Thursday, 26 June 2014

Animas Sports Weekend 2014...

I've been talking about what an incredible experience the Animas Sports weekend is for two years in a row now, and you can find my rave reviews here, and here.  This year, I wanted to shake things up a little.

This weekend is one of the most looked-forward-to events in the diabetes calendar, and I'm running out of ways to say how great it is.

This year the talks were incredible, the people were inspirational and the weekend as ever, was one you don't want to miss.

Thank you to all the incredible people who let me have access to their photos, including all the twitter folks, Animas and Rachel, for letting me show you what the weekend is like through everyone else's eyes.

So check it out, here.


And for Triathlete Terrence Teixeira's top 3 tips from the weekend for understanding diabetes and sports, check out his video here.


Tuesday, 17 June 2014

An ode to the Olympics

Two years ago when I started to have regular fun and games (see also: swearing and rage) with kinked cannulas, I made the decision to try out the Medtronic steel cannulas.  Rather than being most people's nightmare because of the idea that you might feel them under the skin (you can't), it took just a couple of weeks of before I made the switch on a permanent basis.

I loved the fact that as they are removed after just two days and were so much more narrow than the Teflon needles, there was always much less scar tissue left after it was removed.  And the purple marks people talked about seeing after removing the Teflon needles seemed like a thing of the distant past, to me.

Perhaps the issue is just that in order to use my steels I have been using my abdomen for every cannula, but I feel like I'm starting to resemble the Olympic rings.  Right?



With an inkling over the last few weeks that burnout may be approaching (**rips off own pump and goes to hide in garden shed for a day with a pint of ice cream**), I've put in a sharpish order for some inset IIs (Teflon needles that could park themselves on my back or arm).  

Why?  Because as PWDs who have choice (even if that choice is limited) over the tools we use to manage our diabetes, and it is my prerogative (and sometimes a survival technique) to shake things up and change my form of attack.

For a long time I didn't mind using my abdomen for cannulas.  It worked for me and the lack of kinky (oo-er) issues kept me kicking the crap out of diabetes without a second thought.  But it's OK to reach an impasse and say, "This isn't working out, anymore" and make changes that will help you feel ready to take on another day with diabetes. Diabetes paraphernalia is something unavoidable that we have to live with as PWDs, so we might as well make that paraphernalia work for us.

Have you changed your paraphernalia to make it work for you?

Monday, 16 June 2014

CGM Sensor Crunkiness

I'm glad that Jamie understands the value of CGM in my life.  Since adding it to my diabetes arsenal 18 months ago it has whipped away an incredible amount of the worry and frustration I had been feeling with increasing frequency in recent years (See also: Buuuuuuuurrrrrrn.  Oooooout).   It is my safety net; my road map. But because CGM funded full time (using on-label guidance) can cost the equivalent of a monthly payment which would buy you anything between a second-hand VW and a brand new Beamer, I had to find a way to make full time CGM use work for me, without bankrupting us.  

Thanks to a well-timed promotion and a determination to lower my HbA1c in the approach to parenthood (yup, we're heading thataway) I was able to commit to two sensors a month.  But only if I used them for two weeks at least, per sensor. I've been recording how long my sensors last and two weeks is an easy achievement in terms of time, but there is a drawback; the crunkiness.  

Only days after a fresh sensor goes in - the adhesive tape almost shimmering in photographs because it is so very white, and so very crisp - comes the crunkiness.  It is the point between 'crusty' and 'manky', when the tape has started to come away and re-sticking it with my sensor lengthening lifeline, Skintac, means the tape has turned hard and attracts fluff where no fluff should be able to get.  The surface of the once silky tape is now somewhere between sticky and solid, and it is pretty nasty.

This is the stage when I look in the mirror and thank my stars that Jamie understands the value of this crusty, crunky abomination, currently camped out like an unwashed squatter on my upper thigh.  If CGMs could suffer leprocy, mine has it.


Wednesday, 4 June 2014

Medtronic e-shop!

There are so many 'must dos' on the daily diabetes checklist that even the smallest of moves towards customer convenience is a big deal, in my book.  One of the greatest steps forward in my own management was when my GP Surgery started allowing online ordering of repeat prescriptions and appointments; no more queuing at the clinic for repeat prescription printouts.  And it would seem that Medtronic feel the same way.


Last week they invited a few blogger-type folks to their office in glamorous Watford, to tell us about the roll out their new e-shop for pump supplies and products, as well as introduce us to some new faces on the accessories front.  Now a word of caution first, don't leave this one to the last minute, because when you register it will take around 3 working days for everyone's people to speak to everyone else's people so that you can order. But once you are set up, your usual orders will be ready to simply select and go!

Any products and supplies already agreed by your team (ie the gadgets you usually order) will appear with the cost 'greyed out' on the screen, and these can simply be selected and placed in your basket ready to order.  Any new items you want to select will of course need to be run through your team first, although you can pay for items yourself, if you choose.

If there is every a problem with your order, Medtronic's (highly recommended) customer service team will call you immediately to advise you about any delays or issues in fulfilling your order.

Now, as someone whose diabetes team (lovely as they are) still employ a stone-age system of ordering via one specific nominated-for-the-job person in my diabetes clinic, be warned that this has to be an arrangement already in place with your team.  But if you think you could use this kind of cutting out the middle man in your already busy lives, give your team a call and make use of someone's bright idea to make life for their patients easier.

Enjoy!

Monday, 26 May 2014

Adventure D!

I was 25 years old the first time I caught my first stand-up surfing wave.  I was exactly 3 seconds older when I came plunging off it.  But as impressive as my wipe-out was, that feeling of complete elation and (wildly exaggerated) sense of total accomplishment, is a feeling I believe everyone should have a chance to experience.

As a person with diabetes (PWD), surfing had its challenges: where to keep hypo treatments; how to adjust my insulin to cater for the increased exercise; how to cater for the adrenaline of that first wave.  But with a team of people around me clued up on what to do and when, it wasn't impossible.  In fact, I barely even remembered I had diabetes as I threw myself into the waves time and time again.

Adventure sports can be a daunting prospect for a person with diabetes. But it doesn't need to be impossible - far from it.  And that's exactly what my brother Chris, a kayak and sailing instructor was thinking when he first told me about his idea to set up an organisation that would allow PWDs to try adventure sports in a safe environment - one that was mindful of the challenges faced in trying outdoor pursuits with the added dimension of diabetes. He also agreed completely as I poured over how incredible it would be to have people with diabetes have a chance to meet, share their experiences ad try something completely new together, knowing they would be safe while doing so.  And that was how Adventure D was born!


Set up officially in February 2014, Adventure D weekends and holidays will always be led by people with extensive experience of diabetes or, wherever possible, with a Diabetes Specialist Nurse (DSN) as part of the leadership team.  That means you won't need to worry that your unique management style or personal needs will be overlooked in order to to keep pace with the group.

 

Adventure D will also offer the opportunity to get together with other people affected by diabetes, whether you have it yourself, or care for someone who does. 

 

Our launch weekend will be taking place between 12th - 14th September 2014, and will be based at the incredible and unique CYE Sailing Centre in Chidham Harbour, West Sussex.  Able to cater for 20 people in total, but with interest already flooding in, the weekend will take you from never-kayaked-before to having a developing set of skills.  It will also give you the chance to mix and mingle with other people with diabetes.  This weekend is best suited to people with type 1 as the advice on offer from the DSN leading the education programme on the weekend will be more applicable to those with type 1. But the plans for the first type 2 weekends are already in place!

And this is just the scratching the surface of where Adventure D is planning to go.  Already under way are 2015 plans for more kayaking, surfing, skiing in Europe, traversing the peaks of the Lake District, sailing and even climbing!

If you want to know more about Adventure D or would like to express your interest in a spot on the kayaking weekend or any of the other events we are planning, please check out the Website, Twitter and Facebook pages.

Register your interest now!

Thursday, 1 May 2014

Explaining the diabetes beast: the breathing analogy

I pride myself on being a professional diabetic, in that when an opportunity to educate, advocate or raise awareness arises, I take it.  Most of the time I am able to explain the processes, practices and pitfalls of diabetes with ease; it has been part of my life for 27 years, after all. But every now and then a certain loaded question leaves me unusualy unable to explain myself.  

"If you take your insulin like the doctor tells you, why do your blood sugar levels still go up and down so much?"

As infuriating as that question may be to someone with diabetes - someone who understands the illness and that it just doesn't work that way - it's not all together a silly question.  Let's think about it in terms of what everyday people like you and I - those without a medical degree -  know about illness: If you have an infection and take antibiotics, the disease goes away; If you have high blood pressure and take lowering medications, your pressure drops; if you have a headache and take paracetomal, the ache subsides.  Why then if people take insulin, do their blood sugars not stabilise?

The list of answers to that question is almost endless, with much not yet known about why.  We know that getting 'the right' level of insuln is a minefield in the first place, and that the impact of foods, exercise, emotions, hormones and even weather can often not be anticipated. But when I try to explain why diabetes is so complicated, my usually eloquent and articulate self becomes a bumbling mess of technical words and medical jargon.  In fact, if you are as unfortunate as my niece, you may even have heard my "Once upon a time there was an islet of Langerhans named Jeff" story.  To this day, she has no idea what diabetes really is. And I don't blame her.

So I've been asking myself how I could make some of the mystery of diabetes a little more explainable, and I think I have it: it is all about breath.  

Breathing is an automatic process in the body.  We don't need to think about breathing because our body, in all its complex beauty, knows exactly when and how deeply to breathe in order to keep us functioning properly.  When we exert ourselves, our body knows to increase how hard and fast we breathe, because that oxygen is needed throughout our body. Our brains tell the body that when we sleep, it must continue to breathe; when we run, it must adapt; when we rest, it recovers.  We notice it, but we don't control it.  The body  does this second-to-second, minute-to-minute and hour-to-hour, very successfully.  In fact, if you had to try and breathe intentionally (and why not give this a go for 5 minutes - take each breath intentionally and try to make them as natural as possible, while not letting the body make the choice for you) you would not be able to do it nearly as well as the body does.  If you sit very still you may manage what you think is steady breathing, but there will be subtle differences between each breath you take; one will be longer than the last, the next will be deeper than the first.  Then, add in some complications such as exercise, and you now have a battle on your hands.  Try to do this while you are at work, at a party, in a supermarket or while reading a book, and it would be near on impossible.  Before you know it you would be gasping for breath because you didn't take in enough air, or would tired from the constant thinking about how much and how often you should breathe.

To me, this is the same as diabetes.  What has gone wrong in our bodies is that the automatic process of blood sugar management which in a healthy body - just as with oxygen - ensures that the correct amount of glucose gets around the body, is broken. Insulin is the intentional beathing we are trying to do to keep our breath (blood sugars) as stable as we can, but trying to mimic any process that the body does so well automatically, while external factors such as exercise, food, emotions and hormones pound our decision making and moving the proverbial goal-posts, means that blood sugars can never be controlled completely.  Our brains do not send the right messages. If we sat still in a room with no influences complicating things, we would possibly be able to keep those glucose levels as natural as possible, but somewhere in amongst all the focus on blood sugar levels, we have to live a life.  We need to go to work; to concentrate on that book; to go to sleep.  We cannot be consumed by the task of managing blood sugar levels. We can get close to stable blood sugars, but there will always be times when we are simply unable do as good a job as the body would have done, even with insulin.

So how do you tackle this topic when it comes up so that people aren't baffled by why insul does not simply equals stable blood sugars?  And if you are someone without diabetes, does this make a little bit of sense?

Monday, 28 April 2014

Here come the Summer!

...which for a diabetic can mean only one thing: the low blood sugar chronicles are afoot.

There is a myriad of reasons why blood sugars rise and fall. Some days can be a whodunnit of usual suspects in the blood sugar battering game; other days the culprit is glaringly obvious. But it is usually this time of year that I know for definite that summer is on the way. Despite the usual moanings and groanings from the dismayed British people that our summer offers only drizzle and countryside mist, my blood sugars are the tell-tale sign that the country is indeed warming up. 

I love Summer. And I love the sun. But heat has always been a game-changer for me when it comes to low blood sugar levels. Everything from how often they happen, to how to predict them, becomes a battle of (near) epic proportions. 

Someone once told me it's because the body gets hotter and capillaries open wider in order to cool us down. That in return gets insulin pumping through the body much quicker, causing frequent and unpredictable hypos. I'm not sure if that's true or not (any ideas?), but either way, it's time to get the sunscreen out people. Summer is on its way. 

So if we needed any sign that the Summer monsoon is a-comin', my CGM trace suggests a big old yes.