Saturday, 29 December 2012

Unwelcome


This Christmas eve I passed the 26 year mark of being a member of club-D (definitely not as great as it sounds).  I am proud to say that despite a little scare this summer, complications have still not caught up with me and nor do I plan for them to. In many ways diabetes has become a way of life for me, the only way I know.  I work full time in the Police and love my job dearly, but when the 9-5 has come and gone I spend almost every spare minute of my time immersed in the diabetes 'world', advocating, attending conferences, manning stalls, participating in market research or product reviews and generally diving into what I would term 'diabetes culture'. I speak to parents of T1 kids daily, take advice from other PWDs (People With Diabetes) who can help me with my latest dilemma and reminisce with other 'old-timers' about orange plastic needles and 2-minute long blood tests.  

What I wasn't expecting was for diabetes to darken the door of my family once more.  This time, it has come a-knocking on the door of my mother-in-law, mamma P.

When she told me about the symptoms she was having I knew that diabetes was a possibility; inevitable even.  The symptoms she described - tired, thirsty, blurred vision - made me sure that this Christmas we would once more have an unwelcome addition to the family.  Her expression as she listed her symptoms told me that she also knew, she just hadn't said it out loud, until now.

One of the many things that has given us our closeness over the years is our shared battle with weight.  Neither of us require the side of the house to be removed to allow us to be crane-lifted out, but if I wasn't already a type 1 I would - perhaps ironically - be in the 'at risk' of type 2 category, due to my weight.  Knowing the risks at hand and the likelihood that this could be type 2, my wonderful husband and diabetes partner in crime gave her a shove in the right direction and demanded that by the end of the week she needed to have an appointment booked.

Her diagnosis followed only 3 days later. Treatment with Metformin followed 2 days after that.

Now we have the task on our hands of navigating the type 2 tightrope.  Admittedly I am no expert on type 2, in fact, her diagnosis has made me realise just how embarrassingly little I know.  It has never been something I needed to think about, in exactly the same way that the non-D population know nothing of type 1, much to the dismay of those trying to raise awareness.

Her determination to address her health problems has already staggered me.  She has already stopped drinking fruit juice - her tipple of choice, she is asking questions about low carb and exercise and is already recognising her habits of mindlessly reaching over to the biscuit tin are what found her in this position in the first place.  But she is determined to change it, and it makes me respect her all the more.  It took me 16 years to start taking my condition seriously.  It took her just 2 days.

So, knowing that you know far more than I, I am asking for your help - if you know tricks and tips for managing type 2, Metformin, low-carb or losing weight, I would LOVE to hear from you.

Do you have any advice I can pass on?

AP.

Wednesday, 19 December 2012

Driving, hypos and coming clean


In 2011 ripples of anger traveled through the diabetic community in the UK when the DVLA announced changes to the driving regulations for diabetics.  As a result of the changes, any hypo needing 'assistance' (ambulance attendance, for example) needed to be reported to the DVLA.  More than 1 serious incident in a calendar year now results in the suspension of your license.  As someone who suffered my own 'serious incident' this year, it is something I have often thought about; would I tell my team if I had another one?

INPUT, the world's favourite patient advocacy service are hosting the worlds quickest online survey to find out how you feel about this issue.  It will literally take 10 seconds of your time, but will help us uncover what YOU think.

Please check it out, here.

Thanks


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'!

Wednesday, 31 October 2012

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!





Friday, 12 October 2012

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.

Wednesday, 19 September 2012

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.

Friday, 14 September 2012

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:




Monday, 10 September 2012

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?

Thursday, 6 September 2012

Re-printed


Diabetes is often referred to as a 'hidden' disease.  When Elliott on the TV show Scrubs once told Type 2 diabetic character  Turk, "If you want sympathy get a disease people can see', I couldn't help but laugh.  In many ways, the fact our condition is mostly hidden, is a benefit.  I don't have to worry that an interviewer's prejudices mean the wheels on my chair make them put that 'cross' next to my name.  I am never teased or bullied (other than my family, which I am kinda fond of).  I don't stand out. I am judged on my abilities, not my 'disabilities'.

But the down side of that is that people with diabetes can feel very alone.  I read an article while at University once talking about how people with hidden conditions find it hard to identify an in-group the same way a wheelchair user might. During times when diabetics find managing their condition hard, it is that in-group that helps you through.  It's your fellow diabetics, your friends, your family.  Even the nurses at my GP surgery, who I laugh and joke with, are part of my diabetes in-group.

Diabetic burn-out, a well-recognised time of 'I need a rest' that diabetics can go through, usually polarised by  people not having an in-group for support, hit me around a year ago.  The posts on the blog began to become more sparse (a sure-fire sign that my thoughts are elsewhere) and blood testing and carb-counting had dwindled to embarassing levels.  When my DSN (Diabetes Specialist Nurse) asked me why I had gone three days without testing, I lied and told her I had lost my machine and was using a spare.  I hate liars. 

During that time, I stumbled upon the photo above,which was being used in an artistic education programme by artist Dana Heffern, whose aim is to educate non-diabetics.  This photo had a profound effect on me. At the time I was in the depths of burn out, struggling with what diabetes was doing to me both every day and over my life.  I was tired of the constant effort and dedication demanded of me, which only resulted in average health. I was angry.

When I saw this photo I couldn't take my eyes off of it.  I could think of only one singular word to describe it;  Mutilated.  Seeing the holes in the fingerprint, which when magnified felt like bomb craters, fuelled my very anger.  Your finger print is part of your identity, so much so that even identical twins do not have the same prints.  It is part of who you are.  It is yours.  This striking image was showing me what diabetes does to people; it mutilates them. 

That image haunted me for several months and even now calls out to me when I see the pock-marks in my own fingerprint.  But with the ending of the burn-out phase came a new lease of life for diabetes.  I threw myself back into volunteering for events, attending groups and bloggers forums and picking myself up off the floor with a new determination to wipe that very floor with my condition.

Now, when I look at that image I know that diabetes has changed me.  Beyond recognition, probably.  But not for the worse in fact I feel it has done quite the opposite.  Those marks on my fingers are a sign of the in-group I belong to, one which happens to be about 3 million strong in this country alone.  They plot my journey one crater at a time, and are my proof that diabetes hasn't taken me prisoner just yet.  They are my evidence that I will live a long, healthy, happy life because I am trying to.  They are evidence of my care for myself.  They are also unlike any other person in the world. That makes them as much part of my fingerprint as the very print itself.

I may have a 'hidden' condition but I have chosen to wear my condition for all to see.  I have chosen to find my in-group by wearing an insulin pump and shouting about it.

You, are my in-group, and my fingerprint is both damaged, and as perfect, as this one.

Monday, 3 September 2012

Non-invasive CGMs - The one to watch



Last week I had the pleasure of meeting up with some fellow bloggers and a team from C8 Medisensors, the company bringing to the market the much-anticipated non-invasive continuous glucose monitor somewhat catchily named, 'the HG1-c'.  I mentioned them briefly after happening upon their stand at the ATTD earlier this year and last week provided an opportunity to get some waffley blogger-types together in a room to discuss the Hg1-c, the company, the history and the future. It's all bright, by the way.

In a nutshell this investigational device (not yet CE approved) consists of a small box, around the size of today's smart phones or an insulin pump, which is held in place around the midriff by a neoprene belt.  Here it measures the amount of glucose in the fluid beneath the skin using Raman Spectroscopy technology. For those of you who - like myself - don't speak 'medical journal', Raman Spectroscopy is effectively shining a light through the skin.  This light reacts only with glucose molecules and can therefore identify how much glucose is present.  It then feeds this back to an app on a smart phone (Apple version in the pipleine) for you to keep a near real-time eye on your glucose.  Ingenious, I think you'll agree.

So far the benefits of the system include being vastly cheaper than the current traditional CGMs available such as the Navigator, the Enlite and everyone's favourite, Dexcom.  The price of the unit is approximately £2500 which although still a very large outlay, is a drop in the ocean in comparison with the traditional CGMs.  In fact over the anticipated 4 year lifespan of the device, that is a saving of approximately £10,000.  Imagine how much diabetic chocolate you could buy with that!

Other benefits include being non-invasive and therefore painless, having no expensive parts to replace, it is relatively discreet (although perhaps not underneath any negligee when preparing to seduce the husband/wife!) and the accuracy is comparable with the current systems.  CGM accuracy rates currently range anywhere from 75-89% and the information we were presented with clearly showed that for trend information allowing you to make better self-care choices, this system performs as well as any of those above.  

There are a few drawbacks to mention.  For all those parents out there thinking how fantastic this will be for your little ones, we were categorically told that this device will only receive CE marking for adults.  So alas if you are interested in this, using it on children would be considered 'off-label'.  

It is also - in my opinion - rather on the 'chunky' side at this point thanks to being worn on a girdle style belt and the need for a battery pack alongside the monitor. But for me, this is a trade up I would make for the sake of more affordable, reliable and non-invasive CGM.  I have tiny marks all over my abdomen from the many cannulas I have worn over the years, so the idea of a monitoring device that doesn't even pierce the skin, is wonderful. 

It also isn't waterproof so no skinny dipping while wearing your C8 girdle, because you can't return it if you wreck it, OK? And due to the need for no movement between the skin and the laser for it to work without interruption, it isn't recommended during exercise at the moment.  

That said, if you are looking for a more affordable, reliable CGM system that is up and running in 15 minutes, is close to the 'gold standard' of glucose monitoring and is run through your phone meaning no extra devices to carry around, then I strongly suggest you make your own enquiries about this system.

The plan at the moment is to roll out in the EU imminently, followed by Switzerland, Norway and eventually, Iceland.  So to the Norway readers I discovered a while back - you know who you are - keep your eyes peeled.

The message really is keep your eyes on this company.  If they can get CE approval then they may well have version one of a contender for the likes of the market leaders who have become such a household name in the diabetes community.  We are bombarded with information about how beneficial CGM can be.  Well, maybe C8 are about to bring us the first step closer to CGM being a routine part of our care in the UK.

Watch this space.


I've attached some photos of some very engrossed-looking bloggers for your entertainment...







Tuesday, 14 August 2012

I hate to say it but...

For the last few days my blood sugars have resembled that of someone harbouring some kind of sugar addiction. My BGs, have been nuts!
Today, for example, I woke up this morning to a very unwelcome 15.5mmol which after a great whack of a correction dose, grudgingly shifted down to 8mmol. Of course, having eaten a 'sinful' bowl of berries and yoghurt, they are now back up rocking a 15mmol. Having switched cannulas and ultimately sticking on a 150% temporary basal rate, I continue to battle against my diabetes today, determined to keep the high teens at bay. I can feel my limbs screaming.

I would be annoyed about it, seeing as I find unexplained high blood sugars infuriating, but I know exactly where I went wrong. The 'right on the money' approach I had adopted which only a week ago had me rocking 6s and 7s all day, was the old exercise and diet system. It isn't rocket science. It never fails. Only a week ago I was low-carbing, gorging on vegetables like they were going out of fashion and exercising every day, without fail. Whether it was a walk with a dog from the local pound, a hardcore body combat class or a yoga session (deceivingly sweat-inducing), I was doing something - anything - every day.

The problem is, as most people know all too well, taking even a few days off means your body becomes less sensitive to insulin, and you start to need more. Add to this two family BBQs which had me reaching for the hot sauce (sugary as hell once you get past the chilli 'bite) and tucking into a range of delicious breads. On day 1 I put the blood sugars down to the BBQ, day 2 I told myself that day 3 I would get back on it and day 3 even having got my diet back in check, the lack of exercise in my life is glaringly obvious.

I miss my 6s and 7s.

The hardest part about getting back on track, is actually getting back on track. The climb back onto the wagon is a hell of a trip up, when your legs feel like you've run a marathon before you even get out of bed. When you are rocking 15s it is so hard to even think about going back to the gym and even walk is the last thing you feel like doing.

But that is exactly what I will be doing tonight. Forcing myself to go for a walk, even for 20 minutes. And I'm back on the low-carb veggie wagon and tomorrow, I'm gonna give the gym studio a battering!

Friday, 10 August 2012

These moments

This weekend my brother invited me join him at a small meet-up called 'The Little Green Gathering', held at a local sustainability centre where he was giving a talk on the Zeitgest movement, something he is as passionate about as I am about diabetes advocacy.  I've been saying for some time that I'd come along to one of his talks, so this evening I decided to join him and come good on my promise.   But as so often happens when we aren't searching for it, it was an unexpected, wonderful moment that made the event.

Knowing that he was on for an hour and with a serious coffee addiction meaning I would be a fidgety twitcher if I didn't visit the little girls room, I nipped off to the ladies for a loo-stop.  As I waited for a cubicle to become free, two people filed in behind me: a mother and her daughter,  talking amongst themselves.  Normally their conversation would have passed over me barely registering, but all of a sudden a familiar phrase caught my attention.

"We should do your numbers in a minute." Mum said.

I've heard those words before.  I've heard them on more than just a few occasions.  As I eavesdropped them discussing numbers and times I wanted so badly to turn and let them know my little secret too, but the door of a cubicle opened and without meaning to I found myself locking the cubicle door behind me, saying goodbye to that moment.

It's a good job I pee fast.

As I emerged from the cubicle I made it just in time to see a crisp, clean looking testing kit sprawled in front of the young girl, cradled in the open hands of the mother.  Even that image speaks a thousand words, doesn't it?

I squeezed past and whispered to them, "me too," gesturing towards the open kit.

"Sorry", mum said, now making eye contact with me.

"Me too." I repeated.

"Really?" Her eyes now fixed on mine.

"Yup" I smiled.  

"Type 1 or 2?"

"Type 1" (weirdly proud).  

"When were you diagnosed?" She questioned.

"Oh god, 25 years now. So, 1986 I guess."

"Wow, she has had it a month." Glancing over to her child.

And there it was; the future of diabetes.  A bight young thing getting accustomed to a lifetime of hand-washing, loo-testing and number-crunching.  As mum and I exchanged stories the bubble around us grew as I was only distantly aware of people coming in and out of the cubicles behind us.  Like bathroom checkers, we were pushed from one spot to another as people negotiated the room we had commandeered to share this moment.

We talked pumps, diagnosis and injections, and as mum pulled out the needle from a correction dose of insulin, the future generation of diabetes and I high-fived and smiled.  Stupid, crappy injections.  We shared a knowing glance.

I couldn't leave without swapping details.  Having only been on board for a month but already speaking a language they should never have needed to learn, I wondered how many questions mum might have in her head.  Does it get easier? How long does it take to learn? Are you happy?  Will she be OK?

We swapped emails and addresses and promised to keep in touch  so we could ask all the questions we want, without the whirring of a hand-dryer somewhere in the background.  

As I went to leave the room I heard, "Are you a hugger?"

"Oh yeah, I'm a hugger." I replied.

Hug isn't the word. Embrace is closer to the mark.  An embrace that lingered a moment longer than it would have even between friends.  With that and a "Welcome to the club, kid.  We're all pretty awesome", we parted ways with a smile and a promise.

These are the moments I live for.  A moment which could so easily have been missed if any one of us had changed our path.  If we'd doubled back, done that test elsewhere, not mentioned anything about numbers.

I don't know how, but somehow, every time, diabetes finds a way to bring us together.

Tuesday, 7 August 2012

Tethered

I love my pump.

 I have since I walked into the Consultant's office on day 1 of my pump-life and saw the Medtronic Veo on the table.  It was the very same pump I had wanted when I was soaking up all I could from the Internet about them.

I liked the integrated CGM and low glucose suspend.  I know this is ridiculous as I'm not funded for CGM and as I don't spin gold from my hair, am unlikely to have it for years yet.  But I liked it.

I liked the colours it came in and the fact I could add a little touch of myself to it.  I liked the automatic inserter, meaning I didn't have to stab myself with the inch long silhouette needle (the first time I ever discovered that I harbour just a touch of needle-phobia).  I liked the Medtronic team and their many nudges in the right direction when I was acting like a diabetes-moron and kinking cannulas left, right and centre.  Most of all, I love the freedom it afforded me and new, improved, complication-free (ish) life it afforded me.  I loved feeling well again. 

I still do.

What I don't like, is the tubing.

Over the last two and a half years I have begun walking through doorways at a distinct angle.  To the knowing diabetic, this is because if there happens to be some wayward tubing protruding from your clothing, you could bet your house on it getting caught on the door handle, wrenching you back stomach-first in a cartoon-like rebound.  To the unknowing eye, I simply look disabled.  The 'in the head' kind of disabled, that is.  I have learnt never to change the cannula when in sight of a cat, because all that rustling and flicking of tubing is enough to entice even the most lazy feline into a stalking frenzy.  I am a little frustrated to say the least by having to find gym clothes with zip-up pockets in, because when I try to exercise, 'pumpy' flies off the trouser band, effectively assaulting anyone within a 3 foot radius (that's the length tubing I use).  I have also learnt that if you are going to snuggle up to the husband during the night, make darn sure he isn't laying on the 3 inches of tubing closest to your stomach, because when you turn over seeking a more comfy position, you will think someone is pulling out your insides, liver first.

As much as I love my pump and the freedom it affords me, I am more than ready to go tubing free.  And although Omipod and I didn't get off the the best start, they are gathering momentum in the UK all the time, and the positive reports make their way back to me time and again. Perhaps a second glance is worth a think or two.

We also have Cellnovo now on the horizon, who despite have gained CE approval (meaning it has been deemed safe for human use) are still hanging on to their new, very sexy, patch-pump.  And although they are a completely new company, most of their team have been head-hunted from the heady heights of likes  of Medtronic, my personal favourite (well, only really) pump-provider.

There are also rumours about the Solo making its way to ours shores in the near future after Roche acquired 'Medingo' (who??), which for me, is probably the best news of all.  Being tubing free but also from a very well established company and with a bolus button on board meaning if you forget the handheld diabetes manager tool you use to deliver insulin (you scoff, but beggar's belief I managed to go out the other day having not even connected Lord Pumpingtopn.  Clever.) then you can still deliver a bolus for meals.

Yes, it is definitely time that I ditched a tethered pump (even the name annoys me these days) and discover a new way of pumping. 

18 months to go before I should be able to apply for a new, less tubey pump.  And very much counting!


An accurate representation of how I currently feel. With only the smallest element of massive over-exageration