The Walker With Heart

My Fellow [insert your favourite term be it GUCHs/ACHDers/Turnips*], this is one of those times where you can make a real difference.   Not just for yourselves but for everyone who has our condition now and in the future. for now . The NHS is reviewing how we are looked after. We’re at the stage where you chipping in can be the edge of a lever.   Sticking your thoughts in now can influence the Advisory Group’s thinking before it goes out to formal consultation. My vested interest, I’m an Advisory Group member.   I’m there as the Children’s Heart Federation representative with a special interest in making sure transition works.   As I hope most of you know I also am a   GUCH/ACHDer/Turnip*.      As part of the Advisory Group my job is to make sure the standards make sense, will work for us the patients, and are in my phrase of the day are “pragmatically aspirational”.   I’m geographically neutral, I have to be, the standards...

At the end of the day I was 5 minutes outside of my target time, so not a bad effort... I have no idea why I started throwing up at 4km - I was doing fine, gently moving into plod mode, hitting my KMs in the times I had in my head.  I sipped the water from the first station, and promptly my guts went south and my energy bar came north... Deeply deeply unpleasant - and nothing was different from most other runs I've done in the last couple of years... So I retreated to the 1st aid van, sat down... I'll call this my Sophie Raworth moment.. waited for the bile to ease, and was ready to divert down the 10k route.  But I started to feel better, and the guys at the 1st aid station were reminding me I had another 5 hours to finish the course... So I buckled down, and started to walk... at that point I knew I was the last half marathon runner on the course.  I expected to be last, hell my estimates were 13 miles and 1500ft of ascent and a target time of 3:30... Then the r...

So the weekend is over... A weekend of pomp and pageantry... And an anniversary for me, of meeting The Queen... Nice when you can name drop like that:-) Two years (and a few days ago) I received my MBE, in a day I'll never forget.  She is iconic, majestic and incredibly short... The real reason we're told to only bow from the neck, isn't a question of respect, but because if I'd bowed from the waist I'd have headbutted the Head of State... Never assume that she never smiles, she radiated charm and calmed down all who stood before her that day.  And every day she meets people. And yes the republicans will moan, and yes they have some small points. But every country without a monarch invest something else instead... with a variety of trappings to go with the post and significant dates. So, as I said at the time in response to the challenge of what I'd do next... I've carried on, awareness has been raised in strange places, questions have been asked...

It's not often that medics welcome patients into their conferences... It's not often that we're welcomed with very open arms, as partners in our care... It's not often I almost whoop for joy in a scientific lecture... Where was I - I was at the Annual Scientific Conference of the British Cardiovascular Society.  As a Trustee of the Heart Care Partnership, its always a delight to go along and see how we, the patients, are seen and perceived by the medics and specifically the cardiologists. There is a worrying trait in some of us congenitals to view the other cardiac patients as bringing on themselves, and getting an easier life than us because of it.  It's not a view I've subscribed to, and in simple terms genetics and environment are difficult for anyone to control.  I'll also come onto some figures that should make all of us congenital have pause... But first the HCP - this was that most unusual of things a patient strand at a medical conference, ...

I've been busy... So you my lucky readers will have the pleasure (dubious or otherwise) of 3 blogs... One on an update on my running One on the British Cardiovascular Society meeting and one on things general... So running... In a couple of weeks I'm doing a half marathon in the Lake District - with a fair chunk of up and down... http://www.greattrailchallenge.org/TheEvent/Default.aspx I'm doing the half, because I don't know how much the hills and terrains will slow me up, it's been 4 weeks since Belfast so my legs are now fully recovered (the 10km personal best helped gee up the marathon blues)... However, training is partly about going beyond what you'll face on a race day, the Kenyans say "Train hard & run easy", or my modified version "Train hard & run less painfully"... So, the Great Trail is going to be running a third to a half of a way up a mountain.  My training to go as fast as I could to run up a full mount...