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Look, I could write a whole post here about why and how you can just put aside the idea of buying silly little Xmas gifts for Lois in accounting, and how Reginald in HR really doesn’t need more boxes of Lindt balls because people only truly like one type (dark chocolate for me) and the rest get thrown out.
I could remind you that it’s freaking hot in Australia right now, so the idea of gifting a rose, basil and chai scented candle is ridiculous because why would anyone want to light it and add another heat source to their already overheated house? (Also, stop making candles scented with chai.)
I could moan about how I despise the whole idea of Kris Kringle/Secret Santa, because honestly, I do. It’s nothing more than a waste of time and money.
I could tell you that I am pretty sure that the $30 gift voucher you are thinking of shoving into an envelope for Uncle Angelo is going to languish in a drawer and probably be forgotten.
I could tell you that the book of inspirational quotes that you are going to buy for the cousin you only see once a year will never be opened – and probably be re-gifted (possible back to you) next year.
You know, so I don’t need to tell you, that the half-wilted poinsettia you’re buying at the last minute at Woolies as a gift for the person hosting one of the three hundred Xmas drinks things you’re going to will wind up in the bin after the next three-day heatwave because your host can’t remember to water themselves, much less a seasonal plant.
I could urge you to put down the bath bomb because no one, and I mean NO ONE, needs or wants a bath bomb.
I could do all these things. But there’s no need; I’ve done it before and you know it all. If you really need to read those posts: here’s one. And here’s another. And Grumps has written about it here.
Basically, the message is the same. Think about forgoing those little gifts, and instead make a donation to Life for a Child, and know that THIS gift is actually meaningful. And by meaningful, I mean it will save the life of a young person with diabetes. That’s right: Save. Their. Life.
Insulin is expensive. And yet the dollars you were going to spend on a pretty mindless gift will provide life-saving insulin for around six months. Which sounds a lot better, right?
Good thing you know all this, and I don’t need to write about it again. And it’s also a good thing that you know all you need to do is click here to save a life.
P.S.
On Monday morning, I was invited to an event at the Novo Nordisk facility in Malov to hear about the latest in diabetes and stem cell research. (Disclosures at the end of the post as always.)
We heard from researchers from the site, as well as Sanjay Dutta from JDRF, and were given a tour of the labs to get a better understanding of the research process. Going into this event, I knew very little about stem cell research and its application in curing diabetes. (I should point out I still know very little…) Before I write more, I do want to highlight that the ethical sensitivity of stem cell research was addressed, although was not a focus of the event. It is undeniable that there are some people who refuse to accept stem cell research, or any treatments that come from it. I am not one of those people, but I was pleased to see the researchers acknowledging that this is an issue for many people around the world.
One of the speakers was Novo researcher Louise Winkel who gave a fantastic overview of stem cell research and how it applies to type 1 diabetes. If Louise was a senior school biology teacher, her students would all go on to study science at tertiary level. She made it interesting, understandable, and translated just what this very technical area of research could mean to those of us living with diabetes.
Jacob Sten Petersen shared how he has been working with Novo in diabetes research for 27 years. That’s a lot of time examining and investigating type 1 diabetes, trying to get a better understanding of just how diabetes works. Despite all the years of experience, and all the time spent with leading researchers and healthcare professionals, Jacob made a point of saying that it wasn’t until he actually met people with diabetes that he realised just how little he truly understood about life with diabetes.
That understanding increased exponentially when his young daughter was diagnosed with diabetes. You might think that having a child diagnosed with diabetes after you’ve given most of your career to researching it may make things a little easier. But listening to Jacob tell the story of his daughter’s diagnosis it was clear that the impact and devastation was no less at all.
As Jacob outlined the timeline of research, I was a little startled when he starting talking about this being the way forward to curing diabetes. I was even more startled at just how confidently, and almost casually, Jacob was talking about the cure. He was putting timeframes out there, saying that he firmly believed that no one in the room would die from, or because of, type 1 diabetes. I could tell that I wasn’t the only one surprised by this declaration.
Both Louise and Jacob were discussed the challenges of finding treatments, and ultimately a cure, for type 1 diabetes. Plus, there is the autoimmune response – you remember, the one that destroyed our beta cells in the first place – that needs to be addressed. Encapsulation will assist with that, but that also has challenges that need to be overcome. (It probably should not have come as a surprise when Louise told us the beta cells are the most difficult and sensitive cells, posing a number of trials, including how they stop secreting insulin the second oxygen concentration drops. Precious? You bet!)
However, despite the difficulties, Louise and Jacob were very clear about their goal and where their research was going: to cure type 1 diabetes.
I am very wary when it comes to talk of a diabetes cure. I don’t know one person with type 1 diabetes who has not heard some version of ‘The cure is just around the corner’. Sometimes that’s quantified with a timeframe. The old ‘five years’ chestnut is popular. At diagnosis, I was told five years; ten at the most. Well, here I am at twenty years and either I’ve not turned the right corner, or my first endocrinologist was being over-optimistic. I think it is probably the latter.
But I thought I’d made peace and accepted that that there would not be a cure in my lifetime, instead turning my hope – I have so much hope – towards better treatments, smarter devices, improved meds. I do not feel sadness or despair when I say I don’t believe I will be cured. I feel hopeful that thanks to ongoing research, my life will be less and less limited by diabetes.
Yet here I was, holding onto each word, and unlocking the part of my mind that I had, perhaps reluctantly, packed away many years ago. Would I allow myself to even think that a cure in my lifetime was a possibility?
The event concluded with a panel discussion, and as questions were invited, I raised my hand to ask how we balance talk about curing type 1 diabetes with managing expectations. Hope is important, but so is not being disappointed.
The discussion that followed was candid. I loved that the researchers could understand my apprehension – and that of a number of others in the room who also shared their reluctance to use the word cure. And that ‘cure’ meant different things to different people.
Because: what is a cure? I don’t think there is a simple answer to that. For some, it would be a fully functioning closed-loop automated insulin delivery device. But that would still involve an element of ‘user input’. Even if calibrations are not required, there will still be the need to change sensors, refill cartridges, change infusion sets.
For others, a fully implantable closed loop device which only needs ‘topping up’ with insulin occasionally would be considered a cure.
I know people who have had islet cell transplants, and pancreas transplants, but they require immunosuppression therapy and I don’t know that necessarily constitutes a cure.
Encapsulation may negate the need for immunosuppression, but would the cells need to be topped up…and how frequently would that need to happen? Would glucose checking still be required?
It is subjective and each person with diabetes would have different criteria they use to accept what is and what isn’t a cure. I don’t know what my criteria is yet.
I like the idea of not dying with – and certainly not dying from – type 1 diabetes. Do I think that is a reality? I don’t know. I feel that my adamant claim that there will not be a cure in my lifetime has been challenged this week and I’m okay with that. Because what hasn’t been challenged is the hope I have.
If in my lifetime with diabetes, the day to day tasks are reduced, the emotional burden is lessened, the fear and anxiety can be diminished, treatment of diabetes-related complications improves, then I feel that I am still somehow out in front. I may not be cured. But each step forward is a step in the right direction. Even if I don’t make it the finishing line and handed a cure.
DISCLOSURE
The DEEPtalk event was hosted by Novo Nordisk and was held at one of their facilities in Copenhagen. I was invited by the Global Patient Relations Team to moderate the event. Novo covered costs for my (premium economy) flights (I used my own frequent flyer miles to upgrade flights) and two nights’ accommodation as well as transfers and meals while I was in Copenhagen.
I was also invited to attend an information event where Novo employees spoke about current stem cell research in diabetes.
There is no expectation from the Global Patient Relations Team (or Novo Nordisk more broadly) that I will write about the event or other activities held while I was in Copenhagen and what I do write is mine. This summary of the stem cell event and presentations is all my own interpretation and has not been reviewed by Novo Nordisk prior to publication.
The other week, as I sat on the stage as part of a panel session at the HIMSS conference in Brisbane, a term kept getting thrown around that had me squirming in my seat. It was not said with any malice – in fact I believe it was being used under the perhaps misguided idea that it is represents positive and empowering language. But as I sat there and the term was being used, almost with abandon, I knew that we were going to have to have a chat about it. As per exhibit A:
Exhibit A
Activated patient? No. Just no.
When the moment was right, I took a breath. I’d been asked to comment on the current My Health Record situation, and whether I thought it was something that would benefit people living with chronic health conditions. ‘Before I answer the question, can we just consider the term ‘activated patient’ and how it is being used here today – and often in other contexts too. I’ve heard from people on the stage and in the audience use the term ‘activated patients’. I’m really not a fan of this term. In fact, I think it is really quite problematic.’
Activation is something that is done to something. Think Pete Evans and his activated nuts. Or yeast when making bread or cinnamon buns. Or my pink debit card that came in the mail with a sticker across the front telling me how to activate it. Pete Evans’ almonds were just passive little nuts before he decided to activate them. And before the warm water was added to the yeast, it was just powder sitting in a sachet. My pink card was simply a piece of plastic before I called a number, pressed a few other numbers once the automated message was played and agreed to a heap of terms and conditions, making the card able to work.
Those inanimate objects had something done to them to become activated – it didn’t happen on their own. Beforehand, they were passive.
I was not ‘activated’ to become a participant in my own healthcare. I was not given permission to lead the agenda of how I want to engage. I chose the people I would see; the health service I would use; the devices I wear strapped to me. I have never been a passive participant in my healthcare – or any other aspect of my life, for that matter. I have always been active. Of course there are times that I struggle with motivation and may be less active and pro-active, but getting out of those times was never an exercise in activation by others.
The idea that people become activated because they are given the opportunity reeks of the typical paternalistic attitudes that are still rife in healthcare.
Look, we can have a long discussion about the ‘consumerisation’ of healthcare, and how that is what is to blame for terms such as this. It is business lingo and while many think it probably refers to people being in charge of their health, it actually suggests the opposite.
Words that suggest something is being ‘done’ to a person utilising the health system are not empowering. They are not putting the person at the centre. They don’t indicate that the person is driving their care.
The term ‘activated patients’ provides a narrow interpretation about how a person is in charge of their healthcare, because it always is used to highlight people who are loud advocates for themselves, walking into every appointment with a list the length of their arm of things to discuss, therapies they want to use. But not everyone wants to do healthcare that way. Just because someone prefers – and chooses – to have a healthcare professional drive the direction of their care does not necessarily mean they are not ‘activated’.
Also – consider this: if a person can become an ‘activated patient’, that means there must also avenues for them to become a ‘deactivated patient’. That’s certainly not being person-centred. In fact, suggesting that we become something only because we have been given the right to be that way is the opposite of person-centred.
World Diabetes Day is celebrated each year on Frederick Banting’s birthday. Banting, of course, is credited with co-discovering insulin. That happened back in 1921, so it seems almost unimaginable that people are still unable to access insulin because it is so prohibitively expensive. And yet, that is the reality for children and adults all around the world.
Children like Manuel:
Frederick Banting said ‘Insulin does not belong to me; it belongs to the world’. Insulin belongs to Manuel as much as it does to you and me. But until he, and thousands and thousands of children and adults just like him, can access insulin easily and affordably, Life for a Child will continue to try to bridge the gap.
Read all about Manuel here. His story should be told just like anyone else’s, and in his own words. He is living with diabetes; his diabetes story is his own.
And then, once you have listened to his story, consider making a donation. (Please note that there has been a recent change to where you donate. Start by clicking here.)
Each year, on 14 November, I thank Frederick Banting for my life. I can’t think of any better way to honour his memory than donating to Life for a Child.
With Diabetes Awareness Month in full swing, many of us will have seen the JDRF’s Type 1 Diabetes Footprintflash up on our SoMe feeds as diabetes friends show just some of the ways diabetes has impacted our lives.
This is my one: accurate as of last weekend:
This is just a sample of the numbers that show how much diabetes influences and affects our day to day (and night to night!). If we’re talking numbers when it comes to diabetes, (which I don’t really like to do), there are so, so many more. Here are just some of them… (all are totally random estimations – don’t take anything as gospel here, folks!):
- The number of BGL strips found in unlikely places: 4,500,596,098
- The number of fruit pastilles I can stuff into my mouth at one time whilst in the throes of an ‘I-am-dying-give-me-all-the-glucose’ hypo: 142
- The number of hours being supported by friends with diabetes: 3 – and that’s just today!
- The number of times I’ve caught my pump line on a door handle: an embarrassingly significant number (because: #NotGoodAtDiabetes)
- The total weight I can lift/move when I am having a ‘super-power’ low: 1,450kgs
- The number of red scarves bought at the ADA meeting ‘Stop Diabetes Shop’ because the bloody aircon is too cold at convention centres and I keep forgetting to bring a jacket: 3
- The number of hours after my planned bedtime of 10.30pm I actually go to bed because I’m talking to DOC friends on the other side of the world: 2…3…4 (also: time zones suck)
- The number of times my heart beats per minute when I realise just how low I am, and that there is no easy-to-grab glucose source in sight: 180
- The number of days a Rockadex patch lasts on my arm: 7-10
- The number of nights I’ve lain awake fearing what diabetes has in store for me:more than I care to remember
- The number of handbags I have bought because I’ve convinced myself it will be ‘THE perfect diabetes bag’: 237
- The number of frocks that are hanging in the cupboard unworn because there is no bra that works underneath it and therefore nowhere to house a pump and RL: 25
- The number of supermarket aisles wandered around while low trying to decide what to eat: 8
- The number of jars of Nutella in my house at any one time (for hypo purposes, of course): 4
- The number of times I send out a tweet urging health writers to please be considerate when writing about diabetes: a few times a year.
- The number of times I’ve thought a hypo simulator is a good way to explain what it feels to have a hypo to people without diabetes: 0
- The number of gulps of water it takes to try to quench high glucose levels: 36
- The number of times I’ve explained why #LanguageMatters in diabetes: 123,890,456…123,890,457…123,890, 458
- The number of breaths I need to take before explaining – yet again – why I CAN eat that doughnut: 2
- The number of times I have been grateful that diabetes didn’t stand in the way of me having a beautiful baby girl: every single minute of every single day
- The number of ‘I know someone with diabetes, they died’ stories I’ve had to listen to: 6,984
- The number of times I’ve said the words ‘No, it isn’t a pager/nicotine patch, mobile phone, fitness tracker’ etc to explain a piece of diabetes tech strapped to or hidden on my body: 9,465
- The number of tears that have fallen because I feel overwhelmed by diabetes: countless
- The number of times I’ve been glad to have been diagnosed with diabetes: 0
- The number of times I acknowledge just how fortunate I am to have been born into a country where insulin is easily accessible: at least once every day
- The squirts of surface cleaner needed to remove marks from wherever I’ve accidentally left blood after checking my BGLs: 3
- The number of days I’ve wished I didn’t have diabetes: every single one of them
- The number of days I’ve felt so overwhelmed and burnt out by diabetes that I find performing the most basic things (diabetes and non-diabetes) a struggle: Frequently. because diabetes sucks
- Oh – and the number of times I’ve been wearing a white shirt when I’ve had a gusher: every time
- The number of times I’ve said or written ‘My Diabetes; my rules’: 566,285 (3 of those have been in the last 20 minutes)
- The number of times I give thanks to the brains trust behind DIYAPS: hourly
- The number of alerts or alarms from my phone it takes before I actually take note and do something: 6 (unless sleeping and then: whatever)
- The number of times I’ve accurately counted the carbs of anything containing rice: not once
- The number of times I’ve asked ‘Have you spoken with people with diabetes about that?’: lost count…now I just weep
- The number of lancets I have used in the last twenty years: probably about 18
- The number of dot points on this inane and silly list: every single one of them!
Oh, hello! It’s World Diabetes Day this week. And that means one thing and one thing only: diabetes will be elevated to health condition of the week, and we will see it EVERYWHERE.
I recently wrote that I’d been a little out of sorts a couple of weeks ago. I’m back to my usual robust and resilient self, but on the way back, I seem to have misplaced the filter that usually muffles the directness for which I am sometimes pretty much always known.
I realised it was missing when I was speaking at HIMSS last week and I was pretty direct when talking to some app developers. Instead of doing my usual sandwich feedback (i.e. something positive to begin with; suggestions for how it could be better in the middle; something positive to round it out, all with what could be considered a Dolores Umbridge smile on my dial), I went straight for the filling of the sandwich.
It turns out that without my filter, my comments eschew (rather than chew) bread and are all about the meat in the middle. I become totally low carb in my feedback. And I lose my smile. (A doughnut would probably bring that back, though…)
For this week, we will be banging on about the need for diabetes awareness. Of course, this morning as I was dressing and tucking small vibrating or lighting up boxes and infusion sets into my bra, and checking the tape on the CGM on my arm, while wondering if Loop really did have that downward arrow on my Dex under control, all I could think of was diabetes to the left of me; diabetes to the right. And I’m stuck in the bloody middle with it because it won’t leave me alone. I can’t help but be diabetes aware. All the fucking time!
But this week isn’t about us, (this piece from Tom ‘Diabetes Dad’ Karlya from a few years ago does a great job of explaining that in ways less sweary than my own). It’s about putting diabetes on the agenda for those of us who don’t already think about it morning, noon and night because it’s mailing address is our body.
So, for that reason, local newspapers, news bulletins, online new outlets and everywhere else that is trying to fill a 24-hour news cycle with content will want to talk about diabetes. If previous years are anything to go by, what we see will not necessarily be all that great. But that doesn’t need to be the case.
Last week, I was involved in a news segment about diabetes. When I watched in back on the news that night, I was so impressed with the way the story was presented. I’d managed to chat with the reporter as she was putting together the copy for the newsreader to use when introducing the story, and what she would say. There was no use of words such as ‘sufferer,’ ‘diabetic’ or ‘disease’. Instead, it was a balanced story that presented the facts. It was no less a piece because it left out sensationalist language.
I know that news outlets like a melodramatic take on things, but if you are in a position to help frame the way that diabetes is presented in the media, do it! It’s easy to do (the Diabetes Australia Language Position Statement helps) and mentioning that it takes no more time to use engaging and empowering language rather than stigmatising and negative language may help too.
I’m all about hope at the moment – well always – so here is what I hope for this World Diabetes Day:
In the posts celebrating the theme of this year’s WDD, diabetes and families, I hope that nowhere is a person with diabetes made to feel guilty, or that their diabetes is a burden on their family. I know that diabetes affects my family. I know that diabetes has moments of keeping them awake. I know there are times they may worry. But thankfully, I have never, ever heard them tell me, others, news outlets, social media, one of our dogs that they don’t sleep because of my diabetes, or they spend every minute thinking about how diabetes impacts on us, or that my health condition eats into our savings. Think about what you are saying and how we may feel if you talk about us like that.
In news reports, I hope for accurate reporting that doesn’t make us look pathetic or as though we deserve pity. I hope for language that presents the facts about diabetes without adding judgement or blaming us for our condition.
I hope that whoever is thinking, writing, speaking, presenting about diabetes this week remembers that no one asks to get diabetes; no one asks to get diabetes-related complications. Blaming and shaming us does nothing for anyone.
I hope for balance, and that for every story that celebrates an Everest climbing (or similar) we acknowledge the less grand endeavours. Because when speaking about diabetes, we cannot only hear from those at the extremes of the spectrum. Most of us are somewhere in the middle and our stories shouldn’t be left out.
In online groups I hope for no discussions about why we need to change the name of type 1 diabetes to distance ourselves from people with type 2 diabetes. Because: 1. Shut up and 2. Stop it; you’re adding to the stigma.
And more about online groups. If people are sharing news stories that will inevitably show overweight people eating hamburgers, the correct response is not to shame these people and tell them they are pathetic for not eating low carb. Because: 1. Shut up and 2. No one cares about how many grams of fat or how few grams of carbs you ate today, or how much insulin you didn’t need because you ate a bowl of organic kale with some organic tuna with coconut oil for lunch.
I hope that diabetes is presented as a serious health condition that does not discriminate when selecting whose body it wants to hang out with (in?). And that all different body types are represented.
And while we are talking about representation, I hope that we see diversity in diabetes stories from people of different colour, race, religion and sexual orientation. Because factors affecting our diabetes go beyond just the medications we take, and not everyone living with diabetes looks or is the same.
I hope that the voices of people with diabetes are not drowned out by those around us.
I hope to see myths busted.
I hope that somewhere we see that diabetes affects the whole person – body, mind and spirit – and that any solution claiming to help us, addresses each and every one of those parts of us.
I hope to see those who are happy to #MakeDiabetesVisible take whatever platform works for them and shares, shares, shares; and equally those who want to be more quiet ,are given the space to do that too. (Read this beautiful piece from Melinda Seed for more.)
And most of all?
Most of all I hope that no person with diabetes sees anything this World Diabetes Day that makes them feel diminished in any way for having diabetes. Because if that happens, then surely the day cannot be measured a success.
This year for World Diabetes Day, the International Diabetes Federation has decided on the theme ‘Diabetes Concerns Every Family’. According to the WDD website, the aim of the campaign is ‘…is to raise awareness of the impact that diabetes has on the family and to promote the role of the family in the management, care, prevention and education of the condition.’
I get that. I have said it on numerous occasions: it takes a village to live with diabetes.
I was a little nervous when I first saw some of the materials from the campaign, because I was worried that it may focus too much on the negative effects of diabetes and how it burdens the families of those living with diabetes. I know how diabetes impacts my family and I feel enormous responsibility already about that. I don’t need to be reminded of it, and I certainly don’t need to be guilted into being told that if I am not managing my diabetes properly I am doing a disservice to my family.
Although there have been a few little things that hint at those ideas, mostly, what I’ve seen has been positive and focused on celebrating and acknowledging those villagers who help us live with diabetes.
Diabetes Australia has decided on the campaign of #MyDiabetesFamily to highlight the idea of the village, and acknowledge that ‘family’ looks different to a lot of people. For some people with diabetes, it will be their immediate family – parents, partners, kids etc – who are their main cheer-squad and supporters; for others it will be their friends, work colleagues or maybe gym partner. Someone the other day told me that their dog is their most important diabetes supporter, providing them with comfort – and alerting them to lows.
I was asked to put together a collage of the people who I would refer to as #MyDiabetesFamily. This is it:
#MyDiabetesFamily
Obviously, and most importantly, Aaron and the kidlet feature. They know my diabetes in a way that no one else does because they see it most. They see the difficult days, the frustrations and how overwhelmed I can get, but they also see my celebrate the positives. And they have seen how much my diabetes – and my attitude to it – has changed in the last 12 months. In some ways, they benefit from Loop, too because my diabetes intrudes a lot less into our family’s life.
My parents and my sister are on there too – another obvious inclusion. Their support is never ending.
My gratitude for my family – in the more traditional sense of the word – is unending. They may not have diabetes, but they deal with it in different ways. While they may not understand that feeling of unquenchable thirst that comes from high glucose levels, or the panic of an ‘eat the kitchen’ low, they do know what it is like to be spectator to it all and I know that they all wish that I didn’t have to deal with those things – and everything else diabetes has to offer.
And the photo at the top shows just some of my friends with diabetes. As it turns out, this was the first photo on my phone with a group of diabetes friends, and these fab people are just a tiny number who also make up #MyDiabetesFamily; I am lucky to say that there are so, so many more.
These are the people whose islet cells are as absent as my own; these are the people who ‘get it’; these are the people who intrinsically understand what diabetes feels like – even if each of us have different experiences, and we use different words to explain it, and come from and with different perspectives. These are the ‘us’ in #NothingAboutUsWithoutUs; they are the ‘tribe’ in ‘Find your tribe, and love them hard’.
And in the middle? Well, that would be me. Because I am the one who is so grateful to have them all there as part of my life, helping and supporting me.
Want to get involved and celebrate your own diabetes family?
Have a look at the Diabetes Australia Facebook page (click on the image below to be taken there) to find out how.
DISCLOSURE (because they matter and I always disclose. ALWAYS.)
I work at Diabetes Australia, and had some involvement in the development of this campaign. I am writing about the campaign because I think it is a truly important one – not because I was asked to by any Diabetes Australia staff. Plus – I’ll take any opportunity to highlight the folks who make living with diabetes easier!
I’ve been a little out of sorts for the last week or so and this has translated to me feeling a bit distracted, and not sleeping well. I’d forgotten about not getting a good night’s sleep, because Loop completely and utterly changed the way I sleep. Here’s the thing, though: when I am not sleeping well, my glucose levels are far less predictable. And then, when my glucose levels are far less predictable, I sleep less. And so, I enter a cat and mouse chase as I step in and try to sort things out when really, I should stop. And try to sleep more.
I’ve thought about this as I skim through posts about raising awareness of diabetes. Because I realised that in the eagerness of doing the very important work of trying to #MakeDiabetesVisible to everyone else, and raise awareness of what living with diabetes is truly like, I am still becoming aware of things myself. It flies in the face of my belief that this month isn’t about those of us who have diabetes – it’s for the people who don’t, so that we can hopefully improve their understanding of the seriousness of diabetes.
But actually, in the last few days, as I’ve been a little more introspective – and awake more –I’ve become aware of the impact of sleep. Or rather, the impact of the lack of sleep.
I talk a lot about how all-encompassing diabetes is: about the burden of diabetes. This is different for everyone, and in the past I have spent a lot of time (some might suggest navel grazing) trying to define the things that contribute most to that burden for me.
Since I started Looping, I regularly say that I feel less burdened than I ever have.
That is true. And when I think about it makes perfect sense. The automation of Loop means doing fewer diabetes tasks, and that means less burden on the physical things I have to do. It has also resulted in significantly reducing swings in glucose levels. These things alone save me a lot of mental energy. And physical energy too. And keeps my mood far more even.
But this last week; a week that I have felt a lot more needed from me emotionally, diabetes has struggled too. Loop is brilliant at chugging away in the background and keeping everything as stable as possible. Night-times are brilliant because there are far fewer of the contributing factors that send our glucose levels into disarray.
However I have spent more time awake, meaning less time for just chugging and more time for needing to fix things. The less I sleep, the more Loop has to do. And sometimes, it doesn’t cope all that well – especially if I step in to try to give it a ‘helping hand’.
Sleep is so important. We talk about food and exercise and medication and how they impact on our glucose levels. We talk more about the result of stress on our diabetes management. We know that when we get right the equations about those factors and our glucose levels are less variable, we feel better. But sleep? I honestly don’t think that anyone has ever spoken with me about sleep.
Sleeping more is a regular issue for me. I get a second wind late at night and suddenly decide that is the time I should really do some work. Plus, having friends around the globe means needing to negotiate time zones. When they are awake, I often should not be, yet marathon message sessions often happen and that delays sleep too. It works both ways. I’m conscious that good times for me to chat are not necessarily ideal for those in a different hemisphere! Oh – and then there is jet lag. Ugh…jet lag.
Adam Brown has devoted a whole chapter of his book ‘Bright Spots and Landmines’ to the issue of sleep and diabetes. I think I need to have a reread. But more broadly, I think we need to better address the issue of sleep for those of us living with diabetes, because once our quantity and quality of sleep starts to affect our glucose levels, the way we feel overall significantly changes.
I’m feeling much more like my usual self today. I slept a little better last night and my CGM trace has been far nicer; Loop has been able to cope much better, and my time in range has returned to what I have become used to. All in all, it adds up to me feeling like I usually do.
Unfortunately, even with the improved night’s sleep and more time in range, I still wasn’t thinking clearly enough when I chose this colour for my nails. I’ve no idea what to blame for that ill-advised choice, but probably should have learnt by now that awareness raising for diabetes does not need to extend to blue nail varnish. Alas, I have not …
Everything is turning blue. In the US, today marks the start of Diabetes Awareness Month. Apparently, Diabetes New Zealand are also using November as an awareness opportunity, this year focusing on encouraging Kiwis to ‘Act now to live well with diabetes’. (You can read about their activities here.)
While it’s not Diabetes Awareness Month in Australia, those of us in the Aussie diabetes world cannot escape that there is a lot of diabetes happening. We can choose to get on board or ignore it. Except, of course, on World Diabetes Day where we ring everything in blue circles.
Some years I’m totally gung-ho and all enthusiastic and happy to do the whole month. Other years I’m a little more subdued. This year, I think I’ll have a foot in both camps, which was apparent with my swinging mood this morning. I woke up and my attitude was firmly here:
But, after my shower as I searched for something to wear, almost automatically, I went straight for clothes that were blue. Blue. All blue! Every single thing: blue! (Including my eyeliner.)
Diabetes awareness means different things to different people. I firmly subscribe to the My Diabetes, My Rules philosophy, and that also encompasses the issues that we hold near and dear, and fight for with all the energy we can summon. And those issues will be different for different people.
For me, I’ll keep on keeping on throughout November, working on the issues that matter to me. That includes neat little hashtags like #LanguageMatters and #NothingAboutUsWithoutUs. It also includes acknowledging that diabetes is a self-managed condition that we do ourselves more than 99 per cent of the time. I challenge ideas around consent and autonomy. I fight for us to be able to do diabetes in the way that we want – with the right support system around us, using what we need to be our best. I talk a lot about how diabetes is more than numbers and that screening and consideration of our mental health is just as important as screening and consideration of diabetes-related complications. And while we’re on complications, I have spent a great deal of time this year writing about how blaming and shaming people with diabetes and diabetes-related complications is damaging. I beg, beg, beg that Steel Magnolias not be held up as current case study for diabetes and pregnancy. Perhaps most loudly, I cheer the cause of PWD being represented, present, including, involved and highlighted when diabetes is on the agenda…any agenda! Life for a Child remains a cause very close to my heart and something I am privileged to be able to support. And I promote the value and need for peer support, clearly explaining how it is my friends living with diabetes – my tribe – who I count on most because they unquestionably ‘get it’ and that what we learn from our diabetes peers is absolutely critical.
The list is long and at first, it may look like I need to just settle on one or two things and do those properly rather than the half-baked mess it may appear.
But actually, when it all boils down, I think that the truth is that all those issues can be condensed into four main categories: Access, Respect, Choice, Health.
That’s what November is going to be about for me. I’ll keep banging a drum to what may now be a familiar tune. But there is lots more to do. And this month, I’ll be doing it in blue.
I’m still playing catch up on the goings on at EASD. It was such a busy conference – in general and for me personally – that my head is still lost in a lot of what happened and what I saw. It’s somewhat frustrating for me because diabetes conferences are seen as an opportunity for so many meetings of different groups and projects I’m involved in, and that means I don’t get to anywhere near the number of sessions I would like to. When I can, I make sure I live tweet my way through (that’s how I take notes to do write ups later), but this conference was so busy that there was very limited time for that.
But I still did get to see a lot thanks to the satellite events I was invited to and asked to speak at. Plus, this year at EASD, I was involved in something new that was super exciting.
DZD meets #DEDOC was a novel session combining young researchers and (not necessarily young) people with diabetes to give different perspectives on a variety of current research programs. The event was presented by Deutsches Zentrum für Diabetesforschung.
(My very limited German (i.e. I sang in St Matthew’s Passionat University – badly – and was in the orchestra for a German-language version of Threepenny Opera, or rather, Die Dreigroschenoper) is apparently good enough to translate that as the Diabetes Centre for Diabetes Research – so, I guess I’m almost bi-lingual now.)
Bastian Hauck hosted the event and was involved in the project to nominate PWD to speak at the event, and encourage other PWD who were at EASD to come along and listen. This was Bastian doing what he does best – facilitate discussion and encourage engagement by different stakeholders. He always manages to ask questions that get people thinking in different ways and did a stellar job again in this event.
The session was not designed as an excuse for PWD to be critical of the research and researchers, or to find fault in what they were doing. It was not to query the merits of the research either. It was to give the researchers an opportunity to speak about their work (in a rapid fire, five minute pitch), and for PWD to engage in that discussion, asking questions and explaining the relevance of the research to actually living with diabetes. While the project may not have actually come directly from PWD, it was a true collaboration where researchers spoke of what drives them, and we shared what we hope from science.
So, what research was on show?
Firstly, we had Dr Stefan Kabisch speaking about research which compared dietary prevention and treatment of type 2 diabetes with two different interventions: one low carb and one low fat. Cathy van de Mortelewas the PWD involved in this segment of the session, and we couldn’t help but have a little giggle that she had been selected. Those who know Cathy know she is anincredible baker and cook. Her creations are magical and if I lived in Belgium, I would be at her place for dinner three nights a week. But low carb and low fat? Not so much! However, she did give a really useful perspective on the need to remember that different eating plans need to be sustainable and what works for one person may not work for another.
Secondly, Dr Carolin Danielspoke about her research in type 1 diabetes prevention vaccines. Dr Katarina Braune stepped in as the PWD (she is also a researcher and endo) to give her comments on the research. It was interesting hearing Katarina, because she comes from the perspective of a scientist as well as a PWD, so her considerations were different to other PWD who spoke. Her questions and comments incorporated the scientific as much as the ‘real life’, and I loved the way she was able to so succinctly and eloquently translate it all so it made sense to someone like me without a scientific bone in my body!
And finally, Dr Julia Szendrödispoke about diabetes-related complications. While the research was specifically about the mechanisms in the development of complications, as well as looking at potential interventions, I was invited to be the PWD in this discussion to lend my language focus. I highlighted how conversations about diabetes-related complications need to be without judgement and stigma, and that at all times, remember that although a single body part may be in question when speaking about a specific complication, it is attached to a person with a whole body and mind that must also be considered.
To be honest, I felt that my comments were almost redundant because Julia did such a beautiful job in her five minute explanation of her work of ensuring that there was no blaming or shaming. I thanked her for this because the language in pretty much every other discussion of complications I had seen that week was not all that palatable!
I love the idea of including PWD to shape diabetes research. And I loved the discussion at EASD. It was an excellent example of how to include PWD in discussions – even highly scientific discussions. And just how easily it can be done!
This event was the first one, but hopefully the organisers have seen the value of conversation-based sessions including different stakeholders. It would be great for events such as this to attract even more attendees – researchers, HCPs and PWD – although a huge thanks to the German PWD contingent who was there, flying the advocate flag and supporting us – and to see them on the main program of the conference.
DISCLOSURE
I was invited to provide my perspective at the DZD meets #DEDOC presented by Deutsches Zentrum für Diabetesforschung. I did not receive any payment to speak at the session. Thanks to Bastian Hauck from DEDOC (the German Diabetes Online Community) for involving me!
Roche Diabetes Care (Global) covered my (economy) travel and accommodation costs to attend their #DiabetesMeetup Blogger event at #EASD2018 and present at their media event the day before EASD. Roche Diabetes Care also assisted with providing me press registration to attend all areas of the EASD meeting.
Diabetogenic 