You are currently browsing the category archive for the ‘Real life’ category.
I always thought that the whole concept of maternal instinct was a load of bollocks. People kept telling me that once I was a mother I would understand it, but I didn’t believe it, especially after our twenty week scan. I was absolutely positive our little kidlet was a boy, so much so that I had refused to even consider girls’ names. ‘Oscar Harry,’ I would say when anyone asked. ‘We’re sorted. That’s what he’ll be named.’ When the sonographer told me that she was 99.9 percent sure that the baby half way through gestating was a girl my first response was ‘She’s going to get teased at school with a name like Oscar.’
As it turns out, maternal instinct is a thing, something I worked out pretty damn quickly when I learnt how to decipher between a ‘this-is-just-me-being-a-baby-and-not-having-words-yet-but-can-I-please-have-some-cuddles’ cry and a ‘this-is-something-serious-mum-please-take-action’ cry.
The way I see it, maternal instinct is just another name for intuition. And that is something we all have. What we do with it though – and just how tuned in we are to our own instinct – is completely individual.
Some of us have a finely-tuned ear, able to pick up whatever our intuition is telling us, never second guessing it and simply accepting and acting accordingly.
Others hear it, ignore it, try to convince ourselves of something more convenient. Because sometimes it’s just easier to believe what we want about a situation or a person than to try to work out what doesn’t feel quite right.
That intuition can be a life saver. But it doesn’t work in isolation.
I wrote a few weeks ago about how my resilience level contributes to how well I respond to situations around me. And it seems that there is a very distinct connection between how resilient I feel and just how much I pay attention to what my instinct is gently whispering. Or yelling.
When my resilience levels are high, I listen to any and all messages of intuition and trust what I am hearing unreservedly. If it is telling me something, I believe it and act accordingly. When not feeling resilient, there is other noise in there. And that results in me either not recognising what my instinct is telling me, or I just outright ignore it.
My diabetes intuition has been put through its paces over the years. It’s what tells me that a pump line needs changing, even though it feels fine. It knows when to calibrate according to Dexcom instructions, rather than the more lackadaisical approach I take most days. It alerts me to an off CGM reading, suggesting I double check with a glucose reading.
When I pay attention, it pays dividends. Clean and new pump line in and glucose levels continue along their merry way, as compared with a site that is producing numbers that can only be because insulin absorption is not happening properly – even if I don’t want to believe it. A well-calibrated Dex equals numbers I know I can implicitly trust rather than double guessing every number I see. Double checked CGM number – even if it is smack bang in line with what my glucose meter tells me – gives me the confidence that Loop can and should continue to hum along quietly and do its thing.
It’s not rocket science. It’s just paying attention to what my intuition is telling me, instead of trying to explain (or rather, excuse) things away with pretty much anything else I can think of. Because, you know, if it walks, swims and quacks…well, you know the rest.
I know there have been times when I’ve certainly almost deliberately ignored my intuition, instead convincing myself that something, or someone isn’t necessarily what appears before me. Sometimes, it takes a while – often far too long – to realise that I should have listened to my intuition in the first place just believed and accepted what it was saying. It can be easy to get swept up – especially when I am not feeling resilient enough to see what is right there in front of me.
And then I wonder how the fuck duck I missed it in the first place.
Is there a more contentious issue when it comes to diabetes than food? Possibly, but when it comes to what we eat as part of our diabetes management plan, there is a lot to wade through.
For those who have had diabetes for more than a few years, it is highly likely that guidelines will have shifted, if not outright changed directions. The food plan that was ‘in’ for me at diagnosis is different to what is recommended now. In the last twenty years I have heard and read so many different ideas about the best ways to eat to ensure optimal diabetes health. My head has spun – and so has my stomach at times – with the chopping and changing ideas. To be honest, I can’t keep up.
Plus, we live in a world where everyone from celebrity chefs to movie starts are health gurus, tricking us into believing they have the answer to nutritional nirvana… if we just take this super elixir or this mushroom and cacao supplement. (Yes – I’m looking at you Ms Paltrow. Shush now, please. )
The DEEPtalk event last week was under the ‘mealtime challenges’ banner, but it covered more than just what happens when we sit down to eat. Because, we all know there is much more to food than sustenance and the sum of a nutrition panel. If that was the case, we’d be happy eating things that looked and tasted like, and had the texture of cardboard.
Considerations around the food we eat are social, political and environmental. We need to think about what we will be doing with that energy we have going in. It has to look, smell and taste appealing. Food triggers memories and deep emotions. But it can also be a source of difficulties. The eight different topics at DEEPtalk took in a lot of those different issues.
Phylissa Deroze welcomed us to her holiday table, enticing us with a seemingly endless buffet of delicious foods. But that festive spread became an obstacle course as she explained how difficult it could be to ensure she felt she was being true to eating the foods that she felt she wanted – and needed to eat – while dealing with the challenges of food pushers. ‘The two main ingredients in holiday food is carbs and love,’ Phylissa told us. As it turns out, both challenge her diabetes management.
Speaking of carbs, Antje Thiel reminded that just thinking about carbs when trying to assess how food impacts glucose levels was naïve and short-sighted. She listed a veritable shopping list of other factors that need to be measured. From hormones, to the timing of eating to the weather…these factors (plus a hell of a lot more) all impact in some way.
Quinn Fisher and Leighann Calentine shared the stage together and did a great tag-team presentation about how being a kid, and now teen, trumps diabetes any day, announcing early in the talk ‘Cake is totally bolus worthy!’ which seems as good a motto as any by which to live one’s life. Quinn is 14 and has had diabetes since she was three, and her family’s practical approach to how she manages things like sleepovers and birthday parties makes good sense.
Sara Moback spoke about a topic that simply does not get enough airtime: diabetes and eating disorders. She shared the story of her anorexia nervosa diagnosis and the treatment she received following that diagnosis. And she also reminded us that the focus on food, and the constant striving for a perfectly straight, unmoving CGM trace are surely contributing factors to why girls and women with type 1 diabetes are twice as likely to develop an eating disorder.
Paul Louis Fouesnant’s presentation had my heart racing as he explained how he managed his diabetes and the fears of low glucose levels after a broken down car left him stranded for a couple of days in remote Madagascar. Clearly he is the type of person you want around in emergency situations: he can make fruit puree from foraged berries. Paul Louis’ presentation was about the challenges of travelling to countries where food may be a little different to what we are used to. But he is firmly of the belief that you try everything in front of you – and enjoy your travels.
Bruno Helman introduced us to his vegan life with type 1 diabetes, explaining the road he took to becoming vegan and how he manages his training to run marathons. (Oh, and when I say ‘marathons’, I mean 27 in a year. As you do…) For me, Bruno’s talk probably challenged many of the ideas about diabetes eating than any of the others, simply because it was the most different to the eating plans that I have subscribed to over the years. As someone who absolutely loves vegetables, and incorporates them into every single meal, I still think there is a lot more I can do to increase the plant-based component of what I’m eating. (And I don’t just mean more carrot cake..)
Melanie Stephenson eloquently shared how she moved from adding marathon running to sprinting, and how she carb loads to ensure that she performs at her peak on race days. Can I say how refreshing it was to hear someone talking about carbs as nothing more than a form of nutrition, rather than something to be demonised and feared. Mel and some friends decided that not only would they run a half marathon, but they’d also break the world record for the number of people with diabetes running in it. They did that in June this year.
And finally, Bastian Hauck rounded out the event, using one of the best analogies for diabetes management that I have ever heard. The audience was mesmerised as he challenged everyone – except those of us with diabetes – to commit to a week, and then a month of daily dental flossing. With caveats: it had to happen twice daily at 8am and 8pm. Oh, and any other time food or drink was consumed. Plus, the correct amount of floss needed to be used each time: 5cm for each 10grams of carbs…no more, no less. And, of course, people were required to keep a record of all they ate. How many people in the room were prepared to even try this challenge? One. That’s right…one person. Thanks, Doug!
Eight topics; nine speakers. And this just barely scratched the surface of the different ways food can be used as part of a diabetes management approach.
My job was to introduce the event, the speakers and tie together the theme for the event. In other words, I had the easiest job for the day.
I listened to each DEEPtalk twice – once during the rehearsal and then for the official event. And they brought home the message that there is no one size fits all to eating when it comes to diabetes, in exactly the same way that there is no one way to do any aspect of diabetes management. The speakers also showed that food is never, ever only going to be about diabetes. Sometimes, an apple is just an apple, not 15g or 20g of carbs, requiring <X> units of insulin.
Guidelines are all very well. I understand that they are based on best practise and evidence. I also understand that HCPs like guidelines because they make things so much easier. But for those of us living with diabetes…our days are not lived according to guidelines or checklists or evidence. Our lives are lived by morning coffees, and neighbours dropping in for cake, and someone bringing cookies into work, and mango season. And, damn it, I just want that piece of chocolate/pizza/watermelon…
DEEPtalk showed us how just a handful of people with diabetes manage the challenges, success and joys of everyday eating. We all have our stories about what works for us. I love that this event allowed people to share them in a safe and non-judgemental way. We need a lot more of that.
If you’ve not watched the DEEPtalks yet and would like to catch up, the link is can be found in this post.
L-R: Antje, Leighann, Quinn, Bastian, me, Sara, Paul Louis, Melanie, Bruno, Phylissa
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. 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. All mine.
Yes, we know that diabetes is a so-called invisible condition. I’ve written about it a lot both here (and here, and here, and here) and other places as well. And I’ve also grappled with how I feel when I realise that my carefully and deliberately shrouded condition actually becomes visible without me knowing it.
Our diabetes does not wear a cast or make us immediately look different in any way. We are not identified as someone with diabetes until we tell someone that is the case. Even when diabetes is impacting on us in the moment physically – for example if we are actively dealing with a low or a high – and there are around others, most people would not automatically think ‘diabetes’.
As a condition that can be hidden, diabetes is referred to as invisible. But lately, I’m not sure how comfortable I am with this idea, because I think it is a little murky when thinking about just whothe condition is invisible (or visible) to.
So I decided to ask a few people what they thought: people I know well, family members, work colleagues, friends and acquaintances. Just about everyone I spoke to said that they thought diabetes was invisible. They said that rarely would they think diabetes when around me, unless we were specifically talking about it, or they noticed me ‘doing diabetes’. Someone I asked actually said ‘Oh, I forgot you have diabetes,’ which I guess points to just how invisible some people see (or rather don’t see) my diabetes.
The only people who said they didn’t think diabetes was invisible were friends with diabetes. ‘How could I think that?’ someone said. ‘No one living with diabetes thinks it’s invisible. It’s always in our face.’
That’s exactly how I feel. When we say diabetes is invisible, what we are saying is that it is invisible to others. The invisibility cloak only applies to people looking at us, not those of us whose diabetes is under that cloak. For us, it reminds blindingly visible and present. It’s the devices on our bodies (even if we hide them under our clothes); it’s the scars from puncture wounds; it’s the always-present glucose meter; it’s the blood stains from pricking our fingers or removed CGM sensors or pump lines; it’s the glucose strips that get into every crevice of our homes, our cars, our pockets, our bags, or workplaces; it’s the alerts and alarms that sound from our phones and devices; it’s the pop up reminders of medical appointments or to fill repeat prescriptions or pick up NDSS supplies. And they’re just the things we can see and hear, not taking into consideration the constant presence of diabetes in our minds, our hearts, our souls…our very being.
To a degree, we can control just how visible we want diabetes to be to others. Personally, I like that I can chop and change how noticeable the physical signs of my diabetes are. Today, I am walking around in a tank dress and the Dexcom on my arm is obvious for all to see. But throw a denim jacket over it and it disappears, sending my diabetes incognito.
For some people, making diabetes invisible is important. Others like it to be front and centre. There are myriad reasons for making decisions around this, and those decisions and choices will be different for everyone.
I do wonder how much of that decision is made exclusively by the person living with diabetes, and how often we change the level of visibility based on what we believe others may expect. Are we wearing our diabetes loudly because we feel we have to or because we feel we should? I know I have been the loud, out there advocate because I’ve felt I should be.
Or is there something about the shame and stigma of diabetes that makes people want to hide it away? Or are we trying to minimise the visual, or audible signs of diabetes to protect others? Or to stop others from feeling burdened, bored or worried about our diabetes? I also know I do that a lot.
But try as we might, for those of us living with diabetes, we cannot conceal it from ourselves. It lives with us, in us, around us. And it is always visible.
I have just returned from two days of meetings for the HypoRESOLVE project for which I am a member of the Patient Advisory Committee (PAC). Read more about this project here (and watch the short video at the end of today’s post).
This is a huge project. Sometimes its scope hurts my little brain, but at the same time I love some of the almost audacious objectives and goals that have been set.
I left the two days of meetings with a similar feeling that I’ve felt after the previous meetings. And that is just how little we know and understand about hypoglycaemia.
This is one of the challenges when trying to define exactly what hypo is. Putting rings around something that is so personal, so diverse, so complex and so difficult to define for different people with diabetes is almost impossible. Our current classifications seem clunky at best; dismissive at worst.
I am one person with diabetes, but my own experiences of lows is inconsistent. I used to have lows that lasted for hours and hours and hours. But that doesn’t necessarily mean that they were the times I clocked the lowest reading on my CGM or BG meter. Those numbers could have just been sitting at or around the low threes for those couple of hours, not trending up – no matter how much glucose I inhaled – but, thankfully, not trending downwards either.
And then there are the lows that would send me into full overdrive of shaking and sweating and a pounding heartrate, but there may not have been consistency with the number. I could have felt like that at 3.3mmol/l or when my meter was not registering a number other than LOW.
I understand that classifications use numbers because when glucose hits certain levels, we can measure things such as cognitive impact or physiological responses. But numbers when it comes to hypoglycaemia – and all aspects of diabetes – are only a small part of the picture.
Sometimes I feel that the more I learn about diabetes, the less I know. And I have also come to learn that the allocation of numbers is sometimes almost arbitrary. They may make sense to researchers or regulators. But the reality is very, very different.
The problem with this is that there is no way ever that diabetes is going to be able to be classified by fixed numbers. There needs to be wriggle room and agility in interpretation.
I love that HypoResolve is trying to come up with innovative ways to satisfy all groups. Regulators need clear definitions to use as guides when considering new and different therapies. Clinicians and researchers need thresholds to point to. And people with diabetes? Well, we need to understand those definitions and the apply them to our own particular brand of diabetes…and how it may shift and change over time.
And that’s where the PAC comes in. Our role is to make sure the real life perspective is front of mind all the time, and to remind everyone else on the project that there is nothing static or simple about living with hypoglycaemia.
My health condition may be invisible, but it absolutely isn’t silent.
Going through security at an airport the other day (I can’t remember if it was Singapore of Heathrow), I set off the metal detector, a loud buzzing sound alerting security that they better check me out.
As I was getting a full body pat down, my handbag, patiently sitting next to me waiting for its own inspection, started squealing. Running through the airport at speed had caused the fall rate alarm on my Dex app to sound. Thankfully I’d already explained that to the security guard who was swabbing my insulin pump at the exact moment it elicited three short beeps. ‘Temp basal rate,’ I explained, knowing full well that would make no sense to anyone. ‘Also – diabetes is quite noisy, isn’t it?’
She smiled at me as her own machine, which had finished analysing the swab announced that I was safe, and not a danger to anyone other than myself when near a handbag store at any airport. ‘You’re good to go.’
I’ve customised my Dex alerts to vibrate rather than ring out – except for the fall rate alert (as it is a brilliant way to help prevent lows), and the urgent low alarm, which cannot be turned off or set to vibrate. But even with the vibrate settings activated, there is still noise. And while the urgent low alarm very rarely makes an appearance these days (reason I love Loop #2,394,821), when it does, it’s piercing!
I quite like the comfort of my pump alerting to let me know when Loop has activated a temp basal rate (pretty much most of the time….). It’s not a loud and intrusive alarm, so the three beeps are very much background.
There are the constant sounds of diabetes that have become very much the soundtrack to my life: the gentle clunk of my lancet device; the pop when I open a box of strips and the sharp snap as I close it; the clicks as I push a CGM sensor into my arm, retract the needle, and then place the transmitter into the sensor; the beeps indicating my pump line is priming. There’s the sound of lows: a straw being pushed into a juice box after being released from its plastic wrap, and the subsequent quick slurping; the ripping of paper being unwound from around a tube of fruit pastilles,
I’ve just spent a couple of days with friends with diabetes, and there’s something undeniably comforting about hearing others’ sounds of diabetes. Even more comforting is the way we all generally ignore those sounds. No one ever jumps when we hear the low alarm from someone else’s Dex. We trusting that they’ll deal with it in their own time and way (and also know that the last thing they would want is someone treating them like a child and fussing). We just hear it, maybe look up, maybe not. Although sometimes…
‘Is that you or me?’ one of us will say when we hear a CGM alarm.
‘That’s definitely not me…Is that you? What is that?’ we’ll say when hearing an unfamiliar alert from a device that’s different to our own.
‘That’s not you, or me…’ I said the other night whilst sitting in a restaurant, knowing it wasn’t coming from our table. ‘Does someone else in here have diabetes?’
Often we become immune to the sounds of our own diabetes. Those sounds that are there to alert us to a low battery or the need for more insulin in our pumps easily get ignored, until the urgent wailing which indicates that our portable pancreas needs more juice (of the battery or insulin kind) NOW, and the only way we can stop it is to respond.
I used to sleep through hours of low alarms, only realising they would have been ringing out the following morning when I checked my Dex trace. And Aaron too had become impervious to them after a while, and stopped waking…and then waking me…when I was low at night.
There have been times that I have been going along doing my thing and it’s taken someone to say ‘Do you need to do something about whatever is beeping?’ to even realise that diabetes was talking to me.
And sometimes, it takes hearing another PWD’s sounds of diabetes to acknowledge and respond to our own. (Another benefit of peer support!)
But even if it seems that we stop hearing the sounds of diabetes, it’s indisputable that it is a noisy beast. Which I guess makes sense. Because exactly in the same way that our condition is never really invisible to those of us living with it, it is never silent either.
Shush now.
I’ve been thinking about resilience. Mostly because recently, I had a few days where mine had gone a little AWOL.
My resilience levels affect a lot of what is going on in my life. When I am feeling super hardy, I think clearly, I am logical and common sense prevails. When faced with a situation, I pause, reflect on different options, try harder to consider others’ points of view and make calculated and deliberate choices. I make less impulsive decisions; I regret less; I feel more buoyant and sure of myself, and confident in how I decide to solve what lies ahead.
When resilience slips, I act without considering all options or potential consequences. And I stop doing a lot of the self-care that usually I do without too much thought. I sleep less; I eat less well. I become less risk-averse, realising – often too late – that the way I acted was not the smartest way, or I do something that I may regret later. Sometimes I catch myself before it happens, sometimes I don’t.
And it spirals. Because then the worry and concern about the way I reacted starts to play on my mind. And I stop doing what is best for me. I read things into the situation that aren’t there. I second guess myself. Spiral, spiral, spiral…
In diabetes, that reduced resilience plays out in the same ways, just with a diabetes-specific bent. I become a little reckless in the way I bolus – leaving it too late, making guesstimates that I hope won’t cause too many problems, of just plain forget. I ignore alerts and alarms, or silence them by making a quick, but not necessarily smart move. I don’t stop and think and try to understand the situation – I just act. Or I don’t act…I do nothing.
And, of course, in the way of diabetes, that spirals too. Rollercoaster glucose levels prevail as I can do nothing more than chase the impulsive decisions I’ve been making. I stop thinking about the overall picture, instead dealing with the immediate situation at hand.
All of this because I don’t have the resilience stores – the energy, the clarity, the right state of mind – to help guide me through the necessary process, but I need or want to do something … just for the sake of doing something.
I have a wise friend who has provided me counsel during these periods – including this most recent one. As I was jumping in from every which way trying to resolve a situation, she listened, and then gently suggested I take a breath, take a pause and take a step back. ‘Let it marinate. Don’t do anything right now. Just wait a bit.’
This is always great advice. We have all responded angrily to something, wishing that we had taken a few breaths, a few moments and a walk around the block before lashing out; or sent that email that perhaps could have done with the benefit of time, and a bit of editing.
…Or bolused for that high glucose number even though there’s a shedload of insulin on board, and all it needs is some time to work.
The best thing to do in all those cases would have been to stop. Just stop. And wait.
High resilience makes me work smarter, play smarter, sleep smarter and diabetes smarter. The trick is not only maintaining those levels to a point where I make smart choices, but to stop for a moment and try to identify when things start to slip, recognising triggers…and then work out how to remove those triggers for good.
Stop. Wait. And tea.
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 …
The kid and I have been enjoying some fierce Scrabble battles. At this stage, I am absolutely owning it, and, as a mother who has always subscribed to the tough love approach to parenting, I’m not going easy on her in any way. Plus, I like winning.
I’ve always loved Scrabble. I love the empty board at the beginning and the possibilities of what is about to be laid down. I love turning over the first seven letters and arranging them on the wooden stand, wondering if there is any chance of finding a word that will use them all up as my first turn. I look ahead and try to strategise so that I manage to get the most double and triple world scores. And I play to win. Did I mention that already?
As the board fills up, and letters form different words, I hope for an open board with lots of options to use the letters already in play. I move the tiles around on the stand trying out different arrangements, searching for uncommon words that the kid may never have come across, (because why not use this is a teaching moment?!).
When our game finished the other night, I looked at the words and smiled at the randomness of it all. How did those words all come together; how was that pattern the end result? It was an exercise in haphazardness and chance and, sometimes, a bit of luck.
Just like my twenty years of diabetes. There is no rhyme or reason to most of it; nothing really happened by design. There was (and continues to be) a lot of trial and error. I stumbled on things and added to what I was doing to see if it made anything better. Sometimes, I jackpotted on the equivalent of a triple word score with a J in play. Other times, I called it a day, throwing everything back into the box and starting again. There were times that I looked at what was in front of me and somehow cobbled together something that seemed to work.
If I were to make a Scrabble board of words relevant to my life with diabetes now it would use different words today than when I was first diagnosed, or after five years of living with diabetes, or ten, or fifteen.
Twenty years ago, the words would have been about uncertainty, following what I was told and naivety. There would have been words reflecting the management tools I was first given, and they would have been very different five years later, when ‘pump’ would have replaced ‘pens’ or ‘injections’. Some cynicism and sass would have started to make its way in. Another five years later it would have all been different again, my bolshy attitudes much clearer and on show. Fifteen years of living with diabetes would have seen more technology, words showing how my world had been opened up thanks to online diabetes support networks and more travelling. These days, there would be words like ‘Loop’. And ‘tribe’ to acknowledge those friends with diabetes who have come to be an integral part my story.
There would be words that may be denied in regular Scrabble, but the diabetes version would absolutely approve of words and abbreviations such as DIYAPS, diaversary, Kellion, RileyLink and YDMV.
But undoubtedly, throughout it all, there would be some words that would be played all the time in each game. Words such as fear, anxiety, frustration. And hope. Hope would always be on the board, the first word played at every opportunity. Because it’s always been with me. It’s the thread that has been woven through and held together every part of my diabetes, from that first day to today and every single day in between.
Diabetogenic 