Ignorance + Defiance.

When it comes to life with type 1 diabetes, I’m not of the ‘woe is me’ mindset AT ALL. It’s not a chip on my shoulder; it’s just a thing I happened to get lumbered with that I deal with, alongside 400,000 others in the UK. It is indeed a pain in the ass relentless moron of a condition, but – once the absolute side-lining bafflement of diagnosis has been processed – it’s more like the dull headache from one too many cheap Slippery Nipple shots (whoooooo?) that stubbornly lingers for the entirety of the following day, as opposed to being suddenly knocked unconscious by a bulldozer that honestly you just didn’t see coming, officer.

What’s a Slippery Nipple? Oh, come on. I know you readers better than that by now.

Wily, cunning and all-the-more-dangerous-for-it are the trademarks of this condition that conversely will, for the most part, let you get on and live your life. Sort of. With a pharmacy’s worth of kit in tow.

Today however, I’m feeling a bit soapbox-y. I don’t know precisely what that means, and I can’t be bothered to Google the origins of the word ‘soapbox’. But y’know, I’ve got my megaphone at the ready.

Maybe it’s because I’m sat here with my own stack of Slippery Nipples. FYI I’m not, but I’m putting an excuse disclaimer out there to fall back on should this post come and bite me in the ass. I’m feeling pretty roused, y’all.

I said roused. Not aroused. Jeez, guys.

So when someone suffers an awful illness – Christ, when someone contracts a common cold – people very kindly express concern. The chicken soup and the grapes come out, ‘Get Well Soon’ cards are sent, and tattle ripples around the office.

‘Did you hear about Sharon? Terrible, isn’t it?’

Or, depending on your office:

‘Did you hear about Sharon? She’s off sick. She was fine last night in the pub though, wasn’t she?’ *raised eyebrow*

Then Sharon recovers, and indeed does Get Well again, and people willingly express their delight that she’s back to full health.

All the while here we are, us little type 1s, fighting a disease that, should we give in, would kill us within weeks. Actual death. We are fighting that battle day in and day out, as long as we both shall live, because we have no choice in the matter if we want to grow old like anyone else. This is a disease that given the chance will RAVAGE a body. The only reason it doesn’t is because we constantly try and keep a hold on it, as best we can.

So when an NHS diabetes audit gets published that tells the world that the majority of type 1s (61.3%, to be precise) are failing to get the vital health checks we are told we need from a 10 minute appointment twice a year for the condition we manage 24/7/365 and had no control over getting, and the immediate reaction is that it’s our own fault, I just wanna stop you right there, Sir.

I’d just love to hear how Average Joe Commenter would cope if that common cold they’re struggling with – that one that’s forced them to take a week off work – NEVER EVER LEFT THEM EVER, no matter how many Slippery Nipples they drank to numb the pain/stimulate the creative process.

This report is very worrying yes, but as I explored in my last post, these kind of tick box checks also aren’t the whole picture.

We as a bunch who share the commonality of a defunct pancreas are powerful, and vocal, and ALIVE, thanks to our own hourly efforts. We don’t get congratulated for those efforts – nor am I asking for that. We don’t wear our pumps on our foreheads, or hold our injections aloft for the world to see like a badge of honour. Mostly because it would just really make your arm ache. We don’t receive too much concern over our plight, aside from those who love us enough and are patient enough to choose to share the plight with us.

This is, for the most part, a silent battle. A battle we weren’t told we were entering until we were suddenly fighting every day to save our own lives.

This is, for the most part, a silent battle. A battle we weren’t told we were entering until we were suddenly fighting every day to save our own lives. A battle that doesn’t ever end, and one in which the parameters, tactics and ‘correct’ choices are constantly changing. You know, just to keep things interesting. It is a battlefield shared by many so-called ‘invisible’ illnesses.

There are triumphs. Many, quiet triumphs. The relief of a blood sugar reading that tells you you haven’t ballsed up that restaurant meal where you had to guess the carbs. The elation of a new bolus tweak that means you’re defying the post-coffee spike for that day. Making it through a meeting without passing out even though you could feel your sugars drastically dropping. The strength it takes to get out of bed with a blood sugar of 18mmol/l, despite having tried your best to set doses to account for the delayed glucose release from the roast dinner you chose to enjoy with your family the night before.

But these triumphs don’t really get celebrated, because they are decisions we have made a hundred thousand times already, and will have to make a hundred thousand times over yet. With that comes with the inevitably of making the wrong ones from time to time.

Living is a choice we have control over. It comes at a cost, though. One that we didn’t ever bargain for.