No apologies for the lack of blog posts recently. Recently? Alright, for bloody ages. Much has been happening, calm your udders, I'll get to my trials and tribulations another day.
Today, let's talk about eyes. Specifically, diabetic retinopathy.
I focus most of my diabetes advocacy on myself and a tiny group of about 300 male T1Ds, but I still get worried people reaching out to me about their eyes. "Worried" is probably an understatement, let's just say they're not feeling great about their peepers, because of some recent, or even not so recent, news.
I get it. The prospect of sight loss is terrifying. You don't need my story again today, but I understand completely the desperation to find out what's going on, what you can do, and whether everything is going to be alright.
Dear reader, at this stage I'd like to refer you to the title of this post.
Never giving up is easy for me to say, I've been through the Bloody Battle of the Retinas. It's a lot less easy to do.
There's no "man up" message here. No warrior bullshit. You're a human, probably just trying to get by like most folks, and eye complications are the last thing you need. Ever.
So, what happens if it happens?
Firstly, breathe. You're probably going to immediately think the absolute worst, blindness. There, I said it. How can you get by and be blind? Alright, Stevie Wonder did pretty well, but you can't even play the piano.
Keep breathing.
A huge number of type 1 diabetics get eye complications of some sort. It's almost a rite of passage. Don't let that worry you if you're new to the club, plenty of us don't get them either.
In and out, in and out.
If you get "the letter", or a concerned word from your eye docs, the first thing you need to do is pester them. Ask every question buzzing around in your head. Find out about treatment options, how long things might take, how you might need to prepare, what you can do from that day, absolutely everything.
Nice deep breaths.
Asking those questions right away means you'll sleep better, sooner. It might be scary, and you might want to bury your head in the sand, but you will have questions, so the sooner you air them, the sooner you can get to grips with what's going on.
At some point, things will start to sink in, and you might spiral. If you need invasive treatment, message me, I've had most of it, I'll talk you through it, you'll probably be even more worried. Be angry, be sad, go quiet if you need to, but talk about it. Do not bottle this up. The sooner you share your worries, the sooner you'll take charge of the situation.
That's right, breathing is very good for you.
Where I'm at
This post was inspired by a recent eye clinic check-up. It's been over fifteen years since the brown hit the fan for me. My surgeon gave me encouraging news, I've been reasonably stable in the eyes (not the mind) for a few years, but never before have I heard words that gave me this sense of being ahead of it. A massive chip lead. Four nil up at half-time.
Essentially, things are stable, and after this long, they're unlikely to change so long as I "keep doing what I'm doing."
I stopped breathing for a moment.
It wasn't me, much
I don't feel like I saved my own sight. I did the long-haul work, yes, but the credit for where I am today belongs to a lot of other people and things far bigger than my own willpower.
It belongs to my surgeons, who have operated on me, monitored me, and told me straight when things needed to happen. It belongs to the NHS, full stop. Whatever gets said about it in the news, I've had access to genuinely brilliant, sustained eye care for well over fifteen years, free at the point of use, and that is not something to take for granted.
It belongs to getting access to technology. Hybrid closed loop changed everything for me. Handing some of the constant, grinding decision making over to a device that reacts faster and more consistently than a tired human brain ever could has done more for my stability than sheer effort alone ever managed.
And it belongs to an army of T1Ds. The people who answered messages at odd hours, who'd been through the same scans and the same waiting rooms, who told me what to expect before a procedure and reminded me I wasn't the only one. That community carried me through the bits I couldn't have managed on my own.
So when I say never give up, I don't mean go it alone. I mean keep showing up, and let the people and the systems around you carry some of the weight too.
Eye complications or not, please never give up.
