, one of the things that always gets on my wick and therefore I will get off my chest is the concept of a “free event”. There is quite simply no such thing in charity world, probably in no world, but I’ll stick to the charity world for a reason.

At its easiest a free event costs look like this:

1) Time to take the call/email about the offer of tickets etc.

2) Time to check that this is legitimate, that it meets the charities aims and objectives, that it’s something you want to be associated with and to agree how its going to be advertised.

3) Time to confirm all this with the organisers.

4) Time to set up how you’re going to advertise things.

5) Time to advertise, take bookings and distribute tickets (ideally e-tickets).

6) Time to evaluate the event.

7) Time to thank the organisers (because they may have more tickets in the future).

That’s the simple version, other bits that may need doing:

1) Bid for the tickets in the first place – some events have a charity allocation you can apply for.

2) Confirm the specifics of who can get the tickets – I’ve walked away from free tickets for a charity thing where they wanted “sick looking kids for the photos” – the PR person may never have heard the language I used that day.

3) Sort the admin and fill in the paperwork.

4) Organise transport.

5) Organise volunteers to support attendees at the event.

6) If paper tickets organise volunteers to hand over the tickets to attendees.

7) Write a formal report on the event, and what your attendees got out of it, for the organisers – sometimes so they can justify giving you tickets next time.

8) Provide photos to event organisers for their publicity material.

9) Provide quotes for promotional material and the press.

And most importantly

10) The charity may be buying the tickets, possibly at a discount, because they feel it’d be a good event to be at.

And there’s probably many things I’m forgetting…

For the charities that have staff, paid staff, this all costs money – the money you and I donate, raise through events and others give willingly. For those who are just run on a voluntary basis; its evenings, lunch hours, time with loved ones (sorry Jiminy) and family.

Which why my plea is that if you sign up for free event you attend, or if you can’t attend (and I know kids can get ill, shit happens and Thanos might click his fingers at any moment) you let people know in good time. Sometimes you’ll have got the tickets others wanted…

So be free – and remember there’s no such thing as a free charity event.

TTFN

Plodding with purpose

2018-05-29T21:58:00.001+01:00

May...

Hot May...

Bloody hot May...

I warn people about the headwind on the Prom during the Liverpool Half Marathon and Marathon... now I have to warn them about when its not there, four miles of baking heat watching the end point apparently not getting closer... But the half was done, 10 min slower than target, but as I may have mentioned it was hot. That was the middle run of the weekend - with the 5k on the Saturday and the mile straight after the half - all in costume, with Jiminy in matching pairs - Harry & Meghan and then Cap to my Hulk...

As ever the medals were awesome... and the beer was free:-)

The rest of the month has been interesting too...

A good solid run at the Walton Park 5 miles - I had a plan and I stuck to it, plodding out the KMs one at a time until the number reached 8 and then got the decent medal, with integrated bottle opener, and towel..

Then in change of pace a trip to the Peak, taking Jiminy to my favourite hills for the first time, to take part in an art installation.... well night hike along the Great Ridge to support the BMC Mend the Mountains campaign...

I've also started doing a little bit of Parkrun tourism and instead of being at home and doing Crosby went to Highbury Fields... and it is a bit different, the important things are the same - friendly people facilitating a 5k at their own pace - and that pace varied a lot. With six small hills, in five loops of a small park I freely and happily admit I was lapped... the speediest bollocks lapped me twice once at 800m and once at 1500m... and I plodded on, keeping to my walk run strategy and bringing in a Parkrun PB :-)

So, off to another Parkrun this weekend - to celebrate a friends ton of park runs - I'm only at 5... so a few more to go:-)

The important thing about the runs this month is the structure of my runs, and I'm getting out two or three times a week. Plodding is where I am, and I'm beginning to do it with a smile...

TTFN

Paul

Marx has a saying about clubs

2018-04-01T18:24:00.000+01:00

We live in a very strange and petty world at times.

With my mojo on a sabbatical, and Jiminy Cricket's neck and back still suffering from whiplash we've not been running as much as normal. Throw in the charity stuff I've been up to and that thing called life we've not been as active in a running club as we like to be (we've both previously volunteered to support club runs etc).

I'm not sure if its been our absence, but it hasn't made the heart grow fonder. All I want from a running club is fun, and the rules to be followed consistently (and linked to that there being some rules).

I'm a simple soul; and I've run too many clubs, been a trustee of too many things, organised too much and sat in too many damn committees to know that everything runs swimmingly all the time. The hardest thing is sometimes to walk away from something that has gone a little bit rancid.

Which is where my old club has made things easy... It is not wrong to ask how an offer is being made available to all club members nor is it wrong to ask for a copy of the rules (in this case a copy of the club constitution). The reaction to this simple request was dead wrong - rather than clarifying and supplying I was attacked. Not too many other words for the self-appointed defenders of a committee telling someone to have a word with themselves, get real and get a life (the last one complete with an implication that my life as a disabled person is less than theirs).

Now, this is a club that has proudly said that it doesn't tolerate bullies and has excluded people on that basis (I can't comment on the exclusion - I wasn't there and I don't pick sides on the basis of hearsay). Which is why it then beggars belief that when I report this activity to the Chair I get called a "troublemaker" and informed that "there are other clubs in the area".

Nice.

Being me, this didn't have the desired effect - hell, "troublemaker" is almost a sub-section in my job plan - I think of the trouble others haven't yet thought of to try and stop it before it starts...

So, I asked again for the constitution... and asked, and enquired as to the health of the Chair, and had to tweet the club account to check the email was working...

Eventually, I got an answer... well an email... Apparently the committee has "deemed" what I was subjected to as "not bullying" - but they haven't provided a rationale nor have they discussed it with me - so the additional actions of committee members went undiscussed. There was no apology for the commentary that I was a troublemaker, and the promised constitution will be "posted to me".

I've emailed again to seek a time line and because of the way its been handled submitted a DPA request for the Committee's deliberations... That email hasn't even been acknowledged.

Why am I wasting electrons on this? Because I care, this was a good, if not great club, run by committed passionate people who understood that there needs to be fun and rules. Now, we have a club that seems to be rules for the committee and the rest of us aren't even allowed to see the rule book.

So, as I can't make my concerns known to the club's facebook group - I seem to have been thrown off that too I will do what I normally do when I'm grumpy and pissed off - write a blog. Oh, and find a club where the rules are clear, and ideally there's a lot of fun...

TTFN

Paul

PS as anyone who knows me would expect I have copies of emails, screenshots and other bits and bobs...

PPS Groucho, not Karl

PPS Happier running days...

It's Grim up North (West) - please share...

2018-02-25T19:58:00.003+00:00

This is an article written by the four North-West England Adult Congenital Heart Patient Reps...

Please share so people know what's been going on, and where to go if their in our area and haven't had an appointment for a while...

[This was written for a national charity, and they've given us permission to share it ahead of publication]

The closed facebook group for the adult patients in the NW is

https://www.facebook.com/groups/MACHnetwork/

The Helpline Number is 0161 276 7959 (please leave a message with a number for a return call).

------------

Being a patient rep often sounds like a fun job, you get to spend more time with the clinical teams that support and look after us, help improve services and generally make sure that the patient voice is heard. For us in the North West that’s been done through the patient reps who were chosen by the regional focus group; principally Anna Burns and Paul Willgoss. We’ve worked closely with the regional congenital heart charity (the Children’s Heart Association) and joined things up between the paediatric network and the adult network management.

And then becoming a patient rep become more intense, and in some ways more important. There was a focus group meeting around Easter 2017, our only adult surgeon in the area was leaving for a job in London. We, the patient reps, were told we could only tell people in our closed Facebook group, and that all would be fine, they’d recruit a new surgeon. This was in the end stages of the consultation on the changes to congenital heart surgery when both the Liverpool and Manchester hospitals were hoping to be commissioned to provide the Level 1 adult congenital heart service. We needed to be unbiased to both hospitals as we represented patients from across the North West. Our message was that we didn’t mind where the service was based so long as we ended up with a world class service in our area – soon!

The weeks pressed on and there was no official mention of the lack of a surgeon in the North West – so we did what we had to and wrote to the Chief Executive of the Trust and provided information to others in the focus group so they could do the same. This approach of asking our group to be involved, to magnify the reach and power of the messages became critical to what we had to do in the coming months.

Anna and Paul were invited to meeting with the management at Manchester (who were the centre of the Network in the NW) and NHS England. At this point we realised that this wasn’t just about the recruitment of a surgeon being delayed due to an ongoing consultation – the cardiologists we relied on were either on long term absence or about to move, the interventionist was leaving too… Effectively we had no service for a population of just over 7 million and many thousands of GUCHs.

It’s hard to summarise the months of meetings and telephone calls in a paragraph, but we’ve taken the patient voice and made sure it was heard. We worked with the patient focus group and the Children’s Heart Association to make sure what was meant to happen, actually happened and continues to happen. We use our social media groups to spread the word and to find out if there are problems with care or information. So, we know that even now not all patients in the NW have been told what’s going on – because not even all the patient reps got the official notification of the issues. We’ve asked for clear information to be put on the hospitals websites, and keep asking, and will keep asking. We ensured that travel, and where needed overnight costs, for patients required to travel to Leeds, Newcastle, Birmingham or London were paid for by the NHS – we also raised issues where patients were out of pocket because the paperwork hadn’t been issued. We’ve helped patients who were stuck in the wrong hospital, and helped people with symptoms get appointments. We were open and honest and tried to provide updates that made sense to people.

We also took part in some big events – Paul, & Anne Flear, spoke (and were streamed to the world) http://www.cmft.nhs.uk/livestream at the event organised to try and explain what was going on to the patients. Anna talked on BBC Radio Manchester (and was much clearer and more informed than the local MP), Paul and another patient were interviewed on Radio 5 Drive Time. We all went outside of our comfort zone, we all tried to be balanced and fair, and to let the patients in the NW know that someone was fighting, tirelessly, in their corner.

We also used the power of patients and social media – the online petition asking NHS England to make the decision about the configuration of the services earlier than planned gained almost 4000 signatures, the “making your mind up” twitter and mass writing to Jeremy Hunt campaign was noted by many as the sort of gallows humour that us GUCHs specialise in. We’ve also started training up extra reps, such as Gail, people who know the systems in the NW and know the services – because they use them.

Now the reconfiguration has been decided, our role has changed a little – or rather we have more positive things to do. Our core role in support patients is always going to be there, but we also get the chance to help build the service that all of us in the NW deserve.

We can’t thank some people enough – Anne Flear and the Children’s Heart Association who supported us through paying for the meetings, room hire and when the reps needed to get together. Most especially we have to thank the patients, the GUCHs in the NW who have told us how they have been affected and have given us permission to use their stories to show NHS management that our concerns are based on real events. Without your trust, questions and perseverance our job would have been impossible.

Anna Burns (Patient Rep)

Anne Flear (Chair – Children’s Heart Association)
Gail Maguire (Patient Rep)

Paul Willgoss (Patient Rep)

Stepping out - A question of algorithms

2018-01-18T20:40:00.001+00:00

I have two devices and three algorithms that count my daily steps...

(The fitbit died)...

An Apple Watch...

The iPhone health app...

The Fitbit app on the phone...

Never do the three agree.

I can understand the watch being different from the other two, I don't normally leave it on the desk when I get a coffee, I rarely wander off leaving it on the side.

The other two are using the same hardware - the phone, with its accelerometer and inbuilt gizmos...

How much of a difference? Well, I've had an interesting day at work, where I've been shackled to the desk, have been feeling rough and headachy - so a good wish test, no runs or gym sessions...

The watch - 8315
Health App - 7713
Fitbit - 7106

That's 10% difference between the two on the same hardware.

The next question is should I be bothered? The scientist in me is, I want to unpick what the difference is and why it's so stark on the same hardware. But there is a bigger question, how accurate are step trackers anyway... The answer is range of + or - ( at the extremes of) 10% Tracker accuracy

The even bigger question is does it matter - simply put something is better than nothing, but 10,000 steps isn't a magic number. Most people don't walk 10,000 steps, its closer to 5000, so walking 10,000 is a big increase and a large time commitment.

The 10,000 figure is an artefact of the Japanese olympics, in the mid-1960s... But as a rule of thumb for most people doubling your steps is a good thing Beeb - 10k steps

Why do I keep saying most people? Because not everyone can do 10,00 steps, not everyone can do 5,000. I'm not going to go into wheelchair exercise, because I'm not competent to do so, but I've seen more than a few campaigns for those if us with dicky tickers where our cardiologist calibrates the target, making sure that we slowly build up our steps towards a safe target. I also know a few who've been given an activity tracker to give a max figure, to ensure that the stay safe.

If in doubt, ask you doctor. They should be able to help, to point you towards someone who can.

So, 10% inaccurate, based on a dodgy genesis and with limited evidence for a threshold effect - why do I it... because its fun, and on days like today its that little nudge to get out in the cold and wet to get more steps in. Will I make my main target of 14,000 - maybe, maybe not.

One last point before this ramble concludes, there is a special ring of hell for those who cheat on their steps...

You can do it a lot easier than this - attaching it to your dog seems to be common... as is just swinging it about... All you do is cheat yourself, and also demoralise people trying to walk their step legitimately. So, stop it!

On which point, I'm going to have another cup of tea, watch a documentary and think about going for a walk...

TTFN

Paul

Getting Chilly, Going Large

2018-01-07T21:41:00.001+00:00

As regular readers may have noticed I often follow my own advice and take things easy, slowly build up my distance and speed and generally just add 10% a week to my mileage...

Those of you not choking on your cornflakes may not realise that this is cobblers... Upon occasion, especially on a run where I know the time cut offs are generous, I will take a punt and start the exercise regime for a year with something fun...

So, Jiminy Cricket and I headed north, to the wilds of Lancashire for the Fylde Coast Runners Central Lancs New Year Half Marathon - my simple target get around and have some fun while I did... And to try and make sure Jiminy wasn't sat around in basecamp (the local primary school) for too long while I trundled along.

Unlike most runs I do, this was on open roads so there were cars on the roads with the runners - which wasn't the problem I feared as the run was on quiet lanes, and most runners were sensible and tucked in when cars went past. Did mean that the roads weren't gritted though... So I was very glad I found a replacement pair of trainers yesterday - my main ones having lost rubber grip on the runs last year and have become at best slippers...

The views were glorious... with some amusingly appropriate villages and pubs...

Garmin Connect Relive Video

Basically I was slow - 2:55 and change is a long way off my best, but I finished smiling:-) With a huge medal...

Yes the medal was that big...

So, a possible for next year, and a good way to start things for this year...

TTFN

Paul

Running Review 2017

2017-12-28T18:10:00.000+00:00

Its been a year... a complete desertion of the mojo, a niggling hip injury and a tad of achilles tendonitis has meant that the training has gone for a long walk... even that didn't run away, just gently sauntered into the sunset...

However, I am and will always be a medal whore, so whilst I've not run consistently I have got my sorry arse out of bed for runs and events. The inaugural Wirral trail half marathon started the year, a gentle cold slog along the Wirral Way, flat with squelchy bits... The glory of the MadDog 10k - with its awesome goody bag - containing a bag, well rucksack. The National Trust run around around the grounds and deserted airfield near a Tudor mansion - Speke Hall. The horror of the BTR half marathon... BTR Half, guess what, still no explanation... let alone an apology!

The double header of the Spring 5 & 10K in Sefton Park showed how cock-ups should be dealt with - a shortage of t-shirts meant that names were taken and a little while later a very posh looking bag turned up with a t-shirt in. It's simple when you care.

Rock n Roll marathons have a good reputation - the warm up 5k on the Saturday, the ease with which I could drop down to the half from the full, the water stations with water, the bands... and being able to support jiminy cricket as she did her first full 26.2. The medals are stunners, as ever, and the bonus medals for completing two runs in the weekend and doing last year and this just make you smile... and result in you heading off to parts foreign...

Interwoven with these were two Rough Runners - imagine Total Wipeout, hybridised with a 10k but instead of the warmth of Argentina, in both Edinburgh and Manchester... The water was not warm. The river crossing was interesting. The sight of someone with a compound fracture of their leg was mildly offputting... There was also the Kessel Run, a virtual run with a hunk of junk as a medal... Also the Tony Barnes Memorial 5 miler won a special place in my heart... for serving curry at the finish!!!

The great north run is an event rather than a run, lots of people, lots of love, the Red Arrows and Newcastle - the stay in the caravan, the charity meals and tent all are part of the weekend of fun.

Then, as jiminy cricket had seen the world rocker medal that you get if you run two events in different countries we headed to Lisbon, with a tropical heat wave hitting... 34 C, 93 F, was warm... who am I trying to kid, it was unpleasantly hot, they ran out of water... but had a mini-bus delivering supplies to the back markers (of which I am not ashamed to say I was one). My main thought at the end of it? I was very glad I wasn't doing the marathon... Lisbon RnR

We beat the reaper... Reaper and got some funny looks on the way there and back...

Then our nerdiness took over for the Santa Dash (unfortunately done by BTR - so the end was crowded to a worrying degree) Batman-Santa, Robin-Santa

And finally we let it all go to our heads with the annual turkey trot...

And the full year... Five half marathons, a lot of sweat, nothing close to a PB and hopefully the glimmerings of the mojo returning...

So, the plans are being hatched for next year... the early races are in the calendar (and some of the ones we try and do every year). We have adventures and I can guarantee there will be medals...

TTFN

Paul

It’s been awhile…

2017-10-08T22:09:00.000+01:00

Oppsy – the blog has been unwritten for many a month. There has been a series of very good reasons, but still the blog has been unwritten.

However, I’ve said I write the blog best when I’m running well – and I’m not running well, the hip injury from months ago is still lurking, mainly hurting when I’ve sat down for far too long. Which given I have a sitting down job and spend significant hours sat on a train getting around the country is a bit of a bugger…

So as I’ve started groping towards getting back into the running its time for a catch-up montage blog…

The degree is over; I’ve submitted my last Tutor Marked Assessment and passed the last module and now have a silly amount of letters to add after the other letters after my name – BA (Hons) Open (Open) – so I stand astride CP Snow’s two worlds, a scientist who loves science and a student of the Arts (as in Art History) with large dollops of Religious Studies and Heritage Studies. The Open University is a curates egg – at its best it was brilliant, and I’m sitting here smiling remembering the tutorials on Heritage Studies and Religion, the hours I spent peering at art works, architecture and piecing together object biographies. At its worst it’s a slog, with disinterested tutors who don’t seem to be able to follow their own guidance and a bureaucracy that makes this bureaucrat shudder in horror.

The door handle of medals looks good, but the times they are so slow… I’m heavier, slower and less determined than the early part of last year. Some of that is because last year was so good… Those PBs came, through hard work and sweat, with occasional blood… This year, I’m running for the medals and barely running in between. But I’ve still got around four half marathons, a smattering of others and still am smiling… most of the time.

So far so boring, but what is taking my time…

The bad is the fact that the adult congenital heart service in the North West has collapsed – a series of unfortunate events with surgeons, cardiologists and nurses leaving the service, at the same time its being reviewed. Dealing with NHS administrators can be tiring when its not so important, but when it is important then that balance of having to suck up their veiled insults and patronising approach and not losing your temper it is intensely tiring. The small group of excellent patients reps in the NW are doing a great job is keeping the pressure on, but it takes time…

The good is that Jiminy Cricket and I have moved into together and haven’t killed each other… yet! My mountain of odd socks is a cause for concern; in my defence my old place was a bit dingy so I probably didn’t notice them being odd. There are still boxes that need to be investigated, bags to rummaged in, but the important things is we’re together and enjoying each other’s company.

So, where next – me and Jiminy are off to Lisbon for another half (and a trip around the town), there’s another Rough Runner (obstacles, water, and a 10k) – yes the last one I did in a kilt – and beat the reaper. I’ve also got my dicky ticker check-up and the usual randomness of life will throw spanners, hammers and bananas but on we will plod.

I promise a blog a month… maybe more, but life is being lived….

TTFN

Paul

The end of an era...

2017-04-10T21:36:00.000+01:00

The time has almost come to say goodbye to a good friend, one that has been mistreated by those who should know better and which despite everything I still love...

Yes, I'm talking about my mobile phone.

I'm normally a sticker, if I start with something I stay with it... And so my first phones, with almost no exceptions were Nokia's... The sporty ones, the business ones (oh E71 what a phone you were), the N78... my first phone which had a camera worthy of the name.

The came a mild flirtation with Android... a HTC Desire... and the realisation that not all phone companies bothered keeping phones up to date... and that Android was a buggy, laggy mess with lousy cameras.

And so I fled back to Nokia... this time with windows phone... Seamless integration with social media, excellent camera, useable versions of word and powerpoint that helped with charity and OU stuff. It just worked, where there was an app gap nokia provided good or excellent alternatives - nokia music for napster...

The glorious 1520 came next, that 6" of wonderful bright red, huge screen that was genuinely big enough to read documents and watch tv on. Fast, but the cracks were showing... things that had been hardwired into the operating system got broken, and apps had to be hunted for - that seamless integration with social media went, apps were promised and never turned up... beautifully crafted and flawed by its software...

I probably should've changed then, realised that something I loved was getting left behind, wasn't going to be able to do what I wanted...

But Window's 10 was promised, and as an insider I could get the phone at a swanky do with champers, a docking station to use it as a netbook, iris detection... and one hell of a camera...

Good enough to feature in my end of module essay on renaissance art.

But the app gap and the features still aren't there... I've love cortana, but she doesn't talk to Alexa (the amazon app is a web wrap), the apps for many things are there, but old and less well featured than the versions on iOS and Android.

And so the demise is almost upon us... Windows phone has features I love... but the iOS version of outlook is better, the iOS version of word is as good and the apps I use are there... Strava, Viewranger, IFTTT any food or drink app...

It's been a blast nokia/microsoft but the end is here... Google, well they allowed someone to take £600 out of my bank account, and then said it was just a cancelled order... So I won't go near Android (and I do like to choose what data I share). So I suspect the iPhone will be mine, shiny and souless... Siri a baby-cortana without a sense of humour, a camera which is ok... and only ok...

The odd thing is it will one of the most Microsoft iPhone's out there - outlook, word, one drive... because they are better than the iOS standard...

This is a first world problem, and I know my tongue is well and truly in my cheek... but it is sad that something that has defined part of my technology life from the early 2000s is going to end... not today, not tomorrow, but sometime in the next couple of months...

The end of an era... time to become an iSheep...

TTFN

Paul

Never say Never Again... Apart from this time

2017-04-04T19:16:00.001+01:00

I'm a simple soul at heart...

All I really want from a race is good organisation, and some form of thing for finishing... Yes I'm a medal whore, but I've a set of mugs, t-shirts and even a small number of cuddly toys...

Good organisation however is not something I tend to negotiate on, yes if its organised by a small charity and there's a cock-up I may be diplomatic. However, when your t-shirt claims you are the Premier Road Race in Liverpool then you have zero degrees of freedom in providing good organisation.

A long time ago, I swore I wouldn't run a BTR event again - the endless arguments that I should get a t-shirt when I finished (the excuse always being someone else took them), the times they ran out of water (always due to someone drinking too much) and the marathon that started 50 minutes late with no explanation, water stations closing down and the final indignity of my bag being left in a muddy puddle (that was all Merseyside Police's fault).

I would love to run more in Liverpool, its my adopted home and has been for the best part of thirty years. As much as I hate the headwind on the Prom, I love the sense of achievement of making it over the top of Upper Parliament Street, and the beauty of Princes and Sefton Park.

Talking to friends they said that BTR had cleaned up its act, t-shirts were there, water was always available...

And so, with a little trepidation but with hope in my heart I entered...

The course is the course, the bits I love, the bits I hate... But at three miles there was no water... a couple of trestle tables regaled in the sponsors logos and flags proudly flying. Now, some will argue that three miles isn't needed - apart from the guidance for race directors says that its should be there (for any run over 10k) and its being a lovely spring day, there would be a knock on effect... as people got thirstier as they got further around the course...

And boy was there an impact - no water at nine miles... and a narky steward who when I politely asked where the water was who said there were 4 tonnes of water, so it wasn't his fault.

At which point I moved from run-walk to walk-jog. I'm not anywhere near as fit as I like to be, and I'm not going to drain myself completely because a run director is unable to provide what they are required to do, or what they said they would.

So, half the water stations didn't have water... and the last one was looking rather low when I went through (not last - and that shouldn't matter anyway). Not one being low, as does happen in some races, but two not being there...

The reason given for the first station not being there - the lock broke and this was outside of the director's control... rubbish, a race director should be in control, that's the definition of their job.

In terms of the provision of water again it's clearly stated:

Race Licence Standards require on-course drinks stations to be provided for races of 10km or greater, at approximately 5km intervals. On-course drink stations must be clearly signed in advance and not situated on the running line. Drinks must also be provided for the entire field at the end of the race. Race Director's Handbook

So, what sanction is there... The Race Director says it isn't his fault, the sponsor says talk to the Race Director. My only sanction is to say never again, and not run a BTR event ever again. Maybe this was just unlucky, but I've run in probably over an hundred races now only those from BTR have ever run out of water.

I only hope those also affected don't view the issues or the lack or adequate response as indicative of my home city... Trust me its not, the kid who offered me his coke can, and the Race Angel running back from the last water station to try and get water to people - they're indicative, not BTR.

So, I'm angry... and disappointed...

Paul

Heroes

2017-03-28T21:20:00.001+01:00

I've said before that I'm a lucky sod, I've met many of my heroes, that strange mix of people who inspire me and keep inspiring me.

And so on the way back from a weekend in Scotland we took a detour, rather than head straight to Liverpool we went down the the east coast to see one of these heroes of mine.

Kieran is a try-er, he doesn't stop trying... I remember walking with him up Mam Tor, him in not a good way, his heart not in the best of conditions. His humour and sense of wonder of being in the outdoors was infectious. He fell asleep in his pint, but a legend was born. The next day he pulled on his boots and walked again.

That was a while ago and since then he's been given one hell of a gift, he's had a heart transplant and is trying again to do what he can to say thank you for that gift. He's run the London Marathon, twice, and jumped out of a plane. All of which have raised cash... But he's had a dream, for as long as I've known him of walking around the coast, the coast of Britain.

And so he's reached the point in his life where this is possible, if not sensible... I saw him on Day 1, back in London as he was full of enthusiasm and had a rucksack that was far too heavy... and I saw him in Belford, still full of enthusiasm and with a rucksack that was still far too heavy - but long distance walking is like that, your rucksack is always far too heavy!

He has changed a bit - the beard is a novelty...

The pose, well its the pose ,of that well known Gooner Sir Mo!!!

So this is a post with a message - support him, his efforts are going to fund research into congenital heart defects, so sponsor him... Also if you can, take him in for a night, he is house trained but might be a bit weary. He's just reached Scotland, so if you can put him up, or throw him a scotch egg then please do.

His website is here - https://atrailoftwohearts.com

and you can donate here - https://www.justgiving.com/fundraising/ATrailofTwoHearts

Life (un)limiting conditions

2017-02-12T22:24:00.002+00:00

This is not a blog which will head of into new age clap trap, nor is it one that will say that all change come from within. This is one of those blogs inspired by a conversation with a younger person with a dicky ticker, and yes they're happy with me to post it... Its a conversation that we've had over a couple of years.

It starts with a simple statement - I am a dinosaur.

My surgery was in the first 300 of its type at Great Ormond Street.

It was done 41 years ago - the machinery used to keep me alive during that surgery is quite literally in a museum. If you walk into the Science Museum in London, walk into the gallery of scientific progress, (its a right turn after the entrance), you'll get to a big hall and on the right there's a heart bypass machine from the late 60's... It looks like a piece of industrial kitchen equipment. Nothing is digital, nothing seems to be automated. In short it looks crude.

That's because it was. That's not a criticism, its a statement of scientific progress - the surgery I had was based on echoes, catheters, x-rays and guess work. MRI scans weren't patented until 1977, real time MRI scanning of the heart - mid 80's. 3-D printing a heart so a surgeon can handle it - last couple of years.

Throw in the advances in medication, the changing attitudes to exercise, the better care all round the developed view that we're not fixed and we need life long care and the rationale for crude, is I hope apparent.

So, where is this going? This isn't a a woe-is-me post. I'm too old and grumpy for that. Its an attempt to show that the youngsters and children of today shouldn't be limited by what they see my generation of dicky ticker people able to do or not to do. And that rolls down the generations, those who are 35 aren't the same as those who are 25, and 15 and 5 and not yet born.

If you younger dicky-ticker people can be bothered to look at us, look at us as we look at things in museums, things to wonder how they kept going, occasionally admired because they still work, but never, ever to be limited by.

If you, as a younger model want to test your limits then ask what's safe, ask what's the issue is - the most powerful word in the vocabulary is "Why?" Especially when paired with "not". I know the answer to some things - for me, as a dinosaur - so I adapt and find other ways of having fun (indoor skydiving), but I only know because I've asked.

So, when my young friend asked me how do I live with a life limiting condition, I asked them what they meant.

Life is to be lived, no-one, not one single person on the planet can do everything they want to do. As a dinosaur I know that asteroids hit, I've seen too many take out too many friends. I chose to view my life as opportunity, as a life to be lived - with its scars, tablets, tears and laughs, hugs, kisses and experiences. I am sensible and don't go, too far, beyond the boundaries I set with the help of my medical team.

As a wise person once said sometimes - you must unlearn what you have learned (thank you Master Yoda) - which in this case means define your own limits, find your own adaptations and leave the dinosaurs to their own... They may by some fluke be the same, but they are likely to be different...

Which is enough should searching - Mad Dog 10 K - my nose still isn't fully functional, and I pretty much didn't run from the half marathon to the 10K - funnily enough I was slow... 10min slower than last year. Still loved it though, the route is an old favourite, the bands excellent (Elvis is getting worse, and he wasn't good, but he is a feature) and the goody bag was beyond compare - t-shirt, medal, buff, sports towel - and a decent rucksack to keep them in!

Happy Congenital Heart Disease Awareness month!

TTFN

Paul

Battling Back... and being stupid

2017-01-15T22:47:00.002+00:00

There's many ways to start a training campaign... There's plenty of advice on how to start... There's the apps that will take you from couch to 5k.

Or you can end up not running for the best part of two months, and not running consistently for six and decide to kick things off with a trail half marathon.

THIS IS NOT A RECOMMENDED COURSE OF ACTION!!!!

There are is a mild arrogance amongst a few of my friends, and indeed myself, who know deep down that on the day, with a medal at end, that we can strap on the shoes and churn it out. We've lost count of the runs we've done of the years. Our medal collection has reached the point where we only keep the ones that mean something; the ultras, the marathons, the firsts and ones that just caught on our souls.

These runs with nothing behind them aren't, normally, the miracle runs you read about in the magazines - the ones where someone whose never run before runs an 80 minute half marathon. These are long, slow and gentle. The sort of runs that you run because... just because... and although the smile may slip into a grimace more often that it should you are smiling. Your body doesn't respond quite as it does when trained properly, your legs don't rotate as quickly as they should. But the body does respond and the legs do rotate... and you do smile.

13.1 is a long way, and as a shock to the system its worked. The shock is threefold; I'm a lot slower than I can be, I can still bang out a half marathon and most importantly it didn't hurt... well didn't hurt too much.

The timeline is well known to me now - the initial shock passes, the runs become more frequent, I start getting bored with the walk breaks and will start running through. The legs will start to rotate faster and slowly, oh so slowly I will move from being a plodder to a runner... and I will transition to a training plan, and the strength will start coming back and at the end of May I'll add another one of those marathon medals to the collection.

That's the plan, and if I can plod 13.1 along the Wirral Way then there's no reason why it won't happen. Injuries will happen, illness will happen and no plan survives first contact with real life. But I'm coming back...

And to re-empahise DO NOT KICK THINGS OFF WITH A HALF MARATHON THIS WAS A STUPID THING TO DO.

TTFN

Paul

The 2016 Medal Haul

2017-01-02T20:09:00.001+00:00

I've said before that I'm a medal whore... show me something shiny and I'm there... Not for me the Gold, Silver or Bronze of the Paralympics, or Olympics, but something more tangible.

Headstones (from beating the reaper), Rudolph's from Santa Dashes, representations of Mad Dogs, Countries, Romulan WarBirds, drum kits, the Liver Buildings and not forgetting Sefton Park and Scousers!

In piles, its shows five x 5ks, one 8kish, six x 10k, two x Half Marathons and one Marathon... And then the bonus medals - two guitars with spinning plectrums, a juke box, a pair of headphones and a giant globe (if you too like medals check out Rock and Roll runs - always well organised and bonus medals galore for the dedicated whore).

The medals are tangible, solid memories of the firsts - first fancy dress race, first overseas race, first virtual run, and my first 10k under an hour. They clank as a reminder of what I have done and hint at what I will do in 2017.

Something's are set for 2017, the Liverpool Rock and Roll, the Sefton 5 & 10k, the Mad Dog, The GNR, and next weekend the Wirral Way Half Marathon - a new race, its first running and me barely keeping the dust off my trainers. My only "advantage"... Many years ago when unsure if I could survive running a marathon, I did the Wirral Way as a there and back... With a few added miles it was my first marathon. No medal, no t-shirt, just a memory as strong as a medal induced first.

Yes I need a longer arm on my sofa!

So, I hope 2017 is great and look forward to seeing some of you on the hunt for medals!

TTFN

Paul