36 years down!

36 years ago today, I was admitted to hospital diagnosed with Type 1 diabetes. This was a traumatic time for me, and I’m sure it was traumatic for my family too. I was at high school and in my mid-teens. I shouldn’t have to say this, but unfortunately I still do: it was not due to obesity or over-eating! Type 1 diabetes is an auto-immune condition which can affect people at any age and level of health.

Ever since, my life has involved injecting replacement insulin, monitoring my blood glucose, and being conscious of the carbohydrates I was eating (at a very coarse level it’s a balancing act between food, exercise, and insulin, but there are MANY other factors that upset the balance). But life goes on: diabetes is just one of the complications in my life that many other people don’t have to deal with.

My life is fairly busy. I’ve had hectic work and travel schedules, worked in office jobs for huge companies, for small companies, and worked freelance by myself. I’ve been deep in the bowels of thousand-node computer systems I helped design and manage, and been crouching in the wilds photographing fascinating wildlife.
My work has so far taken me to every continent. Over the years my “diabetes care” had ups and downs. One year very early on (in the 80’s) I let things go almost completely unmonitored (still using insulin, but with infrequent BG tests). But in the years since, I managed to maintain some semblance of control. My diabetes management wasn’t classed by anyone as “bad”, and in fact I was reasonably healthy. But in the back of my mind I’ve always been conscious it could be better.

And when you live with the spectre of possible later health complications looming over you, it’s always a worrying concern in the background. Mental health issues and disordered eating are unfortunately significant risks for people with diabetes. I think I’m lucky to have escaped unscathed so far.

Party!

Today is an anniversary (my “diaversary”) which comes around every year, but many times I haven’t paid it a lot of attention. Usually simply because I didn’t notice it until it was past. Lately I’ve been celebrating it.

Just a week ago I had one of my reviews with my endocrinologist (my “diabetes specialist”) where we review my blood tests and my CGM data, do various health checks, and talk about anything we want to tweak. This is almost the first time this has coincided so closely with my diaversary.

Things have dramatically changed since the 1980s, and in fact in the last two years. In 2017 I overhauled my diet (finally kicking the diet soft drink habit and thus eliminating lots of snacking), introduced continuous glucose monitoring (CGM, although I had been using Libre since mid-2016), and in mid-2017 built myself a closed-loop “artificial pancreas” using the wonderful work that was started by Dana Lewis with OpenAPS. I think it’s all helped.

For the last year my blood tests have shown HbA1c values well below 6%, a target I was never able to pass in my previous 35 years. Of course, HbA1c only measures the average blood glucose level, and doesn’t show any evidence of the swings that we experience between lows and highs.

In talking to people about this it appears that some people have assumed that I’m achieving this through a “low carb” diet. Yes it’s a “lower carb” diet without all those snacks I used to have, but still it can sometimes be several hundred grams of carbs per day. Many “low carbers” try to stay below 30g/day. I’m sure that works for them, but I haven’t felt the need to put myself through that.

I don’t have the historical records of what I was like years ago (I only have HbA1c data going back 17 years, and no good records of my swings back then) but now with CGM data these swings can be measured in data like the above statistics. Not only have my average glucose levels reduced to the reference range for “a healthy person without diabetes”, but my range is also starting to approach the same thing, and without dangerous hypoglycaemic events.

And this is all with less hour-to-hour thinking about my diabetes management than in the past!

Blessed and lucky

I’m blessed and privileged in having access to CGM and pump technologies, and I am very appreciative of the closed-loop system I’ve been able to build to link these together. It’s not a cure for diabetes, but it’s probably the closest thing we’ve got so far. It’s a shame these tools are not yet available as regular medical devices for most people yet (being left in the “DIY” camp) but that situation is at least starting to change. The current price of access to the underlying pump and CGM tech is another problem restricting wider up-take.

I’m blessed to have a wonderful partner who stands by me. We have a silver wedding anniversary coming up, and I’m always looking forward to sharing the rest of our lives together.

I also have many friends. Most of who know me from outside the diabetes world. But I’m also proud to call the many fine people in the DOC (Diabetes Online Community) my friends! In Twitter’s #OzDOC, and in various Facebook groups both here in Australia and around the world. And many of those are now dear friends in person too.

Thank you all for helping me get to here, and I’ll continue to pay it forward.

The shadow in the background

I’m obviously very happy at the moment with the tools I’ve been able to use to help manage my diabetes. They’re helping me reduce the odds of developing other health complications. But like with all health issues there are no guarantees, and there’s always a chance we’ll be struck down with an issue we weren’t expecting. All I can do is keep myself as healthy as possible, and see what comes. My otherwise healthy father died from multiple myeloma (cancer) and my mother from a stroke, so I know that anything can affect us.

I was diagnosed with coeliac disease in 2017, and have had to adjust to a gluten-free life. Other health issues may appear in the coming years (I am over 50 after all): hopefully I will be able to live with them too. I do feel that having lived with type 1 diabetes for all my adult life I might be more aware of my health than people who haven’t had to deal with chronic health issues. Hopefully karma won’t bite me in the bum for gloating that everything’s going well at the moment!

36 years down. Many more to come!