The Blue Circle

To me, the blue circle that is the symbol of World Diabetes Day is such a perfect representation of diabetes. It’s about diabetes awareness, diabetes unity and a symbol of hope. But the circle shape also represents some of the more difficult aspects of diabetes, too.

Diabetes is a cruel, cruel monster sometimes. There are many things about living with this condition that make me want to pick up my bat and ball and go home. (Or pick up my pump and BGL monitor, throw them in the bin and pretend I don’t have diabetes.)

For me, the cruellest, meanest, nastiest thing diabetes does is hypo unawareness as a result of a ‘great’ or in-range HbA1c. This is diabetes at its most mocking.

Many people who have lived with type 1 diabetes for some time will experience impaired hypoglycaemia awareness – for economy of language, let’s refer to it as we all do, hypo unawareness.

As someone who on occasion has experienced this, let me tell you that it’s terrifying beyond belief. It can be paralysing and makes me second guess every single diabetes decision I make. And those decisions add up to dozens each day.

So, how is hypo unawareness ‘fixed’? Well, it’s recommend that we remedy our unawareness by running our sugars a ‘little high – say 10 or 12’ for a few weeks and ‘avoid hypos’. I have always marvelled at this advice on a number of levels.

Firstly, the one thing I remember most about my diagnosis is the photos of amputated limbs, threats of blindness and dialysis, and being told I needed to have my kids before I turned thirty. Since that day, every time I see a double-digit number on my meter, I see an amputated foot. So, telling me to ‘run a little high – say 10 or 12’ isn’t a matter of accepting those numbers as just numbers. I see them as my toes falling off.

Also, surely, ‘running a little high – say 10 or 12’ is the same as saying ‘run your sugars a little perfectly – say 4 or 5’. If it’s as easy as picking a number and sticking to it, then surely we’d all just pick 5.5mmol/l and go with that all the time, posting each and every result to Facebook and Twitter.

And finally, the term ‘avoid hypos’ suggests that it’s an easy thing to do. Seriously, if it was that simple, I’m not sure too many people with diabetes would keep playing the blood sugar limbo that is ‘how low can you go?’

Often, the appearance of hypo unawareness coincides with periods of what is often termed ‘tight control’ – and often a ‘good’ HbA1c. Ah, the HbA1c – the number that manages to sum up a person with diabetes’ worth. How many people dread getting their A1c result? How many people avoid having their A1c checked because they are afraid of 1. the result and 2. the response this will elicit from their health professional?

My hand is waving highly in the air for all of those. I am terrified by that number. And I have an endocrinologist l who doesn’t attach a moral compass to numbers – to her, it’s a piece of information which we can work with. Nothing more, nothing less. (I do love her!)

But I have been trained to encapsulate my worth in that little number. When I was trying to get pregnant, it couldn’t be low enough for me; whilst I was pregnant it needed to be steady and unreasonably low, and now, to stop those images of complications flying into my head, it needs to be below 7%.

Is it? No, right now it’s not. The pat-me-on-the-back A1cs I achieved whilst pregnant were the result of extreme anxiety, checking my BGs around 15 times each day and responding to each and every number I saw. And seriously nasty hypo unawareness. Sure, I delivered a gorgeous healthy little girl, but for the whole pregnancy the number 11 not only meant ‘toe falling off’ but also ‘congenital deformity – bad mother!’

The frustration about diabetes is that the harder we work the more things we have to do. A great A1c often equals hypo unawareness which means ‘running a little high – say 10 or 12’ which means an increased A1c, which means complications….and so the circle of diabetes continues.

I know how this circle works, and what it means to me is that I can’t do ‘A’ (have a ‘good A1c) without it causing ‘B’ (hypo unawareness), the remedy of which is ‘C’ (run a little high) which will lead to ‘D’ (complications). When we are in the midst of learning about diabetes, the equation is never presented to us. Each letter is discussed in isolation, never as a result or cause of something else.

There has to be a better way. If only I knew what it was.