Back in 2012 when we were thinking of starting the #OzDOC weekly Twitter chat, Kim, Simon and I were committed to making sure that it was a safe place, welcoming to all who wanted to use it. We encouraged people to actively participate, lurk in the background, jump in and out as they needed.

I had always been so impressed with the non-toxic and inviting place the #DSMA chat was, welcoming people with all types of diabetes as well as a few health care professionals, and I hoped that we could replicate this environment, albeit on a smaller scale, with #OzDOC.

Pleasingly, that’s the way it started and now, it continues to be that way. While I’m no longer involved in the running of OzDOC, or moderating its weekly chats, whenever I do drop by to participate, it is clear that the safe and inclusive model that formed its foundation continues.

It has been great to see that the encouragement of healthcare professionals to join in – lurk at first to get the idea and then respectfully participate – has continued, and frequently, a DNE or dietitian or endo will pop in and contribute.

But last night, during the chat, there was an intrusion that was not respectful. In fact, I likened it to someone bursting, uninvited, into my house and yelling that they didn’t like the way we’d decorated it and then offering to fix it as long as I paid them. I bristled immediately. And felt protective of the people in the #OzDOC room who had been so candidly and honestly sharing their thoughts.

This was a particularly delicate chat. Ashley had more than expertly navigated the sometimes tricky waters of a discussion about the place diabetes fits in our lives, and ended the chat with a question about burn out. It is a testament to the space that is #OzDOC to just how candid and honest people were in their responses.

So, the idea that someone tweeted something about how so many participants were clearly living with ‘out of control’ diabetes and then linked to her fee-for-service website, was not only inappropriate, but also insensitive, thoughtless and showed a true lack of understanding of what people with diabetes are dealing with.

My mother hen instinct kicked in. I had just laid myself bare as I used words that describe burn out to me, and others had as well. This was absolutely not the moment to promote a business and, at the same time, tell people they were doing a crappy job at managing their diabetes. And there is no place for judgement in this chat, especially from someone so clearly out-of-touch.

While my response was somewhat reflexive and probably could have done with a moment away from the keyboard before hitting the ‘tweet’ button, I don’t regret that I did it. And the responses from others in the chat suggested they too were feeling uncomfortable about the intrusion to the discussion.

I was furious that someone had so aggressively and judgementally invaded the safe space that has been so carefully cultivated. ‘Out of control’ diabetes? Really? Fuck off. (Actually, that was the response I wanted to type, but kept myself nice, so maybe I wasn’t as harsh as I thought.)

My concern about this intrusion was twofold. Primarily, I would hate for any person with diabetes to feel afraid of participating in any sort of peer-based activity for fear of being judged. We get enough of that outside of the spaces we create for ourselves and certainly shouldn’t have it forced upon us in our own groups.

But also, I would hate for any HCPs to think that they are not welcome to participate. They most certainly are, however the respect, lack of judgement and kindness expected by participants is expected of everyone. If they are unable to demonstrate that, stay away.

I’m not naming and shaming the person who tweeted last night. The tweet has been removed anyway. But, I would absolutely encourage them to come back next week and the week after and the week after that to learn. Watch what goes on in these chats, listen to what people are saying, understand the real-life sensitivities of diabetes.

And then, feel free to softly, softly join in. Respectfully ask questions (after asking if it is okay to ask questions) if there is something that needs clarifying. Gently share ideas that may be of benefit. But absolutely do not try to sell something. And check your judgement at the door.

no-judgement

Sometimes, I’m a lousy person with diabetes (PWD). I am thoughtless and unclear about what I need, have ridiculous expectations of others – and myself, and am lazy. But I’m not always like that. And I think I know what I need to do to be better.

Being a better PWD is about being true to myself. It is also about reflecting on exactly what I need and I hope to get it.

  • I need to remember that diabetes is not going away
  • I need to remember that the here and now is just as important as the future
  • I need to remember that I don’t have to like diabetes, but I have to do diabetes
  • I need to remember that the diabetes support teams around me really only have my best interest at heart, and to go easy on them when I am feeling crap
  • I need to empty my bag of used glucose strips more frequently to stop the strip glitter effect that follows me wherever I go
  • I need to remember that it is not anyone else’s job to understand what living with my brand of diabetes is all about
  • I need to remember that the frustrating and tiresome nature of diabetes is part of the deal
  • I need to be better at changing my pump line regularly
  • I need my diabetes tasks to be more meaningful – quit the diabetes ennui and make smarter decisions
  • And I need to own those decisions
  • I need to see my endocrinologist
  • I need to decide what I want to do with my current diabetes technology. There is nothing new coming onto the market that I want, but what about a DIY project to try something new? #OpenAPS anyone…?
  • Or, I need to work out how to convince the people at TSlim to launch their pump here in Australia
  • I need to check and adjust my basal rates
  • I need to do more reading about LCHF and decide if I want to take a more committed approach or continue with the somewhat half-arsed, but manageable and satisfactory way I’m doing it now
  • I need to remind myself that my tribe is always there and ask for help when I need it.
  • I need to make these!

And being a better PWD is knowing what I need from my HCPs and working out how to be clear about it, rather than expecting them to just know. (I forget that Legilimency is not actually something taught at medical school. #HarryPotterDigression)

So, if I was to sit down with my HCPs (or if they were to read my blog), this is what I would say:

  • I need you to listen
  • I need you to tell me what you need from me as well. Even though this is my diabetes and I am setting the agenda, I do understand that you have some outcomes that you would like to see as well. Talk to me about how they may be relevant to what I am needing and how we can work together to achieve what we both need.
  • I need you to be open to new ideas and suggestions. My care is driven by me because, quite simply, I know my diabetes best. I was the one who instigated pump therapy, CGM, changes to my diet and all the other things I do to help live with diabetes
  • I need you to understand that you are but one piece of the puzzle that makes up my diabetes. It is certainly an important piece and the puzzle cannot be completed without you, but there are other pieces that are also important
  • I need you to remember that diabetes is not who I am, even though it is the reason you and I have been brought together
  • And to that – I need you to understand that I really wish we hadn’t been brought together because I hate living with diabetes
  • I need you to remember that I set the rules to this diabetes game. And also, that there are no rules to this diabetes game
  • I need you to understand that I feel very fortunate to have you involved in my care. I chose you because you are outstanding at what you, sparked an interest and are able to provide me what I need
  • I need you to know that I really want to please you. I know that is not my job – and I know that you don’t expect it – but I genuinely don’t want to disappoint you and I am sorry when I do
  • I want you to know that I respect and value your expertise and professionalism
  • I need you to know that I hope you respect and value mine too.

And being a better PWD is being clear to my loved ones (who have the unfortunate and unpleasant experience of seeing me all the time – at my diabetes best and my diabetes worst) and helping them understand that:

  • I need you to love me
  • I need you to nod your heads when I say that diabetes sucks
  • I need you to know I don’t need solutions when things are crap. But a back rub, an episode of Gilmore Girls or a trip to Brunetti will definitely make me feel better, even if they don’t actually fix the crapness
  • Kid – I need you to stop borrowing my striped clothes. And make me a cup of tea every morning and keep an endless supply of your awesome chocolate brownies available in the kitchen
  • Aaron – I like sparkly things and books. And somewhere, there is evidence proving that both these things have a positive impact on my diabetes. In lieu of such evidence, trust and indulge me!
  • I need you to know I am sorry I have brought diabetes into our  lives
  • I need you to know how grateful I am to have you, even when I am grumpy and pissed because I am low, or grumpy and pissed because I am high, or grumpy and pissed because I am me.

Today is my first day back at work. I spent the weekend preparing for the day by sitting in the sunshine, drinking coffee, deadheading rose bushes and switching back on the part of my brain that thinks about work. And remembering how to walk in high heels.

The new year looms ahead. It’s huge. There are things to finish from last year and lots of new projects waiting to begin. And starting fresh with a clean slate and thinking strategically about how to get things done is important.

I don’t really do New Year’s resolutions. I’m lousy at committing to anything remotely healthy, so there is no point in trying to promise to do something that I’ll do for two days, then stop doing and then feel bad at myself for not doing it anymore.

I don’t really want to use the New Year to focus on diabetes by concentrating on particular tasks or specific measures. Outcomes seem to be organic and setting goals, while a noble gesture, often lead to disappointment. Feeling like a failure is not how I want to begin the year!

But I do like the idea of embracing the New Year and cracking open its spine, revealing clean pages and new beginnings.

Australian writer and publisher, Mia Freeman, shared that last year, she came up with a word that would help draw her attention to her plans for the year ahead, and has done the same for this year.

I like this idea – the thought of having some sort of directive that would be an overarching theme for decision making and planning, and would, hopefully, mean that I ended the year feeling a success rather than just a shattered and weary mess.

Because I have found myself pretty exhausted at the end of the last few years. I know everyone is – we get to a point where we are just done and need a break. I felt as though I was burnt out with life when I went on leave, and the much needed holiday was about getting back to a place where I felt I could tackle what lay ahead.

With this in mind, I wanted my word to help me avoid that burn out, so that come the end of the year, the exhaustion I felt was not so overwhelming.

So, I spent some of the time we were in New York auditioning words, trying them out, rolling them around on my tongue and hearing them in my mind, thinking what they could mean for me throughout 2017. As I walked around the snowy streets, I projected how I wanted to feel at the end of this year and what I would need to get there.

The word I have settled on is pause.

As soon as I said it, I knew it was the right word. I wrote it down, over and over, thinking about how it could shape and help plan my year. I wrote it on scraps of paper and shoved them into my purse and handbag to remind me. And the minute I walked into my office this morning, I wrote it on a post-it and stuck it to my wall.

Pause doesn’t mean that I will be stopping anything I’m doing. It doesn’t even necessarily mean I’ll be cutting back. But it does mean that before committing to anything new, continuing with something old or exploring different ways of doing things, I will pause and think about why and how I am doing it.

The tendency to simply say yes to everything serves no one – the results are me not doing things as well as I might like or feeling disappointed with the end result.

I also am seeing how I can adapt the word to suit my diabetes management. I think that too often, I am on autopilot, not really thinking about what it is that I am doing. To pause means giving meaning to actions, attention to decision making and focus to the way I choose to manage my diabetes. Jumping on a bandwagon because it has been written up in a few different diabetes magazines – without pausing to consider if it is right for me – really makes no sense. I am very guilty of wanting, needing the latest toy without necessarily stopping to think if it will serve any purpose.

There is already a lot in the calendar for 2017 – all the way through to its end with the IDF’s World Diabetes Congress rounding out the busy year in December. I’m the Deputy Stream Lead for the Living with Diabetes Stream, so there is no chance of slowing down as the year winds down.

So, with all this in mind, my word for the year is going to help shape how I approach things. I’ll have to see how it goes and I expect I’ll need to pull myself back at times, reminding myself to stop, think and, perhaps, wait. And then, as I pause, take the time to let things sink in, catch up and take shape.

On 11 January in 1922, a 14-year-old boy in Toronto was given the first insulin injection to treat diabetes. His name was Leonard Thompson, and he lived for another 13 years, before dying of pneumonia when he was 27 years old.

When he was given insulin for the first time, Leonard was on the only treatment available at the time for those diagnosed with type 1 diabetes. He was on a starvation diet, and he was close to death, drifting in and out of a coma because of diabetic ketoacidosis.

There are dates each year that trigger reminder lessons in the discovery of insulin. On those days, I say a silent thank you to Banting and Best for their work, grateful to them for my life and I peek into my refrigerator at the vials of insulin within easy reach for when they are needed.

But I also feel a great sense of sadness and frustration, because today, ninety-five years after Leonard Thompson was given his first insulin injection, this miracle drug is still inaccessible to so many people with diabetes. And people are dying, suffering in the way that Leonard was before he was given the drug for the first time.

Yes, I said ‘suffering’. And I don’t use that word. I don’t suffer from diabetes – I live with it. But make no mistake, someone who cannot access insulin and is dying from diabetic ketoacidosis is suffering. They are in pain; their body is in distress. They are dying.

The playing field is so un-level and that is simply not fair. So if you are able to – if you are one of the fortunate ones with insulin in your fridge, please do consider donating to those who are not.

Insulin for Life Global needs donations to fund transport costs for delivering insulin to those most in need. AUD$12.50 will cover the cost of sending two weeks’ worth of insulin.

Around Valentine’s Day each year, Spare a Rose, Save a Child suggests sending 11 instead of 12 roses. The AUD$6 saved provides insulin for a month to child with diabetes through the IDF’s Life for a Child program.

And for AUD$10, T1 International will send out their advocacy toolkit to five people with type 1 diabetes, providing information about how they can stand up for their rights.

Click image for source

(Click image for source)

 

My darling friend, Annie.

My darling friend, Annie.

On the last Tuesday of 2016, I stood on a street corner in New York squealing in delight, and without an ounce of shame, jumped up and down hugging my dear friend Annie, tears of joy forming in our eyes. We had finally pulled off a meeting of our two clans. It took our family to travel from Melbourne and hers from a couple of hours outside London, but we did it.

Once we remembered that there were other people on the street, we set to introducing our families to each other. Our husbands shook each other’s hands, and our girls shyly greeted each other with hugs. That was the last moment of shyness for the rest of the week.

Our families have had a week of being tourists in the most wonderful city in the world. We looked at the Manhattan skyline from across the Brooklyn Bridge; we soared to the top of the Rockefeller Building, gazing across the city as the sun started to set from dozens of stories above the ground; we sat in cafes, warming up on coffee and hot chocolate and wonderful conversation; we wandered through Central Park as snowflakes started to fall, the girls unable to believe their luck as they ran with their arms outstretched catching the snow; we saw in 2017 standing in Central Park with fireworks exploding over our heads with the promise of a new year. And throughout it all, diabetes was managed by those of us who wear our pancreas on the outside of our bodies – but didn’t for a moment affect the time we were having.

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Annie and I know each other because of diabetes. She is mother to three extraordinary girls, one (Pumplette) who happens to have diabetes. I’ve linked to her blog many times here, and if you’ve not popped by yet, please do!

We often spoke about how wonderful it would be to introduce our families – although we did have some concerns at our girls actually being able to discuss their neglectful mothers who, it seems, abandon them at the drop of a hat to rush off to some diabetes conference or another.

We made it happen this week, and our girls barely paused for breath, chatting constantly, getting excited at all the city has to offer and amusing themselves with endless rounds of Banagram. Our kidlet was thrilled to have three new friends and couldn’t get enough of spending time with them.

Friends for life.

Friends for life.

And then tonight, after a last meal, we said goodbye. As we rode on the subway from the restaurant to our apartment, the tears started. And  they continued as Annie, her husband and their beautiful three girls left our apartment for the last time to head back to their own. Our kid and Pumplette had not let each other go since leaving the restaurant and parting was particularly hard for them. They had really hit it off – in the same way that their mothers had. I watched my girl with Annie’s girl and knew that she had made a friend for life.

We closed our apartment door. Annie and her family headed for the elevator and I sat next to our kidlet on the couch as floods of tears started. I hugged her tight, promising that it would not be the last time that she saw the girls. I reminded her that Annie and I live on opposite sides of the world and are in contact all the time – that we speak and message and FaceTime frequently.

And I reminded her how wonderful it was that as 2016 ended and 2017 started she had made three wonderful new friends. She nodded and wiped away her tears. ‘I miss them already,’ she said. And I nodded too. Because I understand how that feels. I know the elation of seeing friends from far flung places and then, when saying farewell, not knowing when we will see each other again. But the beauty of it is that while it hurts to say goodbye, there is an endless promise of saying hello again. And I assured it that she would say hello and hug those girls again. Many, many times.

Happy New Year, everyone!

Seeing in the New Year.

There is so much around at the moment that I wanted to write about properly. But it’s holidays and there is champagne and my kid made brownies with toffee popcorn on top and the neighbours came over for drinks and didn’t leave and I need to pack to go to New York.

So here are some links for some holiday reading.

THIS piece

The title of this piece sure seems to have riled up some people, but bloody hell, just read it. Anna Floreen, who is pretty damn awesome, has written this fabulous piece, sharing her experiences of going through the teen years with diabetes. A must read for parents of kids with diabetes to get some insight into what young people think about dealing with diabetes.

THESE biscuits

These have become my holiday favourites this year and I’ve made about 4,326 batches of them! Four ingredients, super-dooper easy, delicious and look impressive. Plus, they are gluten free, so great as a gift for friends with coeliac disease. What more could you want?

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I’ve had the recipe for them scrawled in my recipe book for years – I can’t remember where I first copied it down from – and this from the New York Times is pretty much how I have been making them.

THIS news

Great update about the work Ed Damiano is doing on the Bionic Pancreas just published in The Lancet. The study has shown some pretty exciting results. It’s getting close – really close – and that is just so damn exciting! Maybe we can out one on our Xmas lists next year…

THIS study

If you are a young woman (aged between 16 and 25 years) living in Victoria, Australia, you can take part in a women’s health study, which is looking at the relationships between lifestyle behaviour, physical health and mental wellbeing.

You’ll be reimbursed for your time, so get involved! All the details are here.

THIS poorly worded sign

For the love of all that is good: proof read, people. Please, proof read!

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THIS good news

Great news from the Australia Diabetes Society who has just released a new position statement about scuba diving and diabetes, recognising that motivated individuals with well-controlled diabetes (both insulin-requiring and non-insulin requiring), may be able to safely participate in recreational diving.  

THIS story

You know, there are some people in the DOC world who are worth their weight in gold. Lou Vickers is one of them. Read her story here.

THIS (slightly old) article

This piece, from Dr Katherine Barnard and Dr Jill Weissberg-Benchell, was published just after ATTD this year (back in Feb) and provides comment on the relationship between diabetes technology and psychosocial aspects of diabetes. A very interesting read, especially considering the way DTech is moving!

THIS position statement

 The National Health and Medical Research Council and the Consumer Health Forum of Australia have released a revised statement about the involvement of consumers in health and medical research. 

THIS time of year

So, we’re heading off for a couple of weeks and I’ll occasionally be checking in, but probably not much as we’ll be spending a lot of time trying to keep warm on the cold streets of New York.

Thank you so much for reading, commenting and sharing Diabetogenic this year. The love and support I constantly am afforded by people who read posts here is astounding and makes living with diabetes that little bit easier. I wish I could adequately say just how grateful I am.

I’m looking forward to an exciting 2017 – there is already so much on the horizon with exciting projects, collaborations, activities and plans being hatched. It’s shaping up to be a very busy year, so I’m looking forward to a little downtime over the holiday time.

Season’s greetings to you all. I hope you manage some rest, relaxation and quiet reflection in the coming weeks. I’ll see you in the New Year.

Season’s greetings from my clan to yours.

It’s day four of holidays for me. Already lazy mornings, easy days and gentle plans to meet up with friends and family are clearing my mind, and I can feel the backlog of stress and exhaustion – the things that are part of everyday life – start to make way for sharp thinking and smarter decision making.

And in terms of diabetes this means more attention paid to alarms and alerts on my various devices: the calibration alert on my phone for my CGM gets attended to immediately, the low cartridge reminder on my pump is heeded at the first warning. I stop and think before blindly acting, and calmly troubleshoot as I go along.

My head is clearing. I am starting to think about diabetes the way I like, at a level that feels safe and sensible and manageable.  I make rational decisions; I take the time to fine tune what I am doing. Diabetes has a place that is comfortable, I feel better overall and far more capable of ‘doing diabetes’.

miles-study-2-logo-hires-land-colour-e1426127802906Earlier this week, the findings from the Diabetes MILES-2 study were launched. (Quick catch-up: MILES stands for Management and Impact for Long-term Empowerment and Success and is the work of the Australian Centre for Behavioural Research in Diabetes (ACBRD). The first MILES survey was conducted back in 2011, with over 3,300 Australians with diabetes taking part. The MILES Youth Report was launched in 2015, reporting the experiences of 781 young people with type 1 diabetes and 826 of their parents. This study formed part of the NDSS Young People with Diabetes Project for which I am the National Program Manager.)

The MILES reboot (Diabetes MILES-2) once again provides a snapshot of the emotional wellbeing and psychosocial needs of Australian adults living with diabetes. Over 2,300 people participated in this study and the results are comparable to those from the first MILES study. The Diabetes MILES-2 survey included the addition of some issues that had not been investigated in MILES, such as diabetes stigma.

Some key findings from the report include:

  • 17% of survey respondents had been diagnosed with a mental health problem at some point of their life
  • The respondents most likely to experience moderate-to-severe depression and anxiety were those with insulin treated type 2 diabetes
  • The respondents most likely to experience severe diabetes distress were those with type 1 diabetes
  • The aspects of life reported by all respondents as being negatively impacted by diabetes included emotional well-being (for those with type 1 diabetes) and dietary freedom (for those with type 2 diabetes)
  • More stigma was experienced by people with type 2 diabetes using insulin as compared with people with type 2 diabetes not using insulin

Anyone affected by diabetes knows that the psychological and emotional side of diabetes is as much a part of the game as the clinical tasks. In fact, for me, it is the most difficult to deal with. What’s going on in my head directly affects how the I am able to manage the practical side of the condition.

When my head is clear – the way it is slowly, but surely becoming as I settle into holiday mode – and I have time and space to rationally think about, and focus on diabetes, the routine tasks seem manageable. The numbers present as nothing more than pieces of information: they allow me to make decisions, act, or not act. I am able to be practical and seem to have my act far more together.

But for the most part, diabetes is not like that for me. I don’t manage my diabetes the way I want and that is mostly because I am simply unable to due to the distress and anxiety I feel about living with a chronic health condition that terrifies me a lot of the time. I feel overwhelmed and, in the mess of life, diabetes becomes impossible. I am not proud of this – but I am honest about it.

If I am perfectly truthful, there is nothing in this report that surprises me. But it does provide validation for how I am feeling – and how many others with diabetes are feeling too. And I am so pleased that there is evidence to support what so many of us who live with diabetes feel.

It’s no secret that I am a very big fan of the ACBRD’s work. Diabetes MILES-2 once again shines a light on the ‘other side’ of diabetes and serves as a reminder that unless the psychosocial side of living with this condition is addressed, we simply can’t manage well the physical side. And it forces those who want to believe that diabetes is a matter of nothing more than numbers and mathematical equations to consider the emotional wellbeing of those of us living with diabetes each and every day.

The MILES 2 report can be read online here.

 

He’s back! The Grumpy Pumper has returned to Diabetogenic to share some of his wisdom and wit. If you’ve ever wondered what a Grumpy Xmas looks like, here you go!

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It’s almost bloody Christmas again.

A time for joy and happiness.

I hate it!

I remember Christmases before I was diagnosed:

Turkey dinner

Beer

Mince pies

Beer

Cake

Beer

Whiskey

Chocolate

Whiskey

Whiskey…

But now I have Type1 Diabetes!

So how does Christmas look now?

Turkey dinner

Beer

Mince pies

Beer

Cake

Beer

Whiskey

Chocolate

Whiskey

Whiskey…

I’m not going to let some condition that I just happen to have ruin the bits of Christmas that I actually like.

A few more BG checks to keep an eye on progress.

A bit more insulin when needed.

Then repeat for New Year’s Eve.

So whether you will be waiting for Big Ben to give you a bong, or your balls to drop in Times Square, enjoy Christmas. Here’s to 2017. And bollocks to ‘betes!

Live long and bolus,

Grumps

Festive as ever.

Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here

Christmas is a mere week and a half away and as I write and rewrite my list of gifts that need buying (seriously – you’re all getting book vouchers!), I’ve decided to think about what gift I’d like for myself. (Apart from a skirt I impulse bought the other day, justifying the purchase by calculating cost per wear, the number of times I would wear it between now and the New Year and how it is totally trans-seasonal. And now I hate myself for being a person who says ‘trans-seasonal’.)

Anyway, here’s the letter I’m writing to the diabetes god…angel…devil…Santa…Satan… whatever, with a list of all the things s/he could rustle up for me.

Dear Diabetes Deity

So, with Xmas looming, I thought I’d make it easy and write to you with a list of exactly what I need. Don’t bother wrapping any of them. Just deliver under the tree (or as required) on Xmas morning for squeals and girly-claps of excitement and gratitude.
Also – what do you like to eat? Help yourself to the cookies, milk and carrot sticks. But I figure that you would probably like something more difficult. Like, I don’t know, the flesh of a recently risen from the fire phoenix marinated in the tears of a newborn unicorn. Please send me:

  • Working beta cells. Look, if you could manage to just deliver me a small packet of rejuvenating beta cells that will make their own insulin, that would be awesome. And some easy, DIY way to get them situated into my body – maybe think Alice in Wonderland for inspiration.
  • Also – I’ll need some ‘turn off immune reaction serum’ (happy to take it in tablet form, or even an injection because I’ve become accustomed to sticking needles into my skin) to stop my stupid body from attacking the new working beta cells.
  • As the first two are completely unlikely (which would suggest your ‘deity’ status is completely unworthy), a gift from the fairies at Poppy Medical would be most welcome. And then maybe I’d start wearing a medic alert bracelet, although no promises. (For the record, this is the one I like best…)
  • I found my last bottle of Glucolift glucose tabs hiding in a drawer the other day and nearly wept. It’s my last bottle and I need more. Please send more.
  • This necklace, because I reckon just the thought of the sugar in a slice of fairy bread, a Bubble-o-Bill ice-cream, Golden Gaytime ice-cream and iced vovo biscuit will save me from ever going low again. (Disappointingly it’s currently out of stock, but I found this one. And you bet I bought it…)
  • A personal diabetes fairy/assistant to take care of scheduling all appointments, health checks, purchasing of diabetes supplies, ensuring prescriptions are up-to-date and current, ordering and collecting insulin, reminding me when I need to to a set change, refilling low supplies and any other ‘I have to do this for the rest of my life’ diabetes tasks for…well…for the rest of my life. Or until there is a cure. Either / or.
  • My low symptoms. It would be really, really, really, really awesome if you could find where they’ve been hiding and return them to me so they can get back to alerting me of impending hypos.
  • The correct carb count for every single food I ever intend to eat for the rest of my life. And the insulin dose to match it perfectly each time!
  • Sleep. Uninterrupted.

I think that’s it.

Oh wait. There is one more thing: Insulin. Lots of it. But that’s not for me, actually. It’s for all the people around the world who cannot access and afford it. Could you just bundle up a year’s worth for everyone and leave it in an insulated pack for them to find. In fact, if you can manage that one, don’t worry about the rest of the list.

Except maybe that necklace

Much love and festive cheer,

Renza signature

I picked up my phone for the fourth time in about three minutes before I realised I was doing it. The reflex-like action was a command from my mind, telling me it was time to check my Dex app. And so, quite dutifully, I was. I picked up the phone, opened the app and looked at the number staring back at me. But the number was not registering at all.

I was distracted and in the midst of editing an article at work, but knew that I should get a look at what my number was at that moment.

After the fourth time of checking, but the number not sinking in, I paused, shook my head and focused: phone on, app open, look at number, register. Nice steady line, steady in range number. No action required. I put down my phone and went back to my editing.

I look at my phone dozens of times a day for diabetes purposes. I look at the number and most of the time, I think about what it means and then either act, or don’t. At the moment, it’s not registering a lot of the time. I’m tired, it’s the end of the year and my thoughts are drawn a lot to the Wintery Streets of New York where we’ll be in two short weeks. I’m frantically trying to tie up loose ends so I can start the work year afresh.

I’m missing the occasional bolus for the same reason, my preoccupied mind not remembering to give a little insulin for my morning coffee or the (significant amount of) icing I licked off my fingers after decorating Xmas cookies. And it’s taking longer than usual to register this forgetfulness, meaning numbers higher than I’d like for longer than I’d like.

We’re all weary now. The year is long and by December many of us feel like we are barely limping to the finish line. I am in denial about how few days there are until Xmas because the number of presents under the tree can be counted on one hand…and I am from an Italian family with a million or so gifts needing to be purchased. (At least the tree is up and the house looks festive…)

But the diabetes tasks are always there and always need to be done – all the time. The relentlessness of what needs to be done doesn’t increase in December, but for some reason, the way I respond has become less meaningful. There is a level of mindfulness missing from my diabetes thinking. I don’t think I’m being complacent – it’s not that I’ve stopped any of the self-care – but I am certainly less attentive.

It’s like when you walk into a room and can’t remember why you’ve gone in there, or open a cupboard and have no idea what you wanted to grab from the shelf, staring at the jars and tins clueless-ly – a kind of mindless and mechanical action, knowing there was a planned outcome, but you’ve no idea what it was anymore.

I’ve been reaching for a name for this feeling. It’s not as overwhelming or scary as the burnout I’ve experienced in the past. It’s distraction and boredom, my mind quick to dash to other thoughts, forgetful and absentminded.

Maybe inertia is the word. Or torpor. Or perhaps ennui. Yes! Ennui! Is diabetes ennui a thing, because that is exactly how I am feeling today as I reach for my phone. To check my number…Again…

Read about Renza

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