Monday 30 March 2015

What's going on?

This is my very first blog post. I have been wanting to start a blog for some time, inspired not least by some of the wonderful efforts by fellow diabetics, some of whom are a lot younger than me and put me to shame with the quality of their writing. I would cite in particular Ellie HuckleNichola Davies and Jules Edwards who have become good Twitter friends.

Given that I enjoy writing, it seems perverse not to make use of my ability to write for an online audience of people who know me and people who don't. Some of my diabetic Twitter friends have been encouraging me to do a blog, so here it is!

My blog is therefore inspired by fellow diabetics, but I don't want diabetes to define me, and I certainly don't want to become a "diabetes bore". I would like my blog to reflect the eclectic nature of my interests, indeed of my Twitter profile, so I will try to write about a variety of topics over time. However, I will start with a diabetes related topic, as diabetes has been a big part of my life in recent weeks, in a very positive way. I am nothing if not positive by nature, so I hope that some positive musings will be of help and interest to somebody.

So, as Marvin Gaye once asked - What's going on? Well, with regard to diabetes, it's the quantum leap forward that is FreestyleLibre which has given me the chance to get closer to the answer to that question. This wonderful, but rather expensive, piece of kit is telling me more about what's going on in my pancreatically-challenged body than I have hitherto dreamed of knowing. 

I have lived with Type One Diabetes since 1998, which means that I have lived about half of my adult life with the condition. Perhaps that merits a little further explanation: If you consider the "adult" world to be the world of work, the world beyond being a student, or even the world beyond marriage, then I became a proper adult in 1981, when I left university, got married, and started work as a teacher. That was 34 years ago, and after 17 of those years, I developed Type One Diabetes out of the blue, at the end of 1997, at the age of 40. Some mid-life crisis! I have been a teacher for 34 years, 17 without diabetes, 17 with.

Now I can't claim to be one of those who remembers the bad old days before blood glucose meters, insulin pens and all the paraphernalia of modern diabetes. I feel lucky not to have faced the challenge of diabetes as a child or a teenager. I have to say, however, that the FreeStyleLibre is truly a leap forward in terms of knowledge, and if knowledge is power, then we T1's finally have a bit of power over this infuriating condition!

In just 5 days, this little machine has become one of those "how did I manage without?" gadgets - a bit like our Smartphones, I guess. I certainly check it obsessively, in the same way that most of us obsessively check those smartphones!

So what is the Libre? Well, it's a very clever, technically very advanced, little scanner gadget which scans a sensor worn on the upper arm and gives an instant reading of the blood sugar level, and more importantly, where it has been for the last 8 hours and a prediction of where it is heading. It's this feature that is the real leap forward. Look at this screenshot, taken in mid-evening:-

This tells me that today, my BG fell from a high after a big lunch, rose after a snack around 3:30 and again after my light evening meal then fell during the evening. But more importantly, it tells me (arrow top right) that the level is rising, and so there is no need to act too drastically in response to the low BG.

To a non-diabetic, this might all seem unremarkable, but to those of us who have the dubious pleasure of living with this mercurial condition, the ability to tell not just what our blood glucose level is, but to know where it is heading is truly life-changing. 

And it doesn't stop there. The other revolutionary change is that it can do this without the need for us to inflict pain on our fingers. Sorry to exaggerate, but that is precisely what diabetics have previously had to do, often many times a day, in order to know whether our blood sugar is too high (with attendant long-term health risks) or too low (with attendant risk of imminent collapse) Each and every test hurts a little, and leaves a drop of blood to clear up and a contaminated test-strip to dispose of.

The Libre is a very clever piece of kit. It doesn't actually measure glucose in the blood, but rather the interstitial fluid just under the skin, which it converts to a BG reading using an algorithm. There's a sensor with a tiny needle which you have to fire into the upper arm using a special applicator. It sounds alarming, but is completely painless to apply. It doesn't come cheap - best part of £60 for the reader isn't too bad, but around £40 for a sensor that lasts precisely 14 days, meaning a running cost of £1000 a year. The NHS won't fund it at present, so that means the likes of me are self-funding. There is a very strong argument for NHS funding for the sensors - £1000 pa is pretty cheap compared to the complications it will help us to avoid.

Is it worth it? Well, as Ed Milliband would say, "Hell, yes!" To be able to see trends is truly empowering, and enables a far more nuanced response to highs and lows. Whilst writing this blog, I tested and got a 3.1. Previously, that would have led to a slightly panicky intake of something, probably jelly babies or biscuits, for fear of falling into a potentially dangerous hypo. However, today's 3.1 came with a horizontal arrow, meaning that the level wasn't falling. One biscuit was fine, and 20 minutes later it was 5.1 and rising. By using a minimal correction (1 digestive) I avoided going too high. Brilliant!

Knowledge is indeed power. What the Libre reveals about the incredible sensitivity of the human body to what it takes in is remarkable. Look again at those numbers quoted above: 3.1 to 5.1 in 20 minutes. Already in just 5 days I am starting to see, in far more detail than ever before, the effect of different foods or exercise on blood glucose. That in turn means that I can keep my levels closer to the desirable, healthy, target range of between 4 and 8 mml/l.

Just a little bit of self pity if you'll forgive me: what the libre also shows is how amazingly good a healthy pancreas must be at regulating blood glucose levels. If you haven't got diabetes, you probably never give a second thought to the pancreas, but believe me, it's there inside you, working away at whatever you have just eaten, taking into account what exercise you are doing and regulating your blood sugars in a way that you don't even notice. Those of us whose pancreas has given up have to think like a pancreas without being anything like as clever as one (and please remember, if we're Type 1, this is a random piece of bad luck, unconnected with anything we've done or not done in our lives). And if you are the parent of a child with Type 1, you have to think like their pancreas, which is even harder. Please spare us all a thought!

Please understand me and others if we constantly post pictures of our Libre screen on Twitter. It is genuinely that impressive, and for now, I have to admit it's actually rather fun!

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