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*this is the most redundant blog post title ever.

Yesterday, I was invited to speak with the Roche Diabetes Care team at their annual meeting so they could hear from a real-life-walking-talking-person-with-diabetes.

The idea of the talk was about how I try to make diabetes – the most complex health condition in the world – simple. Which, as I pointed out at the very beginning, is laughable, because diabetes and simple are words that should never be in the same sentence.

I started by saying that the idea that diabetes is a simple mathematics equation with the factors energy in, energy out, insulin and current glucose level is wishful thinking. There is a lot more than those four factors affecting glucose levels. And thanks to diaTribe, I was able to show them a list of 42 of them!

And I explained that the 121 diabetes decisions I make every day are all my own responsibility, because, you know, we only get about 4 hours of time with our HCP team.

I’m sure there was nothing new in there for them. At least, I hoped that was the case.

‘To manage diabetes, I have had to wear many hats,’ I said, and then listed all the things I have had to become just to try to deal with diabetes. These included:

• A one-person multidisciplinary healthcare team – because my team are not – and should not – be on call to be 24/7.
• A mathematician – because I do use algebra every.single.day. And do fancy pants calculations.
• A detective – because somehow I have to sleuth my way through health advice from Khloe Kardashian and Dr Oz.
• A scheduler – because of the regular ‘check-up’ appointments, complications screenings, blood work and anything else that needs doing.
• Fluent in a new language – the language of diabetese.
• A technology geek – because of all the devices I have stuck to my body and reading to my phone need to be driven by someone. And that someone is me.
• An advocate – for myself firstly, and then became one for others too.
• An engineer – because I did, after all, build my own artificial pancreas (lots of disclaimers after that saying that really all I had to do was follow step-by-step instructions much the same as one does when putting together Ikea furniture with an Allen key).
• Thick skinned – to deal with everyone who wants to tell me what I should be doing better to better manage my diabetes.
• A data analyst – because there is fucking data everywhere.
• A negotiator – mostly negotiating with myself to try to do better.
• A word nerd – because #LanguageMatters (Also, I am incapable of giving a talk and not talking about language it seems…)
• A comic – because finding the funny side of diabetes is sometimes necessary o get through the day.
• A social media whore – because I have found my tribe, love them hard and because so many of them live on the other side of the world, we hang out in the cafes of Facebook and Twitter lands.

The thing about diabetes is that apart from being the very opposite of simple, the thing that all of us living with the condition know is that even those things that are meant to help streamline our management, often add to the complexity.

It was at this point, I spoke about technology. ‘I love technology. I love diabetes technology. I want to be the first person using things. I will jump on a diabetes tech bandwagon as quickly as I can,’ I said. ‘But the thing about technology, is that while it may make some things easier, it can also create more work.’

I spoke about the work insulin pumps can be – the need for very regular glucose checks, the needing to make sure there is enough insulin to last the day, changing sites and checking them for infection, feeling frustrated when there is a technology glitch. And of course CGM – as wonderful as it is – can be frustrating, beeping, alarming and causing nothing but angst.

The tech is great when it works, when it is doing what we need it to do and when we feel that we are able to operate it as best we can. That’s certainly not always the case. And it’s important for people to understand – especially the people who make the technology and are speaking about it – to know that.

That was the take home message from my talk. Well, that and a reminder that even with the myriad hats that I wear to try to manage my diabetes, the hat that is by far the most important is the one that I wear when I am with the people I love, doing the things I love….and that is never, ever diabetes.

Roche Diabetes Care invited me to speak at the meeting. They covered my flights and transport costs.

About a month ago, we needed a new Netflix series to binge on and Aaron suggested we have a look at ‘The Good Place’. I’m so glad he did. It was fucking forking brilliant.

I adored all the characters and one if my favourites was definitely the name-dropping, poor-little-rich-girl Tahani, played by the exquisite Jameela Jamil.

The other day, while trawling through Twitter for Oscars updates, I came across her extraordinary #IWeigh initiative and have become a little obsessed. Jamil started this all with a blog post following a truly horrendous – as in ‘what the fuck fork were they thinking’ horrendous – photo of the women in the Kardashian family with their weights superimposed over the top of them. The photo was shared on an Instagram account claiming to be about ‘fashion, beauty, lifestyle’ which apparently is code for ‘Your-life-is-not-good-enough-you-piece-of-shit.’. Who knew?!

Anyway clearly Jamil was unimpressed by this photo – not only that these poor women had been labelled by their weigh in kilograms, but then there was a discussion afterwards that included posters doubting the truth of the numbers given. Awesome, not only were these women being judged about the number they see on the scales, they were also being called out as liars.

I looked at the photo and I stopped seeing the faces of the Kardahsians (I’ll be honest – I wasn’t all that upset) and started seeing them as bathroom scales. Oh – the insta post got better: it asked followers to share how much they weigh, because that’s a metric that we are ALL comfortable sharing with an Instagram audience. (Hashtag fitspo/thinspo/any-other-damaging-spo.)

Jamil’s impassioned post called out the bullshit and begging that we stop defining a woman’s worth by her weight, posting a photo of how she weighs her worth:

This resulted in a rush on women listing how they ‘weigh’ themselves.

While I think many women could relate to what was going on here, add diabetes to the mix and we have it tenfold! In diabetes, we get judged by more than just our weight. We become defined in the eyes of some HCPs by all the numbers associated with our condition whether it be the snapshot BGL check we do in front of them, our A1c, our blood pressure, our CGM trace or even our time in range. The measure of who we are is in those numbers, as if a number can define who we are.

But just like women cannot be measured by their weight (stop it! No, seriously – stop it!) people with diabetes cannot be measured by any of our numbers. Because of course, we are always, always, always about much more than that average number.

I measure my weight as a person not in kilograms or pounds, but in the things that make me who I am. Some of those things weigh me down, others lighten me. But together, they define me and make me who I am.

I’m not sure if it is age, acceptance, or perhaps even an admission of defeat, but these days when I look at my body, I have come to own that it is broken.

I actually say this with a feeling of achievement – I don’t really feel sad about it anymore. I don’t look at it and wish the brokenness away. I don’t want to cry and dream of a day when it will be ‘all better’.

I don’t even really hate what it is anymore, and that is a huge shift from a few years ago.

I have also come to understand – and accept – a lot of those feelings of hopelessness and helplessness were tied up with my fertility, but it has always been more than that.

It has also been about feeling that I am not enough and that my body is not enough. I’m acutely aware of how limiting diabetes can be some days, even if I am the only one who truly knows it. And often, I am the only one who truly knows it. Because my diabetes, by its very nature, has been easy to conceal.

The invisibility of diabetes doesn’t really make sense when it is your body it’s hiding away in. While my diabetes may be shrouded in a cloak of invisibility to everyone else, to me it may as well be covered in glitter, lit by neon and be accompanied by a marching band. There are days it’s all I ever see and all I ever feel.

The confusing thing is that while it has always been so obvious to me, I’ve tried to hide it away from everyone else. Clearly, I don’t mean I’ve tried to hide away the fact that I live with diabetes (exhibits A – Z: this blog/my job/talking endlessly about living with diabetes to anyone who will listen and those who won’t… etc.), but I certainly have frequently tried to hide away how it impacts my daily life.

Some periods in the last (almost) 20 years, diabetes has been harder to hide. Other times, it’s easier. It certainly has been easier since I’ve been Looping because overall, living with diabetes has been easier.

So when something happens that reminds me of just how difficult it can be, it is like a bolt of lightning.

A dodgy sensor on Saturday meant that I wasn’t Looping for most of the day, and that, combined with a shitty chest infection, resulted in some horridly high glucose levels – the highest I’ve seen in over six months. It hit me for six as the limitation of diabetes reared its ugly head. I tried to hide it until the waves of nausea started crashing over me and I took myself home and lay on the couch waiting for it to subside.

But as I dealt with it, I did something I wouldn’t have done in the past. Instead of denying there was anything wrong, or trying to blame anything else I could point my fingers at, I admitted just what it was: it was diabetes.

My broken body is my diabetes body. And it’s all I have. I can’t have one without the other. I may be lucky enough to be able to say that by and large I can manage to keep it in a place I’m happy with. But it is undeniable that there are times I cannot. We can’t always fix what is broken, but we can work around the brokenness. That’s what I do. Every single day.

Broken denim on my broken body. 

Recently, I spoke with someone who had been diagnosed with type 1 diabetes about twelve months ago. A mutual friend had connected us.

‘How long have you had diabetes?’ That was her first question.

‘Almost 20 years,’ I said.

‘I’m really struggling. Will I move on and get over it?’

I wish I had been able to say something to ease her anxiety. Instead I just nodded and told her she would be okay.

But I haven’t been able to stop thinking about that question.

Because, the truth is, I don’t think we do move on. I don’t think we do get over it. We move through it. We learn to get through it, but it’s a chronic health condition and it never, ever goes away.

I went through some tough times a few years ago and I remember a conversation with a friend who was a great source of comfort to me. ‘When does this awfulness stop? When does it go away?’ I asked, tearily, one day.

‘It doesn’t, but it will get easier. Think of it like this… You’re in your car and you’ve just driven past a horrific car accident. You can’t stop, you have to keep driving, but you are driving very, very slowly because there is a lot of traffic backed up. You’re shocked and can’t believe what you have just seen. It’s gruesome. You look in the rear view mirror and you can still see it – all the details, all the goriness, all the pain.

You can’t help but keep checking the mirror. Every time you do, you feel the horror of what you saw, but the accident is a little further away in the mirror’s reflection, so the detail of what you are seeing is a little less.

After a while, all you can see are some flashing lights and a crumpled mess, but no details – it’s starting to be a blur and the shock and pain you felt is starting to numb.

And then, eventually, after a long time, you look back and you see nothing. You’re on the open road, going about your driving, and all you see behind you is road and other cars. But you still think about what you saw. You still have flashes of it. You still remember it.

It doesn’t go away – you don’t get over it. But you got through it. And your life will be forever changed by it. But it will always be there.’

I remember being incredibly reassured by this analogy. And it was actually so true. The pain I felt did wane – I never forgot it and I’m not ‘over’ it. But it is far more distant in my rear view mirror now and eventually, it may completely disappear from view. But it is still part of my memory bank.

I’d never applied this way of thinking to diabetes – that analogy belonged to a time of incredible and quite acute emotional pain – but it actually is perfect for diabetes too.

I wish my response to my new friend’s question was simply: ‘I don’t think that I have moved on from diabetes; I don’t think I am over it. But it is easier today than it was twenty years ago. And every day I move through it, and I get through it. I hope that gives you some comfort.’

I look at those who have gone before me and those who are living a diabetes life alongside me and I see us all moving through it. Some days are harder, some days are easier. But we keep moving. We move through diabetes. As best we can.