Tuesday, 25 April 2017

I'm Still Standing

This is an adapted version of the talk I delivered on Saturday 22nd April, 2017 to #TADtalk2017, a day conference for people with diabetes organised by a group of specialist doctors and sponsored by diabetes charities and medical companies. The pictures are taken from the accompanying powerpoint. 

The title of my talk was Diabetes: Something or Nothing, but as it's one of my blog posts, it needs a song title. Elton John's I'm Still Standing fits the bill perfectly. It is, of course, an 80s classic with an iconic video starring a young Bruno Tonioli. But it's a brilliant diabetes song. Not only are the lyrics about resilience in the face of adversity, but it's musically subtle and very appropriate to diabetes: the melody switches from major in the verse to minor in the chorus, reflecting the everyday ups and downs, triumphs and disasters of life with diabetes.

My aim was to demonstrate that Type One diabetes, whilst a serious and burdensome condition, is no barrier to a busy, fulfilling and even fun life. I hope that by publishing it as a blog post I can enable those unable to attend the conference the chance to read it. The content is intended to be positive and good-humoured, but not deadly serious. In particular, I would not wish to insult the many people who find life with diabetes a physical and emotional burden for some or all of the time. I am well aware that having developed Type One at the age of 40, in otherwise good physical and mental health, I have had the good fortune to live well with diabetes. This is not always the case, and should not be taken for granted. Here is what I said to this large and diverse audience:-



Looking out at this audience, I can’t help but reflect on the unexpected turn that my life has taken in recent years. What am I doing here? I’m in a lecture theatre in London addressing an audience of people who were complete strangers to me, and indeed to each other, until fairly recently. Some of you I’ve already met, and some are people I’ve yet to meet, but many of you I “know” through Twitter - in my experience a remarkably accurate filter. So it’s great to meet you in the flesh. And yes, I’m Talking about diabetes.
 
Five years ago, Talking about Diabetes was the one thing I didn’t do unless strictly necessary. Nothing silly or deep-seatedly psychological. I wasn’t in denial, distress, burnout or anything like that; I was just too busy and had better things to do. I couldn’t be bothered with diabetes if the truth be told.
 
I had developed this serious, pesky but perfectly manageable condition at the age of 40, when I was in the prime of a very busy career as a teacher, fully involved in the life of a growing family of three children and in the life of the community in which we lived.



This photo is of me with my wife and family, taken the year before diagnosis, dressed in medieval costume to celebrate my town’s 700th anniversary of its royal charter. I was one of the organisers of a festival to mark the event. At that time, I was a conspicuously healthy adult on the brink of middle age, having barely troubled the NHS in almost forty years. A couple of childhood illnesses, a broken arm – that was about it. Diabetes struck me with almost no warning in the last month of 1997, a few weeks after my fortieth birthday, and whilst it was a shock suddenly to find myself as a vulnerable patient with a lot to learn, some complex needs and a lengthy repeat prescription list, I didn’t let it interfere with my life and work. 


My diagnosis is a story which I have told on social media, but for the benefit of those of you who don’t know, here, briefly, is the story:

It started with a very bad case of 'flu in the week running up to the 1997 Christmas break at school - a week's absence from work for the first time ever. No real cause for alarm: there was a big ‘flu epidemic and a number of colleagues were off at the same time, although I wasn’t used to being unwell. Then, on the last day of term, after I had started to feel better, my condition took a nosedive, and I went to my GP, alarmed at this apparent recurrence of a severe illness from which I had just recovered. (this was back in the days when you could phone the GP & get an appointment the same day). I felt tired, thirsty and run-down, but just thought it was a hangover from my first real illness in years and a long, hard term's work.
 
A urine test revealed very high blood sugar, and an alarmed GP (parent of three children whom I taught) informed me that she was pretty sure that it was diabetes, referring me to her colleague at the practice who was the specialist in diabetes.
 
Her colleague - stepfather of another pupil at my school (such is the venn diagram of life in a small town) - told me to "cut out sugary foods" and see if the blood sugar level fell. This puzzled me somewhat, as I have always had a famously "unsweet tooth"- there was little or nothing to cut down on. However, I agreed to try, and came back a few days later - just before Christmas - to discover that my sugar level was higher than ever. "OK, said the doctor, we'll put you on medication" He was assuming, from my age, that I was Type Two. Looking back, I have to say this was a highly questionable diagnosis in the face of all evidence - I was slim, ate healthily and exercised plenty - but again, I went along with it and took the pills for a few days (including Christmas Day). This was pre-internet, pre-google, so I knew next to nothing about diabetes, the different types and so on.
 
It was only when I reported back after Christmas with an even higher blood sugar level and no sign of feeling better that he finally wondered if it might be late-onset Type One. I was told this was exceptionally rare at my age. Off to hospital I went (only as an out-patient), where a consultant confirmed it was Type One, and referred me to the clinic to learn the noble arts of injection and blood testing.
 
I did all this without missing any days off work, despite feeling very tired. Once the insulin started to have an effect (and that effect comes on almost instantly, as anyone with Type One will tell you), I was soon back to normal.
 
I wasn’t trying to be stoical or heroic: it’s just the way I am. I don’t like a fuss – it’s a lifelong and sometimes annoying habit which was already in me as a toddler: my late mother used to tell a tale of me at the age of about three, getting trapped under a fully loaded clothes horse which she had seen fall over without realising I was under it. She was busy doing something else at the time, so she finished what she was doing before attempting to pick it up. Only then did she discover that I had been lying under it for about 5 minutes, trapped by its weight but not injured. Apparently, I said, in so many words, that I was fine and thought she was busy so “didn’t want to bother her”. When I was thirteen, I fell off my bike and broke my arm but failed to tell anyone for about a week, until my nearly-blind grandmother noticed that my arm was an odd shape. 


A worringly pretty boy with a broken arm

Likewise as an adult, I didn’t want to make a fuss about getting diabetes. I simply learned to inject, test etc. and got back to work just as before. Three months after diagnosis, I led a group of forty kids and five teachers on a residential school trip to France, just as I had been doing for many years.



And I certainly didn’t want to “talk about diabetes”. I didn’t know anyone else with the condition, and didn’t go out of my way to meet anyone else with it. Just about the only fellow Type One diabetic I met in my first sixteen years of it was when a pupil joined my school having just developed Type One at the age of ten. I was more than happy to meet her and her mum and offer the reassurance of being someone in the school who knew what it was all about. Whilst I never actually taught the girl, I used to see her around the place for a friendly word, sharing biscuits and jelly babies when she was caught short after a games lesson or occasionally standing in when the School Nurse wasn’t free to supervise her injections, but my involvement went no further than that.
 
But then this little blue bird came into my life 




I was relatively late to social media, despite being an early internet enthusiast, and I have still not joined Facebook. I remain to be convinced of it. Twitter, however, appealed to me because of the conciseness of 140 characters and the chance to follow and occasionally interact with people I didn’t know, rather than just seeing the minutiae of the lives of people I already know or used to know. I started out on Twitter as a follower rather than a person seeking followers, and had no wish or intention of using it as a means to make new contacts or to communicate with others. I like this visual summary of the differences:-
 
 
 

However, at some point, as I was getting to know how hashtags work, I must have tried looking for #diabetes and started to come across the world of the #GBDOC. At first, I was what we now call a lurker - someone who watches, likes, but doesn’t say anything. In real life, I always prefer to feel my way into any group rather than speaking too soon, so my behaviour in the online world was guided by that principle. Eventually, however, when I had got the feel of what people say, I started to chip in. 

Ellie Huckle - my first #diabuddy

I recently checked my Twitter archive (did you know you can request it – great way to waste a few hours) to try and find out my first interactions about diabetes and found that it was on November 28th 2013 that I first had a conversation with someone else with diabetes, and that someone was the already established blogger and tweeter, Ellie Huckle. She’s here today – my original diabuddy, one of my diabetes heroes, and I find that very appropriate
 

These days I am a something of a Twitterholic, and many of those whom I follow, or who follow me, are people with diabetes – including many in this audience. 

If you do follow me, I hope you will recognise that I try to avoid too much talking about diabetes. I prefer to talk about cats or Bolton Wanderers. Of course diabetes is the reason that we know each other, but I am wary of becoming a dia-bore who just talks diabollocks. I have a short attention span and a diversive butterfly brain, so I try to reflect that in my tweeting and blogging.

Cats of GBDoc - one of the ways I try to avoid Talking about Diabetes
But I have certainly morphed into someone who is more than happy to “talk about diabetes”

So is it worth Talking about Diabetes? Is it something or nothing? Let’s see. Well, nobody here really needs reminding that diabetes is quite something, quite a big deal in our lives. It’s with us 24/7, 365/365, for life. We can never forget it for more than a few minutes – it’s a monkey on our backs – or more like a whole troop of monkeys. 


I recently attended an in-service training event for teachers about supporting children with diabetes, and although most of the content had me quietly snoozing, I was very struck by a statistic which the presenter quoted, saying that a child with Type One has, on average, 27 extra thought processes before they even get to school each day. 27?



It isn’t easy living by numbers, and in that sense diabetes is quite something. For me personally, it’s become even more of a thing since I started taking more of an interest in it. Thinking back to 2013, and my first tentative steps on Twitter, it’s remarkable that I now have what is in effect a second life thanks to diabetes. I’ve been styled as an unofficial Mr FreeStyleLibre thanks to my online enthusiasm for Abbott’s flash glucose monitoring system, and they even made a film about my use of it.
 
I sometimes worry that I over-do the FreeStyleLibre enthusiasm, but I honestly have found it awesomely helpful and I am very aware that I am lucky that I can afford it. Years before it was invented, I remember my wife saying that what you really need is a device to tell you in which direction your blood glucose is heading. For that and that alone the Libre is a winner for me.
 
Thanks to diabetes and my Libre enthusiasm, I’ve opened up a whole new life. I’ve visited Sweden for a conference with fellow diabetics from all over Europe, and I’m due to lead a training session for Abbott at their labs in Witney in summer. And I’ve made hundreds of new friends - people whose paths would never have crossed mine without our shared affliction. In getting to know them, I’ve gained new insights not only into my own condition, but also into the lives of those who, unlike me, live with a whole lot more besides diabetes: adolescence, hormones, pregnancy, parenthood, depression, chronic fatigue, sight loss, Addisons, Aspergers, anxiety and much more besides. These are my diaheroes, and for them - and indeed me - diabetes really is quite something. 

Some of my lovely diabuddies - every one a stranger until recently
And yet in many ways, diabetes is really nothing.
 
I was recently asked by a Twitter friend in Australia, mother of a teenager with Type One to contribute a “letter of hope” for a project she was setting up for newly diagnosed young people and their families. She reckoned there was too much negativity in what she and her son get from healthcare professionals. I enjoyed doing this, as it tapped into my instinctive positivity. I came up with a dozen points about living with diabetes which are at worst no big problem and at best an actual bonus.
Here they are:-
It won’t kill you.
• It won’t even make you feel ill a lot of the time.
• It won’t stop you doing anything.
• You can eat whatever you want.
• You can refuse food you don’t like and blame diabetes – nobody will dare argue.
• You’ll get free prescriptions for life.
• You’ll get regular health checks for life, potentially ending up healthier.
• You get some really cool techie stuff to play with: pumps, meters etc.
• You can eat sweets and claim it’s a medical necessity. (it often 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 some awesome and lovely people, your fellow diabetics.
 
I’m sure you all recognise many of those. A dozen reasons why diabetes really is nothing, certainly nothing to worry about.
 
I genuinely think that the past nineteen years with diabetes, and especially the last five, have not only failed to stop me from doing anything, but have also enriched my life and made me a more interesting, and more importantly, interested person. And compared to the contacts and positives that have come from my life with diabetes, the condition is, well, really nothing.
 
So is diabetes Something or nothing?
 
Well, I’m a Libre wearing Libra, always inclined to see both sides of an argument. So d’you know what, I’m going to chicken out of an answer.
 
Is diabetes something or nothing? Well for me, it’s both. Not something or nothing, but something AND nothing.

Sunday, 23 April 2017

Fame: My weekend at #TADtalk2017

I'm writing this as my Virgin Pendelino train speeds northwards, taking me home from a weekend in London, where I enjoyed the honour of being an invited speaker at #TADtalk2017, a wonderful day conference for people with diabetes organised by our very own Dr Partha Kar, a thoroughly modern consultant who has done so much for us.

I've been scrolling through a seemingly endless roll of tweets from people who attended, all saying nice things about the speeches made by me and five other people for whom Type One diabetes is part of their lives. 

There's something truly uplifting about knowing that some carefully chosen words and a few Powerpoint slides have been enjoyed and appreciated. Thank you to everyone who took the trouble to comment, either online or in person. And I managed to get the best selfie ever:


Compared to the other speakers, I was just a "humble peasant". I haven't run any marathons, cycled coast to coast, raised any money, led medical or nursing staff in the NHS or gained any sporting honours, and as such I felt a bit of a fraud as "just a bloke with diabetes who enjoys befriending and helping fellow diabetics". It was therefore a disconcerting tiny taste of what it must be like to be famous to find myself recognised by people whom I didn't knowingly know, and to be filmed, photographed, and publically thanked for doing something which comes fairly naturally to me: public speaking. The online diabetic community is of course, only a few hundred in number, but I guess because I use my real name and a clear photo on Twitter I am pretty recognisable, and for one day I felt like a minor celebrity.  But only a #diacelebrity. Fame: is it any wonder?

But that's very self-centred of me. The real point of #TADtalk2017 is to start a conversation and to enjoy each others' company, not to praise speakers, be they sporting heroes, nurses, doctors or even retired teachers. And my, did it do that! My Twitter timeline has never been so active. There really was something special in the air, as there is whenever we people with diabetes get together. I've said it before, but I won't stop saying it, even if that does make me a #diabore talking #diabollocks (my words).

The togetherness which springs from this chronic, all-pervading yet perfectly manageable condition has to be seen and experienced to be understood. It overrides literally everything: gender, age, status, occupation, tastes, interests, and anything else, leading to profound friendships based on nothing but a shared condition, and yet everything. Fellow diabetics feel like friends before I've even met them, and when I do meet them it feels like I've known them forever. I count among my best friends people who are a fraction of my age, live nowhere near me, have little or nothing else in common with me and whom I have only met once or twice. It's a diabetic thing, and if you're one of them and reading this, you know who you are.

So I owe a thousand thanks to @parthaskar and his team for putting on this event for us, to the sponsors @DiabetesUK @JDRFUK and @AbbottNews for supporting it and to all those #diabuddies for just being there. I sincerely hope there's a #TADtalk2018, and if there is, I'll be there applauding whoever gets asked to speak, as warmly as yesterday's audience applauded us.

And to think that four years ago, I had barely spoken to a fellow Type One. As the old BT ad used to say: "It’s good to talk". Long may the talking continue!

I shall post the content of my speech as an additional piece for those who were unable to attend, once I've had a chance to edit it into a more coherent piece of written work.

Thursday, 13 April 2017

Roll Away the Stone: Easter for sceptics

This is my attempt to give a rational, liberal Christian take on Easter, the festival which more than any other defines Christianity.

As is my silly habit, I've given it a title taken from a song: Roll Away the Stone, a wonderfully exhuberant piece of glam rock by Mott the Hoople from the gathering gloom of November 1973, has nothing to do with Easter, but works well as an Easter song. Read on, then click on the link above and enjoy the feelgood factor.

Easter is arguably the most difficult festival for Liberal Christians like me to observe. Celebrating Christmas is easy, especially if you ignore the “minor detail” of the paternity of Baby Jesus. It’s a story which demands no understanding other than that of the birth of a child, an event traditionally and easily seen as a cause for celebration. The appealing details of the tired refugee parents, the stable, the animals, the shepherds, the angels and the Wise Men are easy to depict as images, however much they are based on speculation, exaggeration or confabulation.

Holy Week and Easter are, however, different. Although there’s supposedly a happy ending, it’s not at all convincing to those of a rational and enquiring mind. 

The Crucifixion of Jesus of Nazareth, is all too easy to believe and imagine, and it is no surprise that its depiction is so central to Christian art in all its forms. We have all seen and heard enough of humankind’s capacity for evil to believe that a patently good man could be condemned to a death sentence by a fickle crowd, and that sentence carried out by a despotic occupying power.

The Resurrection is, however, so beyond our understanding, let alone our experience, that we find it hard to describe and depict. In the secular world we resort to the symbolism of eggs, bunnies and fluffy lambs, thereby turning Easter into a pagan celebration of springtime. The appeal of mainstream Christianity rests in large part on the promise of eternal life, and to a rational or cynical mind this can seem a lot like whistling in the dark. It’s a matter of having faith in a promise with no easy proof of its credibility.

For Liberal Christians like me, the challenge is arguably even greater: to recognise the reality of a living Christ without necessarily claiming he literally overcame life’s only certainty: death. And yet if we wish to give the Resurrection any meaning, it surely behoves us to explain to a sceptical world that the greatest truths are indeed invisible.

There are plenty of other things which are palpably real, yet invisible, just like the Risen Christ. Try any abstract noun for a start. Just because we can’t see something doesn’t mean it doesn’t exist. Or to quote a favourite line of mine from Saint Exupéry’s The Little Prince: “And now here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye.”

The Risen Christ, though invisible, is alive and well wherever we see good in our often evil world.

For more Easter-themed music, here's a Spotify playlist:

https://open.spotify.com/user/longar/playlist/0GT9AuWXdDHSakfiy0XoZy


Tuesday, 4 April 2017

Guest post: Football and diabetes, by one who knows

Rightly or wrongly, I've been keen since I started my blog (two years and 46 posts ago) to write about all the things that interest me, rather than just one theme or topic. I have varied interests and like to reflect that in what I write, even at the risk of being a "Jack of all trades and master of none". 

Football is a lifelong love of mine: I have followed my home town team, Bolton Wanderers, through their good times and bad since the days when I lived within walking distance of their Lowryesque old ground, Burnden Park, as a child. I was a keen but distinctly average player at school and university, the height of my career being a season playing for the second string of a small town club in rural France in the late 70s. I owe my fluency in spoken French as much to that year as to the three years of my degree course.

However, I have only written about football once on here when I wrote here about the decline and fall of Bolton Wanderers in 2015, so the chance to post a football-themed post had great appeal when I was contacted by Chris Bright, a GBDOC friend who has set up a sub-group on social media where football and diabetes are discussed. Chris asked if I could post his piece on diabetes and football and I am delighted to do so.

A recurring thought of mine since I started speaking with and  meeting other people with diabetes is my gratitude for the fact I lived the first 40 years of my life free of diabetes. With that thought comes an awareness that the challenges of life with diabetes at my age are nothing compared to those faced by infants, children, teenagers, and indeed their parents. In particular, the wish to play sport at any level, let alone a seriously compeitive one, brings with it many issues which could easily deter a would be sportsman or woman. Chris, like many others, was not deterred. Here's his story: 

I always viewed my diabetes as an extra hurdle to jump rather than a mountain to climb! I've worked incredibly hard all my life to achieve the things I have and I believe it’s time I tried to share some of my experience with people who go through the same struggles, or may go through those struggles in the future. 

I was diagnosed with type 1 diabetes in 1999 (at the age of 8) and upon diagnosis my very first question was "can I still play football?" Luckily I had an exceptional diabetes nurse who gave the answer I wanted, being "yes", but she readied me to ensure I knew how hard it would be to live out the dreams of playing football at the highest level. I’m sure I’m not alone in this first question, as in that incredibly scary moment when you know your life is changed forever, you just want reassurance that you can still live out those childhood dreams. I think healthcare professionals need to ensure they know how important these first words to a child are when diagnosed with a life changing medical condition. They can quite literally be life determining.
  
From that moment I had choice: I could crumble and let the daily worry, testing and sport related hypos destroy my resolve or I could come out fighting. I did the latter!

As a child, I found it difficult to manage my football on 2 injections a day on mixture insulins, they created all sorts of peaks and troughs with my glucose levels which made it extremely difficult to predict where they would be when you needed them to be stable for sport. My family and I went through lots of trial and error and learning from my mistakes but I was still battling away and achieving things but probably not to my capability as I believe it was holding me back slightly.  I still managed to captain my school football team and captain my district team. I need an improvement in my management to help me kick on a gear.

Things then changed hugely when at around 14/15 years of age I changed to the basal / bolus regime. The flexibility to adapt my life more easily around my diabetes whilst making me feel more energetic took me onto the next level in my sport. It was a huge development for my control at a difficult time as a teenager but it really enhanced my control of the condition and supported my development within my sport as I broke into county squads and showed promising signs at a club level.

I then left school and had trials with professional football teams, which never quite worked out, as injuries and diabetes found a way of scuppering me, but I honestly don’t think I was quite ready either. This then led me into the semi professional game with Bromsgrove Rovers where I got the opportunity to play at Step 4 of the non league structure, whilst during the same period of time I played for the Worcestershire FA u18s county side, travelling around the country playing for them. My performance in this time had kicked up a gear due to the regime change in controlling my diabetes and my commitment to defy the odds and enjoy football never slipped. I didn't want to let anything stop me achieving and continued to push myself to see what level I could reach.

A big step in many young peoples’ lives is going to university but it’s probably even bigger when you try and tackle it with something like diabetes. A testing time on blood glucose control, as the lifestyle of a student is somewhat erratic! Combining that with football games being at different times of the day, which challenges the routine you have set up for matches, it added even more complexity to an already testing time in life.

I went to Worcester University to study my degree in sport, which I loved every second of. I was even lucky enough to write my dissertation about the effects of exercise on blood glucose levels in type 1 diabetics and non-diabetics!! It was another life-changing experience which I look upon so fondly and representing the University's 1st Team and winning a league title in my final year was the icing on the cake.


However it doesn't stop there, as with anything I do, I never stop pushing myself! I continued as I left university to play for semi-professional football clubs in my local area (Bromsgrove Sporting FC, Pershore Town FC, Southam United FC, Earlswood Town FC) and enjoyed some great cup finals playing at the Ricoh arena (Coventry City FC stadium) and playing at the Bescot (Walsall FC stadium).  I then had an opportunity to take up Futsal through a friend of mine who was playing for one of the football clubs I was at. He'd thought it would suit the way I played football and suggested it would be a good idea.


In my first full season at the highest level in England (2014/15) I won player of the year at my club (Birmingham Tigers Futsal Club) and scored 15 goals in 15 games. I was hooked and enjoying it. However it did throw up some difficulties with my blood glucose levels as the intensity was very different to football (faster, shorter bursts)! I learnt a lot about blood glucose control for Futsal in those first 18 months and it clearly didn't affect my performance. Following my amazing first season I was called up to train with the Wales National Team. An amazing honour!

I then trained throughout the summer of 2015 with the squad on and off until disaster struck and I tore my groin the last session before selection. I was devastated.


However I was patient and optimistic in my approach and I received the opportunity again to train with the squad during the summer /autumn 2016. This time the opportunity didn't pass me by! I trained well and was called up for the first time to the squad to play Latvia! I won my first cap for Wales on November 1st 2016. I was then also part of the first home nations Wales Futsal squad in December. We won the inaugural championships too! Bitter sweet as I broke my foot during one of the games though!

Despite the injury heartache, it's something I'm so so so proud of and having had diabetes it's made the journey harder but as they say, "the best view at the top, always comes after the hardest climb! My god have I had a climb to get to what I have done, but when I say that the view was incredible, it really was and it continues to be! Only my nearest and dearest see what I go through on a daily basis, everyone else just sees the smile and positive attitude that drives me to achieve. It’s an invisible condition which can be so devastating without the right attitude, correct management and the support of the people around you. My unsung heroes in all of it continue to be my family and anyone growing up with a medical condition like diabetes would be lucky to have one like mine, who encouraged me to live life like a normal person, whilst ensuring I looked after my condition.

This is why the Diabetes Football Community has been introduced. I want to be able to support people wanting to play, and who are interested in football, who suffer with diabetes. I’m hoping it will fill the void which I felt was missing when I was growing up. It’s somewhere to turn to for reassurance, for advice and guidance and a firsthand experience of combining diabetes with football, one of the UK’s biggest diseases with the UK’s biggest sport.

It’s a huge honour to be doing something like this and in some ways my biggest challenge yet. I’m hoping I can put something back into the community and raise awareness of the condition to ensure diabetics can feel an extra level of support when combining the condition with football.

Chris Bright

You can find me on my social media accounts:

brighty08 on Instagram

@chrisbrighty on Twitter 

Or if you want to check out “The Diabetes Football Community” it’s on Facebook: @thediabetesfootballcommunity
and on Twitter: @TDFCdiabetes

An impressive story, I think you'll agree. Chris reminds us all that diabetes is a condition, not a disease, which we "live with" rather than "suffer from". I like to think that if I had been struck by diabetes at a younger age,  I would have taken on sporting and other challenges with the same enthusiasm.

Sunday, 19 March 2017

Needles and Pins: Multiple Daily Mini Injections

One of the most annoying things you can hear as a Type One Diabetic is when people say “Oooh, I couldn’t possibly inject myself every day, I can’t stand needles”. The answer is pretty obvious and invariably said through gritted teeth: “Errm, I think you could if the alternative was death”.

Needles and pins-ah. It’s part of life with diabetes, and to those of us who have that dubious pleasure, jabbing sharp bits of metal into our fingers, tummies, thighs and bums is all part of the fun. I don’t like needles  - does anyone? - and despite the fact that I inject myself four times daily and often far more than that (more of that later...), I still don’t like ordinary injections. I look the other way when I have blood taken from a vein and the idea of injecting into a vein, as drug users choose to do, still makes me shudder. But yes, finger prick tests and insulin pen injections are just part of my world. I calculate that I’ve done towards 30000 injections in my 19+ years with diabetes, so to say it’s no big deal is a fair assessment of my attitude.

My faithful pen and needles: bolus (left) and basal (right)

I’ve been thinking about injections quite a lot recently – not that they can ever go that far from my thoughts. Until I started interacting with other people with Type One, thanks to the #gbdoc a few years ago, I just took it for granted that injecting insulin was the norm for me. I was vaguely aware of the existence of pump therapy, but knew nothing about it, didn’t know anybody who used a pump and assumed - without being told so – that pumps were not for people like me. I certainly heard no mention of a pump from my healthcare team, although to be honest I didn’t hear much from them at all. I was a “good” patient with “good” control, so was just left to get on with it.

However, once I started to talk to and meet others living with diabetes my eyes were opened to how things could perhaps be different. The fact that a disproportionate number of my “diabuddies” are younger than me probably warped the statistics a bit, but suddenly it seemed as if everybody else was either on a pump or trying to get one. I spent a weekend in Stockholm in June last year with a group of Type Ones from all over Europe and felt quite the dia-luddite in a group of pumpers, watching in wonder as my friends discreetly tweaked controls, checked numbers and changed cannulas. Conversations - real life and online - often suggest that being on a pump is easier and better, allowing the user more accurately to replicate the response of a working pancreas.

And yet.......I am absolutely fine. I’ve lived with Type One for all these years armed only with a couple of pens and a “guesstimating” method of calculating (no, I’ve never been taught to carb count, and never been offered a DAFNE course), and I seem to have coped pretty well. I started to look a bit more carefully at what my fellow Type Ones do and realised that if I watch and listen, pumps aren’t quite as ubiquitous as I thought. 

A few days ago, I was enjoying one of those wonderful occasions which many of us have enjoyed in recent times, meeting with a group of fellow diabetics. We were in Manchester for a meet up and meal based around the Diabetes UK Professional Conference. I was sitting next to my friend Emma, an outspoken, strong-minded and witty member of the #gbdoc and was enjoying finding her such a good match in the flesh to her feisty online persona. But I couldn’t help noticing that she injected herself several times during and even after our pizza meal. We were so busy chatting about other more interesting stuff that I never got round to asking her about her injection strategy.

For a start it was quite refreshing to see a young woman injecting and not pumping. Recent experience had suggested to me that virtually all Type Ones, especially the younger ones, were on pumps. But more striking for me was that Emma was apparently micro-managing her insulin with follow-up injections - just like I have recently started to do. (By the way, I have subsequently spoken with her on Twitter about her use of MDI, and got her permission to mention her in this post)

I’ve certainly started doing things that way, entirely off my own initiative, over the past year or so. I’ve even given it a name: MDMI – multiple daily mini injections. The additional M for mini is for the extra ones I add if the main pre-meal bolus hasn’t been enough. 

There’s a lot of Ms, Ds and Is in my life: Multiple Daily Injections for my diabetes, then in my working life as a university entrance advisor I know all about Multiple Mini Interviews, the increasingly common method of assessing students applying to Medicine and Dentistry courses at university. Candidates are subjected to a succession of interview “stations”, each one addressing a different aspect of the many qualities required of a good doctor or dentist. It’s like speed-dating, but deadly serious. So with MDI in my day-to-day life and MMI in my professional life, a new label of MDMI came to my mind.

So is MDMI a good alternative to pump therapy? Is it any better than MDI, or basal-bolus as it’s sometimes known, with its more vigorous and unvarying approach to dosage and timing? Well, all I can say is that I like it, and it works for me. I honestly can’t believe that a pump is worth the bother. I see people fretting about where to keep the pump, set changes, basal testing, TBRs and other hassles. For me, a quick jab with a pen seems less faff. In between injections, there’s nothing attached to me, no dangling tubes, no air bubbles.

Adding the extra 'M', the mini correction doses, is a recent refinement that for me seals the deal of preference for MDI. I inject conservatively before eating, then top up an hour or so afterwards if needed. Using this strategy, my average glucose level has fallen, my percentage time in target has increased and my estimated hBa1c is continuing to fall. How do you know, I hear you ask? 

Well if you know me, you’ll see the answer coming a mile off. I’m a known fan of the FreeStyle Libre flash glucose monitoring system, and I have to say that it’s because of the easily accessible knowledge of what my BG reading is and where it’s heading that I can micro-manage my insulin so effectively. I’m very aware that having this knowledge costs me about £100 a month, and that I am lucky that I can (just about) afford it. If I have one wish for my fellow diabetics it’s that the NHS recognise how effective the Libre can be in giving patients the information they need in order to manage their condition more effectively, and allow it to be available on prescription. 

Meanwhile, it’s Needles and Pins for me, not Pump it Up. Click on the links to hear the songs.

But one final thought: PLEASE don't think I'm having a go at pumpers. Many of the wonderful friends I've made through the #gbdoc are enthusiastic and experienced pump users, and I have watched  in admiration as others have started out on the challenging journey of pump use. As with so much else in life, it's a matter of taste, choice and circumstances. We are each entitled to treat this challenging condition in the way that suits us best.

Disclaimer: Please note that this post represents the musings of an unqualified patient, not a healthcare professional. Just because an insulin regime works for me doesn’t mean it is right or will work for others. Insulin is what keeps us alive, but can also be very dangerous if taken in the wrong dosage and/or at the wrong time. If in doubt, consult your healthcare team before making changes to your regime.

Monday, 13 February 2017

It's just my job, five days a week

Partha Kar, one of the #DocsOfGBDoc, caused quite a stir this week with this well-argued blog post about whether being a doctor is “just a job” or something rather more noble – a vocation. His post argued that being a doctor, even a consultant with multiple responsibilities and involvements like his, is for him a job, no more and no less than many other jobs, a conclusion that some might think somewhat at odds with his much-admired persona as a doctor who so obviously does far more than what he needs to. Surely, we might think, if ever we needed proof that Medicine is a calling, then we have it in the life and work of our Dr Partha.

Like all good blog posts, this one set me thinking. Is there such a thing as a vocation? I am a teacher, married to a teacher, the son, grandson and great grandson of a teacher on one side and the son and grandson of a clergyman on the other. I am father of an exceptionally dedicated teacher, a passionate recruiter of university students and a proud welfare assistant, so I have always been surrounded by people who work in jobs which are anything but nine-to-five, and which you often bring home at the end of every working day. Surely, I have seen people living out a vocation, and indeed I have lived out a vocation in a thirty six year career in teaching. I have never regarded devotion to work as anything other than the norm: my father often used to break family holidays to conduct funerals requested by the families of loyal parishioners, and in the days before safeguarding my mother often used to invite pupils from her school into our home for extra practice before important piano exams. 

As a teacher, I have always believed in doing what needs doing in my students’ interests rather than just doing what I’m paid for. I am also very conscious that I give off a very strong “teacher vibe”, and always have done. Strangers always guess what I do for a living, and I’ve probably been addressed as “Sir” more often than by my name over a lifetime. Former pupils, even when well into middle age, or even famous, still call me “Sir”. Some of the younger teachers at my school address me as “Sir”, not that I have ever encouraged it, and even some of my new friends on the #GBDOC use the term, despite having only met me as an equal, or in some cases not met me at all. I can’t shake it off, and I feel very much like the proverbial Mr Chips with a lifelong vocation in teaching. 

Yet the more I think about it, the more I agree with Partha. I’ve loved every minute of being a teacher. I’ve given it my heart and soul, and worked every hour God sends when necessary. But it’s just a job, and when I’m not doing it I’m very happy to forget all about it. 

Shock horror! Doesn’t he care? Of course I do. But the more I think about it, the more I feel that the whole idea of a vocation is flawed and potentially harmful.

Firstly, it carries for me the whiff of obsession, with the attendant risk of fatigue and burnout. I’m far from convinced that it’s healthy for either the individual or the profession for the former to be completely taken up by their job, and anyone who calls their job a calling risks seeing themselves as indispensable and losing a sense of perspective. I like people to have what is these days called a "hinterland": I always feel added respect for people who have an unexpected, unusual or incongruous interest – like trainspotting rock singers, wildlife-loving footballers, dancing politicians or rugby-playing doctors. I’m sure that a contrasting interest makes an individual more balanced, grounded and therefore more effective in the day job.

Secondly, and more importantly in my view, the idea of a “vocation” for medicine, teaching, nursing, the church, social work or whatever strikes me as rather arrogant and belittling towards other jobs. Surely it is possible to do any job with a sense of commitment, going beyond the call of duty and service, and I have to say I like nothing more than seeing another job well done. I’ve seen and benefitted from doctors, teachers, nurses, vets and clergy with an awesome sense of duty and commitment, but I’ve also had the pleasure of witnessing a true sense of vocation from car mechanics, waiters, chefs, painters and decorators, financial advisors, car salesmen and every job imaginable. The most dedicated professional in popular song is not a doctor or a teacher, but the eponymous Wichita Lineman.

I recently bought a replacement car battery from Halfords, and as I was very busy at the time, I elected to pay to have it fitted. I was so glad that I did so when it turned out to be an unexpectedly fiddly job because of badly corroded fastening clips, but I was even more glad that the job was done by a cheerful, resourceful and chatty young woman, whose manifest pride in a simple yet tricky job showed a true sense of....vocation. The fact that it was a woman doing a job traditionally associated with men was just an added bonus. Why should it not be a vocation to do anything and everything?

Of course saving and preserving lives matters more than changing car batteries or serving food. Of course teaching five year olds to read and write matters more than getting a smooth gloss finish, but we can’t all qualify to be doctors or teachers. What literally anyone can do is take pride in a job well done, give that little bit extra for no financial reward. And therein lies a vocation in which we all can share. "From each according to his ability, to each according to his needs" may be an unfashionable motto, popularised by the in some ways discredited Karl Marx, but it has always seemed to me to be a pretty good basis on which to build a decent society.

We are all “called” to do something, and that something is our job. It’s how we put a roof over our head and food on the table. I hope that I’m not being naive and idealistic when I say that to do your job with a sense of selfless pride and vocation means you’re more likely to enjoy it. But in the end, in the words of Elton John's Rocket Man, ”It's just my job, five days a week"


Saturday, 21 January 2017

The Boy in The Bubble

There’s been some talk this week on diabetes-themed social media about diabetes-themed social media. That might sound rather like navel-gazing, but in fact the conversation I saw was all about the limitations of social media in supporting people with diabetes, and the risk that those of us who use it a lot fall into the trap of over-estimating the size and scope of the SocMed bubble.

So are Facebook and Twitter here to stay? Are they essentials of patient care and peer support or are those of us who use them just a self-serving clique? Am I, a massive fan of Twitter and the #GBDOC, part of a genuinely valuable and valued group which helps people with diabetes to live well with their condition? Or am I  just an overgown teenager - The Boy in the Bubble?

It’s all about the bubble. I’ve had cause to question whether I’m in a bubble more than once over the past year. The Brexit vote and the Trump victory both seemed so at odds with what virtually everybody to whom I ever speak in the real or online world said that I had to conclude that I really did live in a rather limited world, full of people whose outlook and opinions are very close to my own. Self-evident in many ways: I’m a university-educated baby-boomer retired languages teacher, the child of a Liberal Christian clergyman and a schoolteacher, married to another languages teacher, living on a suburban road in a pleasant and reasonably prosperous market town. Hardly likely to be a Brexiteer or Trump fan, I guess, or to associate with those who are. Those of my generation and younger who were so shocked and dismayed by the Brexit vote should perhaps think what it feels like to be an elderly white Briton, brought up in the afterglow of the Second World War, believing that Britannia does indeed rule the waves, and finding your town swamped with people speaking a strange language. And before we guffaw too much at the election of an atavistic billionaire male chauvinist to the most powerful job on earth, we should perhaps imagine how it feels to be an unemployed factory worker from America’s rust belt, who has seen his work out-sourced to a Mexican factory, where labour is cheaper. I strongly disagree with both of these archetypal voters, yet can see why they might be attracted to such simplistic political solutions as those proffered by UKIP or Trump.

To an extent, we all live in bubbles, in comfort zones populated by people with whom we generally agree on a whole range of things. As a species, we are comfortable with the familiar, and gather together in bubbles of our own choosing, both in our real lives and now also in our online associates. We like to hear others say what we are thinking. But we should be cautious of over-estimating the size of our own bubble.

So what of the “Diabubble”? Well, I’m well and truly in one, but I’m aware that it’s actually pretty small. There are some 4 000 000 diabetics in the UK, and about 400 000 Type Ones. I “know” a few hundred on Twitter (I’m still a Facebook refuser for now) and regularly talk to fewer than 100, and wouldn’t presume to call more than maybe a few dozen “friends”. I’ve met around that number in real life, and found them without exception to be not only exactly like they seem through the filter of 140 character tweets, but also without exception the most delightful, friendly and supportive of friends. An online community linked only by a medical condition which is by its very nature random has led me to a circle of friends who are diverse, yet appear to share most of my core tastes and values.

Nobody is more surprised than me to find myself part of such a bubble. I am not by nature very gregarious, having always been very happy in my own company, yet I am sociable and interested in the lives of others. As a child, and indeed throughout my adult life, I have always tended to be friends with “everyone and no-one”, with no really close friends. When I developed diabetes in the late 90’s, I had no interest in getting to know others with the condition, indeed I actively avoided overtures from local “support groups”. I stumbled upon the #GBDOC sometime in 2013, by accident rather than design, having joined Twitter out of idle curiosity in 2011, and was certainly not seeking either friendship or knowledge about diabetes. Yet it has become a very big part of my life, and some of my diabetic friends have become valued and trusted sources of knowledge and friendship. They are also very good company, true friends both online and when I've met them in the real world, and I hope that the feeling is mutual.

Yet there are far more diabetics out there who either don’t know about the online community or don’t want to be part of it. So whilst it’s all very well for those of us who like and use the #gbdoc to pat ourselves on the back for being so knowledgeable and mutually supportive, it would be wrong for us to get carried away and think we speak for all diabetics. Just because we are helped, or even amused by tweeting pictures and tales of our (quite literal) ups and downs, doesn’t mean we should expect everyone to. We may be expert patients, but that doesn’t make us experts, and I know that there are people with diabetes out there who get annoyed by the constant stream of what one user colourfully terms "diabollocks".

Should we be evangelists for our community? For me, the instinctive answer is no. I have a deep-seated suspicion of evangelising: I am a practising Christian with a very particular take on faith (look elsewhere on my blog if you really want to know more), but I have no interest in converting others, let alone saving souls. I actively support my childhood football team, Bolton Wanderers, but fully understand that many other people support another team, or think that football is a futile and over-rated pastime. I love cats, but fully recognise that others love dogs. Each to his or her own.

We are all different, but those with whom we most readily associate are more likely to echo our own feelings and opinions. We can, and should, if asked, extol the benefits and advantages of what we like, do and belong to, but we should not assume that there is only one way to do things, only one way to think. And that applies every bit as much to diabetes and healthcare as to anything else. 



PS I haven't a clue what Paul Simon's song The Boy in the Bubble is about. It just satisfies my need to give every post a song title. Good song, though!