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I’m in Canberra today, at Parliament House, for a lunch event focussing on diabetes technology. As usual, I’m surrounded by a group of smart people such as Professor Jane Speight and Professor Alicia Jenkins. Me, in my role as a non-professor, is to provide the consumer perspective about why freedom and choice when it comes to 
diabetes technology is something that should be supported by government.
Today, Diabetes Australia is launching an important new report about insulin pump therapy in Australia. It provides recommendations and the case for action, and gives a snapshot of the current situation – not only of pump therapy, but other technologies such as continuous glucose monitors. Pleasingly, and with a nod to the future, emerging technologies such as the ‘bionic pancreas’ are also mentioned.
The report highlights the inequality of current pathways to access pump therapy. If you are unable to afford private health insurance, or not under 18 years of age and meet the eligibility criteria of the Government funded Insulin Pump Program, you are left to self-fund the purchase of a pump. At around $9000 that’s a lot of loose change to have lying around under the sofa cushions.
Sensor technology is not funded at all, leaving people with diabetes to find the dollars themselves. For me – and many others – being able to use a sensor-augmented pump gives incredible peace of mind, and reduces diabetes distress. It is not fair that this technology is out of reach for most people.
I’m really honoured to have been asked to tell my story to the group of MPs who will be at the lunch. In my time doing this job, it has become more and more apparent that having people hear and understand how living with diabetes impacts us on a day to day basis helps to bring the message home about life with a chronic health condition.
Living with diabetes cannot be tied up neatly in a box – it is complex, changes all the time and is different for everyone. Being able to manage our condition should be a matter of choice – not finances. Hopefully today the group of politicians hearing us will understand that a little bit more and start working towards developing an approach to pump therapy (and related technologies) for all Australians with diabetes.
DISCLAIMER
I work for Diabetes Australia – Vic and have been involved in the development of the resource being launched today.
Last month, I wrote a piece for Mamamia’s health and beauty sister site, The Glow. I wrote about how diabetes is sometimes referred to as an invisible illness because often there are no obvious, outward signs that say ‘I live with diabetes’.
This week, there’s been a lot of talk about another invisible illness – depression. I don’t even know where to begin writing about mental health. But I should be – we all should be. And we should be talking about it. A lot.
Not everyone is comfortable talking about their health conditions – whether it is diabetes, cancer, MS or depression. Perhaps there is more ‘acceptance’ of some conditions when compared with others. I know that when it comes to diabetes, the stigma and judgement can be exhausting. I expect that for those living with depression or other mental health conditions, the experience would be similar.
The invisibility of conditions like diabetes or depression is perhaps what terrifies me the most. Being able to conceal what is going on means not getting the support that may be needed. Not everyone knows how to ask for help. Not everyone wants to ask for help.
I am more than happy to talk about my experiences. Many others are too. And when I write about things that I am finding difficult, I feel enveloped with care, support and love. But what about those who don’t? What about those who are keeping things hidden from their loved ones and friends and colleagues?
Should we be more worried about the person who is getting up every morning, going to work and interacting with their colleagues, but has not shared their struggles? Last year, when I wrote about RUOK day, a very clever person (who may or may not be my sister) commented that it’s important to remember those who may appear ‘fine’. She’s right. We don’t think about those people enough.
I don’t have answers for any of this. The death of the magnificent Robin Williams has people talking. How do we keep the discussion going? How do we give people who need help the avenues to ask for it without feeling they will be judged? How do we stop people from taking their lives because they see no other way out? How do I say ‘how can I help’? How can I help?
“Depression is the most unpleasant thing I have ever experienced. . . . It is that absence of being able to envisage that you will ever be cheerful again. The absence of hope. That very deadened feeling, which is so very different from feeling sad. Sad hurts but it’s a healthy feeling. It is a necessary thing to feel. Depression is very different.”
-J.K. Rowling
It’s Friday and I could only think of this clip for this week.
Yesterday, I won at diabetes.
My BGLs sat between 4 and 6 all day. Every time I pricked my finger to check, a beautiful number stared at me. My usual clumsiness was absent and my diabetes tasks were fluid and smooth. If I was in a movie, there would have been soft lighting, a very cool soundtrack and possibly glitter. Or fireworks. I love fireworks. And a unicorn. Yes, a unicorn.
But did I enjoy it? Not so much. Because I was incredibly suspicious of it all. I was waiting for the moment where things would turn. Or I refused to believe my BGL meter – I checked four times on three different meters at one point to prove that there was no way I could be sitting at 5.0mmol/l. I was – at least within a 0.2mmol/l margin.
I couldn’t relish the fact that I was feeling ‘even’. I couldn’t just say ‘this is a good diabetes day’.
But it was. When the day came to an end, and I scrolled through my meter readings, it was a good day, based on numbers.
Diabetes has a way of sucking the enjoyment out of life. Those days when we are low, low, low or high, high, high our energy is zapped and we feel just blah (technical, highly-scientific terminology there). But that kind of makes sense. Low blood sugar sends me into a fog. So does persistently high blood sugar. I feel crap. I worry about things. I hate diabetes.
It annoys me that on the days where I’m ‘just right’ and not feeling terrible I can’t (or don’t) just cruise along and feel great.
It was back to reality today. A lovely mid-teens number to wake up with reminded me that yesterday was certainly not typical. I’ve been chasing a low since then, and now, as I sit down to lunch, I’m sorting out my plan of attack to stop the yo-yoing. That right there? That’s the diabetes I’ve come to know and love expect.
How often do you think about diabetes in a day? In an hour?
On those days that I think of diabetes about once an hour (when awake), I know that I’m doing okay. That may seem a lot, but it could be because I’m checking my BGL, bolusing for something I’m eating, doing a line change, thinking about eating something, making something to eat, about to drink a coffee with added sugar. It could be when I am getting dressed in the morning and remembering to reconnect my pump or pulling my pump out from my bra to check my CGM.
Sometimes they are passive thoughts, other times deliberate and actioned.
When this is my activity level, I know that I’m tracking okay.
But when I go for a few (say 4 or 5) hours or even a whole day without thinking about diabetes, I know I’m not tracking quite so well. On those days, I don’t check my BGLs, I don’t check what my CGM is telling me (maybe because I’ve not got a sensor in, maybe because I just can’t be bothered), I may not be eating particularly well or at all, so don’t bother bolusing. Sure, I passively thought about diabetes when I stepped out of the shower that morning and reconnected my pump, and perhaps I blind bolused for the sushi roll that made up lunch, but that could be my entire day of diabetes ‘chores’.
And equally, if I’m thinking about it more than once an hour, I know that something is not quite right. It could be that I’m high and trying to manage that by checking my BGL every 10 minutes hoping for a drop – even a teeny tiny drop – in numbers. At the same time, I’m anxiously trying to walk the tightrope that is enough insulin to bring me down from the hyper ledge, but not rage bolus and send me crashing. I’ll probably be starving, so I’ll be thinking about food and calculating carbs and making deals with myself as to what my BGL has to get to before I can eat.
Or, I could be low and trying to deal with the pounding heart rate that is a doof-doof reminder of my hypo-state. Probably over-eating, I’ll be checking my BGL every five minutes, looking for an upward trend in my numbers.
Either way – high or low – I’ll be thinking food, numbers, hoping for balance, worrying about over-treating, over-medicating.
It’s such a fine line.
Too much…
Too little…
Just right.
Yesterday afternoon, I made a mercy dash to the florist because I felt an overwhelming need to have some white flowers in the house. On our kitchen table, we now how a huge bunch of early cheer sending out the sweet fragrance of the promise of Spring, and in our bedroom is a bunch of pretty, delicate white roses.
Flowers and anniversaries go together, hand in hand – sometimes as a celebration. Other times to commemorate.
The last couple of weeks have been quite difficult for me as it’s the anniversary of my miscarriage. Twelve months ago today was the final in a series of operations I needed – I guess it represents the ‘closure’ of the pregnancy. The actual date of the miscarriage was two weekends ago, and it was a tough day for me. And today is also a difficult one.
Anniversaries – the good and the bad – are important to me and I like to mark them all in some way. Not everyone feels this way, but for me celebrations such as birthdays, wedding anniversaries, diaversaries, are significant and definitely should be recognised. This doesn’t necessary mean with grand gestures, but at least an acknowledgement. I also believe in commemorating the sad occasions.
Perhaps fortunately, it has been a very busy time at work, so I’ve not really been able to think too much about this particular anniversary. But in quiet moments, when I’ve been alone with my thoughts, the memory of what we lost and what could have been has occupied my mind.
This weekend I’m planning to take things a little easy. The flowers in our home will be a reminder not only of what happened, but also how far I’ve come in the last twelve months. Gently, gently, moving forward.
Last night I was completing an online survey about wellbeing and came to the questions that asked about my health – specifically did I feel healthy?
The answer was yes, I do feel healthy. The only time I don’t is when I am dealing with a cold or virus of some description. Then I generally feel like crap and whinge a lot.
But I do have diabetes – a chronic health condition. Yet I’ve never thought that diabetes makes me unhealthy. Does the simple fact that my beta cells have been AWOL for over 16 years now mean that I am not ‘in the pink’?
To me, health has always been about more than those nonoperational beta cells? Surely that negative gets over-ridden, or at least balanced out, by the many positives in my life.
It had me thinking about health and happiness. I wondered how healthy we can be when we are feeling unhappy. I know that in times when happiness has seemed an abstract concept, I’ve not felt healthy. But this rarely has anything to do with diabetes. My diabetes numbers can look fine, but overall, I don’t feel great, perhaps because I am ‘not looking after myself’ and eating a well-balanced diet (or not eating at all). Perhaps because I just shrink away and don’t surround myself with the things that contribute to my happiness.
The next section of the survey focussed on happiness. Did I feel happy?
My answer to that question at that very moment was also yes. I was in our warm home, dinner was about to be served up to me and I could hear the kidlet in the other room playing with the cat – of course I was happy (the cat? Maybe not so happy as she was being killed with love and kindness)! I was then asked to list the things that contribute to my happiness. That was easy.
I have a family that brings me great pleasure. My husband and daughter as my immediate family, and my (rather huge) extended family of parents, sister, in-laws, cousins, aunts and uncles may be crazy and loud (and at times frustrating) but generally are fun to be around. There is a lot of laughter and isn’t that good for the soul and our health?
I have friends here and abroad who I love. They provide much support, joy and fun.
And I have a job that is rewarding and enjoyable and one for which I feel incredible passion. I feel very fortunate that my nine-to-five isn’t mundane or boring or devoid of any real interest.
I am very lucky to be able to regularly do things that I enjoy – I see a lot of movies and live music and sit in cafés and bake and cook and feed friends and travel and read.
These things contribute to my happiness. And contribute to my sense of wellbeing. Which contribute to my feelings of health.
I do believe that there is an inextricable link between happiness and healthiness. It’s tangled and can be messy. Perhaps happiness also contributes to emotional wellbeing and that leads to good health. I don’t know the answers here. All I know is that I answered ‘yes’ to feeling both happy and healthy. I should feel (and do feel) pretty fortunate for that.
My insulin pump, CGM and BGL meter all talk to me. (I just reread that statement and realised how weird it sounded. Thankfully – hopefully? – this is an audience that understands I’m not hearing voices and having conversations with devices.) They alarm and alert and let me know when they feel they need some attention.
And then last week, out of nowhere, my mobile phone got in on the act. I started receiving alerts at 11am each day, providing little reminders and prompts to help me live better with diabetes. At least that was what it was promising.
Somewhere, I must have signed up for this. As smart as my phone may be, it’s not likely that it signed up itself. Nor that my smart pump or smart meter made a call and hooked up with my phone. On one of the health apps or websites I use, I must have ticked the box that said ‘please send me annoying updates. At 11am. When I want to eat a doughnut. Telling me to NOT eat a doughnut. Which just makes me want a doughnut more. Now, where do I find a doughnut?’
The first day I received my 11am alert, I was a little surprised. It was a lovely, gentle ‘you’re-a-ok’ kinda message that made me feel quite loved, really.
The second day, it reminded me that breakfast was the most important meal of the day and linked to some ideas to start my day right. Disappointingly, my breakfast of nothing with a coffee chaser was not on the list.
The third day, it reminded me that checking my BGLs two hours after eating would allow me to correct any high BGL following the healthy breakfast (from the previous day’s list) I would have eaten that day.
The fourth day, it reminded me that carbohydrates are an important way to get energy, but not all carbs are created equal, and linked to a table that showed the best carbs to eat. Once again, I was disappointed. My favourite carbs (Nutella, anything containing Nutella and doughnuts. Filled with Nutella) were not on the list.
The fifth day, it reminded me that regular visits to my HCP and complications screening are important.
We ended our relationship that day. I don’t need an 11am complications screening reminder. Ever.
I found the healthy living (the diabetes healthy living) messages intrusive. Rarely at the moment I received the alert would I be thinking of diabetes. Instead, I’d be in the middle of something at work and suddenly I was torn away and reminded that a lot of my choices are not really healthy. I felt guilty. Guilty that I hadn’t eaten breakfast (except for a milky coffee), hadn’t eaten any carbs of value in the last 48 hours, hadn’t been checking post-prandial BGLs and that I was a couple of months late with my comps screening.
But more than that, it didn’t make me want to make any changes. It just added to the alerts and alarms and white noise. It was distracting and not actually achieving anything. So I stopped it. Most of the time, diabetes intrusions can’t be stopped or turned off. But this one can. The best thing to have come out of this little exercise was how I felt when I unsubscribed. I felt in control.
I like THIS white noise.
Do you ever play that game where you change one word in a song or movie title for another? One that I find fun is changing the word ‘love’ for ‘lunch’ in old jazz standards: Love Lunch for Sale; What is This Things Called Love Lunch; I’ve Got My Love Lunch to Keep Me Warm. You get the idea. (Or for another idea, check out this Harry Potter-inspired fun!)
Today, when this ‘inspirational quote; came up in in my Facebook feed, I replaced the word ‘life’ with ‘diabetes.
I think perhaps it translates quite well. I am certain that diabetes hasn’t gotten easier for me. I’m sixteen years in – still a baby, when I think of the Kellion medallists I met recently – but even though I know a hell of a lot more about diabetes today than when I was first diagnosed, it’s not easier and it’s certainly not more forgiving. In fact, each year as I tick off another diaversary, I worry more and more about complications. Hypos have become less predictable. I still second guess myself; something that I hoped I would not do as I gained the wisdom I expected would come with diabetes longevity. I’m still waiting….
As for getting stronger and more resilient, I know that definitely is true. I’ve found that I can build up my resilience stores – it helps when things are going well and I feel that I’m top of everything.
And the strength I have found to deal with some terrible situations has surprised me. At moments where I have thought that I was beaten and broken, from somewhere I have found the strength survive. And often even thrive.
I am definitely a stronger person overall because of my diabetes. Whilst diabetes has been fairly gentle to me overall, it has certainly blindsided me at times. But despite that, I’ve coped.
I think living with diabetes means we just have to be resilient – it isn’t a choice. Giving up isn’t an option when it comes to this relentless condition.
It’s Friday! Here’s the wonderful John Pizzarelli singing ‘I like Jersey Best’.
I don’t consider myself a worrier. I never assume the worst, in fact, always assume things are NOT the worst. A cold is a cold – never pneumonia. I’ve had my thyroid operated on because of a benign lump, and when I’ve found subsequent lumps, have never thought it anything other than a pesky bit of rogue tissue. And I’ve always been right. ‘I’ve got this!’ I tell myself as I deal with pretty much any health stuff.
A headache is a headache – certainly not a migraine and definitely not a tumour.
But all of this is thrown out the window when it comes to how I behave about eye issues. I panic, I am paranoid and I expect to hear the worst.
I’m not sure why it is diabetes eye complications that cause me the most concern. I don’t seem to get as panicked when I have my annual kidney screening or have my cholesterol checked. It’s the eye thing that gets me each and every time.
Recently I had my post-cataract check-up. I was actually seeing the doctor because I noticed a slight change in vision and some pain in my left eye, but in addition to sorting that out, I would be having a full eye examination. My ophthalmologist would be making sure my new lenses had settled in okay and were doing whatever lenses are meant to do, and while I was there, he would be having a good look behind my eyes to check for any diabetic retinopathy. He would have a really clear view for the first time now that those pesky cataracts had been removed.
With this in mind, I was not thinking that everything would be clear and look fine. I was expecting to hear that the changes I’d noticed signalled some retinopathy and we would have a discussion about treatment. I did not think that all would be fine. I worried. I didn’t feel that I had this at all.
Following a routine distance vision and pressure check (all fantastic), my pupils were dilated and I was sent back to the waiting room. I concentrated on my vision getting blurry and felt my breathing quicken as I waited to be called back in.
My lovely ophthalmologist, now more than used to my histrionics, joked about how relaxed I was becoming seeing him. I twisted my mouth into what I hoped was a smile and told him that even after having cataract surgery, eye things still made me nervous as all get out!
He started by taking a look at the new lenses and was pleased to see that they were great. No problems post-cataract. There was a small scratch on my eye which explained the pain, but nothing else at all. And then he checked my retinas.
‘It just doesn’t make sense’, he said, snapping the light back on once he’d had a really good look at both eyes – checking and checking and checking again. ‘Those cataracts were pretty nasty and you got them very young. But there is absolutely no diabetic retinopathy in either of your eyes. Nothing at all! It looks really, really good, Renza.’
I could feel my shoulders relaxing and realised I’d been holding my breath. He was watching me carefully. ‘I don’t need to see you for a year, Renza – unless of course you notice a change. Your eyes are great. But I think we need to talk a bit about you worrying so much about your eyes. You do everything right here. You come and see me regularly. You made the decision to have your cataracts removed at the right time. You may get some diabetic retinopathy, but we will pick that up early and treat it. Your worry is understandable, but not necessary. Are you speaking with someone about it?’
I started to tell him that I’m really not a worrier. I don’t get anxious about things. But my eyes….my eyes. I don’t know if it’s all tied up in the anxiety and fear I have of physically having my eyes checked or if it is something else. But I stopped myself, because he is right. I am a worrier about this.
I thanked him for being so kind – and for being the bearer of good news. I may have hugged him a little. And I left. I paid the bill and made an appointment for twelve months’ time. I clamped on my sunglasses and prepared myself for dealing with the bright Winter sunshine. And I breathed. No need to worry today. I’ve got this.
‘You do eat, don’t you mum?’ My nine year old had wrapped her arms around my waist this morning as I was fastening a clip in her hair. She squeezed tight.
I kissed her head and stepped back. She looked so concerned.
A couple of years ago, a friend of the kidlet’s had developed some disordered eating behaviours. Using age-appropriate explanations, we discussed what this meant for her friend, what we had to do when we were spending time with this friend and what was being done to help her friend ‘feel better.’ More broadly, I briefly explained that some people do have ongoing issues with how they think their body looks and tried to describe how this wasn’t necessarily about the food that they were eating, but had to do with their feelings and how they felt they looked. Trying to give the ‘eating disorders 101’ talk to a then-six-year-old possibly made my head explode with sadness.
This was a difficult conversation to have because I’ve always been concerned about how we discuss food and weight and body image. When I think about it, this was probably the first time that we’d ever had a discussion about food as being anything other than ‘Gee – that’s yum!’
The relationship between food and diabetes is mentioned occasionally – but again, usually because I’m low and need something to help get my BGL up.
As I’ve mentioned before, I’ve lost a bit of weight in recent times. This was not part of a weight-loss strategy. I wasn’t eating differently, or cooking different foods. I am a hobby baker and throughout this time, our bench top housed Tupperware containers full of cakes and cookies and slices. And I talk a lot about Nutella. Food is something that is celebrated in our house. Nothing is forbidden. We just eat a lot of fresh, healthy stuff with a decent splattering of (mostly home-cooked) treats.
We eat out regularly, but never at fast food restaurants. Our local café (a two minute walk away) is an extension of our kitchen; their coffee machine is our coffee machine!
But it seems that even though I’ve not discussed my weight loss with our daughter, she has noticed. Perhaps she hasn’t noticed that I look different, but, when she hugs me, I certainly feel different; when she wraps her arms around my waist, she knows that they go a lot further than they used to.
Should I be concerned at her concern? Does she equate weight loss with there being a problem? Is she worried that I have developed some of the eating problems her little friend had?
I dealt with this morning’s question by reminding her that we eat together at least one meal each day – more on weekends and holidays. I reminded her of the other night when we were toasting marshmallows by the fire as we watched a movie together. I pointed to a recent trip to the country where we ate pizza and shared doughnuts. We talked about the pasta dish I’d made the night before and how we sat at the dinner table eating it.
‘Okay,’ she said. ‘You just feel skinny when I hug you, that’s all.’ And then she changed the subject. I cringed at the word ‘skinny’ just as I would have if she’d used the word ‘fat’.
But perhaps I was making too much of it. Perhaps she was just stating a fact. Maybe using the word skinny was just an adjective that seemed appropriate, just as fat would have been in a different case. Maybe there was no judgement call attached. Maybe. Or maybe not.
Diabetogenic 