September ’21 (Oh What a Night!): ArT1st Live

I’ve never been particularly prolific on social media or as a blogger. I prefer to use fewer, more considered words rather than too many words in the real world and I am no different in the online one. Moreover, it's been an exceptionally busy few months for me, with various post-retirement involvements and responsibilities all bringing worthwhile, enjoyable yet time-consuming tasks my way since the end of summer. And with two members of my family near and far, as well as a best friend, unwell in recent days, that too has been more of a priority than shouting into the echo chamber of diabetes Twitter during this Diabetes Awareness Month.

I've looked on as November has brought the usual crop of posts, tweets and images, all aimed at raising awareness, especially in this centenary year of the discovery of insulin therapy. I’m a little bit concerned that it’s starting to become a bit dutiful and ritualistic, but I admire those who persist. There is a growing sense that it's all been said before, and the “awareness-raising” posts that crop up on Twitter, Facebook and Instagram during November in the run-up to World Diabetes Day on the 14th often seem increasingly contrived or recycled. I sometimes worry that awareness raising does nothing more than preach to the converted. Many who were previously prominent in the diabetes community have gone quiet, and it sometimes seems that they are the wise ones. I was very sad recently when I saw a post from one of them apologising for his lack of advocacy presence, or worse still another saying she had been accused of lack of advocacy activity - the lady concerned is more than a little busy raising two lovely pre-school children, amongst other things. Those just quietly getting on with their lives without telling the world all about it are in many ways my dia-heroes.

Having said that, I have read, this year as every year, some wonderful observations and stories which serve to remind us all that we are far from alone, and for those newly diagnosed that there is a long and fulfilling life to be lived despite the undoubted challenges of managing the condition. Such posts and stories encourage others, and encourage me to keep writing and sharing, and more importantly to enjoy the work of others.

I enjoy writing, and so if and when I find something worth saying, I shall say it. There's no point in just writing for my own pleasure, so I shall continue posting here and hope that some will enjoy it. However, as befits my long-held and oft-stated position, I have little expertise in diabetes, only experience of it, and limited enthusiasm for diabetes technology, so there's not much for me to write about in the field of diabetes. Heaven forbid that I should be thought of as a “diabetes blogger”.

So I am writing and posting this piece for Diabetes Awareness month, and for WDD on Saturday. It’s a long-overdue reflection on ArT1st Live, already fading into a distant memory, yet in many ways the proudest day of my 24 years living with diabetes, and a day which encapsulated so much about my attitude to the condition. It’s about diabetes, yet it isn’t. Just like me.

The  ArT1st Project - still very much current and future as well as past - came to a triumphant climax on Saturday 25^th September, with a gathering of around 150 people from across the UK and beyond at Drapers’ Hall in the City of London for a celebration of the creative and artistic talents of people living with Type One. 

The project had originally been the brainchild of Partha Kar back in 2019, and was supposed to be a one-off real-world event. He invited a group of enthusiastic community members - both HCPs and people with diabetes – to start planning an event, but it fell victim to the Covid-19 Pandemic and became an online event, which provided a much-needed distraction for organisers and contributors alike during the tough days of the first and severest lockdown in 2020. The website remains a wonderful reminder of what was achieved by so many, and will remain for the foreseeable future as a reminder of those difficult yet in some ways life-affirming days.

However, as soon as circumstances permitted, the organising team wanted to make the live event happen, and happen it did: perfectly timed in many ways, despite more than a few Covid scares, it proved for many of us to be a welcome return to real-world socialising, to the joys of dressing up, of eating and drinking together, which are such an essential part of what makes us human. The sense of excited anticipation that comes with getting dressed up, the “how do I look? feeling, the butterflies in the stomach, were forgotten yet precious emotions. And there was so much to enjoy about the evening:

The venue, Drapers’ Hall was simply perfect, and a source of real personal pride to me, having secured it thanks to an unlikely centuries-old connection between one of the City’s most prestigious guilds and a small-town school in Lancashire to which I devoted an entire working career. Everything about it was pitch-perfect, notably food and drink of the highest quality, discrete and attentive service by the catering team, and rooms which almost literally took the breath away of all seeing them for the first time.

The Livery Hall, Drapers' Hall

The attendees - people with diabetes, their families and NHS professionals who care for them - were a delightfully esoteric mix, bringing together some familiar names and faces from the world of diabetes care and advocacy yet also many more who had seldom, if ever, met or interacted with others from the diabetes world. That alone was a triumph, extending the reach of the community in a new way.

But above all, the performances and artwork to which we were treated were phenomenal, and gave us a powerful reminder that Type One Diabetes, that most random of afflictions, creates a community which is a random collection of individuals, impossible to categorise by age, gender, lifestyle, personality type, wealth or anything else. In this case, all they had in common other than T1D was a remarkable level of creative talent, and a wonderful willingness to share it.

And so we were treated to a wonderful celebration of life despite diabetes, not life with diabetes. After a brief history lesson from me, explaining how on earth we had all ended up in this wonderful building, my best friend and fellow organiser Ellie Huckle set the tone with a thoughtful take on the link between the imperfect delights of the arts and the imperfections of life with diabetes, and then we were able to forget the D-word and enjoy ourselves. First we had the edgy comedic genius of Ed Gamble, who captured perfectly the spirit of the event with some hilarious observational material, yet remained commendably clear that he was first and foremost a master of ceremonies rather than top of the bill. 

Ed Gamble

Ed was followed by Sophie Oliver, a student of ‘cello at the Royal Academy of Music, whose dignified yet joyful interpretation of familiar favourites from popular and classical music set the tone perfectly. 

Next came Anibal Miranda, a Spaniard living in London, with passionate interpretations of the musical theatre numbers that he loves so much.

Anibal Miranda

Then a scratch acappella ensemble called The Darling Buds of May put together and led by Pete Davies, with Nick Cahm, and Abi Ackerman, three stars of the GBDoc firmament, who blended perfectly with their supporting guest vocalists with a performance of the highest quality in a musical genre in which there is no hiding place.

The Darling Buds of May

After the interval came Abi Ackerman as a vocal soloist, her powerful voice and confident stage presence filling the Hall as only she could, including a self-penned song based around the thoughts of others living with T1D. 

Abigail Ackerman

She was followed by the wonderful Duke Al Durham, a Welsh rap poet who voices feelings familiar to all of us in his intensely personal writings. 

Duke Al Durham

Next came Siobhan Argyle, a T1D Glaswegian Victoria Wood, whose catchy, witty and engaging ditties of everyday life during the pandemic were delivered with a confidence which belied the fact that this was her first public performance.

Siobhan Argyle

And finally there was Sheku Kanneh-Mason: what can we say? Already a household name thanks to his appearances on BGT, Harry and Megan’s wedding, at the Proms and much more besides, he brought his cello to life in a manner which was, almost literally spellbinding. The fact that, before and after his performance, this delightfully self-effacing young celebrity just sat at a table with other guests, and that he duetted with Sophie Oliver with not a trace of self-importance speaks volumes about the man. Truly a superstar.

Sophie Oliver and Sheku Kanneh-Mason

So much else was good about the evening, most notably the chatter in small groups that is always one of the best things about any real-world get-together, but almost forgotten is the fact that the evening raised a much-needed £6000 for JDRFUK, whilst being pitched at a cost to attendees that made it accessible to all, thanks to the generosity of commercial sponsors Abbott, Novo Nordisk and Dexcom. An auction of artworks created by people with Type One raised almost £2000 thanks in no small part to Partha Kar’s persuasive mastery of a skill new to him.

Professor Partha Kar, OBE

But perhaps the best thing about Art1st as a project and ArT1st Live in particular is that Diabetes has been present, yet totally absent. Does that make sense? Of course it does! That, surely, is a realistic aim for all of us compelled to live with this fickle condition, and I have been fortunate enough to be able to live that out that aspiration over these past 24 years. 

Art1st Live was a gathering dominated by people who live with the condition, all of whom will have spent that evening discretely aware as always that their condition needed their attention, that the unusual circumstances of the evening, the unfamiliar food and drink, the late night, the excitement would all have to be borne in mind if they were to make it to the end with enjoyment and dignity unscathed. And yet all they did was enjoy themselves. Diabetes was there, but was largely unseen except for a lot of technology proudly on display because of sleeveless dresses. It was an evening of fun and friendship, about the people, not the diabetes, the ability not the disability.

As with all my posts, I like to find it a title from a song, and this one came to me as I sat alone in my hotel room after the event, unable to sleep yet enjoying the memories already. An exuberant celebration of a wonderful night out? What better than Franki Valli and the Four Seasons’ 1976 classic? Let’s just rename it with a revised full title: September ’21 (Oh What a Night!). What a night indeed, and one which, by popular demand, will surely be repeated before too long.

In conclusion, I must salute my fellow organisers: Agnieska Graja, Pete Davies, Partha Kar, Ros Gray, Lydia Parkhurst, Lis Warren, Sarah Ali Racanière, Jazz Sethi, Ellie Huckle, Kamil Armacki, Jess Broad and Danni Hitchins. As good a team as any I have ever had the pleasure to work with, and one linked by one thing: a life with, or caring for others with, Type One Diabetes. Patients, health professionals, a charity and three commercial companies working together. Take a bow:

Members of the organising team

ArT1st Live was sponsored by headline sponsors Abbott and Novo Nordisk, and supporting sponsor Dexcom, in order to allow all proceeds to go to JDRF UK.

All organisational work was carried out by community volunteers, supported by JDRF staff.

Photo credit - Max Turner Weddings

Twitter: @maxturnerphoto

Instagram: @maxturnerweddings

Website:  www.maxturnerweddings.co.uk

It's Getting Better: thoughts for World Diabetes Day 2020

November is Diabetes Awareness Month, and as happens every year in the first half of the month, leading up to World Diabetes Day on November 14th, there is a growing frenzy of activity and excitement in the online world of diabetes. This year, that online world is the only forum in which the diabetes community can interact to any extent, and so this frenzy and hyperactivity seem particularly intense. Moreover, we are approaching the centenary of the discovery of insulin therapy (January 11th 1922), so no doubt next year’s WDD celebrations will be even bigger and better, not least because we can all hope that celebrations will by then be back in the physical world, rather than the virtual one.

Amidst all the frenzy, it’s a good moment to ponder developments in the world of diabetes, in its treatment and care. In so doing it is impossible to avoid noting how much has changed in recent years, and difficult to avoid the conclusion that the pace of that change is accelerating.

My own thoughts at this time of the year are always shaped by the awareness that I am approaching another anniversary of my own diagnosis, my “diaversary”, which falls on December 19th, this year marking 23 years since I was joined for the second half of my journey through this world by my unwanted friend. Any reflections on what is going on in the diabetes world are necessarily shaped by thoughts on the passing of time, and the increasing longevity of my life with diabetes - I have lived around one third of my life, and more than half of my adult life, with diabetes.

So, in the words of the late, great David Bowie’s last big hit before his premature passing, Where are we now?

I find it very hard to resist being bullish in my response, not least given that healthcare in general is under unprecedented logistical and financial pressure from the global pandemic. In saying so, however, I must qualify it with the very significant caveat that my thoughts apply to those like me living in a prosperous country which provides free healthcare for all. I am painfully aware that any bullishness does not apply to much of the world, including parts of the world like the USA where the state’s prosperity should enable universal healthcare to be a reality. So the thoughts that follow are made in the full and somewhat guilt-ridden awareness of my own relative good fortune.

When I was diagnosed in 1997, diabetes care and therapy had already advanced significantly beyond what many of my friends who have lived with diabetes for far longer than me can remember. A good diabetes friend, of similar age to me but living with Type One since the age of 2, has lived from the days of testing by urine strips and injecting with large syringes, to nowadays using an insulin pump and a CGM. He keeps an impressive personal archive of some of the primitive-looking gadgetry that kept him alive in his early days.

My introduction to diabetes came when injection pens with pre-filled cartridges were fully established, and small electronic meters providing rapid and accurate figures on blood glucose level from a finger prick test had become the norm, albeit fairly recently. More importantly in some ways, I came in at a time when advances in insulin types were starting to give far greater flexibility by mirroring with increasing accuracy the workings of the pancreas. Within a year or two of my diagnosis, I had moved to the basal-bolus régime which is essentially the one that I follow to this day. So things were already pretty good for a Type One here in the UK, and I never at any time felt threatened by it; however, better days were to come!

I am in no doubt that the biggest technological advance in recent years has been the arrival of non-invasive blood glucose monitoring giving more than just a snapshot of levels, and giving it in such a way that it can be done unobtrusively, frequently and painlessly: I refer, of course, to low-cost continuous monitoring devices, and in particular to the FreeStyle Libre flash monitoring system. The advances in diabetes technology have been stunning, and are accelerating as they become cheaper in real terms: this mirrors the way that, in our everyday lives, we all now keep in our pockets a mini computer of infinitely greater power, capacity and capability than the lumbering desktop with its hefty CRT screen that sat on our desks back in 1997. 

Commercially available devices have in turn been the stimulus for creativity and amateur expertise which has enabled patients to drive progress towards closed loop systems, with the prospect of a widely available de-facto artificial pancreas now looking more achievable than the proverbial “ten years from now” cure.

Alongside medical technology, information and communication technology has also made an astounding difference to those of us living with diabetes. When I was diagnosed I felt very much “at the mercy” of diabetes, and therefore very reliant on the input of the doctors and nurses assigned to my care. 1997 was very much in the pre-internet age (I first went “online” in early 1998, and as such I was an early adopter of home computing at a time when the internet was seen by many as the province of nerds and teenagers). My knowledge of diabetes at diagnosis was minimal, and beyond what HCPs told me, my only source of information was the printed word in books and magazines. What a different world it is now, with our first port of call on a medical issue being, for better or worse, Dr Google. These days, a person newly diagnosed would be signposted to a vast amount of information, to websites, to YouTube videos, to blogs, to peer support groups and a whole lot more. The problem must be to decide which resource is good, which is bad and which is ugly.

However, I believe that an equally important change in recent years is not a matter of kit and technology, but rather a far less tangible change of attitude on the part of both those living with diabetes and those who care for them. The irony is that this, too, has been driven by technology. There are still some who decry the influence of the internet in general and social media in particular, but what strikes me in the context of diabetes is that people have used technology in a very human and personal way, and that it has built bridges and brought people together in a way that harnesses the best that technology has to offer with the best and simplest of human virtues: friendliness.

Back in 1997, I would never have believed how connected we were all destined to become. I would never have believed that I would be talking, during a global pandemic, to people all over the world in little boxes on my computer screen, or that I could be constantly conversing in real-time written messages with friends. These days, my best source of “breaking news” is my best diabuddy whom I only know because we both have diabetes and started talking about it on Twitter. When anything good or bad happens in the news, or in either of our lives, our first response is to message one another. Many other people with diabetes enjoy similar, relatively new, but close, friendships.

But it’s not just peer-to-peer: we in the UK are privileged to have an online diabetes community in which patients and healthcare professionals interact freely, safe in the knowledge that each has something equally important to bring to the relationship: lived experience on the part of the patient and clinical expertise on the part of the professional. I count myself blessed with the personal friendship of many HCPs whose initial connection to me was through the diabetes community.

The community has no leaders as such, but is led by many: I shall deliberately avoid mentioning names, but we all know that there are doctors, DSNs and pharmacists of national professional repute who freely share their expertise and time online, yet just as importantly they share their lives, their interests, their passions and much more from well beyond their professional lives. Likewise, we all know that there are people with diabetes - and parents of children with diabetes - who freely share the experience and know-how that comes from living with diabetes, yet also their own personalities, their lives, their passions and much more, again from well beyond their lives with diabetes. During the pandemic, we have seen individual initiatives, notably by the organisers of the weekly tweetchat, like Zoom quizzes and the Fantasy Football league, and also larger initiatives like the Art1st Project, run by a coalition of people with diabetes and healthcare professionals. What these have in common is that they are about the people, not the condition, and it is this generosity of spirit that has enabled the community to flourish despite the inevitable fragmentation that has resulted from its growth in numbers. Alongside the partnership between patients and HCPs, the diabetes charities, Diabetes UK, JDRF, and DRWF have also become part of the community, not least through the personal and personable engagement with patients by their staff and leaders.

The blend of timeless human virtues - kindness, sharing, listening - with technology has given us a world unrecognisable from that of only a decade or so ago. Spending so much time alone at home this year, as we have all been compelled to do, I have come quite close to feeling grateful to diabetes for giving me some of the best friends I have ever made. 

When we finally emerge into the post-Covid world - sooner rather than later, we hope - it will be in many ways different, but we can surely hope that the blend of technology-driven remote connectivity and the warm relationships that technology has help to foster will leave us with the best of both worlds.

I was going to entitle this post Where are we now, taken from that rather bleak but wonderful Bowie song referenced earlier, but given that the announcement of a breakthrough on a Covid-19 vaccine came after I had started writing it, but before I finished it, another song came into my head, and I prefer to leave that as my customary song title for this post: the uplifting 1969 classic by (Mama) Cass Elliot which speaks, I hope, of where we are heading in the pandemic, and in diabetes care: It’s Getting Better.

Happy World Diabetes Day, everyone! With thanks to all who are working so tirelessly to support people with diabetes.

People places and events from my world of Diabetes

I’ve Gotta get a Message to You: mixed messages in raising awareness of diabetes.

It’s Diabetes Awareness Month, built around World Diabetes Day, November 14th - the birthday of Sir Frederick Banting, inventor of the insulin injection therapy to which those of us living with Type One Diabetes owe our lives and well-being.

Every November in this, the social media age, screens turn blue and people with diabetes spring into action with posts, blogs and images intended to “promote awareness” of diabetes. Amongst this torrent of awareness-raising material, there’s always good stuff, some entertaining, some serious. Eloquence, insight, seriousness and humour in plentiful supply; quite a mixed message, you might say. Read on...

“Awareness raising” is very much a thing these days: there’s scarcely a day goes by that isn’t a *insert condition here* awareness day, and as a result I’m pretty sure that we are all better informed about a range of medical conditions with which some, often many, people are living, and for which someone somewhere is campaigning, researching, supporting and often fundraising in an attempt to improve matters. 

But what does “awareness raising” mean? Is it necessary, and does it work? 

This presents two big questions: whose awareness are we trying to raise? And what do we want them to be aware of?

The answer to that first question is fairly obvious: It’s those who don’t have, or don’t know well anyone who has, the condition to whom we should be directing our efforts to raise awareness. Awareness and knowledge of diabetes, which is so common, remain worryingly low, and I for one am reluctant to get angry about this. I knew very little about diabetes until I developed it, and I am sure there are many serious and common conditions of which my knowledge is very limited because of lack of experience. So there is a continuing need for those living with diabetes of any kind to remind the world that this invisible condition is there, and that every single human being is at risk of developing it.

But what of that second question: what do we want those unfamiliar with diabetes to be more aware of? 

Well, I recently spent an evening catching up with a longstanding friend of my own age, whom I hadn’t seen in many years, and whom I knew well in the days before I had diabetes. Naturally, our conversation turned to the topic of my diabetes, and he watched with a mixture of incredulity and interest as I tested and injected ahead of our meal together. He was vaguely aware that diabetes involved injections, but had no real awareness of the two main variants of the condition, of what the healthy pancreas does in a person without diabetes and how those with the condition have to replicate its job, partially or fully. Above all, like many people, he had never really been made aware of the central paradox of Type One in particular: that an effective and life-preserving medication - insulin -  presents an ever-present and unpredictable threat to our day-to-day well-being which must be monitored, anticipated and reacted to, not by professional experts, but by patients themselves.

So all those posts reminding those who don't know diabetes just how difficult, time-consuming and draining it can be are clearly necessary, and the awareness-raising message is well worthwhile.

But what about that message? Is that really all we want others to hear? Do we just want to make sure that others feel sorry for us, make allowances and help raise funds to finance better ways of preventing, living with or even curing diabetes? I really don't think so. Self pity is not always a good message coming from those living with a serious yet perfectly survivable condition. Harsh, but true: what we actually need is a mixed message. 

Now in all other areas of life, “giving off mixed messages” is not a good thing. We crave and admire clarity, honesty and consistency. Yet time and again, from both my own experiences and those I read and hear about from others, I realise that if we are successfully to “raise awareness” of the complex and mercurial nature of diabetes, we need to give a message which is indeed mixed.

As I said in my TAD Talk back in 2017, diabetes is an enigma: on the one hand quite something, yet on the other hand nothing at all. It's something that demands our attention, sometimes fully, often partially, every single day of our lives, and means that even the most ordinary of activities - eating, exercising, driving, having fun - can only be done and enjoyed with at least half an eye on our diabetes. Yet it's also nothing in that it needn't stop us doing anything and enjoying it to the full, throughout a long and active life. 

So the message is mixed, and that message with all its inherent ambivalence needs to be understood. Which is why I acknowledge and value the voices of all those who advocate on behalf of those living with diabetes during this and every month. Some choose to accentuate the negatives, wanting to be sure that the rest of the world understands better the burden of diabetes; others choose to accentuate the positives, wanting to be sure that the rest of the world understands that diabetes is not a barrier to doing anything. We all react differently, so a variety of apparently contradictory voices and responses is both necessary and desirable.

I've just gotta get a message to you, as the Brother Gibb sang, long before the white suits, falsetto and fever. 

But that message is, quite rightly and inevitably, a mixed message.

A letter of hope

A few weeks ago, I was asked by one of my many friends from the online community to write a "letter of hope" addressed to those new to Type One diabetes, either in their own right or as parents. 

The lady concerned, Maureen, lives in Australia and has a son with Type One. She finds that in Australia, with its smaller population and vast size, it is less easy for people with diabetes and their families to connect with each other, and so she is putting together a website of resources. 

You can read about her project on her blog here: 

https://mumoftype1.wordpress.com/2016/10/19/letters-of-hope/ and follow her on Twitter as @mumoftype1

So this is what I wrote, and I offer it here as my piece for World Diabetes Day:

Dear Dia-buddie,

You, or your child, have just been diagnosed with a condition. Not an illness, not a disease, but a condition.

It’s a shock when it happens. Right now, it must seem to you and your loved ones to be pretty bad news. I hope you haven’t just heard a load of “don’ts” and “can’ts”, but it’s those that stick in your mind. Diagnosis with diabetes can seem very negative, and to be fair, medical people have to make sure you keep yourself well and don’t do anything to make things worse.

The trouble is, most people know a bit about diabetes, and they tend to remember the bad stuff, or the wrong stuff. Everyone thinks you can’t do this, can’t eat that, must be careful about this, shouldn’t do that.

Everyone claims to know someone with diabetes – but then it turns out to be Type 2, because that’s far more common.

 

Some will even be callous enough to tell a tale of their auntie, uncle, grandad or someone who had diabetes and went blind/lost a leg/died.

So how about a dozen positives:

•It won’t kill you.

•It won’t even make you feel ill much of the time.

•It won’t stop you doing anything.

•You can eat whatever you want.

•You can refuse food you don’t want and blame diabetes – nobody will dare argue.

•You’ll get free prescriptions for life.

•You’ll get regular health checks for life.

•You get some really cool techie stuff: pumps, meters etc.

•You can eat sweets and claim it’s a medical necessity. (it sometimes is)

•You can get out of a boring meeting by claiming your blood sugar is low/high.

•If you’re at school, you can jump the lunch queue.

•You will meet the most awesome people, your fellow diabetics.

I’m not just trying to make you feel better. I have lived with diabetes for almost 19 years, having been diagnosed out of the blue at the age of 40. Prior to that, I had been a fit and remarkably healthy individual. I still am. Diabetes caused a few weeks of adjustment, with some anxiety – more on the part of my family and friends than me, if the truth be told. But very soon after diagnosis, I resumed the busy and active life that I had always led, and I’ve just carried on that way.

Managing my condition is just a small part of personal care, no different from washing, shaving, going to the toilet, getting dressed etc. It fits around what I do just like those other life’s essentials do.

Diabetes doesn’t make your life any worse than it was before. It just adds a complication, like so many other complications that life throws at you at various stages.

But it gets better than that. You might find this hard to believe, but I genuinely believe that diabetes has enriched my life, developed me as a person, given me some of the loveliest friends I could wish for and is a whole lot of fun.

Let me explain. It’s all thanks to the internet and social media, so only in the more recent years of my life with diabetes. Once we in the UK realised that there were other people with diabetes out there, it suddenly dawned on a lot of us that the very randomness of diabetes makes a delightfully random community of people, whose different lives, ages and circumstances are all over-ridden by one big thing that we have in common – diabetes. It’s called the GBDOC (Great Britain Online Diabetic Community) and there are variants in many other countries. It’s a guarantee of friendship and mutual support which is truly life-affirming, and is used by people with diabetes as well as parents of children with diabetes. The good thing is we don’t even talk about diabetes all the time, yet we know we have that in common. We’re just friends.

So I have one big piece of advice for anyone diagnosed with diabetes or whose child is diagnosed with diabetes: find someone else out there who knows what it’s all about and connect with them. A problem shared is a problem halved? Well, as far as I’m concerned, a “problem” shared stops being a problem and becomes a source of friendship, support, fun and much laughter.

Live long and bolus!

Adrian

Born 1957

Diagnosed Type One Diabetes 1997

Still thriving 2016

We all stand together

This is my post for World Diabetes Day, and in keeping with my silly habit of using song titles for post titles, I have chosen a title from what many consider to be one of Paul McCartney's most forgettable ditties, We All Stand Together 

For what it's worth, I actually rather like this much-maligned song, and always did. And the cartoon is wonderful. Was it really 31 years ago? Yep, it was the autumn of 1984. Where did those years go?

Well, 31 years ago I was still 13 years from being diagnosed with diabetes. You never know what life has in store for you....

I told my diagnosis story in a previous post, so for this one I wanted to reflect a little on how things have changed in the almost 18 years that I have lived with the condition. 18 years is a long time: some of my friends from the online diabetes community, the GBDOC, were babes in arms when I fell victim to diabetes, a fact which also raises the  "you never know what's in store" thought.

I recently came across a book I bought at the time of diagnosis, gathering dust on a shelf by my bed, totally superseded by the wealth of information that's a click away on the internet. The book, entitled Diabetes, The Complete Guide and "recommended by the British Diabetic Association" was just about all I had other than information and leaflets from the hospital, and armed with it I set about rebuilding my life with my new friend and companion D. Looking at it now, it somehow seems older than it is.

Whilst I was never one to bury my head in the sand and refuse to discuss my condition, for most of the subsequent years, I lived pretty much alone with diabetes. Of course my immediate family had to get used to it and learn all about it (at the time of diagnosis, my children were 12, 10 and 7), and as a teacher I always made a point of talking to my pupils about it, but beyond that I didn't really want to talk about diabetes. My hospital clinic visits suggested that my fellow sufferers were  mainly elderly, large and suffering from varying degrees of infirmity. I used to sit at clinic in my work suit, shirt and tie surrounded by people whom I knew to have diabetes, but with whom I appeared to have little in common. Sorry, I've got to say it - I assume that they were mainly Type 2, and as a Type 1, I felt very different, and when I saw the consultant, he seemed to relish the fact that I seemed healthy and well. We would  chat about my work, football, life, the universe and everything...then at the end of the appointment, he would congratulate me on my good control, and off I'd go.

I joined what was then called the British Diabetic Association, which was shortly to be re-branded Diabetes UK, and their regional group pestered me for a bit with invitations to "support groups" in my area, but I was already busy enough at work without yet more evening meetings, and I didn't fancy spending even more time with the sort of people with whom I had to share a hospital waiting room. So as regards diabetes, I just kept myself to myself, most of the time, thankfully, with no major problems.

In the year of my diagnosis, computers in general and the internet in particular were still largely the province of nerds. I think that we acquired our first internet-connected family computer in early 1998, and we were fairly ahead of the game. We watched enthralled as that weird dial-up noise heralded the gradual appearance of.....a web page. Wow! We were thrilled to send, and even receive, these cool things called emails, some of them even with pictures attached.


But the internet was still really just a giant encyclopaedia,  and certainly not a means of communication. It's easy to forget how unconnected we all were just 18 years ago. I had got my first mobile phone in early 1997, and was regarded by friends as rather extravagant for having what was seen as a toy for businessmen. Texting was still unheard of.

But as we all now know, we were on the verge of unprecedented access to digital media, meaning that in little more than a decade, we all acquired not just the one family desktop PC, but very soon reached the stage where most families had use of several internet-connected devices, which were quickly to become our constant companions. That, surely, is the biggest and most significant change in how we live our lives from my lifetime, and it has all happened in the past 18 years or so. We are now all connected, via our phones, tablets and whatever else comes along, not just to the world, but most significantly, to each other. How did we ever manage before we could text our loved ones after even the simplest of journeys to say we've arrived safely? How did we arrange to meet up with our friends? What did we do when travelling by bus or train, when waiting at a bus stop or in any sort of queue? I recently had a conversation with an elderly lady who was next to me in a queue for diabetic eye screening. She had watched me for a bit as I scrolled through my Twitter feed and posted some sort of trivial observation and then, without a shred of disapproval or jealousy, said how she would love to have a clever phone like that and do what I was doing. I immediately stopped looking at my phone and had a nice chat with her, in which I tried to reassure her that there was nothing difficult about using a computer or a "clever" phone, and that there were courses to help people like her get onto the internet and learn to use a Smartphone. This conversation made me think, though, how lucky we are to be so connected, and what a boon this may be to my generation as we grow old. Surely, the care homes of the not-too-distant future will be full of old people sitting around in armchairs scrolling through social media and perhaps, as a result, feeling less isolated?

Because that, for me, is what social media has done for my relationship with diabetes. It has ended my sense of isolation. I honestly can't remember how and when I first saw something about diabetes on Twitter. I know I joined in June 2011 because my profile says so, but it wasn't until sometime later that I must have, somehow, stumbled across the GBDOC. I suspect I just typed the word "diabetes" as a search term.

What I know is that, thanks to Twitter and the GBDOC, I suddenly "met" lots of other people with diabetes, and lo and behold, they were just a random cross-section of society: young and not-so-young (not so many old, I have to say), male and female, every profession, every nationality even, all with one thing in common: an annoying and ever-present medical condition. The community has grown and prospered because it works not just for its main and stated purpose - to share information, ideas and experiences of living with diabetes - but also just as a group of friends. 

As I have observed elsewhere, the GBDOC is wonderfully and completely blind to status, age, gender, sexuality, ethnicity, nationality and anything else that potentially divides us. The most active members not only help and support each other with their diabetes, but also share much about all aspects of their lives. Pets seem to be a particular obsession, but there is always much more besides. In a recent Friday evening chat with some GBDOC twitter friends we likened it to a virtual pub, as we each sat at home with a well-deserved after-work glass of wine. What a lovely idea for the 21st century - a virtual pub where you chat to your friends from the comfort of your own armchair without worrying about what you look like, the noise from the jukebox or who is going to drive home! (yes, I know we shouldn't take that concept too far, or we'd never go out anywhere!)

More seriously, it is through the GBDOC that I have genuinely learned more about diabetes than I ever learned from healthcare professionals. I discovered the life-changing FreestyleLibre through the GBDOC, and as I am lucky enough to afford it, I have been able to monitor much better than ever before my blood glucose levels, leading to a sharp fall of my HBa1C at my last review.

I took great delight in telling my doctor about the Libre, which he had never heard of! So there you have it - the GBDOC knows more than a diabetes specialist GP! I have subsequently been the subject of a filmed advert for the FreeStyleLibre after the makers had seen me tweeting about it. Click on the link below to watch it:-

Adrian's Story

But what really makes the GBDOC community work is the fact that collectively, there is a clear intuitive understanding that there is so much more to our lives than diabetes. I met GBDOC friends in real life at the conference they organised in March 2015, and will do so again next year and it was great to discover that they were all remarkably like what their Twitter persona portrayed - friendly, open and supportive people. It was a memorable day.


However, we don't just spend time feeling sorry for ourselves about diabetes; we have become a community of friends. For example I met up with a fellow diabetic who follows a rival football team, Derby County, when they came to play my team, Bolton Wanderers.

We posted a lovely picture of ourselves, dressed in rival replica shirts but united by a medical condition.

I have also given professional advice in my area of expertise (university entrance) to GBDOC friends; and I lose count of the number of times I have seen or posted stories and pictures about pets belonging to me and my fellow diabetics. 

So as we mark World Diabetes Day, I want to say thank you to one or two people: the most obvious one is to the man whose birthday is now World Diabetes Day, Sir Frederick Banting, whose development of insulin therapy means that we are all alive and well. But secondly, to Professor Sir Tim Berners-Lee, whose invention of the world wide web, which he gifted to mankind rather than trying to make money from it, means that I can give, receive and enjoy the help, support and friendship of the GBDOC. 

Of course, we must also thank Paul Buchanan, founder of the GBDOC, for his initiative and ingenuity.

But above all, my thanks and love go out to all those friends on the GBDOC for their support and friendship. We do indeed All Stand Together.