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? I guess that might well be true, and if so, how many extra thought processes do we all have in a typical day compared to someone without diabetes? And at what price to the rest of our lives?



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, Twitter, blogging 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.

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