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At #DX2Melbourne last week, we had a live webcast in an attempt to include people not invited to be part of the event to hear from some of the bloggers and contribute to the discussion. The hour-long webcast was about diabetes and mental health.
With delusions of Jenny Brockie and Tony Jones, I facilitated the discussion – which was actually quite difficult as there were thirteen of us sitting in a row meaning we couldn’t all see anyone other than who was sitting directly next to us without leaning dangerously forward. Also, I kept nearly falling off my stool, which suggests that I am the most ungraceful creature to have ever been positioned in front of a camera.
I’d put together some questions and discussion points to guide the discussion, but was very open to any tangent the group wanted to take to really navigate and explore the topic of diabetes and emotional wellbeing.
As the discussion flowed, I couldn’t help but feel a sense of déjà vu. Another talk about how diabetes affects us emotionally; another talk about not getting the support from psychologists and counsellors that we need; another talk about how usually it’s not even recommended that we may need to speak with someone about the mental health aspect of living with a chronic health condition; another talk from well-connected diabetes advocates saying that there is more to diabetes than simply being told our A1c, or any other number for that matter.
Amongst all the chatter, I asked myself how many times I’d participated in talks, how many talks I’d given, how many tweet chats I’d tweeted in, how many blog posts I’d written that were about the emotional side of diabetes. And then today, on my TimeHop app came this tweet, from an OzDOC tweet chat about mental health, held exactly 12 months ago today:
I’m not saying this because I think we’ve ‘done’ this topic and should leave it alone now. Not at all. I’m just suggesting that we’ve been having the same discussions about this really important topic for a long time, and yet diabetes care still seems to have this imaginary, yet somehow real, line down the middle, with the physical aspects of diabetes to one side, and the emotional aspects on the other as if the two are not fundamentally connected.
I knew that there would be some people listening in who would be hearing all of this for the first time. It would be the first time that although they had probably worked out that there was something missing from their diabetes care, they weren’t sure what it was. Or, they may have known they needed to speak to a psychologist or a counsellor, but didn’t know who to ask about it…and anyway, they may have thought, surely if this was something that lots of people with diabetes feel, someone would have mentioned it by now, right? Right???
Nineteen years I’ve had diabetes. And for at least seventeen of them, I’ve understood and known the importance of checking in on how the emotional impact of diabetes is contributing to how I am managing my diabetes. Or how I am not managing my diabetes (see above tweet….).
The idea that we can separate our mental health and emotional wellbeing from our diabetes is ridiculous. A condition that permeates every aspect of our life, moves in, makes itself a home and lords over us with terrifying threats of what lies ahead, impacts on our abilities to manage the day-to-day physical things we need to do.
Those watching the webcast at home could submit questions for the panel. A couple of diabetes healthcare professionals were watching and one asked a question that, as I read it, made my heart sink. He said that he sees people with diabetes who he believes would benefit from seeing a psychologist, but he is concerned that they will be offended if he suggests it. He asked the panel for ideas on how to broach the subject without causing offense.
Why did my heart sink? Because the question showed that there is still so much stigma associated with seeing a mental health professional, that other HCPs – on the ball, sensitive ones who know and understand the intersection between diabetes and mental health – feel worried that they might upset someone with diabetes if they suggest referring to a psychologist.
Until we normalise psychological support – until at diagnosis when we’re introduced to our new diabetes HCP best friends and psych support is part of that team – the stigma will continue. I’m not suggesting that everyone will need or want to see a psychologist. But putting it on the list, alongside a dietitian and a diabetes educator and an eye specialist will at least people understand that, if needed, there will be someone there to help with that particular piece of diabetes. (And to be perfectly honest, I really do wish I’d seen a psychologist at diagnosis rather than the dietitian who has scarred me for life with her ridiculously large rubber-mould portions of carbohydrate she insisted I eat at every meal!)
I don’t feel as though I am a failure because I have needed to consult a mental health professional in the past. I don’t think that it suggests that I can’t cope or that I can’t manage diabetes. I see it as important a part of my diabetes management as anything (and anyone) else. A lot of the time, I don’t feel as though I need to see someone. But other times, I do. And that is fine.
DISCLOSURES
Abbott Diabetes Care covered all my costs to attend #Dx2Melbourne, and provided all attendees with two FreeStyle Libre sensors and, if requested, a scanner. There was no expectation from Abbott that I would write about the event or any of their products, and everything I do write about it is my opinion, in my own words, and in no way reflects those of Abbott – or anyone else, for that matter.
On Monday and Tuesday of this week, I attended and facilitated Abbott Diabetes Care’s #Dx2Melbourne event which brought together eleven Australian diabetes bloggers. (All my disclosures can be found at the end of this post.)
(Just a recap – the DX (or Diabetes Exchange) series of events have now been run about half a dozen times. Other than #DX2Sydney and this year’s Melbourne events, the others have been held in hard-to-take cities including Stockholm, Berlin and Lisbon and have been attended by bloggers from the UK and Europe.)
#Dx2Melbourne reunited most of the bloggers who attended last year’s event, with some new faces thrown in for good measure. I was introduced to Alana Hearn for the first time, finally got to meet diabetes yoga guru Rachel Zinman, and caught up with Helen Edwards. (All the links to the blogs of the ‘repeat offenders’ who attended #D2Sydney can be found on this post.)
Some may believe that I am naïve in saying this, but the event is not about product. In fact, apart from a 45-minute presentation – the session that kicked off the two days – there was no other discussion about Libre or any other diabetes product unless it was specifically raised by one of the bloggers. Abbott did not have a new product to push; Libre has been out for over 12 months now in Australia.
(I am not, however, naïve enough to think that events like this are not part of the health industry’s 21st century marketing strategy. But, as I said last year when responding to a comment on my blog about this, this is the 21st century marketing. And I’m glad that consumers have a place in this strategy, because it would be far worse if industry was continuing with 20th century marketing strategies which completely excluded people with diabetes, and did not offer us any opportunity to directly engage and work with industry. Any device company NOT doing this is falling way behind and needs to catch up.)
As the Abbott team stated in their welcome, the idea of the DX events is to continue their commitment to bring together people living with diabetes to share ideas. And for Abbott to get an idea of what it is that is important to people with diabetes and what makes us tick – albeit a very select and privileged sample of advocates.
With this in mind, for me, the most valuable part of the event was the discussions that were completely driven by the bloggers. In an open session where we were exploring ‘why we blog’, I listened carefully as everyone articulated their reasons for going online and sharing their stories with strangers.
Reasons varied – some do it because they simply want to tell their story, some because they love to write, some have specific issues within diabetes they want to open up for discussion, some see it as an advocacy platform. What we don’t hear – ever – is anyone saying ‘Because I want to make money doing it’. I can be all evangelical about it and say it’s because we’re a choir of angels, but mostly I think it’s because we’re smart enough to know the limitations of what it is that we do, as well as understanding the strength is in connecting, not money-making.
We also considered the shortfalls of having an online presence.
I’m an over-sharer and I know that there is a lot I write that many others wouldn’t feel comfortable sharing – and some people have told me that it is sometimes difficult to read. I also write about issues that are of no real concern to others, and they are more than happy to let me know that I’m wasting my time and energy on such irrelevant (language) matters. I also know that as soon as I put something out there, I am opening myself up for comment – both positive and not-so-positive. We had a discussion about how we manage unwanted attention and, in the most extreme cases, trolling.
I have never regretted anything I have written or shared, and have never taken anything down because I’ve felt it was too personal. But I have had some very unwelcome and sometimes nasty comments sent my way.
I found this a really useful, but somewhat challenging, discussion. I have written about some very personal experiences, probably most notably, pregnancy loss. I’ve also written a lot about how diabetes impacts my mental health. These are two topics that are frequently hidden away, surrounded by shame and secrecy – precisely the reason that I am committed to writing about them.
However, the times I’ve been trolled – and fortunately, that hasn’t been often – it has been when I’ve shared very personal stories. They’ve been the times where I have found myself at my most vulnerable, and being so exposed makes any sort of negativity harrowing.
It was reassuring to discuss – and remind each other – that even though we are voluntarily putting ourselves online, we are not inviting people to be nasty and disrespectful. Online is real life, despite what some people may think. This is the space where many of us convene to work together, support each other and share information; it’s not a place for personal attacks.
I left the event on Tuesday feeling utterly exhausted, but also filled to the brim – a feeling that only comes after spending a solid period of time with others treading the blogging and advocacy boards. I was reminded of the similarities as well as the differences we experience living with diabetes. I felt buoyed by the various issues that draw our attention. I felt desperate at the access issues I still hear about – both here in Australia and overseas. But most of all I felt part of something that is much bigger than me, much bigger than my blog and much more powerful that anything I can do on my own.
Abbott Diabetes Care covered all my costs to attend #Dx2Melbourne, and provided all attendees with two FreeStyle Libre sensors and, if requested, a scanner. There was no expectation from Abbott that I would write about the event or any of their products, and everything I do write about it is my opinion, in my own words, and in no way reflects those of Abbott – or anyone else, for that matter.
I was slightly mortified at an exchange I heard recently between a person with diabetes and a healthcare professional. The HCP was correcting the PWD, who repeatedly referred to themselves as ‘(a) diabetic’, urging them to not use the word as some find it offensive.
Sometimes, it seems that we forget that the idea of discussing, and hopefully improving, the language used about diabetes is to better the experience of people with diabetes. My personal crusade is not about completely eliminating the word ‘diabetic’, for example.
I know many people with diabetes who use the word – as both a noun and an adjective – and are very comfortable to refer to themselves that way. This piece from Mel Seed at Twice Diabetes explains why she is more than happy to use the word. I appreciated her side of the debate. It all fits neatly into my philosophy of ‘My diabetes, my rules’.
But the point of the whole #LanguageMatters movement is not about people with diabetes defending the language choices we make. It’s about others. The Diabetes Australia Language Position Statement as never intended to be for people with diabetes. It was always for healthcare professionals, the media and the general community.
Rosie Walker, on her Successful Diabetes blog, captured it all perfectly when she said this in a recent post about diabetes language matters:
‘This is not a call for people living with diabetes themselves to ‘mind their language’. Anyone is perfectly free to refer to themselves and their condition however they wish – as in most other areas of life. This is about how other people, and especially health professionals and scientists, use language in relation to diabetes and those with it, and especially when they are not in earshot or attendance…’
When a healthcare professional tells someone with diabetes to not use a word to describe themselves, it’s just another example of trying to control the PWD. In the same way that we want choice about the devices we use or the treatment plan we employ, we demand choice in the words we use to describe ourselves and our diabetes.
I have started a separate page on Diabetogenic about all things #LanguageMatters. Click here or on the link at the top of the page for more.
You know that old word play about why we should not assume anything? Because ‘assume’ makes an ‘ass’ out of ‘u’ and ‘me’. Yes, it’s lame and I don’t like using ‘u’ for ‘you’ (because I’m a word nerd and don’t do ‘text speak’), but the sentiment is good.
There are so many assumptions that come with diabetes. And almost all of them are destructive.
‘People with diabetes must have eaten too much <insert food/drink type> as a kid.’
‘People get diabetes because they’re fat.’
‘People get diabetes because they don’t exercise.’
‘Diabetes means you are sick.’
‘People with diabetes could be managing better if they just tried.’
Many of us will have had these sorts of comments made directly at us. Some of us will have heard people say these things. Most of us will have seen these sorts of comment perpetuated in the media and in popular culture anytime diabetes gets a mention.
And they are all wrong.
It’s time that we removed all negative assumptions and replaced it with just this:
Imagine how different things would be if that was the starting point of diabetes discussions. Instead of the judgement and finger pointing that often is associated with a diabetes diagnosis, the first thing that everyone said was ‘And now let’s talk about living well with it.’ Instead of the threats, the attitude was ‘You can thrive with the right treatment’.
Finding out someone has diabetes does not in any way give you a window into their life or an indication into their behaviour. But it does tell you that they have a health condition that requires regular management and the best possible treatment.
Imagine how much easier life with diabetes would be – and how much kinder the conversation would sound – if the next time we told someone we have diabetes, the only thing we heard was ‘Are you getting the healthcare and treatment you need?’
Wouldn’t that be a great place to start the conversation?
There have been many occasions in my daughter’s twelve-and-a-half years that, as we’re about to walk out the front door, we’ve looked at each other and stopped. ‘Well, one of us is going to have to change…’ one of us, usually I, say. There we are, standing there in almost identical outfits.
But despite her affinity for stripes and jeans, and oversized grey cashmere knits, and constant comments about how much we look alike, she is not me. We are different people; we like a lot of different things; she loves ice-cream and I really don’t; we have different things that bother us.
I seemed to forget that in the last couple of days and a gnawing feeling in the pit of my stomach – a problem that is mine – overtook my rational side, and I thrust it upon my girl.
This story isn’t about my kid – I am not here to tell her story. This tale is about how I dealt with my fear of her developing type 1 diabetes.
To set the scene: she has been a little under the weather. Before the end of last term, she had a head cold. Her lips were dry and cracked from having to breathe through her mouth, and she was revoltingly sniffily.
She had two very relaxing weeks at home to mark the break between semesters one and two, and returned to school last week very rested and perfectly well. And came home on day two of term complaining of a sore throat, sore head and dizziness. The next morning, she woke up with a full-blown head cold again, and she said her stomach was also a little sore and upset.
This persisted for the rest of the week and over the weekend, so I decided it was time for her to visit the GP. I made an appointment for the middle of the week and as we waited, she continued to complain of a sore stomach and some nausea. She was tired and generally poorly.
And that was where the gnawing monster started to rear its most ugly head, whispering viciously to me. ‘She’s drinking more. Isn’t she?’ came the first comments. ‘Did you notice how many times she has refilled her glass with water?’ it hissed as I stood in the kitchen throwing together dinner, and she popped in to mention something to me. ‘Didn’t your mum say something about her drinking a lot when they took her to the opera a couple of weeks ago?’ I was reminded. ‘She went straight to the bathroom the second she got home. She’s been doing that lots…’
Suddenly I found myself noting empty glasses in the house and listening out for the loo being flushed. I surreptitiously glanced at her when she walked into a room, assessing if she looked as though she’d lost any weight recently. (She didn’t.)
Eventually, as casually as I could, I asked her if she’d noticed any changes in how she was feeling. ‘Darling,’ I said, as we sat on the couch during a commercial break in Masterchef. ‘Have you noticed that you’re thirstier than usual?’ I scrolled through my phone as I asked her, not really looking at anything blur by and pretending that it was just a passing comment and I hadn’t really stopped breathing as I waited for her response. ‘Nup,’ she answered.
When she came back from the bathroom a little later in the evening, I asked her, in the same (false) off-the-cuff way if she thought she was needing to pee more frequently than usual. ‘No,’ she replied, without hesitation.
As nonchalantly as possible, I said, ‘Sweetie…I feel like…I’ve noticed that you seem to be drinking more…and maybe going to the bathroom a little more than you usually do,’ I hated myself for saying it to her and drawing her into my concern.
‘No. I haven’t.’ And she told me how many times she remembered going to the bathroom that day. She reminded me that she keeps forgetting to take a drink bottle to school and sometimes doesn’t drink anything until she gets home. (I ignored that bit of information, even though I probably should remind her to do something about that and hydrate regularly…#BadMotherMoment2198756)
I should have let it go. But I didn’t. ‘I’d really like to check your blood sugar. Would you let me do that?’
(I’m going to stop there, because even as I write this I know how I sound. And in an effort to defend my behaviour (mostly to myself rather than anyone reading) I want to point out that I have checked her blood sugar no more than about half a dozen times in her whole life. I don’t whip out a meter and jab her at the first sign of anything out of the ordinary. I just don’t do that and never have. But regardless of that fact, it doesn’t make it right that on this occasion I allowed my anxiety to spill over and start to become hers.)
In what I can only call one of my less excellent parenting moments, I asked her several times, even though she refused, until she eventually stormed from the room telling me that there was no reason for me to be feeling worried about this because she was not drinking more or peeing more.
I’ve not been able to stop thinking about the whole situation. I am horrified at how I allowed my irrational, unfounded fears to flood out of me. I am angry that the worry that is always in the back of my mind was allowed to grow and grow and unleash its full force onto my darling girl.
In the past, I have sought help from a psychologist about these fears and concerns. I know that I am irrational. I also know – of course I know – what the stats are, and the percentage chance that she will get diabetes. I also know that if she does, we are equipped to ensure that she gets the best possible care and the best possible support. I know it will not be the end of the world.
But mostly, I know that my fears are not her fears and never should be.
We went to the GP. My kid outlined her symptoms, and mentioned that I thought that she was going to the loo and drinking more than usual, but denied that was the case. Pleasingly, the GP did a urine test. All was fine.)
One of us had to change. (NYC 2014)
(Settle down, Mum & Dad…)
I don’t have any tattoos on my body. And I rarely wear medical ID jewellery. How are these things connected?
Well, a lot of people with diabetes have diabetes tattoos, often on the inside of their wrists. Many say the reason they decided to tattoo their medical condition quite prominently on their body is because they don’t like to wear medical ID jewellery, (or don’t want the hassle of remembering to wear it). A tattoo is as permanent as you can get! Once it’s on, it’s on!
I’ve never really been interested in getting a tattoo, and I certainly have never even entertained the thought of getting a medical ID tattoo. This is obviously a very personal decision and I actually really like a lot of the diabetes tattoos that I’ve seen online. But it’s just not something that is very ‘me’. (And perhaps somewhere in this deeply cynical body of mine, a teeny tiny part of me that things maybe, perhaps, possibly there will be a cure for diabetes in my lifetime. And that unicorns exist.)
I do try to make an effort when I am travelling alone to wear my medical ID bracelet that I bought from a number of years ago. But the truth of the matter is that I very, very rarely do. Call me vain or shallow (guilty, guilty), but I don’t like the look of most medical ID jewellery, and even more, I don’t like looking down seeing a constant reminder of my medical condition staring back at me. I love wearing bracelets, but one that screams ‘chronic health condition’ is not really what I want to see when I am typing away and hear the jingle jangle of my bangles.
Today on my Instagram feed, this came up:
It’s from Pep Me Up Diabetes Blog which is run out of Germany by my friend Steffi. Steffi is awesome. I’ve met her in person a couple of times now as she’s also part of the Roche Bloggers Group. To date, her business has mostly sold very cool stickers for FreeStyle Libre sensors and scanners. She gave me a couple of stickers last year in Munich and I quite enjoyed sporting this one on my arm over the top of my sensor:
Now, Steffi has broadened her business to include temporary tattoos such as the one showcased on her Instagram feed today, as well as a couple of others which are also fabulous. In fact, if I were to get a permanent diabetes tattoo, I suspect that it would look like one of these:
(The first one means ‘I am greater than my high and lows’.)
I can see the merit of using a temporary diabetes tattoo. For me, travelling alone would be the time that I think it would be most appealing. But there are a lot of other situations that would be great too: music concerts and festivals, large sporting events, or even as a ‘try out’ for a more permanent inking!
I really love this idea – well done Steffi – and it is another example of some truly wonderful and fun things that are going on in the diabetes world by people with diabetes. Do support them if you can!
Want your own temporary diabetes tattoo? You can order here. And Steffi ships all over the world. Even Australia!
GIVEAWAY!
Steffi has kindly offered to send me a couple of tattoos for a giveaway. Want one? Click here and tell me when and why you would use one of these tattoos.
Wait – I think I found an alert bracelet I like! As I was scrolling through the Pep Me Up website, I found this and ordered it!
For the last sixteen years, I’ve been directly involved in National Diabetes Week (NDW) in some way. Admittedly, I missed a couple because we decided the middle of July is a good time to go to New York to escape the Melbourne Winter. Two years ago I missed half of NDW because I was in Orlando at FFL – I returned just in time for Kellion! Oh, and there was the year I had a little wee lass who I couldn’t stop looking at and cuddling.
But whichever way you look at it, I’ve been involved in NDW for a while. A lot of that was spent very much on the sidelines, because the campaign was type 2 diabetes focused and I was not. Or rather, my role at work was exclusively directed towards type 1 diabetes activities, and campaigns were always about raising awareness of type 2 diabetes.
This year, for the first time, there is an element of the NDW campaign that is exclusively focused on type 1 diabetes and it was launched today. It’s all about the importance of early diagnosis of type 1 diabetes, aiming to reduce the 600-plus hospital admissions each year because the early signs of type 1 diabetes have been missed. I know so many stories of people with diabetes being told they had a virus/urinary tract infection/were run down/growing pains (in the case of kids)/needed a holiday, and sent home with a prescription for antibiotics. Their type 1 diagnosis only came after ending up, very sick, in emergency, many needing ICU attention.
The campaign highlights the 4Ts of type 1 diabetes – Thirst, Toilet, Tired, Thinner.
We leaked a sneak peek of the campaign on Saturday to let everyone know that it was coming. The leaked video, which tells the diagnosis story of 9-year-old Isabelle, has been viewed by tens of thousands of people.
The response to the video and campaign details has been overwhelmingly positive, with people sharing the video widely amongst their networks. And comments have also been encouraging, telling us that the campaign is right in its tone and focus.
Today, the campaign was officially launched in Brisbane and all materials are now available for you to see and share. Here’s the campaign poster:
What can YOU do?
As this is a public awareness campaign, we need to get this information out to people outside the diabetes community. Mostly, those of us affected by diabetes now know the early signs of type 1, but that’s not the case for people who don’t have type 1 or know someone living with it.
You can help by sharing the video on all your social networks. Set your shares to public and encourage your friends to watch and share.
Share the poster – both online and off. You could print off a copies and take them to your GP office, school, supermarket and anywhere else with a community notice board. Ask your church or community group, or child’s school if the poster could be shared in newsletters.
Also, I wrote this piece for Mamamia Women’s Network – again as a way of reaching an audience outside the diabetes world. Please read and share this too.
Use the following hashtags: #ItsAboutTime / #NDW2017 / #4Ts
I have probably attended close to twenty Kellion Victory Medal Award Presentations over the years. You might think that they are all the same and to a degree, you would be right. Every ceremony involves people who have lived with diabetes for 50 or more years being given a medal while their story is shared.
And every single award ceremony has been just that. But the stories are rousing, the people are inspiring and learning about managing diabetes when technology was a glass syringe is sometimes mind-blowing! It doesn’t matter how many of these award ceremonies I attend, the overwhelming feeling of hope steadies and enthuses me for another year.
This year, 56 people were awarded medals, including sixteen 60-year recipients, one 70-year recipient and one 80-year recipient.
One of today’s 50-year medal recipients was Jenny Edge. Jenny frequently comments on Diabetogenic, never afraid to tell me when she thinks I’ve missed the mark; always happy to share her story.
I always love listening to Jenny. She’s very direct, and I always appreciate her no-nonsense attitude. There is no sandwiching how she feels with a couple of innocuous comments on either side of what she really wants to say. She gets to the point and gets there quickly. I find her quite brilliant!
Jenny was diagnosed as a young child, and today she told me how she really hated needles at first. ‘I thought they were cow needles,’ she said. ‘And then my dad showed me what cow needles really looked like – we lived on a farm. Suddenly, my insulin needles didn’t seem so scary.’
Although she received a 50-year medal today, Jenny has actually lived with diabetes for 55 years, so she’s only five years from receiving her 60-year medal. I hope to be there for that one too! Congratulations, Jenny!
There’s a type of low I have.
It’s usually the middle of the night. I’m alerted to something not being quite right – this time, my iPhone beeped. This time I caught it before it became a complete white out hypo that I’ve no real memory of the next day. I switched into autopilot and started to do what I needed to do. I don’t know how it happens; it’s as though I am watching from above, telling myself what to do.
Renza, sit upright.
Renza, grab your meter.
Renza, there are no strips remaining in the canister.
Renza, get out of bed and walk to the diabetes cabinet and get new box of strips.
Renza, check blood glucose.
Renza, grab juice box from bedside table.
Renza, stab straw into juice box and drink, drink, drink.
Renza, go to kitchen.
Renza, cut slice of bread from sourdough loaf on kitchen counter.
Renza, slather bread with Nutella.
Renza, sit at kitchen table.
Renza, eat.
I was methodical, my movements slow and deliberate, almost robotic, like Hymie from Get Smart. I could almost feel my brain actually engaging with each body part, telling me what to do: walk, reach, drink, eat, chew.
I don’t know how long I sat at the kitchen table. I remember starting to focus on the pale light in the back garden and the shadowy figures the huge tree from over the back lane making. I heard Cherry the cat meow quietly at one point.
Renza, go back to bed.
I climbed back into bed, Aaron stirred. ‘Are you okay?‘
‘Hypo. One of those that I often don’t remember. You know – where you would be forcing me to drink pineapple juice and I’d have no memory of it…?‘
I stopped for a minute and realised I was cold but still needed to order my body parts to do what I wanted:
Renza, use your arms to cover your body with the doona.
I started shivering as I realized my hair and t-shirt were damp. I was tired, but couldn’t sleep. My overactive brain that had been busily directing my body, telling it what to do, wasn’t ready to shut down just yet. It was on high alert, and as often happens in that post-hypo murkiness, with the power to shut down the negativity completely deficient, all the scary thoughts started flying around. I thought about what could have happened; I thought about the times that the lows invaded everything and I couldn’t function at all, not remembering the spent juice boxes, empty wrappers, crumbs in the bed. The fear and darkness of hypoglycaemia threatened to overtake me and I knew that sleep that night would be lost forever unless I acted.
Renza…close your eyes.
Renza…don’t have another low…
Renza…get some sleep…
Max and Hymie
My A1c came back a few weeks ago in my target range. As soon as I saw the number, I said to my endo: ‘It’s because of this,’ and I gently patted my arm where my Dexcom was sitting firmly, doing its thing.
I was right. Wearing CGM fulltime has allowed me to better understand what is going on with my glucose levels and how they responds to a variety of different factors.
Puppy on my lap and CGM on my arm.
But it’s only part of the picture and the more I’ve thought about it, the more I’ve come to realise it. I’ve been using CGM almost fulltime for four years now, yet this A1c was ‘more’ in-range than any other in that time.
It can’t just be the device.
No, it’s when I add the low(er) carb way I’ve been eating to the equation that the improvement starts to make sense.
The most obvious thing I noticed when I started eating lower carb was that my CGM trace stayed far straighter for far more of the time.
Before I started eating this way, I’d see a lot of spikes. Sure, I’d come back into range after an hour or two, but there was a good while there that I was above range while I waited for the insulin to do its thing with the carbs I’d just ingested. Insulin isn’t perfect; its action can be unpredictable.
Eating lower carb means the spikes just don’t happen as they used to. Of course there are other contributing factors that do cause my glucose levels to head out of range, but by eliminating – or rather minimising – the one that is most responsible has resulted in a significant change.
So, what is that change? It’s all about time in range (TIR).
And that is how I now measure my glucose management. It’s not about A1c – I don’t like averages because they conceal a lot of what is going on. The A1c average might be a pretty number, but what is going on outside that number to get there? But when I look at how much of the day is spent in range, there is less place to hide. It is starkly clear the days that I am within my upper and lower limits.
And there is a flow on effect from more time in range. When I think about how I feel on the days that I am far more in range than out, I feel better – more energised, more focused, more able to just get things done.
CGM data easily provides me with this data (and flash glucose monitoring would as well) so I can see at a glance just how much of each day is actually spent in my target range. This means that I don’t really care about what my A1c is. It may creep up a little bit, but if overall I am spending more time in range, then I’m happy.
This is just another reason that A1c measurements are flawed. It was first recommended as a way to measure diabetes management back in 1976 and a lot has happened in diabetes since then. I’m certainly not suggesting that we throw it out the window. But I am saying that with new (and some not-so-new) tools to provide even more information – more meaningful information – I certainly am not using it as the only way I to track and measure how I am going.
TIR. I’m calling it the new A1c! (And adding yet another acronym to my diabetes lexicon…)
Want more? This great piece about ‘going beyond A1C’ from diaTribe is a must read.
Diabetogenic 
