You are currently browsing the category archive for the ‘Wellbeing’ category.

Well, it’s been a year. It’s always the same. Come December, and as Mariah is blaring in every store I walk into, I start to feel exhaustion. But it’s not all bad news. Holidays loom ahead. Sunny weather means more time outdoors. And long, warm nights out with friends and family seem like the perfect way to spend my time away from work. Oh, and perhaps most excitedly, my mother is going to make her famous zippoli – my favourite Italian Xmas food.

The happiest time of the year is when mum serves up zippoli. What a time to celebrate being from an Italian family!

The diabetes world remains comfortingly – and frustratingly – static at times. There are constants that shape each year, but there are also changes. Some are positive, some lead me to wonder just who is making decisions that impact on PWD and why do they seem so far removed from the realities of living with this condition?

I’m ready to draw a line under 2018 – a bold, thick, solid line – farewelling the year with the knowledge that there will always be some things about diabetes I know to be true.

Diabetes is hard. The relentlessness of it doesn’t really subside. As much as we have tools to try to make things easier, it permeates, something I realised back in July when the wind was knocked out of me as diabetes unleashed itself into every part of me, taking hold and trying to pull me under.

There is no silver bullet. Loop does seem magical to me, but my diabetes is still there. It is just here in a different way – a new normal.

The inequalities of diabetes continue to be an important theme throughout our community and we can’t turn our backs to the fact that access to the most basic of diabetes medications and treatments remains out of reach to many. There is no one way to advocate for change, and I commend everyone working at the front line to improve the situation.

Which brings me to the point where I remind everyone that it is absolutely not too late to make a donation – however small or large – to Life for a Child. Saving the life of a young person at Xmas time seems like an absolute no-brainer to me.

Peer support remains a cornerstone of my diabetes management toolkit. Of course the shape of that support changes – I’ve met some incredible new people this year and been involved in some remarkable projects. At the same time, there have been some important collaborations with diabetes friends I’ve known for some time. It’s those diabetes friends that continue to help me make sense of my own diabetes, make me realise that my village is global, and know that wherever I turn, someone will have my back. I can’t explain just how reassuring that is.

Despite feeling that there have been times that the community has been splintered and a little disjointed, I still believe that the diabetes community is something positive. I also know that it can take time to find your tribe in there, and accept that not everyone has to be best buddies. But when you do find those people who you just click with (and that doesn’t mean agreeing on everything, by the way) you do everything you can to hold on to them, because that’s where the magic of working with peers happens.

While co-design seems to have become a bit of a buzz phrase, there are some examples of it that just make diabetes activities and projects so much better! This year, I’ve had some incredible opportunities to work on projects with a vast array of stakeholders and what can be achieved is incredible.

Sometimes, (a lot of the time?) we need humour in diabetes. And sweary birds. Finding Effin’ Birds earlier this year was a source of such joy and happiness, especially as I realised that (unintentionally) the clever folk behind it have made it all about living with diabetes. I cannot tell you how many moments I have come across one of their pics on my social media feeds and it has perfectly nailed my diabetes mood.

We can’t be afraid to have conversations that can be considered difficult. This was the foundation of the Australian Diabetes Social Media Summit this year, but it went far beyond that. Women, diabetes  and sexual health remains an issue that needs a lot more attention. And we need to keep talking about mental health and diabetes.

Language matters. Whatever people believe, the way we speak – and think – about diabetes has far reaching effects. It affects everything from the treatment we receive, the public’s perception of diabetes, where fundraising dollars are allocated and how governments fund diabetes.

And so, I think it is fitting that I round out the year and this post with one of the things I am so proud and honoured to have been involved in. It is one of the best examples of co-design; it involves diabetes peers, it acknowledges that diabetes can be a difficult monster to live with, and it holds people with diabetes up. Oh – and it reminds us that absolutely, completely, utterly, #LanguageMatters.

I’m taking a little break from Diabetogenic to do … well… to do nothing. That’s what I have ahead of me for the next three or so weeks. No plane travel, no speaking engagements, no media, no dealing with the diabetes things that get me down. Except, of course, my own diabetes thing. But I asked Santa for a pleasant few weeks of diabetes being kind to me. I’m sure that’s what I’ll be getting under the tree. As long has he can work out how to wrap it. 

I hope that everyone has a lovely festive season. I do know for many it is a really difficult time of the year. Thank you to everyone for reading and sharing and commenting. I’ll be back some time in January. Ready to go again, and to rant and rave, celebrate, and shamelessly talk about what’s going on in my diabetes world. I hope to see you then. 

Advertisements

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. 

Earlier this week, Professors Jane Speight (ACBRD) and Frans Pouwer (Southern Denmark University) published a blog post on the ACBRD site, with their wrap up of EASD, specifically, the lack of psychosocial sessions at the conference. In the piece, Jane and Frans quite rightly say:

‘Psychology is not an optional extra. If diabetes care is the seat of a three-legged stool, then it is supported by three legs: psychology/education, treatment/technology and complications screening. It seems ironic that so much funding, resource and effort is put into strengthening and promoting the treatment/technology and complications ‘legs’, while the psychology/education ‘leg’ remains short and weak.’

EASD is the largest diabetes meeting on the calendar this year. It draws a truly international audience, with healthcare professionals and researchers from all disciplines. It is possible to speak with endocrinologists, diabetes educators, allied health professionals, general practitioners, psychologists, and researchers from all spheres of the diabetes care spectrum.

And yet, it is undeniable that the conference has a true clinical focus, almost forgetting that diabetes does not only impact specific parts of the body (so, so much about the ‘diabetic foot’!) but the whole person (absolutely not enough on the ‘diabetic mind’!).

I am not for a moment saying that the scientific and clinical elements of diabetes should be removed from a diabetes conference, or that they are not important. But I am saying that by demonstrating ONLY this aspect of diabetes, the picture presented is very, very incomplete.

I have written before that this is a frustration of mine at EASD, along with the continued lack of ‘patient representation’ on the conference program. It astounds me that there are no advocates on the official program, giving the ‘lived experience’ standpoint to what is being discussed. With hours and hours of sessions focusing on complications, how valuable it would be to have a PWD who is living with complications standing up there to give a little perspective to all the science. And a psychologist to speak about how complications affect far more than the part of the body that has become…well, complicated.

I urge the organisers and program committee to step up, and find a way to fill in the gaps and start to present a far fuller and more complete picture of diabetes.

While this would involve including more focus on the behavioural side of diabetes with the relevant professionals on the program, it must also mean including PWD into the program – in a meaningful way. If it is too much of a leap to include PWD alongside HCPs in the scientific program, introduce a Living with Diabetes Stream as the IDF has done in their last four World Congresses. It can be done. It can be done well. (And I say that with full disclosure that I am leading the stream at the 2019 Congress and was deputy lead for the 2017 Congress, and spoke at the 2015 Congress in the LWD stream.)

The thing is, it would actually be very, very simple to include PWD in the EASD program because we are already there. This year in Berlin marked the seventh EASD conference I have been fortunate to attend. I have always gone because of satellite events designed specifically for PWD. Initially, these were run by Johnson & Johnson, and more recently Roche, who has taken the ‘patient engagement’ to a new level, running events with up to seventy bloggers. That’s seventy people who have a story to share about their own diabetes experiences.

And I know that many of those seventy people would want to talk about all aspects of living with diabetes, including the psychosocial impacts.

As a leading annual diabetes meeting, EASD could be better. It ticks a lot of boxes. But it could, quite easily, tick a whole lot more by being far more wholistic in its approach. Focus more on the behavioural side of diabetes. And have PWD front and centre where we belong. After all, we’re the ones all this information and research is meant to be benefitting.

DISCLOSURE

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. As always, my agreement to attend their blogger day and participate in their media event does not include any commitment from me, or expectation from them, to write about the company, the events or their products. 

With Jane Speight at EASD in Berlin.

I’ve been thinking a lot about motivation recently; specifically, how we remain motivated living with a lifelong health condition that places so many demands upon us. It’s something I also get asked about a lot by others with diabetes – often people newly diagnosed: ‘How do you stay so motivated.’

It’s all smoke and mirrors, because the truth of the matter is that most days, my motivation to ‘do diabetes’ is very low. In fact, I think that there is a spectrum of motivation where zero is ‘What diabetes?’ and ten is ‘I log everything…EVERYTHING…ask me how many carbs I ate yesterday and what my BGL was at 3.10pm and 5.55pm. Go on…do it. Because I can tell you. Do it. Ask me. And also, yes! I can tell you why my glucose levels spiked at 10.12am three months ago on a random Tuesday. Also, look at this: it shows how my glucose levels are impacted by the phases of the moon. In other news…here’s my last fifteen years of A1cs displayed pictorially, but I can also demonstrate them using interpretative dance if you would like me to. Would you? You would, right? Let me just find my Kate Bush playlist on my iPhone…

Generally, I’m a solid 3.5. I don’t do graphs, I have a vague idea of what my CGM is telling me now-ish, and I can tell you my A1c to within about 0.5 per cent. I call this winning.

I have had periods – extended periods – where I am far closer to zero, which have not been great because that has added ‘not-doing-diabetes-guilt’ to the simple ‘not-doing-diabetes’ which basically equalled feeling crappy all around. And I’ve also been closer to ten – this, for me, was called ‘pregnancy’ – and I was borderline obsessive.

Someone recently asked me if I thought there was a secret to staying motivated. I don’t think there is, because surely, at least one oversharing blogger would have written about it by now.

But I do believe there are small factors that, when combined, do make it easier to remain, if not enthused, at least stirred to keep chugging along with diabetes.

Firstly, in range numbers beget in range numbers, and in range numbers make us want to check for more in range numbers more frequently. It’s undeniable that when we see numbers that don’t cause the response of rage, frustration, sadness, stress or anxiety, we are more inclined to check again. And again.

Technology that helps rather than hinders makes everyone feel better. Many think that it’s a given that new tech makes life easier, but unfortunately, that’s not always the truth, because often – at least to begin with – it requires more input from the user. Actually needing to do more, but not necessarily seeing results is not a recipe for remaining enthused!

Boring tasks are boring, so any way that we can eliminate them or reduce them helps. Making appointments to see our HCPs, finding time to visit a pathology centre for quarterly A1cs (and more) and keeping our diabetes supplies and meds current all take physical time as well as mental time. I have a pharmacist who is like my personal assistant when it comes to reminding me that it’s probably time to reorder insulin and NDSS products and prompts me when I need a new insulin prescription and I cannot tell you how much I love her. She sends me texts messages (totally unobtrusive) and I reply by text and then a day or two later pop in and she has everything ready for me. I can’t remember the last time I ran out of something, thanks to Mae!

But for me, if there was a silver bullet, it would be this: I am motivated because of today. Today, I have been able to do everything I have wanted to do and diabetes has not stopped me, even momentarily. And that makes me want to do it more.

I know that a large part of that is that I have the capacity, the will and the ability to do what I need to make this happen. I speak from a position of privilege, because I also know that the devices I am using – and am able to afford to use – certainly do help me with everything. They have helped to make my diabetes today doable, manageable, and as untroublesome as diabetes can be.

You can threaten me with what is going to happen in five, ten, twenty years’ time; you can tell me about all the disabling and debilitating complications that will happen if I don’t remain motivated and how they will impact on my life as a fifty, sixty and seventy year old.

But unless what you are saying is going to impact on me right here, right now, I can ignore it, and I can ignore the things that may help me reduce the risk of those things happening.

Perhaps that’s where public health messages about diabetes get it wrong. They tend to focus on longer term impacts. It’s not just teenagers who believe they are invincible. Despite a body that each and every day looks less like that of a sprightly youth, I think I am still young. I think all the things that are considered long-term issues are still years off. Being unmotivated doesn’t seem to matter when I don’t need to deal with those issues today.

But when diabetes does impact on my day now, then I notice. More hypos, more hypers, more interrupted sleep, more roller coaster numbers, more exhaustion, more feeling crappy. All of these things make day to day life more difficult. And I want to avoid them as much as I can.

I’m quite pleased with my solid 3.5. Sure, it could be better. Sure I could do more. But it’s consistent. And it’s achievable. Plus, quite frankly, everyone around me should be pleased with the absence of interpretive dance.

Click to get your own Casualty Girl bag.

It’s Women’s Health Week here in Australia and once again, Jean Hailes for Women’s Health has been doing a stellar job of talking about women’s health issues that are rarely (if ever) spoken about in the public sphere. As usual, this year’s campaign is presented in a clear, no-nonsense way. Just as it should be.

Shining a light on women’s health issues is critical for a number of reasons. There is still too much stigma associated with women’s sexual and reproductive health, so finding a way to easily speak about the realities of women’s health just makes sense.

Not all women’s health issues necessarily seem relevant to diabetes. But, as ever, diabetes has a way of complicating things, so it makes sense that they are on the list of things covered when speaking with our HCPs.

I honestly can’t remember the last time my GP spoke with me about any sexual or reproductive health issues. Some women see gynaecologists regularly (I see mine every couple of years for a pap smear), but that may not be the case for most women. Surely conversations about contraception, periods and other things should be part of a regular check-up alongside other ‘tick the box’ issues such as blood pressure, cholesterol and weight.

I wish that I had seen an endo from the beginning who had spoken to me about women’s health stuff. I know that it wasn’t until I found the endo I see now – one who I sought out specifically for her expertise in women’s health and pregnancy – that issues such as contraception were even mentioned.

So, here is a (non-exhaustive) list of things that women with diabetes may want to consider chatting to their HCP about – and that HCPs may want to consider speaking with PWD about. (There are links at the end of the post for where to go for further information.)

Periods. To be honest until I was trying to get pregnant, I really didn’t think much about my period. I thought of my lack of regular periods (as in, I would get my period sporadically maybe four or five times a year) as a blessing, rather than something to be concerned about. Of course, once I was trying to get pregnant, I was desperate for a monthly period that I could set a clock to.

No HCP had ever spoken to me about how diabetes would impact on my period – or, probably more importantly, vice versa. I had no idea about how different times in my cycle might affect my glucose levels. In fact, I think it wasn’t until I started wearing CGM and could really see what was going on that I learnt how to manage my insulin doses at different times throughout the month. (And it also explained the two days each cycle I was so freaking low I pretty much took no insulin. Apparently that’s how MY body deals with ovulation..)

If I was diagnosed today, I would be asking a lot of questions about diabetes and menstrual cycles and the best way to adjust my management methods depending where I am in my cycle.

Sex. When I’ve written about diabetes, women and sex before, I’ve noted how at diagnosis no one spoke with me about how diabetes could impact on my sex life. It wasn’t until I started speaking to other women about it that I realised that this is an issue for a number of us.

We need to start talking about women with diabetes and sex in a non-threatening way that normalises the discussion. (Keep an eye out on the work that started with the Kath Barnard’s survey on this important issue.)

Contraception. No one mentioned contraception to me when I was diagnosed. I was twenty four, engaged to be married. Surely both the endo and CDE I saw the day I was diagnosed realised that I was having sex, or considering it after I was married. (I really, really hope that they didn’t think that they didn’t need to speak about it with me because we weren’t married yet…because it was only 20 years ago and there’s no place for puritan attitudes in healthcare. Plus, that ship had sailed. A long time before.)

At the time, I was on the pill, but there was no discussion about the best form of contraception for me relating to diabetes, (was there a better pill to be on?), and I didn’t know to ask. Surely, all women of child-bearing age should be asked regularly about  contraception, especially as women with diabetes are so often told about the importance of avoiding unplanned pregnancies.

Pregnancy. Thankfully, these days finding information about diabetes and pregnancy is relatively simple. If you know where to look.

But twenty years ago, when I was diagnosed, the only thing I was told about diabetes and pregnancy (and I think it was only because I asked) was ‘You need to have all your kids by the time you’re thirty’. (Not sure if just scraping in three days before I turned 31 counts there. Probably not. Looks like this deliberately non-compliant palaver has been happening for a while….)

Talking pregnancy and diabetes needs to be done delicately, but it needs to happen. And, ideally, it needs to happen long before pregnancy is even being considered.

Back in 2003 when I was at Diabetes Vic, I coordinated the first diabetes and pregnancy info evening. Over 100 people were squashed into an overheated room in the basement of the old Royal Women’s Hospital. At the end of the night, I was walking around speaking with as many of the people who had come along as possible to see if they had found the evening useful. I walked up to one woman and thanked her for coming. ‘I hope that you found tonight helpful,’ I said to her. She nodded at me, and I noticed she was holding onto a copy of the ‘Can I Have a Healthy Baby?’ booklet that Diabetes Victoria had published with Realty Check and ADIPS the previous year. ‘My daughter has T1D,’ she said to me. ‘She’s only 8, so obviously this isn’t something that is relevant now. But I wanted to know so that when she asks questions I can answer them. I feel really reassured that she can have a baby if she wants one if it’s planned.’ I remember reaching out to her and hugging her (I have no boundaries). ‘Your daughter is so lucky to have you in her corner,’ I said to her. ‘Thank you for coming!

Fertility. This isn’t the same as pregnancy. It’s not an easy subject – ever – but it is one that needs to be discussed openly and safely. I can honestly say that no healthcare professional has ever discussed fertility with me unless I have raised the issue.

My experiences around fertility have been complex, emotional and quite painful. It took me a while to get pregnant the first time. My irregular periods needed to be addressed (fortunately, that was easy enough with only Chlomid needed), but even once I was having monthly cycles, and apparently ovulating regularly, I could not get pregnant.

When finally did, I miscarried. Miscarriages are common. I know that. But it still sent my spiralling into a really difficult period which took a lot of time and effort to emerge from. I got pregnant and had a baby, and thought that from there, fertility issues would be a thing of the past.

But I think that because miscarriages are so common that sometimes it can be forgotten just how traumatic they can be. My first miscarriage ended my first pregnancy, and the two other miscarriages I had ended those ones. It’s clear that while I seem to be able to get pregnant, keeping those babies growing, safe and alive is not something my body does well. I wanted that explained to me – or at least for someone to speak with me about it.

Diabetes and fertility was never, ever discussed with me, except that I was reassured after each of my miscarriages that I could not blame diabetes for losing the baby. That was a double edged sword because I wanted to know what it was that was stopping me from being able to continue my pregnancies. I would have liked to be able to point at something. Because the alternative is that it’s just another thing my body can’t do properly.

PCOS. I was diagnosed with polycystic ovarian syndrome when I was about 26. I’d been referred to an OB/GYN by my endo because she wanted me to have a gynaecological check-up because we’d started seriously talking babies. My lack of regular periods was flagged as something that needed investigating and an internal ultrasound showed a number of small of cysts all over my ovaries. I had no other symptoms of PCOS, but that was enough for my OB/GYN to speak with me about potential fertility issues once we were ready to start trying for a baby. I had a laparoscopy and they were removed.

Both type 1 and type 2 diabetes can increase the risk of PCOS (more so type 2 diabetes) so this is definitely something to discuss with your healthcare team if you are in any way concerned.

Body image. I don’t even know where to begin with this because body image is such a huge, huge concern for so many women, and I really do believe that diabetes amplifies those concerns. Whether it is the physical signs of diabetes (tech that we wear on our bodies), the psychological side of being diagnosed with a life-long health condition or the emotional toil of having an allegedly invisible condition that we can’t help but see every day, living with diabetes significantly affects how we feel about our bodies.

This is one of the reasons that having a psychologist as part of our HCP team is important, because we need people who are able to ask the right questions and offer support and solutions for dealing with how we see our bodies.

Eating disorders. Diabetes and food; food and diabetes. It’s impossible to separate the two, and for some people, the relationship is complex and very, very difficult. Women with diabetes do have an increased risk of developing an eating disorder, and of course, there are diabetes-specific eating disorders. And, unfortunately, this is another issue that is not spoken about openly.

Menopause. At my last appointment with my endocrinologist, I raised something that I’d not raised yet. ‘What can you tell me about diabetes and menopause?’I asked her.

I’m not going through menopause – I’m not even peri-menopausal yet. But I don’t need a magic mirror into the future to see what lies ahead. And I like to be prepared.

So, there’s something you should know about how I came to see the endo I have been seeing for the last almost-17 years. I was searching for someone who could help with what I really needed, one of them being an expertise in T1D and pregnancy. She was absolutely the right endo for me then. And continues to be now, because recently, she has become an expert in menopause. (I know! It’s like she is a few years ahead of me in her areas of interest and expertise!)

If I’m honest, I’m a little stressed and worried about what menopause has in store for me when it comes to my diabetes, mostly because I know nothing about it. We’ll see how that plays out…

Self-care. Why do women find it so hard to prioritise our own care and take care of our own wellbeing? We do need to get better at fastening our own oxygen masks before making sure that everyone else on the plane has theirs in place.

This might be another reason to consider seeing a psychologist to ask for some tips for how to make sure that we remember to look after ourselves in a way that is healthy, consistent and achievable.

Pelvic floor. Diabetes, as the gift that keeps on giving, can mean our pelvic floor isn’t as strong as it could be. Just as nerves in other parts of our bodies can be affected by our diabetes, so can the ones in our pelvic floor.

(You’re doing your pelvic floor exercises right now, right? Yep. Me too.)

Looking for more info? Have some links…

Here’s the Jean Hailes for Women website for Women’s Health Week.

The rather awesome Mindy from There’s More to the Story has been writing about diabetes and sex over the last couple of months and her posts are a must read. I wish I’d had something like this to read when I was first diagnosed.

Some information about diabetes and PCOS.  This article is about type 1 diabetes and PCOS. And this one is about PCOS and types 1 and 2 diabetes. 

The NDSS Diabetes and Pregnancy website is an absolute goldmine of information about pregnancy and planning for pregnancy. There are different sections for women with type 1 and type 2 diabetes, HCPs and loved ones of women with diabetes.

The NDSS Type 1 Diabetes and Eating Disorders booklet can be found here.

Lots of valuable information for PWD and HCPs at the Diabetes and Eating Disorders Awareness website.

I don’t get hit for six by diabetes much anymore. (Before we go on, please applaud that sport-ish reference there. I really must be growing as a person.)

Those days that would almost be a write-off thanks to a hypo that moved in, set up house and then wouldn’t clear out for hours, or hypers that made me think my insulin had turned to water and made my head so foggy and cloudy and stormy (all the weather analogies), just don’t seem to happen these days. I don’t have nights spoilt by erratic glucose levels and I don’t feel the hangover of lows and highs the way I once did.

This is all good news.

The daily impact of diabetes – both physically and emotionally – has diminished considerably and for that, I am eternally grateful to the magicians who have made Loop available to technology-fools like myself.

But this week? This week, diabetes has reared its ugliest of heads and I have been hit for six. My post the other day was called ‘Waking the beast’ and I think perhaps that is what has happened here. Except the once familiar beast is different now. It’s mutated into something I don’t recognise, and don’t know how to manage.

I don’t even have a word for what it is that is going on right now and if I’m perfectly honest, I don’t understand it. I thought that after my appointment with my endo and my ‘all is well’ complications screening conversation I’d be back to feeling less burdened and less fraught.

Yeah; about that. I was wrong. I certainly did feel lighter as soon as I left my endocrinologist appointment the other day…at least, I did for a few hours. (I even wrote about it!) And then I didn’t.

This week, I’ve found myself lying awake late into the night, thinking about diabetes and the scary things that I really don’t like to think about. During the day mind wanders to that dark place in my conscience, and I feel my breath catching and my heartbeat quickening for no reason.

As I lie awake at night, or am alone in my car driving to work, or standing in the kitchen preparing dinner, I suddenly feel diabetes in my body, flowing through my veins, being absorbed into my bones, twisting itself into my brain. And it’s been winding itself into my dreams when I finally do fall asleep.

What is this? It’s not burnout. To be honest, I do so few diabetes tasks these days that it’s not about being overwhelmed by daily diabetes. I am not ‘over’ diabetes. I don’t even feel that I hate it.

Perhaps the reason that it doesn’t make sense to me is because I can’t point to something and know what I need to fix. This isn’t a matter of needing to do some basal tweaking, or adjust what I am eating, or pre-bolus a little sooner. This has nothing to do with day-to-day diabetes. This is beyond that. This is deeper than that.

I feel diabetes – in, around and through my body and mind. This is within the very core of my diabetes. And the very core of me.

This photo I took at MONA last month of Pat Brassington’s ‘Cornerstone’ seemed a perfect image to accompany this post. (Click for more details of the artist.)

I am a master outsourcer. I outsource as much as I possibly can – from cleaning our home, doing our garden, washing the car and grooming our dogs. I used to feel guilty about this. Then I realised that doing these sorts of things make me irritable and bad-tempered, and it’s better for everyone – mostly and especially me – to just get someone in to do them so I don’t need to a) do them myself and b) get shitty because they are not getting done. (I should add that Aaron feels exactly the same way. He has no desire to do any of those things either, so the outsourcing is a joint decision and one that makes for a far more harmonious home.)

The other day, a new outsourcing device made its way into our home. Despite having someone frequently come and give our place a thorough clean, three dogs and a cat make for grotty floors. Most days, the timber floorboards need a quick going over to gather the dust bunnies and pet hair that collects in corners. Not anymore! This little helper is going to take care of that from now on!

Outsourcing makes sense. And as I have become older, wiser – and some may say lazier – I continue to look for ways to help with the more mundane things in life.

Hello, diabetes…

Many years ago when my diabetes – and I – were not in a great place, I mentioned to an endocrinologist (not my current endo), that I was so overwhelmed by, and over diabetes and I wished that there was a way that someone could do it for me for a week or so. ‘You can’t outsource your diabetes to me,’ she snapped. I’d not suggested her being the one to step in and take over, but she was adamant that it wasn’t going to happen – just in case I was considering asking. (She was promptly sacked after that comment.)

I frequently hear people (myself included) say that the most relentless thing about living with diabetes is not being able to take a holiday from it. It’s true. Even if you have someone helping with caring duties, the toll of having this unwelcome visitor using your body as a guesthouse is unyielding. And even when we manage to find a way to share the load, (for example, partners doing night-time glucose checks, or being responsible for keeping hypo stores replenished, or scheduling HCP appointments, or making sure that insulin prescriptions, glucose strips, pump consumables, sensors etc. are all ready and available at home), there is no sharing or removing the load of the emotional toll of having diabetes.

So with all this in mind, I was a little surprised to hear myself say that I had ‘outsourced my diabetes’ when, at a recent presentation I was giving, a HCP asked me about Loop. I’ve been thinking about that comment quite a lot since I made it. Is it really accurate an accurate thing to say.

I guess that to an extent, it is partially true. I spend less time thinking about diabetes and less time ‘doing’ diabetes. Loop takes over a lot of the things I used to do. This was reiterated in Justin Walker’s talk at Diabetes Mine’s DData Exchange event on day one of ADA last week.

Loop doesn’t make diabetes go away. It doesn’t even take away all the tasks – I still am responsible for making sure that my pump cartridge is loaded, cannula is in working order, sensor is reading. But thanks to the automation, it does take away some of the responsibilities. I guess that the reduced burden comes from the positive results I see every time I look at my Loop app – jut knowing that it is doing its thing and will let me know if something is wrong – takes away some of what I once had to do myself.

Outsourcing is about sharing the load. It’s about handballing some of the tasks and responsibilities of life to someone – or something – else. Loop is the very definition of that!

I woke yesterday morning to a shit storm on Twitter. I had dozens and dozens of notifications where I had either been retweeted, mentioned or @-ed. (And yes, sorry, I did just turn the @ symbol into a verb). I was hoping that someone was sharing news with me that in the eight hours I’d been asleep, diabetes had been cured, JK Rowling had released a new Harry Potter book, or Nutella would be sponsoring me to…well, eat Nutella.

Alas…it was none of these. No; it was not.

I slipped down the rabbit hole of people replying to a tweet where I’d shared an awesome blog post by my mate and all ‘round wonderful human, Georgie Peters. Georgie was commenting on the recent study which has been widely shared (and written up in the NY Times) about type 1 diabetes and LC diets. (If you’ve not read the NY Times article, do! The study is really interesting and as someone who predominantly follows LC it all makes perfect sense to me…and makes my CGM trace devoid of roller coasters lines.)

Georgie’s piece was not demonising LC. In fact, quite the opposite. She was suggesting that it is absolutely a valid way of eating for some people, just as eating moderate to high carbs might be.

Distilled into one word, Georgie’s post was about CHOICE.

In more than one word, Georgie was warning that diets that are inherently restrictive in nature could lead to an increased risk in eating disorders. Georgie was specifically referring to children on LC diets who are not given a choice in the way they are eating, or as she far more eloquently puts it: …the food choices of children and their right to bodily autonomy.’

Choice. It all comes down to choice.

Apparently, that was completely lost on the people challenging what Georgie was saying. One person was somehow trying to say that the idea that a diet restricting carbs was no different to a kosher diet, and does that mean that people following a kosher way of eating have an increased rate of eating disorders? (If you can join the dots to make something that even remotely makes sense, please do so for me, because I have tried and keep coming up with a massive question mark.)

Another doctor claimed that she insists all her surgical patients go on a low carb diet (pre-surgery), and that they have no choice in the matter. Two things: type 1 diabetes isn’t the same as prepping for surgery. And any doctor who even suggestedthere being no choice in anyaspect of my diabetes management would be given the sack very quickly. (I’ve no idea about pre-surgery diets, because that’s not my thing. Diabetes is. Georgie’s post was about diabetes, not about pre-surgery diets. The surgeon’s comments added to my confusion, because: apples and oranges…which are probably banned on her LC diet. And further down the rabbit hole we go.)

The food we eat; the diet we follow, are inherently personal choices. No one has the right to insist that there is only one way of eating. One of the frustrations that some of us who do want to follow a LC diet have is that there are some HCPs who refuse to even acknowledge that it could possibly be a positive and useful diet for people with diabetes, some going so far to say it is harmful.

The other day as many of my friends shared the NY Times article, I saw them plead for others to open their minds. I want that, too! I want people to have the information about how LC might work as a diabetes management strategy and be open to the idea. But more than that, I want people to then choose what works for them.

And when it comes to parenting (and I know that I don’t have a kid with diabetes, but I am a parent), I know this to be true: we all want what is best for our children. The thirteen-year-old in our house doesn’t have complete autonomy over food choices, because I do ninety percent of the shopping for food and cooking. I like it that way, because I get to eat what I want, and don’t have to do any of the cleaning up after I’ve messed up the kitchen! Win, win!

While she doesn’t have a choice in what is served up at the dinner table, she does get to decide what of it she eats. I know she doesn’t have diabetes, so when it comes to thinking about food, she doesn’t have to consider her glucose levels. But there is far more to health than that.

I am doing all I can to inform and educate her on what makes for a healthy, balanced diet. I have to trust that what I am doing is enough to result in her making healthy choices most of the time.

Choice – that’s what Georgie was writing about. Is it really that hard to understand?

In kind of related, but really, just that I want to share something: this nut and seed bread is incredible:  

It’s low carb (at least, it is the way I make it, because I swap the oats for coarsely ground hazelnuts) and, quite frankly, is the best thing I have ever eaten. (To make it decidedly not low carb, slather in Nutella…!)

When I was in my teens and twenties, I was, just as many women are, dismayed with the way I looked, and susceptible to the claims of beauty products that promised I could be thinner, more toned, more beautiful, smoother, more attractive, more <insert whichever part of me obviously needed improving>.

Of course, all of the things I was desperate to change and refine were measures of my worth, right? Because if I was thinner, more toned, more beautiful, smoother, more attractive, more <insert required improvement> that would make me a better person. Right? Of course.

I didn’t look like one of the supermodels (not just models, mind; these ones were super) that were everywhere I looked. At the time, I was spending all my energies being a flute player, but even the classical musical world wasn’t spared the attention to how women should look, with Jane Rutter suddenly appearing wrapped in nothing more than a bedsheet and a sultry look (impressive with a flute shoved against her bottom lip, while playing Debussy). ‘Great’, I thought. ‘Now not only do I have to look like a fucking model. I have to do it while playing flute. Naked.’

The feelings of inadequacy were strong and I know I spent far too much time desperately wishing I looked different. I probably spent too much money on products that promised to make that happen. And delivered nothing.

When I was twenty-one, someone gave me a copy of Kaz Cooke’s fabulous book Real Gorgeous. I can’t remember who it was, but suspect it was my mother. I read it in one sitting. I already knew of Kaz Cooke (from her brilliant ‘Keep Yourself Nice’ column in the weekend papers), but this book was a revelation. She laid bare all the sneaky tips and tricks and lies the beauty industry used to expose our insecurities, feel as though we needed to be different and, subsequently, buy their products. Of course, I already knew what she was saying. There was nothing in there that, when I had a moment of rational thinking, I didn’t already understand. But to have it set out so practically and emphatically was just what I needed to get over the idea that I needed to look and be different to how I was.

I actually saw Kaz at Marios over the weekend and stopped her she walked past me. I introduced myself and the kid (who was so horrified and embarrassed that she looked as though she wished the ground would swallow her up), and thanked her for all her books, but especially Real Gorgeous. ‘It saved me, in some ways.’ I told her.

And it did. It stopped the self-doubt. And it made me confident enough to admit to myself that I was more than enough. Just the way I was. And that nothing about the way I looked needed improving. (Thankfully, this was before I tried any naked flute playing. At least, any in public…)

As it turns out, I struggled with the same insecurities and feelings of inadequacy and self-doubt when it came to being diagnosed with diabetes. I think it is only in recent years that I have come to understand that the constant second guessing about being good enough achieves nothing other than increasing my anxieties and contributing to burn out.

With time, I came to apply the same cynical filters to diabetes product advertising as I now had permanently in place when looking at health and beauty advertising. In the same way that not every woman looks like Cindy Crawford, not every blood glucose check will be 4.8mmol/l.

‘Real Gorgeous’ wisdom on the left. Real diabetes on the right.

One of the most damaging things that we can do is compare ourselves to others. Because when we do, we often fall short. Our A1c may be higher, our time in range lower, our technology not as advanced, our healthcare professionals not the ones on the TV or on conference stages.

Being around and sharing with others living with diabetes is wonderful (here are twenty reasons why) but it can be damaging if the only thing you are doing is using them as a yardstick for your own diabetes.

It took me many years to stop feeling that I needed to ‘keep up’ with my diabetes peers, or that my diabetes needed to look like someone else’s diabetes. While I may try to align myself with others who have similar ideas about diabetes, I do it on my own terms, using and doing the things that work best for me.

The way I have adopted DIYAPS is not the same as many others. I call it ‘Loop Lite’, using just the absolute basics, without any of the add-ons. I don’t produce pages of graphs to analyse, because that’s not what I need. But what I do is perfect for me.

The same goes for finding the way to an eating plan that works for me. While learning about the details of LCHF, I refused to go ‘all in’ as many seem to. I adapted it for the way I live.

The way I do diabetes and the way my diabetes behaves is enough. It is right for me. It is my Real Diabetes.

Today, I have a brand new copy of Real Gorgeous on my desk, all wrapped up. It’s a gift for the kidlet who is already a huge Kaz Cooke fan (she has had Girls Stuff on her shelf for a few years now).  She already has a very healthy filter when it comes to beauty advertising, but I know that it is possible that she will be susceptible to the same feelings of self-doubt that I was.

I want her to know she is enough. So very much more than enough. We all are.

Click on photo to order your own copy of ‘Real Gorgeous’.

There is an indescribable feeling I have following a diabetes conference. Swirled in amongst the exhaustion, information overload, jet lag (because conferences are always in ridiculous time zones that are not AET), and memories, I come back galvanised in a way that can only happen when spending time with those in my tribe: others living with diabetes.

I returned from three days in Vienna bone-achingly exhausted. After being reunited with my family and not being able to stop hugging them, a few days of not-great-but-okay sleep and bucket-loads of Melbourne coffee under my belt, and time to process and write about what I learnt, I find myself recalibrated and ready for what’s next.

The hours of travel is a memory, the conference sits comfortably alongside all the others I’ve been too, my conference name badge is hanging in my office with all the others, and I’ve plans already underway from successful meetings.

In a lot of ways, the status quo has been restored and I am back to my real life after a few days of conference life.

But what is not the same is the level of vitality I now have, my veins pounding with the vigour that comes only from spending time with the people who are working to and for the same things because they get it at a personal level that is only apparent to those of us whose very DNA is affected by this condition.

I came to realise a few years ago that I have an invisible jar in my mind, and how empty or full that jar is depends on the time I’ve spent with likeminded diabetes friends. When the jar is nearing empty, I find it difficult to focus my energies on the advocacy and support issues that often are front and centre of my mind. I feel myself flailing and falling short because I don’t have the support of those I need to boost me up.

Of course, I am lucky enough to have others with diabetes around me even when I am in Melbourne (hello neighbour!), but it is those I see at these sorts of conferences – the ones whose minds and hearts are full of similar ideas, similar frustrations and find similar reasons to celebrate– that fill that jar right up. It is when I can simply turn to someone because they are sitting right there, have an animated conversation and high five each other with our enthusiasm that I feel capable and able to take on the world.

Those people who share my pancreatically-challenged existence, who breathe the same health condition, and struggle, celebrate and despair in similar ways to me, are the ones who fill up the jar ways to sustain me until the next time. My motivation is high, the momentum fast, my mind is working overtime. And my jar is overflowing right now with those people who may have beta cells that don’t work, but they make up for it in ways you couldn’t even begin to imagine.

Tine – who inspires me every time we speak.

Follow Diabetogenic on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Read about Renza

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Archives

Twitter

Advertisements
%d bloggers like this: