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?

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'!

C8: Things just got interesting...

A couple of months ago I was able to spend an afternoon with some of the C8 Medisensors team, pawing over their new, smart  (but yet to receive CE marking) Continuous Glucose Monitor, the HG1c.  The first non-invasive CGM to reach the European market, this product has the promise of some interesting times ahead.  Will this be a leader; the first of its kind?

Well, I have just received word that CE marking has finally been achieved!  So watch this space (or their website) for details on when they will be available.

If you fancy a re-cap of all things HG1C, please check out my previous post about it and follow links to the website to know more!

Food revolution

We are on the verge of a food revolution.

How many 'fat kids' (excuse the crudity) were there in your school class as a child?  We had one.  She wasn't known as the fat kid, mainly because all those years ago 'fat' didn't seem to be as much of an insult as it is now, but she stood out from the rest of us due to her size.  It was...unusual.  I always remembered thinking there was something 'different' about her.  But I liked her nonetheless.  She always wore a smile, had a welcoming way about her and tried her very best at sports, usually coming in last (with me at her side).

Today, the slender if not a little too skinny girl I once was, is gone.  I am now the fat girl, just like my friend was.  The difference is now, the number of people who would once have been considered 'unusual' due to their size, has increased.  Significantly.  Dramatically.  Frighteningly.  I am not alone in this category as my friend once was.

I have paid hundreds if not thousands of pounds to belong to slimming clubs like Slimming World and Weight Watchers for the 'benefit' of their food education.  And guess what; I am the heaviest I have ever been.  I have the ingrained 'low-fat/high-carb' principle burned in my mind because since I was 10 years old this is what everyone - the media, the doctors, the television, the slimming clubs - have told me I should do.

Now, go back 60 years, when 'margerine' didn't exist and meat was the primarily dish on the plate (the meat and two veg rule, remember?) and tell me, have you seen photos of your grandparents?  Were they fat?  I doubt it.  They didn't need any of our none-of-the-fat-but-all-of-the-taste products to keep them slender.  No.  They rubbed their meat in lard, joyfully bought butter for their morning slice of toast, ate pork dripping on home-made bread and ate small, handful sized portions of REAL FOOD. They also didn't need drug after drug to keep healthy.  They just lived.

I have made my feelings on low-carb clear over the years.  But whether or not you buy into the principles of low-carb one thing is true; clean eating is undeniably the best for our bodies.  We know this because we are still gasping for breath in the wake of the processed food revolution that brought us microwave meals, instant gravy and mashed potato brands that have to advise on the back of the packet what percentage of the contents are actually potato.

But just as the revolution of the 70s and 80s taught our predecessors that we don't need to slave over a hot stove for hours, so too are we now learning that this convenience comes at a cost.  Ill health.

So much of our media is now telling us to eat clean, avoid processed and simple carbohydrates and try, for the love of God TRY, to only include ingredients you can pronounce.  Just as the 70s discovered instant meals, so too are we now discovered what 'clean' really can do.

This is the start of our food revolution.

Medtronic holiday pump loan: Old dog, new tricks

Thankfully Medtronic, my favourite (and only) insulin pump company, have chosen to replace yet another pump belt clip after mine went camping with us in the New Forest and never made it home.  I'm losing count of how many times this has happened now but luckily for me, Medtronic don't seem to mind.

So there I was, ecstatic that the new clip had arrived in time to come away on holiday with us when something in their letter (normally binned without a second though) caught my eye:

Perhaps it was just the word 'holiday' that stood out because in just two short days Jamie and I jet off for our first anniversary two week Scottish Highland adventure, but out jumped a little sentence that may be of interest to anyone who's been on holiday and packed as though Armageddon is coming, just in case their pump dies in on them mid Pina Colada (or Hagis, whatevs).

According to the letter Medtronic, who customer service I have raved about before, now offer a 'Holiday Loan Pump' service.  It seems if you are heading off on your holidays and normally sport your own insulin pump, all you need do is drop them a line 4 weeks before you go and they will help you out with a loan pump as peace of mind, in case yours packs up for any reason.

All you need do is contact the Product Support Helpline on 01923 205 167 and there you have it, simple as can be.

Medtronic, you never fail to impress me!

And thanks for the clip, I'll be in touch again shortly, no doubt.

The Dexcom G4 - hubba hubba

So after having a chance to have a snapshot view of the sexy new Dexcom G4 (continuous glucose monitor) from, arguably, the market leader and gawking at its gorgeousness (yes, to a diabetic this ingenious piece of plastic and metal really is, gorgeous) I received the press release below from the lovely folk at Dexcom.  I thought you may like to have a read of it and check out the video of 6-time marathon runner and Olympic torch bearer Colin Rowland, giving his story of competing at sport with a Dexcom.  To be fair, you don't have to run a marathon to benefit from it, eating a bowl of fruit is a heck of a job easier too!

Are you a Dexcom user and have you had a chance to see/try this yet? Thoughts on a postcard (or comment) below!

My Glucose Sensor UK - Continuous Glucose Monitoring 

Press Release

With the Olympics hitting London health and fitness has been at the forefront of our community. Diabetes affects nearly 350 million people worldwide and nearly 1 million in the UK alone. On the back of the success of their life changing Continuous Glucose Monitoring device (Dexcom-Seven plus) Advanced Therapeutics are set to launch The Dexcom G4 ™ into the UK market place.

This latest product from Dexcom is an easy-to-use wireless device that is designed to simplify glucose management. The revolutionary technology brings enormous benefits to those within the diabetes community and is the very latest in sensor technology. Helping to take the guesswork out of diabetes management, the Dexcom G4 delivers exceptional accuracy with the user being in optimal control of their Blood Glucose Levels any time day or night.

Olympic torchbearer Colin Rowland is a pioneer of the new unit.

“I was diagnosed with Type 1 diabetes when I was very young. For a type one diabetic to even attempt to run a marathon is quite a feat. When I started using Continuous Glucose Monitoring it brought home to me how difficult It was to run the marathon without it. One of the biggest advantages for me is when I leave the house my wife will know that the G4 will assist me in just simply coming back home. The G4 is like my training partner, it made it so much easier. It allowed me to live my life, run a marathon, and run it well.

The beauty of Continuous Glucose Monitoring is all I have to do is glance at my wrist and I can tell what my glucose level is. It is picked up every five minutes automatically and it tells you whether it’s rising, falling, or steady. The system will inform me when it’s getting to high or low levels.”

Watch a video of how the unit has impacted Colin’s training here:

The system is made up of four components: the sensor, transmitter, Dexcom Studio software, and receiver. It can show you a new glucose reading every 5 minutes for up to 7 days of uninterrupted wear-time.

The Sensor is a flexible, round, fine probe that goes just under your skin to read glucose levels It is part of the sensor pod which is attached to the skin by an adhesive patch.

The transmitter wirelessly sends glucose information continuously to the Receiver which displays a reading every 5 minutes. The transmitter snaps into the sensor body to form a small, lightweight and discreet. The adhesive patch holds the Pod to your skin.

The Receiver is a wireless device that displays glucose trends so you can quickly and easily see where your glucose has been, where it is, and where it's heading and how fast it is changing. At about the size and weight of a small mobile phone, you can clip the receiver to your belt, put it in your pocket or handbag. Everything you want to see about your glucose at a glance.

Using the latest Dexcom Studio software you can download 30 days of information to your computer. You can see short- and long-term trends and patterns through customizable charts, so you can watch your improvements over time. In addition, view meal, insulin, health, and activity information entered into your receiver. This information can help you and your diabetes management team understand the impact that food, insulin, exercise, and medication have on your glucose levels.

Being at the very heart of the Diabetes Community ‘My Glucose Sensor UK’ is an online platform delivering the latest diabetes news and striking conversations with those whose lives it affects.

Join in the conversation here:

Facebook: http://www.facebook.com/MyGlucoseSensorUK

Twitter: https://twitter.com/GlucoseSensorUK

YouTube: http://www.youtube.com/user/MyGlucoseSensorUK?feature=mhee

The dulcet tones of the testing kit

With his First Class honors Degree at the University of Diabetes came many a lesson for my long-suffering but ever-supportive husband Jamie, or 'J-Dizzle' to those who know him well.  He had to hit the ground running when we first embarked on a relationship (that makes it sound very serious.  It wasn't.) and quickly learnt the difference between 'juice-guzzling Anna' and 'insulin-seeking-missile Anna', and what those states means to a diabetic.  He learnt that if I begin to wander around in the middle of the night convinced I have gone blind, it's best not to let me try and navigate the stairs on my own.  He learnt that blood test day in our house, is all but Armageddon.

He also learnt the harder lessons; the ones that don't bring quite so much entertainment.  He learnt that one day, if complications come a-knocking, we may need to make the decision together that children are just not for us.  He had to learn to squeeze my hand when finding out news from the Doctors which scares me, just a bit.  And he had to learn that living with a diabetic, isn't always easy.  In fact sometimes, it's damned hard.

But I sometimes forget, or maybe don't give him enough credit, for just how much of an impact my diabetes has on him.  Having sailed through the trials and tribulations above, taking every step in his ever-chilled out stride, I forget how much he has had to learn in the last 5 years.  He had to learn what I learnt over 25 years, in just a fifth of that time, and become an expert in his own right, if he too was to conquer my diabetes.  Along with all the 'usual' education of carb-counting, cannula-changing, prescription-hoarding and midnight fridge runs (and occasional sprints to the nearest 24 hour store selling pump-batteries, that's all we'll say about that!) he has picked up on so, so much more.  

Yesterday we spent the day with his family eating, drinking and being generally merry.  As well as checking I was OK after a platter of the finest home-made marzipan cakes, short breads and sausage rolls was presented (omnomnom) he also reminded me just how much diabetes has left its mark on him.  As we got in the car I decided it was time for a swift blood test.  Scrunched in the back of our tiny 2-person-masquerading-as-a-4-person car I pulled out my kit and unzipped the case.

"Do you want me to stop the car?" he asked from the driver seat.

Without even having looked away from the road the dulcet tones of the testing kit, now all too familiar after 5 years, told him diabetes was visiting us in that moment and demanded some action from him.

"No thanks, I'm good." I replied, smiling to myself that after this many years I could probably test upside down from a tree in the jungle (now there's a challenge).

Funny as it may seem, it is a bittersweet (diabetic pun, anyone?) reminder of how much our 'Type 3' diabetics go through.  I often see discussions about 'which is worse', to have it or to live with it.  I don't get involved with arguments like that because it's like arguing which is worse, day or night.  The two can't even compare!  But it was a big bump back down to ground remembering that everything I go through, he goes through.  He may not 'feel' the highs and lows, but he does live them.  He does feel them.

This is for you, Jamie. My favourite diabetes partner in crime.  I love you.

Who do you have around you? Or are you a type 3 yourself?