Diabetogenic

Next month, it will be 16 years I’ve lived with diabetes (in case anyone is looking for gift ideas, wax or peridot are the suggestions). And as someone who at the best of times has a memory like a sieve, I have some trouble remembering much before my diagnosis. It was a long time ago, my life looked very different to now and I was a very different person. But there are some things that I miss…

• I miss my stomach not looking like a pin cushion
• I miss walking around the house with little on not having to worry about getting infusion sets caught on door handles
• I miss not knowing about carbohydrates
• I miss not having to stick fingers with a lancet dozens of times each week
• I miss drinking a glass of juice without considering the graph on my CGM
• (I miss not knowing what a CGM is)
• I miss not worrying about long term health complications
• I miss not feeling guilty about numbers, food, my actions
• I miss being able to leave the house with a tiny clutch bag
• I miss suitcases without diabetes supplies
• I miss knowing nothing about diabetes
• I miss not thinking about how what I was eating/doing/drinking/thinking impacts on numbers
• I miss stress just being stress and not meaning a spike in my BGLs
• I miss feeling healthy – or at least being seen as someone who lives with a health condition
• I miss not being different to my sister
• I miss not worrying that my sister will also get diabetes. And while my daughter wasn’t born when I was diagnosed, I miss the possibility of not having to worry that my daughter has inherited my faulty genes.
• I miss never being hypo

There are many blessings that have come from being diagnosed with diabetes – pancreatically-challenged friends, a great job, travelling the globe talking about diabetes. All of those things – I’d miss them terribly. But diabetes? No. That is the one thing that I wish I could miss.

What do you miss about your life before diabetes came along? Are you too young to remember?

I tell my story for many reasons – most of them selfish. Plus I’m an over-sharer and I like the sound of my own voice (in my head, for real, in 140 characters or less and any place people will listen to or read me).

But more than that, I tell my story (here, in social-media land, in interviews, at conferences) because I am trying to connect with others. I want to know how YOU deal with days you can’t get your BGL above 3.5mmol/l despite mainlining glucose (or the days you’re high for no reason and are shoving insulin into you like there’s no tomorrow).

No one has diabetes all worked out and no one is a pin-up child for this stupid condition. But everyone has their own story which is real, honest and something they are trying to make sense of.  Everyone has tips and tricks and ways to make diabetes more manageable. Everyone has tales of soaring highlights and terrible hardships. But not everyone wants to share them.

I am so blessed to be surrounded by friends who live with diabetes. Just walking into my office means I have an in-real-life support group of people with diabetes (see below). My gorgeous friend Jo is also my two-doors-down-neighbour. We have been known to share meters, strips, pump supplies and insulin. (We also tried to get our endo to buy the house in between us when it was up for sale, but for some reason she didn’t like the idea. Perhaps it could have been the suggestion that we remove the back fences so we could pop in for private consults whenever we felt like it.)

This is not, I now know, typical. The number of times I’ve met people with diabetes who act a little overwhelmed because it’s the first time they’ve been in the same room as another PWD. I know what that feels like! Even though I’m surrounded by people with diabetes, I still can’t help but get excited when I meet someone new with a faulty pancreas. DO YOU HAVE DIABETES TOO? SO DO I! HOW LONG HAVE YOU HAD IT? IS THAT YOUR INSULIN PUMP? HOW LONG HAVE YOU BEEN PUMPING? CAN WE BE FRIENDS NOW FOR EVER AND EVER AND EVER AND SHARE STORIES OF MIDNIGHT HYPOS AND THINGS THAT HAVE NOTHING TO DO WITH DIABETES TOO? is how I say hello. Once, I had to be restrained from throwing myself across a table at a café when I saw a man pull an insulin pump from his pocket to bolus for his morning fruit toast and coffee. ‘He may not want to talk about diabetes with you, Renza’, I was told. My response? ‘Of course he does. He just doesn’t know it yet.’

But the truth is that sometimes people really don’t want to talk about it with others. They hold their diabetes cards very close to their chest (I hold my insulin pump close to mine) and are not inclined to give out every private detail with complete strangers (or even their closest friends).

We need to make sure the quiet ones have a voice too and that the loud ones (that’s my hand you see waving in the air) are not seen as the only ones whose stories count.

You don’t need to be out there with your diabetes to have a voice. There are ways that you can silently make a difference. I just hope that everyone realises that their story and their voice is important and significant. And I also hope that no one thinks that reading the stories from the over sharers like me means that we have it all worked out. I know I don’t. And that senseless 18.9mmol/l my meter just threw at me after a lunch of no-carbs proves just that!

Today in the office…..