Flashdance - What a Feeling

Here is the text of an address I delivered to @APPG_Diabetes the all-party parliamentary committee for diabetes. I was asked to deliver this speech by Diabetes UK and Abbott, to help spread awareness of the benefits of the FreeStyleLibre Flash glucose monitoring device.

By a nice coincidence the following day saw the long-awaited announcement of the FreeStyleLibre being aproved for NHS funding. My address will, I hope, help to show those who are unfamiliar with this device how beneficial it can be.

My readers will know that I give all my posts a song title - so this one chose itself. Irene Cara's classic 80s feelgood song: FlashDance - What a Feeling!

"Developing Type 1 diabetes at the age of 40 could have seriously disrupted my life and career as a school teacher. Teaching is a mentally and physically active job, in which the tag “Sir” comes with an expectation that you be “in control”. A condition which makes you prone to hypoglycaemia, leaving you helpless and vulnerable, albeit temporarily, is not easily compatible with being in charge of a class of teenagers. 

At the time of my sudden diagnosis at the age of 40, I was just six years into a senior teaching post as Head of Sixth Form, responsible for the lives and careers of 160 young people, and was also a classroom teacher of French, a job which included organising and leading a residential trip to France for up to 70 teenagers every year. I didn’t stop either role, so diabetes had to fit in with that lot, as well as my family life with three children, all aged under 13 at the time of diagnosis.

Like many other Type Ones, I have always taken the view that diabetes has to fit around my life, rather than fitting my life around diabetes. That’s perfectly possible. Diabetes is a condition, not an illness. The problem with Type One is that the life-saving treatment - insulin - is also the biggest threat to one's day-to-day welfare. 

It’s truly a love-hate relationship, and to make a success of this unwanted relationship means being one step ahead of not only the condition but also the treatment. So how do I keep one step ahead? Well of course it’s not always possible, but if I can, I try to anticipate and stave off highs and lows rather than reacting to them. Day to day life with Type One is all about avoiding highs and lows.

Meals, snacks and exercise are all a challenge, leading to either an uncomfortable high or a disabling low if I get the dose wrong, but any impending low or high can be averted by a well-timed snack or a small correction insulin dose and I am in absolutely no doubt that my greatest ally in trying to stay one step ahead of diabetes is my FreeStyleLibre flash glucose monitor, which does so much more than just telling me what my blood sugar level is. 

Years ago, not long after my diagnosis, I remember my wife saying to me, as I was doing a finger prick blood test, that what I really needed was a device that could tell me if the level was rising or falling. So when years later flash glucose monitoring became available, this dream became a reality. 

There are numerous advantages to flash glucose monitoring over finger prick testing, not least the lack of sore fingers and the ability to test an unlimited number of times - tremendously useful at times when I am busy, active, or both. But above all else, it’s the trend arrow, telling me whether the level is rising or falling, which is invaluable: let me give a practical example: 

You are probably aware that the desirable target range for blood glucose is between 4 and 8 mmo/L. That’s the level of a non-diabetic person. So let’s suppose I do a finger prick blood test and the answer is 6.0mmo/L. Sounds ideal. Bang in the middle of the desirable range. No action required. Forget diabetes for a few hours? 

Well no! Take that same reading on a FreestyleLibre and it would show me a trend arrow, indicating recent change in the blood glucose level.

I would see either a downward arrow, which could mean I am just minutes away from a serious and disabling hypo, or else an upward arrow, which whilst not threatening in the immediate sense means that I'm on my way to a period of discomfort, thirst, fatigue and, if repeated, serious long-term damage to eyes, kidneys, feet - perhaps the whole body. 6.0 may or may not require action, and only additional information can help decide. This, incidentally, highlights the outdated folly of the DVLA’s position on flash glucose monitoring as unacceptable as proof of fitness to drive. Once NHS funding is in place, a logical next step by the DVLA is to recognise not only that flash monitoring is acceptable, but that it is indeed vastly better in this context.

The FreeStyleLibre gives a much fuller picture of blood glucose than a one off snapshot by finger prick can possibly give. I haven’t even mentioned its ability to produce detailed records, highlight trends, and calculate an estimated HbA1c. 

My own HbA1c was never bad, but in two and a half years of constant use of the FreeStyleLibre it has fallen from 8.4 to 6.4. It has self-evidently improved my short and long term health, but at a cost so far of around £2500 of my own money, money which the NHS has not been spending on test strips for me during that time. 

Technology, especially technology which is relatively cheap, has a key role to play in a condition like diabetes, for which self-management plays such a big part. It is a source of regret and guilt to me that many others less fortunate than I have not thus far had access to this technology, and as a prominent advocate of the FreeStyleLibre I look forward to sharing the good news of its availability to all."

My address was warmly received. Now that NHS funding has been secured, I sincerely hope that many more will soon start to enjoy the benefits which I have enjoyed these past two years.

Summer Night City

Sitting outside a bar, drinking a refreshing glass of Öl at around midnight in the sultry warmth of  a still-light Stockholm night, I tried briefly to step out of the moment and reflect on where I was, what I was doing and why I was there.

I was sitting there in the Summer Night City talking, laughing and drinking with a group of  young women: a Canadian scientist who lives in Paris, an Italian electrical engineer who lives and works in London, a Welsh student dietician who is an accomplished and successful athlete, a medical secretary from Birmingham and a first year university student from Doncaster. Of the group, I had only ever met the latter two briefly before; the others were, until 24 hours previously, strangers. At other tables in the same bar were about twenty other people, all unknown to me previously, but now new friends: Germans, Dutch, French, Swedish, Irish and British.

As I paused for thought (not easy in a noisy and lively bar), I just had to smile. Why was I, by some years the oldest in the group, enjoying such a fun night out? The answer, dear reader,  you will probably already know. It's because I, and all the others there, suffer from an incurable and life-threatening condition about which I have chosen, only in the past couple of years, to talk online.

Yes, I was at #DXStockholm, a weekend conference for diabetic bloggers organised and paid for by Abbott Healthcare, a global giant of a medical equipment company, makers of the FreeStyle Libre monitoring device of which I am so fond that I call it "Libs" (not original - copyright Amber Rose)

Such are the rewards for responding to the rubbish hand that fate has dealt us in a positive and constructive manner.

Two days earlier, as I boarded a Stockholm-bound plane on a sunny Manchester morning with my good friend and fellow sufferer Lydia, we reflected on the chain of events that had brought us to that in many ways surreal situation. Which twists of fate, which decisions made by each of us in our hitherto unconnected lives had brought us to those aircraft steps? You really couldn't make it up.

Much else over the weekend was gloriously surreal, and enormous fun, and merits some thanks. How about the logistics for a start: flying somewhere, and checking in to a top-of-the-range hotel, with the bookings and payments done by a company account just doesn't happen to schoolteachers like me: at best, we book our tickets and our budget hotel rooms and claim it back, and at worst, we just pay ourselves. Thank you, Abbott! Or how about bopping  to Mamma Mia in an Abba-themed disco pod on a Sunday lunchtime with two of the big cheeses from Abbott and a friend with his 6 month old baby daughter in her baby sling?  Tack, Benny, Bjorn, Anna-Frid and Agnethe! Or how about bantering on Twitter with a new German friend when she and I had badly failed to respond with an appropriate level of seriousness to the calming voice of a Mindfulness coach? Yes folks, I can exclusively reveal that Germans do indeed have a sense of humour every bit as subversive and cynical as ours! Vielen Dank, Steffi! Or how about hearing the story of the 1973 bank robbery which gave rise to the so-called Stockholm Syndrome, from a cool Australian tour guide and local resident called Ryan, standing outside the building where it all happened, now a high fashion store. Cheers mate! Oh, and while he was telling the story, an even cooler old gentleman dresssed in an immaculate bright blue suit came out of the store and calmly confirmed that the tale being told by our guide was 100% true, "because I was there". Tack, Mr Random Swede! Somehow, we believed him. We were in such a good mood already, so why would we doubt him?

So was this just a corporate "jolly"? Just a p***-up funded by the profiteering of a giant corporation? An easy accusation to make, but one which I, and all my diabetic friends, would strongly refute.

For a start, we actually deserve a bit of fun. Life with Type One Diabetes is a 24-7 battle, a 365-days-a-year balancing act from which there is not a moment's respite. We don't look ill, we don't look like we're just one small error of judgement from a hospital admission or worse, but that's the way it is. And people forget or don't realise, because we're so damn good at it. Occasionally, it goes wrong, and one of our number keeled over at breakfast on the last day. Needless to say, she was helped and nursed back to health by the rest of us. But it was a sharp reminder for us all of what can go wrong.

But Abbott wouldn't put this on just because they feel sorry for us. We were invited because, in a variety of ways, we have all helped to build the wonderful trans-national support network that has helped to transform the lives of people with (mainly Type One) diabetes since the advent of the internet and social media. We have helped to develop, share and promote new diabetes technology in a way that, of course, helps Abbott, but also helps each other.

To be told, as I was, by senior managers in Abbott that my FreeStyleLibre film is valued and used all around the world to help people understand the importance of the gadget was humbling. And to meet in the flesh a veritable Euro-Army of well-informed, canny diabetics was inspirational....and fun. The event was called #DXStockholm because it's an exchange. An exchange of ideas and expertise between the people from Abbott who develop the stuff we need to stay alive and healthy and the users of that stuff. And as far as I can see, it's a valuable and valued meeting of minds....and hearts. I've already waxed lyrical about the value I place on the #gbdoc and the friends I have made from that, but now that same feeling of camaraderie was replicated at a European level.

I'm going to leave it there, because there's another post to be done about what we did over the weekend. That needs photos and video, which I can't do on a plane or a train. But I'm not home yet, so I'll just post this straight away as a massive THANK YOU to all who helped organise the event, and those who came and made it what it was. I'll say that thank you in Swedish, because it's such a cool word:

TACK !

Much love to all my diabetic friends - you are, collectively and individually, simply awesome - and lovely!

Watch out for my #DXStockholm diary when I get time. For now, I'm nearly back home to see the lovely and long-suffering Mrs L, @RosanaghL and Godiva the cat.

However sad I am about the end of the weekend, it's nice to be back home too...

Hi-Ho Silver Lining

Like an essay handed in at the last minute, here is my offering for #DBlogWeek.

It's been a busy week for me at work and at home, so not much time for blogging, but having been invited to a conference in Stockholm for diabetic bloggers, I would feel bad if I let the week designated for DBloggers pass by unmarked by me.

So here are a few, not very original, thoughts arising from my unexpected invitation from Abbott to a be part of a gathering of bloggers from across Europe in Sweden's Summer Night City at the start of June.

I put out a tweet this past week saying that the #GBDOC was "the silver lining of the cloud of diabetes". Unsurprisingly it got some likes and approving comments, which is hardly remarkable - flattery will get you anywhere!

But I do mean it. For about 16 of my 18 years with diabetes, my attitude to the condition was one of "just get on with it". I couldn't be bothered with it, to be honest, and so just did what was necessary to stay well and enable me to live my life much as I always had done. I was pretty successful in so doing, and therefore had no want or need for much support from others. I certainly wasn't very interested in talking about it and had no particular interest in meeting others with the condition.

Nobody, therefore, is more surprised than me to find myself now so involved in the wonderful online-based but very real world of the #GBDOC. Like most of its users, I am unclear how or even when I started to get involved, but I know that I am now a fairly prominent presence in a community of people united by their affliction with an ever-present, incurable, but ultimately manageable condition.

Through this community, I know that at almost any time of day or night, I can say something on Twitter and someone, somewhere will respond in a friendly and positive manner. And if I, or anybody else, tweets anything that remotely suggests unhappiness, discomfort or difficulty, it is certain that others will be quick to offer help, support, advice and good humour - and in saying that, I hope that I am as much a provider of that support as a recipient of it.

This, then, is indeed the silver lining to the cloud that threatens to block out the sun from our lives. I cannot now imagine life without such easy access to friendship and support, and I regard the #GBDOC as a great vindication of the often-maligned online world, in that those I have got to know through the filter of social media have invariably turned out to be just the same in real life as they are online. Many of us have met up in real life, notably at two successful national meet-ups of the #GBDOC, and of course in a couple of weeks' time I will be joining some whom I already know and others whom I don't at a European bloggers' event.

It is truly remarkable where diabetes and Twitter have taken me, and I cannot help but smile when I think that just because I chose to associate with a few fellow sufferers from diabetes, and to sing the praises of a new glucose monitoring device - the FreeStyleLibre - I am about to be flown to a country I have never visited before to meet with people I don't know, or I haven't known for long, to spend a couple of days talking about a condition that I spent sixteen years trying to ignore. 

Such are the serendipitous, and sometimes welcome, twists and turns of life, even at the age of nearly 60. Thanks to diabetes and the #GBDOC, my horizons have broadened, and I have new friends of all ages at a time in life when often the number of friends and contacts tends if anything to decrease. And all because I suffer from an annoying, very dangerous, ever-present and incurable medical condition. For me at least, the cloud of diabetes does indeed have a silver lining for which I am humbly grateful. Hi-ho, Silver Lining !