I would dearly love to wring the neck of the person who told me many years ago: You can live a perfectly normal life with Diabetes.
On what planet?
The more ‘normal’ your A1C is, the more you had to do to get it there and keep it there. It’s a 24/7 thing when both the stuff that sustains you and the medication that fixes you, can kill you. Hmmm… a lose-lose situation.
When the stresses of daily life make your blood glucose soar around a number you don’t want… when an unexpected walk though a shopping centre has you rummaging for your meter and some glucose… when a simple social situation where there’s food, turns you into a mathematical genius… when the endless rounds of doctor visits, endos, eye doctors, foot doctors, pharmacy visits and any number of allied health visits and more, has you calculating how much per hour your time is really worth… when you’re tossing up between paying for medical insurance and paying the mortgage… when you wake up every morning, thankful you’ve woken up at all, but have to start managing diabetes all over again…
Just a few points of a very long list of D-life intrusions. How is that normal? Not remotely so. And where is the cure “within five years” I was promised more than 30 years ago? On the horizon? Yeah, right, that horizon keeps being a horizon for now, no matter how fast you run towards it.
Unless you eat the same, do the same, take the same every single day, day in and day out (and even then, there’s unpredictability), and if that’s normal for you (it isn’t for me), it’s still not normal.
After a few relentless years of diabetes, and if you’re interested enough, you end up with a PhD in D-Management. It’s life-long learning as you figure out what works for you, and watching as new things are discovered, new studies done, new technology – none of it perfect, but each step makes a difference.
Food, activity, stress, insulin – a small mix in a much greater mix of how this disease works.
And there’s survivor guilt of sorts too, when you hear about so many people dying or not living well because they can’t afford insulin. Nowhere is this more prevalent than in third world countries.
But this isn’t really a grumble… ok, it is of sorts because ‘normal’ doesn’t factor much into living with diabetes. Normal would be forgetting you have diabetes, eating anything you want, not taking insulin or other medication, not testing a gazillion times a day and generally not having a problem doing that. It’s like having a baby – your awareness is on your baby all the time, no matter what else you are doing. Babies grow up, diabetes doesn’t, although it can get easier to manage over time, the more you learn and the more determined you are.
Factor out life stresses, depression and other things that get in the way, diabetes IS manageable, but living with it is not a normal life.
There are few things you can’t do with diabetes – piloting a commercial plane, for one. Yet there is so much on-the-job discrimination for some… like you wouldn’t believe! No way, in this post, am I going into the other discrimination and misinformation out there that impacts on our lives. If you are determined and you can manage your diabetes, there’s no reason you can’t do almost anything you want. Being spontaneous is a little more difficult sometimes, but still do-able. If you grab your supplies in an always-prepared bag and go, you could almost call that spontaneous!
For me, this is a testament to how well many of us handle diabetes, despite so many obstacles, the huge education curve and the day-to-day vigilance. We do what’s required of us on a 24/7 basis, not only to stay alive from day to day, but to stay as healthy as possible for the long term. This is not only a mostly silent disease, all too silently it can wreak havoc with other medical complications if not well-managed 100% of the time.
And parents of kids with diabetes – I’ve said it before and I’ll say it again – what an amazing job you do! Out of love, you take on this disease as if it was your own, losing sleep, worrying, doing what’s required – trying to manage something even more unpredictable in kids than it is in adults.
Having diabetes is not in any way a ‘normal’ life, but it’s an often invisible disease and one that can be lived as a semblance of normal.