Friday, 23 November 2012

The toughest race on earth

Fund raising of any kind is newsworthy, whether you choose to do a sponsored silence or jump screaming from a plane.  But gone are the days when shaking a charity money-box is sufficient to have the world empty its pockets for a good cause; now, we want action. Some spend days in the kitchen creating the delights which will bring in those pounds at community bake sales, while some hold music events or auctions or walk for miles.  The world is your oyster.  Anything goes and for the charities you support, your efforts are their lifeline.

With an impressive sporting career as a top cyclist of his own, it was no surprise to me that my friend and go-to-guy for cycling advice, Roddy Riddle, had chosen to do something sporting for his money-raising efforts.   But what he was doing, I was to discover, was beyond anything I could even comprehend. Sandwiched in-between major events in his life, like being manager to the Braveheart team at the opening of the new Sir Chris Hoy velodrome in Glasgow, he is also training for the toughest race on earth for charity, the Marathon Des Sables.  

Marathon Des Sables or MDS, is a six-day, 156 mile race, with the longest stage being 57 miles long.  As if that wasn't challenge enough, this race doesn't take place in the ambient temperatures of Bognor Regis, no, it is hosted by the Sahara Desert.  And Roddy is running this race to raise money for Diabetes Charities JDRF UK and Diabetes UK.  Oh yeah, in case I forgot to mention, Roddy is a fellow T1....

Here is what he has to say:

Firstly, congratulations on your recent success as 'Braveheart' Team Manager at the new Sir Chris Hoy Velodrome!  How did that feel?!
It was a great buzz being involved in the 1st competitive event at the new Sir Chris Hoy Velodrome, this was topped off by being the manager of the Braveheart team which included young John Paul, Jason Quelly and Sir Chris Hoy himself

When did you first realise you had a love of sport?

I took up cycling when I was 13 years old and started racing when I was a year older, racing for Scotland and GB along the way.

How much has exercise played a part in helping you manage your diabetes?

Exercise is the one of the best forms of medication available. It helps me keep my blood glucose levels under control with the use of less insulin.
Exercise also helps keep my weight down and makes you feel good about yourself.

What made you decide to take on the Marathon Des Sables?

I choose the hardest foot race in the World to show that having diabetes shouldn't hold you back, if me competing in the MDS gives other people confidence to even start a small amount of exercise, it's made it all worth while.
What does your training involve?

My training involves doing a lot of back to back long runs over a mix of terrain with a weighted rucksack on my back to simulate what I will have to carry during the MDS.

Has diabetes ever posed a challenge to you in your training?  If so, how do you overcome those challenges?

I always carry glucose tablets during any of my training sessions just in case my blood glucose levels were to dip.  I do a lot of blood glucose testing before and during longer runs.  During the MDS I will be using a continuous glucose monitor to help assist me manage my diabetes while I am running.

So, how can people sponsor you and keep up to speed with your journey?

I am raising money for JDRF UK and Diabetes UK
You can follow my progress on https://twitter.com/RoddyRiddle


Wednesday, 21 November 2012

WDD 2012: Through the eyes of J&J


Medtronic employees posing as Animas reps, because clearly this was where the fun was at! (factual correctness may vary)

Sadly my actual life got in the way of my blog this week (don't worry, I fired it!), so this post is just a little late.  But here's something you may like to know about World Diabetes Day in the Johnson and Johnson camp.  

World Diabetes Day, 14th November, is a day the International Diabetes Federation brought into circulation and is a day which gives PWDs everywhere the opportunity to talk about diabetes, share facts, raise awareness, raise funds and often get together in large groups to celebrate the fact that we are slightly better than everything else in society (ish).  It is illegal to wear anything but blue (not really), everyone must light up their workplace blue otherwise there is a hefty fine (not really) and we get to talk about all things diabetes without being interrupted (not really).  This is the law (sort of).

Many use diabetes Awareness Month (November) to teach diabetes facts on forums like Facebook and Twitter while others arrange to cycle for 150 miles to raise funds and spread the word.  Whatever your choice of activity, the 14th of November is about diabetes, about us, about the diabetes community.

This year, I had the opportunity to try something completely different.  I got to spend the day with the Johnson and Johnson team.  Why, you ask?  Because Lifescan and Animas, two of the most established names on the diabetes movers and shakers and providers of sophisticated medical technology such as waterproof pumps with integrated market-leading CGM and blood glucose meters that detect high and low patterns, decided to use their diabetes day to raise awareness too.  Only they wanted to do so for the other non-diabetes related J&J companies.  Different?  I thought so.  

The day started with two talks from JDRF and Diabetes UK, both of whom J&J actively support in their work to raise awareness of diabetes, improve the lives of those with it and fund research into cures and treatments.  Then the day paused while the bloggers, activists and community bringertogetherers went on their way to a focus group session.  These are always, always the part of the day I enjoy the most; nothing makes me happier than sitting down with other people who want to speak their minds, and give them a topic to run with.  This group was about asking questions like 'What does a Gold standard insulin pump company look like' (GREAT question!). We talked about what tools are important to us and what diabetes educational events we would organise. Lastly we talked about Animas heroes.  And not heroes as in King Arthur and the Knights of the round table, but heroes like you.  The ones who decide to run a marathon because they can, diabetes aside.  They bring others together.  They change the way people think about diabetes.  They write blogs because they have something to say.  They swim the channel, climb a mountain or run 151 miles to raise money for charity, because they can.  They are the ones who get out of bed on the days when neuropathy is firing through their limbs, and the ones who say 'I don't think so' to the 22mmol shouting at them from their testing kit.  These are the heroes Animas are referring to.

The day ended with one of the most comical presentations I have been to; Fred Gill, British Rower and hopeful 2014 candidate. Packed with humour, attitude and determination, his talk was one hell of an end to a great day with the motivated, dedicated and welcoming group of people.  He taught the audience that diabetes just had to fit in with him, not the other way around.  Like.

As the group of around 70 people walked the circuit around the J&J building, it gave me a chance to catch up with everyone's favourite DOC champion and person behind the GBDoc, and put the diabetes world to rights as the Johnson and Johnson building was lit up blue, as is the law on WDD.

What will you do next year?

Monday, 12 November 2012

The diabetes gods of mischief



Me, at 3pm this afternoon.  Being held ransom by my diabetes.  Cute, aren't I?

You would think that after almost 26 years of playing host to diabetes that I might, by now, have this arguably repetitive condition down to a fine art.  But then you would be wrong.  Now and then, when the gods of mischief fancy a giggle, all efforts, planning, due care and attention, calculations and meticulous implementation of best practice goes up in smoke, and you are left with a tantrum having toddler of a condition, hell bent on playing games with your day.

I was already riding on the high side when I woke up this morning, rocking a a 14.2mmol (255) thanks to an overnight hypo.  As I forced myself out of bed and quite literally threw myself down the stairs (it was the only way I was going to get myself out of the door today!), my first correction bolus of the day was delivered. 

The morning was largely uneventful, littered with the occasional 'hmmmph'- enducing blood test.  Thanks to having to gone to bed far too late (teenagerish) and flopping out of bed with too little time to make breakfast and lunch (need to be organised, much?), I decided today would be a great day for a fast.   Of course, the mischief gods of hunger were at play and by 10.30am, I was ready to eat my own arm. Or anyone else's if they happened to make the mistake of handing me anything over the desk.  I can only apologise to the poor postman who looked a little bemused when he handed the ravenous girl at the desk a bag of envelopes, with his forearm on show.

As lunch came a calling I gave in; I had to eat something.  Of course, mainstream caf├ęs don't really cater for the low-carbing PWD, so the food on offer was basically carb with carb, with a side order of carb.  I chose a jacket potato but went for cheese and beans, hoping to lower the GI rating.  I bolused with about 15 minutes to go before eating, and then tucked in.  One hour later, I was 19mmol (342).  Hmmmph.

A speedy 3-circuit walk around the park to please the mischief gods of the post-prandial (post-meal) high, didn't even touch the sides as I returned to a result of 22mmol (396).  Feeling by now like I'd been smacked in the face by the flu-gods, with muscles aching and face-ache to match, I started to stack my boluses (taking several doses of insulin too close together and against the advice of the pump). 

Having not seen any improvement in my BG levels, despite some swift exercise and some very dodgy stacking of boluses, it wasn't long before I started to panic that I may have a kinked cannula (meaning the 'no insulin gets in mischief gods' may be lurking).  Three blood tests within 45 minutes later, the result started to come down. 

Of course, knowing what we all know about bolus-stacking (it's for idiots, don't do it), I was now sure that my cannua in fact did work and all that reckless stacking was likely to come back and haunt me.  There are gods for that, too.

Having predicted my own demise, the 'in your face you gave too much insulin mischief gods' have only just stopped mocking me, having sent myself  flying down to a wobble-inducing 2.9mmol (52) even the most hardened mischief god of hypos might find impressive.

Today, has been sheer diabetes chaos. 

But it's OK.  I am giving the gods of mischief my very best 'whatever' smile and am cunningly plotting my revenge tomorrow.  Little does it know, tomorrow I will be bashing up my diabetes in the gym, starving it of carbs (it hates that, because it is forced to behave) and socking it one right in the diabetic face (just for fun).

No more holding me ransom!

Any of this sound familiar? 



Friday, 9 November 2012

Day off. Seriously?

I've already raved about the CWD weekend.  The message is; it rocks, so GO! But while I hope I have covered the weekend in general enough to give you a thirst for more and hopefully come along to the Glasgow weekend, there were some lightbulb moments that I thought deserved a post all to themselves. Having a day off, is one of them.

The 'Avoiding Burnout' talk by Jill Weissberg-Benchell (awesome name alert!) and Korey Hood, brought together a group of people who by all accounts either were, had been or might be on their way to, burnout.  If you have never been through burnout before, it isn't a fun place to be.  It's when diabetes, technically a chronic condition, becomes emotionally acute.  The pressures of walking the tighrope between the upper and lower target range build up over weeks, months or years and end in, quite literally, total burn out. 

During the CWD session we explored ways parents can have a rest without going out of their minds with worry and how to hand over control to teenagers, without losing tracks of whose role it is to do what.  One suggestion was for parents to be in charge of everything when they were around their child but hand that control over, when apart.  Great idea, if you are a parent.  For the PWDs, who can't ever truly get away from the condition, it isn't quite so easy. Or….is it?

That discussion seemed to start a fire in the mind of InPuT's Lesley Jordan, who announced that she would be asking her husband to give her a day off when she got home from the conference.  He would be taking over the reigns for one day and allow her to just be Lesley.  Not, Lesley with diabetes. 

Honestly I thought she was crazy.  How would that work? Wouldn't she worry more?  How will she know everything is being done right, or even just, OK? 

Without realising it I was turning into my own concerned parent, saying all the same things a parent at the beginning stages of burnout says?  The lack of faith that things will be OK.  The need to know what was going on.  The inability to let go of control, but needing to in order to self preserve.  Placing demands on myself to handle it.  Those are exactly the demands I want to to have a break from, too.

After teasing me that this fitted well into his master plan of exerting total control over me (he's kidding.  I wear the trousers, of course) Jamie agreed that it seemed like a great idea.  What's to lose, right?

So tomorrow, for the first time since in 18 years since my parents handed over the reigns in my early teens, my Jamie will be allowing me my first day off. Tomorrow is mine; Anna's, not Anna with diabetes.  I won't be consulted. I won't have to make decisions about when to test or what to eat or how much to bolus. Jamie, is taking my diabetes for the day. And he's welcome to it!

Now to decide how to spend my day off...

Have you had a day off lately?

Tuesday, 6 November 2012

CWD Friends For Life 2012: Hope and Onesies

In 1995 an inspirational man named Jeff Hitchcock, the father of a little girl who had a disease called type 1 diabetes, decided he would use this quirky new thing called 'the Internet' (which he claimed would be a 'big thing') to create a website where parents of, and children with, the condition could talk to one another and find friendship and support.  It quickly caught on and before long became an institution to its already devoted members and growing number of people looking for just what Children With Diabetes could offer; unity.

Five years on in the year 2000, a lady named Laura Billetdeaux, herself a member of CWD and parent to a young boy with T1, posted a simple message that she was heading to Florida and should anyone wish to meet her there, she would be waiting.  Laura is a person with whom you immediately feel at ease.  She is confident, and warm.  On that fateful day 500 people felt the same way and descended upon Florida where the annual Children with Diabetes event, was born.

Almost two decades on the CWD conference, now dubbed 'Friends for Life', draws hundreds of families from across the United States on a yearly basis. For parents it is a place of companionship, learning and support. For the children, it is an opportunity to let down their hair, rekindle old friendships and have fun just being a kid. All food on offer is carb-counted, green arm-bands show membership to the club and hypo stations dot the halls, making it the safest place in the world.

Four years ago CWD came to the UK and this, was my first year. 

The buzz on Friday night was electric as hundreds of people excitedly arrived at the Beaumont Estate hotel in Windsor.  Which room you were in or what the hotel was like was secondary, this was a time for finding old friends.  And making new ones.  As the sea of enthusiastic people ebbed and flowed through hallways, the atmosphere was thick with excitement. 

The sponsors Animas, Medtronic, Cellnovo and Accu-Chek were out in force with balloon magicians (most awesome CV title ever!), face-painting, cuddly toys and an X-Box Kinnect to keep the kids suitably pumped (no pun intended!).













People, having a ridiculously wonderful time!



Olly Double, everyone's favourite comedian and T1 parent, whom I had the pleasure of meeting at the Spring Wellness day a year ago, opened the floor on Friday with a his brilliant stand up - including an audience-priming version of H-Y-P-O (to the tune of YMCA). Any opportunity to look at the brighter side of diabetes (yes, there really is one) is a welcome event.  Then it was drinks in the bar and off to bed.

Saturday began with an inspirational talk by DiabetesDad  Tom Karlya which kicked off the day at 9am.  By 9.13am, the first tears rolled down my cheek as he told the story of his daughter's diagnosis when  - in his words - she had IVs in both arms and was asking him to 'fix'. He told us with conviction that diabetes 'just won't do' and asked us to take responsibility for looking out for each other.  As the parent of not one but two T1 kids, he told us with the most admirable honesty about the mistakes he had made over his years (right there with ya, Mr K).  Between the laughter (he tells one hell of a good story) and the tears, there wasn't a dry eye in the house by the end.  
The weekend progressed with talks about advocacy, balancing food, exercise and sick days along with a host of other sessions packed with information to help build an arsenal of weapons with which to take diabetes on. We were taught how to avoid spikes after meals by all-round dude Gary Scheiner and how to negotiate family life with diabetes by the most 'New York' New Yorker you'll ever meet, Joe Solo. InPuT presented our own talk on how to get the best pump support (with my own section on Managing Expectations and how to avoid Competitive Parenting).  But for me the session which stood out above all others was one in which two psychologists, Jill Weissberg-Benchell and Korey Hood, led a group talk on Avoiding Burnout. Guaranteed to be a highly-emotional session by virtue of the subject matter, when the first person spoke with their voice already cracking I knew this would be nothing, if not a session to connect us.  For a precious hour we shared stories, offered hope and connected with people    who 'get it'.   Finally, Lesley Jordan profoundly said, "My purpose of being on this planet, is to do more than get a perfect HbA1c."  The room agreed and for just a moment had not a single word to add.

Learning from each other how to avoid burnout

As Sunday came to a close and the final talk, jam-packed with hope, was given by Jeff Hitchcock himself, I couldn't remember the last time I had cried so freely, re-charged so quickly and connected so deeply.  People you had never met before, and might never again, took the time to smile and be your friend.  The kids and young people, in the wonderfully inexplicable way only kids can, launched a mini-craze within the world we had created of wearings onesies 24 hours a day.  And as I basked in the glow of the event and looked on as the last of the revellers peeled away, emptying the fridge of the hotel's remaining complementary Diet Coke as they went, I knew, this weekend would not be forgotten.

This will not be my last Friends for Life.


The Input team, confusing the 'Madness' dance with the one from Blues Brothers, at the Roche 'disco'!