"Walking on the Milky Way": some thoughts for Diabetes Awareness Week 2021

Some thoughts for Diabetes Awareness Week, to an extent recycling things which I have said before, but worth modifying and repeating, precisely in order to raise awareness. When talking about diabetes, I have always tried to strike the balance between melodramatic self-pity and “no big deal”. My talk at TAD back in 2017 attempted to put this across by portraying diabetes as “something and nothing” and four years on from that talk, and twenty three years on from diagnosis, that’s still my view. I genuinely find it hard to get annoyed by diabetes, or by others’ attitude to it; I am, however, very aware that for others this is not the case. I am sure that I would have found it far more of a burden if it had interfered with my carefree youth, or indeed if I hadn't had the benefit of the monitoring technology which we too easily take for granted. However, I am fortunate to be gifted with a temperament that doesn’t easily get annoyed, so for me diabetes remains a severe irritant rather than a burden. 

However, the one thing that consistently irks me in the perception of diabetes among those who don’t have experience of it is the widespread sense that Type One Diabetes is a condition that affects the young, which as I have written before, overlooks the fact that it can and does come on at any age, and that it stays with you for life.

I am resolutely anti-ageist: when I was young, I had many friends who were much older than me, and now that I am in my sixties, I have friends of all ages, including many in their twenties and thirties. I enjoy, but don’t crave, the company of others, and have always enjoyed most the company of people who are less than obviously like me. So I tend to find friends among those who have little in common with me, be it interests, occupation, tastes, gender or age. I believe that I am age and gender blind to a good extent, and I still feel no different mentally to the child, teenager or young adult that I once was.

However, in diabetes terms, I often feel compelled to draw attention to my age, given that persistent sense that the Type One Diabetes with which I live is often thought of as a young persons’ condition, whilst Type Two Diabetes is often associated with older age. Neither is true.

The theme for this year’s Diabetes Awareness Week is Diabetes Stories. Diabetes is a condition where there are as many stories as there are people living with it, but sharing stories is important, not least because others may read, recognise and draw comfort from similarities, and perhaps most importantly, because others may recognise symptoms and seek potentially life-saving help. My own story serves to remind others of the fact that Type One can strike at any age, and that once it does, it is there for life – a life which can and should be no shorter than anyone else’s. My story is a good illustration of the former, and I have every intention of ensuring that it proves to be a good illustration of the latter.

I was diagnosed at the end 1997, at the age of precisely 40. Until then, I had lived a life with minimal contact with the health service. I had the standard childhood illnesses, with the associated spells off school before the age of 10; I then managed an entire secondary school career without a single day's absence through illness. I fell off my bike at the age of 13 and suffered a straightforward arm fracture, which mended in the standard six-week time frame. And that was about it. Prior to my diagnosis with diabetes in 1997, I had worked for 17 years as a teacher with a total of about four days off sick (two lots of two). My doctor's surgery was a place unfamiliar to me.

Moreover, I was a slim, healthy and active person: as a child I had walked or cycled to school, played football as a recreation and spent holidays fell-walking with my family. As an adult I cycled to work, tended an extensive garden and walked from my home to the local shops rather than driving. And I still do.

Then, at the age of 40, I had a very bad case of 'flu - real ‘flu -  in the week running up to the Christmas break at school. A week's absence off work the first time ever, but no real cause for alarm: there was a big epidemic that winter (1997-98) and a number of colleagues were off at the same time. Then, on the day after I had started to feel better again, my condition took a nosedive, and I went to my GP, alarmed at this apparent recurrence of an illness from which I had just recovered. I felt tired, thirsty and run-down, but just thought it was a hangover from my first real illness in years. A routine urine test revealed very high blood sugar, and an alarmed GP 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. I was briefly thought to be Type Two, but with symptoms persisting and getting worse, it soon became clear that I was Type One, and my over-riding emotion was one of relief, not fear. I had found the cause of what, with hindsight, had been a malaise which had crept up on me through that autumn, with a battery of symptoms, all of which had been quite easy to explain away.

Foremost among these symptoms was the raging thirst. I had always been a thirsty individual, so the feeling of extreme thirst on hot days, after exercise, or after a meal was a familiar one. On a number of occasions that autumn, I therefore explained away extreme thirst by circumstances such as a salty snack, or a dash for a train on a warm afternoon. Moreover, it was in the late nineties that the sensible but now overstated and ubiquitous obsession with hydration really took hold. Not that many years ago, we didn’t all walk around clutching a bottle of water, and footballers played a full 90 minutes in the sunshine without taking hydration breaks. So if it doesn’t sound daft, thirst became fashionable in the late 90s, and I subconsciously bought into that fashion.

Another creeping symptom that autumn was extreme tiredness, but back in those days, my autumn working life was absurdly busy. As a Head of Sixth Form, it was the season of university applications which used to be submitted by an immoveable December 15^th deadline, and with 100 or so applications needing detailed references, no administrative support and little timetable remission I did most of that work in my spare time before school, after school and through very long evenings. It was exhausting, so any possibility of it being exacerbated by a medical condition didn’t cross my mind.

And then there was weight loss. I was never overweight, but had like most people gained a bit as middle age encroached. But then I started to notice a bit of looseness in trousers, requiring one notch tighter on the belt, or shirt collars feeling a bit loose. Fair enough, I thought. Losing a few pounds around the 40^th birthday was a welcome bonus, I thought, to being very busy and physically active, often with barely time for lunch or snacks.

Looking back, I was ignoring symptoms that should have rung alarm bells, but it took that dose of flu to bring it to a head. I assume that my diabetes came on gradually over those weeks, but that week’s illness gave it the boost that made it impossible to ignore. My HbA1c on the day of initial diagnosis was 22.1, and rose to 33.1 a couple of weeks later - just before I started on insulin. (I love that I can now look up those numbers on my NHS records)

The fateful numbers

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. By the Easter four months after diagnosis, I led my annual residential school trip to France with about forty pupils and five colleagues. I continued to do this every year whilst it remained part of my role at the school. By the June six months after diagnosis I was planning, setting up, organising and running the end-of-exams Ball for 200 Sixth Formers, a demanding job I undertook every year. In day-to-day terms over the remaining twenty years of my working life, I continued to take on all that life and work throw at me, with an unblemished attendance record in a very stressful job. I never missed a day due to illness through all that time.

But let's not pretend it's easy. Living with Type One Diabetes is a 24/7 challenge that we face on top of all as that we do in life, whatever that may be. You can never forget or overlook it for more than a few minutes. Every action, every piece of food or drink, every event needs to be thought through. Any departure from routine is potentially risky. Most infuriatingly, insulin - the treatment that you self-administer every day in order to preserve your life - is precisely what threatens to bring you down in day-to-day terms. I think is fair to say we have a love-hate relationship with it!

And please, if you're reading this and someone of any age whom  you know or love is showing diabetes symptoms - often now called the “Four T's” (thirst, tired, toilet, thinner) – do consider the possibility of Type One Diabetes. It is not at all related to lifestyle, diet or condition. It can strike at literally any age, not just in childhood and adolescence. And above all, it should hold no fears for the person diagnosed or their family. It will be a lifelong nuisance, which is fully controllable thanks to the wonders of insulin, increasing availability of sophisticated ways to administer it and very clever ways of monitoring blood sugar. And it won't stop you doing anything, eating anything or living a long, healthy and happy life.

If you are familiar with my blog, you will know that all my posts are given an appropriate song title, with a link to the appropriate song. My title is a song from my DiabetesPlaylist which I think is one of the most under-rated singles of the past few decades. OMD’s Walking on the Milky Way just about qualifies as a diabetes song in terms of referencing a chocolate treat which is NOT off limits for people with Type One, but for me it is a bitter-sweet recollection of lost youth tinged with dignified acceptance of the passing of time and creeping old age. It is melancholy yet triumphant, and this summer celebrates the 25^th anniversary of its release in the iconic summer of 1996. A brilliant introduction, a fabulous bridge, a soaring chorus and an outro that sounds like a recessional organ voluntary. If you're old enough, it'll take you back to the summer of '96. And if you're not, a chance to get to know a fine song that you missed.