Sunday 8 November 2015

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I recently came across a book I bought at the time of diagnosis, gathering dust on a shelf by my bed, totally superseded by the wealth of information that's a click away on the internet.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:-

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.

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