A Decade of Progress
My mid- and late thirties were a turbulent time, but nothing from that period quite matches the moment I noticed a small black dot as I travelled to London for work. I thought I’d glanced at the sun, or a bright light, and that the dot would vanish. I was very wrong.
In today’s blog post, I’m going to look back over the last decade of living with T1D and my HbA1c history — but first, what happened to push me into taking things seriously.
No Longer My Diabetes Salad Days
When the black dot appeared, I was already more than 25 years into life with T1D. Twenty-five years without any problems. Invincible.
My “salad days” with T1D were long gone and life was treating me kindly. I had the house, the car, a senior job in London, and all the trappings, and vices, a young man might do better to avoid.
The Dot That Never Went Away
While life was “colourful” and busy, the dot remained. It moved around, that’s what blood does in the fluid of your eye. Sometimes it would disappear from my vision entirely, and for a brief moment I thought everything was fine again.
Of course, it always came back.
Six months passed and it brought some friends to the party: more black dots. They’d even moved in next door, floating around in both eyes. Naturally, I did what many frightened men do and put my head firmly in the sand.
Wakey Wakey
In the UK, during winter, when you wake up it’s dark - you’ve probably noticed that. However, if you wake up with eyes full of blood in the UK (or anywhere), in winter (or at any time of year), it’s extremely dark.
That morning, I finally decided enough was enough and went to the emergency eye clinic. During the journey to what must be the world’s hottest clinic, I resigned myself to whatever was coming. Maybe, just maybe, they could fix me and I’d go home with perfect vision.
I did go home. My vision was unchanged, and emergency surgery was booked for a few weeks later.
The words of the man who would soon become my surgeon and sight-saver cut through me like a hot knife through butter:
"I’m going to see a lot of you."
When a consultant eye surgeon says that, it’s never good news.
After several surgeries, pain from off-the-scale hypertension, and significant visual impairment - issues that still affect me today - they’d patched me up enough for me to function again.
Eyes Wide Open
I’ve written about my eye complications many times, so I won’t bore you with the full story again. Feel free to explore the blog if you want the gory details.
The experience truly opened my eyes to the dangers of T1D. My 40th birthday was on the horizon, and taking this seriously was long overdue.
30 Years a T1D
My three-decade diabetes anniversary coincided with a primary care diabetes review. Eventually, I allowed the HbA1c test. Three days later, my GP called.
My HbA1c was 8.9%.
If you don’t work in percentages, trust me, 8.9% is high. Borderline very high.
I thought I was looking after myself. I was doing better, but only just. I was finger-pricking a little more often, rather than once or twice a week. That might sound minimal, but even that slight improvement showed up in my HbA1c.
I remember it being higher in the past, possibly as high as 10% when I was a child.
My surgeon’s words echoed in my mind. The risk of total blindness was very real.
40 Laps of the Sun
It probably wasn’t the exact moment I turned 40, but somewhere around that time I decided to truly get to grips with this condition. A GP friend told me he’d noticed how common that age is for men to start taking their health seriously.
Urgh. I hate being part of the crowd.
Still, taking it seriously began. Carbs counted. Pre-bolus dialled in. Eight to ten finger pricks a day. I was micromanaging the sh*t out of it.
My next HbA1c?
7%.
Fights for Progression
I hovered around 7% for a while. Then I moved into the high 6s, then mid, then low - eventually bottoming out at 5.9%, a pre-diabetic HbA1c, over the course of the last decade.
Taking T1D seriously is hard. Using basic tools and medication will only take you so far. For some, that’s far enough, and you’re smashing it.
For me, I was burning out.
Disappointingly, my requests for a CGM, and later a pump, were initially declined. After going through the hell of eye complications, “no” was never going to be the end of those conversations.
By then, I’d started Diabetic Dad UK on Twitter, back in the golden days of social media. The friends and connections I made there gave me invaluable guidance (and access) to the technology I needed.
After countless meetings, calls, emails, and a few thinly veiled threats (kidding… mostly), I finally got what I needed to manage my diabetes effectively and still have the headspace to live my life.
The T1D Tech
Many of you reading this will already be using some form of diabetes tech, probably a CGM at the very least. In England, we have some strong voices to thank for that.
Sooner or later, hybrid closed-loop systems will be the standard for people with T1D. That technology has given me my best HbA1c results yet and reduced the risk of further complications later in life.
The Long Game
T1D is lifelong. Let’s forget cure stories for a moment. If you get the diagnosis, you’re in it for the long run - the forever run.
It’s never too late to grab this condition by the throat and stand up to it. It’s a bully, trying to kill or maim you.
And when you stand up to bullies, you shrink them. You make them smaller and less significant.
Just like your future HbA1c results.
