We Are(n't) Family

You know sometimes there are incidents whose significance doesn’t dawn on you until you reflect on them in a quiet place on your own some time later?

Well I had one of those this last Friday, April 27^th 2018.

I had enjoyed a lovely evening of food and chatter with three friends at a restaurant near Victoria Station in London. There was me, Ellie, Steph and Izzy. We had spent the evening eating, drinking and chatting - nay gossiping - and laughing, and the time had come to pay the bill. Cue further laughter and chit-chat as we tried to work out who had eaten and drunk what. Our waitress for the evening had done a good job in striking the balance between efficient service and friendly banter, without being too intrusive, but when we were about to leave she couldn’t resist the temptation to ask: what was the connection between the four of us?

I guess most groups in a restaurant on a Friday evening are easy to read - intimate couples, celebrating families, boisterous work colleagues - but she clearly couldn’t work us out. “Have a guess”, I said, and her unconvincing guesses included father and three daughters, a boss and his employees: both basically saying “old guy with young women” But she had to give up, and was then visibly struck when we said that we were just friends from different parts of the country who share a medical condition.

All very obvious really, but the more I think about it the more it serves as yet another reminder of what a precious thing the diabetes peer support network known as the #GBDOC is. To a muggle like that waitress, it is clearly puzzling to see the likes of me socialising with the likes of Ellie, Steph and Izzy. Whereas to us, it’s just, well, what we do.

And of course that was just the start of it. The four of us were gathering for a weekend centred around the third TADtalk event, a day-long meet-up of people with diabetes organised by an endocrinologist from Portsmouth who happens to believe - passionately - in the power of connectivity among those who share a condition and those who help them to live well with it.

I, and many others have written and spoken about the power of peer support before, so in that sense this post is repetition of, or at least a variation on, a familiar theme. However, every time I meet with my fellow diabetics in groups large or small, every time I exchange easy banter with them on Twitter, I am reminded just how precious this phenomenon has become to me and to many others.

I will not describe the TADtalk event in detail, as others have already done it better than I can in tweets, or for example in this post by the organiser, but I will just remind myself and others that I have the good fortune to be part of something very special. As I adjust to retirement from a long career in a people centred job in which I was surrounded and kept young at heart by some wonderful young people, I now find myself surrounded - often virtually, but sometimes literally – by dozens of friends who have nothing else in common other than a pesky, 24/7, potentially life threatening medical condition. We are young and not-so-young, female and male, rich and poor, shy and extrovert, gay and straight, black and white, religious and secular. In short, we are people. The thing about Type One diabetes is it does not discriminate. So neither do we.

And the point is really this: with most of these people, I hardly ever talk about diabetes these days. Of course if the need and occasion arises, they are a wonderful, wise and well-informed source of information and support about every aspect of living with diabetes. But above all, we are just friends who chat, laugh and cry together like friends do. Or perhaps more accurately, like families do. Because for me, that is how the GBDOC feels, and I make no apologies if this sounds cheesy in the afterglow of such a fun weekend. We are indeed an extended family, and like any family we sometimes fall out, we sometimes bicker, but in the end we know that blood sugar is thicker than water.

As Sister Sledge put it: We Are Family, and I for one am grateful that I have "got all my sisters, brothers, aunts, uncles, cousins and whoever with me."

This post comes with my thanks and greetings to all these #FacesOfGBDoc both those who were present last weekend and those who were unable to join in. Here they are - an update to this picture will be posted on Twitter when I have added all later additions to this picture:

I'll be There for You

2017 has certainly been a significant year for me. Full retirement and a house move are pretty big events, so the year hasn’t exactly been quiet. Indeed I feel well and truly shaken out of any sense of drift or complacency, and grateful that I’ve been able to make these significant changes in my life at a time of my choosing, and with enough physical and mental energy to embrace them as new challenges rather than feeling “put out to grass”. I am certainly not daunted by having turned 60 - I have a nice sense of entering a new phase of life.

I never planned it this way, but I have to say that my relatively recent discovery of the online diabetes community has been a tremendous help in enabling me to feel re-invigorated and re-energised at this time of my life. I thought it appropriate to post some thoughts on this informal peer support community to mark a notable milestone in my life with Type One diabetes.

It’s twenty years on December 19th since I was diagnosed with the condition (an incorrect diagnosis of Type Two in the first instance - I've told that story here), shortly after the landmark birthday of 40 years. Of course that has to go down as a big negative in my life: developing an incurable, life-changing and potentially life-threatening medical condition at around the halfway point of a typical lifespan is not what anyone would choose for a happy and contented life.

Yet when I think about what I have done this past year alone, it is hard to avoid thinking that my life might now be rather dull without diabetes. I know that there are people out there who resent positivity about diabetes, so let me apologise to them, acknowledge how lucky I am to be able to live well with the condition, and ask that we accept that everyone has their own way of dealing with what happens to them. My own approach is, and always has been, to look for silver linings. And getting to know so many others who have, or live with people who have, diabetes has certainly been a silver lining for me. Some of the greetings I received from diabuddies via Twitter on my 60th birthday were wonderful, so thank you - you know who you are.

In 2017, diabetes has given me opportunities and experiences which have filled the potential void caused by retirement from a busy people-centred job: speaking engagements at #TADtalk2017, at the FreeStyle Libre factory, at the All-Party Parliamentary Group at Westminster and live on Breakfast TV would all have seemed like bizarre dreams a few years ago. And then there’s the real-world meet-ups: this year alone, I have spent lovely times in groups large or small in Oxford, Manchester, Amsterdam, Witney, Bakewell, London and Birmingham with friends from all over the UK and beyond, who were in all cases complete strangers until very recently. And most days I spend time on Twitter in conversation, sometimes serious, sometimes frivolous, with others all over world whose only connection with me is a shared medical condition. My horizons have expanded immeasurably thanks to an annoying and sometimes dangerous medical condition.

Yet it hasn’t been all sweetness and light. Wherever two or three gather together, they will disagree about something, and the diabetes community is no exception to that. It’s human nature, after all. The online community hasn’t been the happiest of places at times this year, and I have found myself the subject of some hostility, in particular over two issues:

Firstly, it became apparent in July that there was significant controversy and lack of confidence surrounding the so-called GBDOC and its founder and hitherto de facto leader. With trust in the brand and its weekly tweetchats severely eroded, I found myself as one of a well-meaning group of people who attempted to guide the community into a more collective and inclusive ownership, rather than being a mouthpiece for one individual. Although our moves were widely accepted, appreciated and recognised they nevertheless caused a degree of resentment in some quarters and unwarranted accusations of a “takeover”. 

Those who felt so threatened by this appeared not to acknowledge that nothing happens in a group large or small without someone taking the initiative, and that taking the initiative does not necessarily imply power grabbing or ego tripping. I hope that the continued existence of a warmly supportive GBDOC community and of weekly tweetchats under the community account @GBdocTChost led by volunteer hosts serves as powerful reassurance to those who feared a takeover. I would like publicly to thank in particular @Jules1315 @type1bri and  @Type1Adventures for their work in ensuring that this happened and continues to happen. Public-spirited, generous-minded and supportive individuals every one of them.

Then secondly came another source of controversy sparked by the decision in September by the NHS to add FreeStyle Libre sensors to the approved tariff for free availability on prescription. Although this development was the result of many months of hard work by groups and individuals, notably our very own NHS Sugar Doc @parthaskar, I was inevitably associated with the decision given my longstanding public endorsement of the Libre, my consequent attendance at events run by its manufacturers Abbott, my speaking to a parliamentary committee about it and my TV appearance on the day of the announcement. Understandably, I again felt the resentment of those unhappy with the decision, and even found myself and others accused, laughably, of “taking payment in little brown envelopes” from the manufacturers.

With some folks fearing that availability of the Libre on prescription would lead to reduced availability of CGM and other diabetes technology, or criticising the fact that Abbott have a monopoly on flash glucose monitoring, or unhappy that NHS availability was leading to delays in supplies for those still self-funding, and valid concerns arising with the use-by dates on sensors, it seemed for a while as if the funded availability of a new device which had been so very helpful to so many, including me, was the work of the Devil himself. And as so often in life, the quietly contented were drowned out by the noisily disgruntled, which must have been disheartening for those who had worked so hard to make it happen. The Libre, like insulin pumps, like CGM, is not for everyone, but at least we are moving towards a situation whereby it should be available to all, regardless of ability to pay. Had social media been around at the time, I am quite sure that some might have been equally angry about the first insulin pens, pumps and meters. Change of any kind is seldom universally welcomed.

Again, however, as time has passed and things settled down, more positive voices have come to the fore, and we reach the year’s end with the online diabetes community very much alive and well. My hope for 2018 and my next 20 years of living with diabetes is that people will come to accept that differences of opinion, factions and groupings are an inevitable part of any group of people. The wonderful thing about the GBDOC is that the very randomness of diabetes produces an online community which is by definition random (albeit including only those who use social media). So it would be a pretty odd, and frankly dull place if we all agreed about everything.

Other groups of which I am part consist of very differing people, some of whom I like a lot, some of whom I am indifferent to, and some of whom I disagree with. But that doesn’t mean I necessarily want or need to criticise those with whom I don't get on; indeed I have massive respect for those whose opinion differs from mine on all sorts of issues. In the real world, I just sit in a different part of the room from those with whom I differ significantly, and the GBDOC rightly consists of people who sit in different corners of the virtual room. I tend to “sit” with those who actually don't talk about diabetes that much. I just like having friends who “get it”, and I enjoy talking to them about other areas of mutual interest, with the comforting feeling that I am hanging out with folk who have such a big thing in common with me. It is a joy to me to share cat pictures or things like this year's #BaublesOfGBDoc with a group.

But we all use #gbdoc in different ways and rightly so: some talk enthusiastically on social media about pumps, ratios, doses, CGMs, closed loop systems etc, and I admire them for it and enjoy their enthusiasm and expertise.  But it’s not for me. Others use social media as an outlet for their woes and frustrations, and whilst I don't tend to do that, I do try to be a virtual shoulder to cry on and greatly value that opportunity. Some, including me, post images of their triumphs and I for one derive great pleasure from seeing other peoples' success. There's a word for it: confelicity. It saddens me when I read suggestions that to do this is selfish because it causes distress to others: nobody forces anyone to be on social media, and there’s always a mute button if others’ way of saying and doing things causes stress or offence.

When push comes to shove, we are all on the same side and it is a constant pleasure to me to see such a diverse group of people being a real source of company, friendship and support to others. It’s what friends do; as the theme song says I’ll be there for you. And I for one am glad that so many others are there for each other and for me. 

Here's to the next 20 years. 

Don't Dream It's Over

Click on any text in bold colour to link to a website, Twitter account or a song

Don't Dream it's over. Sadly, it is. I'm starting this account of a wonderful weekend in Amsterdam on the day after I returned, and as always after any fun weekend, I am moping around on a Monday morning wishing it was Friday again. I had a fabulous weekend of friendship, inspiration and education at #DXAmsterdam, the third European diabetes bloggers' conference on June 16 - 18 2017.

  

The contents of my suitcase and backpack lie strewn all over the bedroom floor, and whilst the clothes are quickly sorted and put to the wash, every leaflet, wrapper and receipt that falls out of my backpack tells a story, a story of a weekend which once again matched, nay exceeded, the feverish excitement that it generated among those of us lucky enough to be there. 

The theme of the conference was dreams: following them, chasing them, living them, and to be honest, the whole weekend seems like a dream now. A nice dream that you don't want to wake up from. Don’t Dream it’s over is the song title I’ve chosen for this post: an enigmatic masterpiece by the wonderful Crowded House which is over 30 years old – how did that happen? But more importantly, did #DXAmsterdam really happen? I certainly wouldn’t have believed even five years ago, let alone 20 years ago when I was diagnosed with Type One diabetes, that this medical condition would lead me, shortly before my sixtieth birthday, to spend a weekend with a group of young friends from all over Europe who share my condition, having fun, bonding and learning. It was like a dream. 

But it did happen – and my phone holds the proof: It started with a tweet, or rather a veritable TwitterStorm: 

I had known that a third DX was likely to happen, and as a previous participant who had continued to blog and tweet, I felt that I was in with a chance of being invited. But as April came and went, and the anniversary of the two previous weekends approached, I thought maybe not this time. Fair enough. I'd had my turn with #DXStockholm in 2016. Then in mid-May, an email from Abbott landed in a number of inboxes, including mine, explaining that in view of the increased number of Libre-using countries, we were invited to apply for the seven places for UK bloggers, and that a draw would take place if too many applied.
  

Amidst much speculation over who and how many had received the invitation, I spoke with my good friends Lydia and Ellie, whom I knew had been invited, and we three agreed to reply immediately  and enthusiastically and hope for the best. The reply we received indicated that a draw would probably have to take place, and said we would hear back after that date. It was a Monday, 15 May. 

Monday came and went. No email. We'd agreed to share news if any one of the three of us heard, so we knew that either none of us had got lucky, or they hadn't drawn it yet.

  

We spent Tuesday in intermittent Twitter DM contact hoping to be put out of our misery soon. Then in the late afternoon, I was driving home with my phone in my back pocket, where it sits to make sure I’m not tempted to use it while driving. Suddenly I felt not just one, but a whole series of vibrations, that familiar sign that something is going on with your Twitter feed. I got home, took out my phone, to be greeted with this excited exchange on the DM group of me, Ellie and Lydia:- 

I nervously opened my emails, and there it was, the same email, just received. So the DM conversation continued:- 

I think it's apparent that we were just a tad excited....and I'm old enough to know better.

Five weeks later, I was at Leeds-Bradford Airport at 5am to meet up with my two friends and travelling companions. Airports at 5am are strange places where you quickly lose all sense of time. You're plunged into a fully up-and-running workaday world at an hour when you're normally still in bed. We made our way through security and were soon boarding the strikingly small Embraer aircraft which plies the Cityhopper route to Amsterdam.

It’s at that moment that the surreal and dream-like nature of the experience takes hold. Your other life fades into the background, and boarding a plane takes on the feeling of entering some kind of surreal parallel existence. What series of events and decisions in our otherwise unrelated lives had brought us three to those aircraft steps? And all over Europe, others were doing the same.

Three travellers with nothing in common except duff beta cells

A smooth 55 minute flight later (although Ellie will take some convincing that any flight is smooth or easy, and was very glad to have the company of her diabuddies on the plane) and we landed at Schiphol, a bewilderingly large hub compared to the provincial airport we'd flown from. From there, a fast train to Amsterdam Central and we were soon stepping out into the city of bikes, bridges and boats. 

The fabulous Hoxton Hotel

We made our way to the wonderful Hoxton Hotel, away from the tourist throng and checked in, relieving ourselves of our suitcases, then set out to make the most of our bonus morning in Amsterdam. It's one of those places that just delivers: canals, humpback bridges, narrow houses with pointy roofs, bikes ridden by people of all ages, shapes and sizes and the unmistakable aroma of wacky baccy. We strolled the streets, taking in the assault on the senses that is Amsterdam. But like Bill Clinton, we didn't inhale. 

Ellie and I showed our true colours as crazy cat people, leading to this memorable scene: These two pictures were taken at the same time. Look at Lydia's horrified face in the right hand picture if you want a picture of embarrassment personified. "I am not with these two, honestly!" The cat, being a cat, was totally unmoved.

Feeling fully in tune with the spirit of Amsterdam having seen some - ahem - interesting sights, we returned to our hotel and its quirkily luxurious rooms, before making our way down to the lobby to meet up with our diabetic friends old and new.

Before we'd had a chance to say more than a quick hello, we were bundled into a fleet of taxis in small groups to be taken to the starting point for a bike tour of the city. It felt like being in a gangster movie, as a rather large and very grumpy taxi driver sped across the city to the bike hire place. He clearly thought that nobody else had a right to be on the streets, honking his horn, gesturing furiously and making grunting noises (that may have been Dutch words) every time the taxi's speed dropped below breakneck. On reaching a traffic queue, he simply used the pavement as an extra lane, and at one point used several hundred metres of (fortunately empty) tram track to get ahead of a long line of queueing traffic before pushing in front of the first car in the queue.

With my whole life having flashed before me, he suddenly screeched to a halt, grunted, pointed at a shop front and flung open the doors. Ellie, Lydia, and a Spanish lady we’d never met tumbled out onto the pavement and fell to our knees in prayer for having been spared (ok, that last bit is a lie). 

We'd survived a plane journey and a taxi ride with a maniac. So in a third and final attempt to kill us, we were now taken on a long tour of the city on a fleet of bicycles. The shop owner half-heartedly offered us helmets, whilst making it clear that to accept the offer amounted to a personal affront,  and we set off on a tour which was, in fact, great. 

Preparing to cruise the mean streets of Amsterdam with Simon

Guided by an enthusiastic and knowledgeable leader named Simon, we zoomed along cycle paths, side streets, parks and even busy main streets, apparently having right of way every time except when we didn't. At one point an angry middle-aged Dutchwoman swept past on her bike with a volley of abuse about the dangers posed by tourists on bikes, and a few cars, vans and trams tried to wipe us out, but by and large we were fine. 

We reached the end of the afternoon intact, were presented with a card celebrating our survival and enjoyed a leisurely walk back to the hotel. Was the taxi ride and bike tour just a dream?


Showered, changed and rested, we gathered for the welcome and a talk by Matthjis, a Dutch blogger who runs a support group for young adults with diabetes in his country. His calm, measured manner was challenged by an angry Greek woman determined to hijack the agenda but the majority prevailed and he was able to deliver his address. We were then served a buffet meal which was rather light and somewhat lacking in carbohydrates, so four of us sneaked away for a McDonalds. Not before we'd captured the obligatory bridge selfie: Suitably fed and watered, we all retired to bed. 

Saturday was spent in conference at the Cristofori Concert Hall, in a room full of inspirational messages lit by a spider made of angle-poise lamps:

Angle poise spider

We were inspired by the utterly awesome para-athlete Claire Lomas, baffled by a team of life coaches who gave us all a pair of plastic ducklings, puzzled by a strangely distant Type 1 astronaut, charmed by a professional photographer who shared tips on capturing Amsterdam on film on an idyllic canalside stroll and intrigued by the latest data on #FreeStyle Libre from Abbott's team of boffins. A varied, enjoyable day's programme with plenty of time for interaction with our fellow bloggers.

A photography lesson

Another stroll in the sun, a couple of hours' chill-out in our rooms, then a well scrubbed-up party made for the lively Van Puffelen restaurant for a delicious meal and much conversation. I spent the time trying to assure new friends from across Europe that the UK had not suffered a complete collective loss of sense in successive elections and a referendum. I failed to convince myself, let alone them. 

We strolled back through the streets, relaxed and inviting on an increasingly balmy summer evening, pausing for the ultimate #DiabetesWithoutFrontiers selfie: 

An Englishman, two Russians and a Turk

I then enjoyed a sustained and enlightening conversation with Saidat, a native of Dagastan in Southern Russia, born under Soviet rule and now living in Frankfurt and working for Abbott. Another moment that had me thinking: is this a dream, and if not, how did I come to be here? I was sitting on the terrace of a canalside bar in Amsterdam at midnight, hearing first-hand stories of glasnost and perestroika from one who had experienced it. And all because I chose to start talking about diabetes online about four years ago. 

Sunday started with a much-anticipated Brit-breakfast, with the seven UK bloggers in secretive conclave with Neil Harris and Ollie Mitchell from Abbott UK for an update on the long and protracted process of achieving NHS listed status for FreeStyle Libre sensors, thereby removing the £100 monthly charge. Their candid and thorough insight proved most useful and reassuring, and the full English breakfast was impeccable in every detail. 

The British delegates

We were then bussed to a hotel and conference centre out in the Southern suburbs, where we were to take a guest slot in sessions of a “Quantified Self” conference: a strange but in many ways simple concept which could translate as “living by numbers”. After a very West-Coast icebreaker session led by a guy who looked like Gareth Southgate and spoke like Timothy Leary, we adjourned to workshop sessions on sleep, exercise and food and their effects on metabolism. At our session on sleep, it quickly became apparent to those leading the session that people with Type One who like us are engaged in their condition are experts in the mysterious workings of their bodies, and the conference experts were pleasingly keen to learn from us.

Quantitative Self boffins

And that was it. Time for warm embraces and sad farewells as we all realised that it was time to wake up from our dream and return to the real world. Even Maria the Greek had mellowed by now and embraced me warmly.

Me and Maria

We took a coach back to Schiphol, and the rest of the day then ran like a protracted So Long, Farewell from the Sound of Music, as one by one, people took their leave to board a different flight. In the end, there was just me, Ellie, Lydia and Dave Sowerby boarding the flight to Bradford.

So Long, Farewell at Schiphol

Another quick and uneventful flight (although Schiphol is so vast that it seemed as if we had taxied half the way home before the plane took off) and we were back on home soil. Farewells to Dave, then to Ellie and Lydia as their taxi arrived, left me, alone like little Gretl at the end of So Long, Farewell, facing a long lonely drive home. The sun was going to bed, and so must I. 

Don't Dream it's Over: but it is. A fabulous weekend in the ultimate diabubble, leaving all of us wanting more. DX2018? I Can dream, Can't I?

Disclaimer: I was invited to apply for DX Amsterdam, and selected by a random draw, by Abbott Healthcare, who paid for all travel, accommodation and subsistence expenses for me and other delegates. Opinions on the FreeStyle Libre Flash Glucose Monitoring System expressed by me are my own and not those of Abbott Healthcare.