Diabetogenic

When the ‘customer’ is an inconvenience

February 4, 2016 in Communication, Healthcare team, Real life | 4 comments

This morning, I drove my car straight into the tyre shop across the road from work. By the time I had turned off the ignition and stepped out of the car, a kind looking mechanic was standing next to me.

‘Morning, what can we do for you today?’

‘I haven’t made a booking, but I was wondering if you could help out. I need a tyre replaced and, while it’s in here a wheel alignment. Any chance you could do it today?’

‘Not a problem,’ he said. He walked around the car slowly. ‘You know, both those front tyres could do with replacing. Would you be happy for us to do that?’

We had a chat about options – he showed me photos of all the different tyres that would work on the car (all looked the same to me) and discussed the pros and cons of each. After I decided, I walked out of the shop, with the mechanic promising to call if there were any problems.

Service with a smile!

As a customer/client/stakeholder/friend/’insert latest buzz word here’ I like to feel that I am somewhat valued. I like to feel that I am not inconveniencing the person offering the service and I like to feel like my custom is appreciated.

Which was how I felt this morning as I walked out of the tyre shop.

And it’s exactly the opposite of how healthcare frequently makes us feel. It’s a system that is set up to be customer-unfriendly. And it’s what we – the users of the services – have come to expect. And sometimes, to accept.

From trying to get an appointment, to actually walking in the door, to collecting test results, the process can be difficult, convoluted and confusing, with roadblocks at every turn. Here are just a few things that you may come across as a user of healthcare.

You need to see a new specialist, so you call to make an appointment. Most likely, the first thing you are told is that there will be a wait before the specialist can get you in. Possibly a long wait. A very long wait. Sometimes, you are told that new patients are not even welcome at this point in time. Sometimes you are told that you cannot actually make an appointment until your referring doctor has faxed (yes, seriously, FAXED!!!) across a referral.

If you are lucky enough to actually get an appointment, a barrage of Things You Must Do are read out to you: Referral letter (if you have been allowed to make the appointment without one); get there early to fill in the forms; bring test results; bring x-rays etc. etc.

You may be warned that if you do not show up or call within 24 hours (once I was told within a week!), you will still be charged for the service.

If you have managed to get through all of that and still decide to go, then once you arrive, you are faced with a frequently unfriendly and unwelcoming receptionist who is there to basically act as a buffer between you and the doctor.

(Side note: I am going to say that I know that this is a thankless job at times. Many people think they are the most important person in the world and these same people think that the doctor should be bending over backwards to accommodate them. However, in my experience, most people do not think that way. I know I certainly don’t. Also, I have had many experiences of wonderful support staff greeting me when I have an appointment. The staff at my endo’s office are friendly, polite and delightful. At my GP, it is touch and go – some are lovely, one in particular makes me start to sweat in fear!)

At first-time visits, you are given a clipboard with a wad over a paperwork and told to fill it all in. (This is where I weep a little and just wish that a centralised electronic medical system that worked was available and easily accessible so that I could simply write down my details and pass that over and all my information could be magically brought up on a magic computer.)

Eventually, after having filled out the forms and provided information about every aspect of my life, the file gets returned to the reception desk and is often greeted with the words: ‘The doctor is running late. About 30 minutes.’ At this point, I sigh and possibly ask (as politely as I can) why I wasn’t told this when I called before going in to make sure that the doctor was running on time – a call that I made only 30 minutes earlier. Steely silence. No answer.

(From this week’s New Yorker’)

So, let’s just recap. It has taken months to get into see this doctor and I wasn’t even granted an appointment until I had jumped through so many hoops that I now also needed to see a physiotherapist because I had put my back out; when I eventually get there, I spend ages filling in information that I know is hardly going to be relevant. And now I am told that after having arrived early so that I could fill in the forms that the doctor is running about 30 minutes late and that I just have to deal with it.

(I’m not going to write about the actual doctor experience, because we know it can be good, it can be bad, it can be disastrous ‘This isn’t going to work, but thanks for your time. I’ll just go pay my bill…..’ which is something that happened when I was interviewing endos a few years back.)

You leave with another ream of paper – prescriptions, test requests, perhaps another referral letter and are told to call back in a week’s time to get the results.

But a week later when you call, a new dance starts. ‘No, you can’t speak with the doctor,’ you are told, when you say that you are calling – as requested – to get results. ‘The doctor speaks to people between 1 and 1.15 Monday and Thursday. You’ll need to call back then.’

You ask if the doctor could either call you back or even email me the results, which gets a response of horror, ‘No we do not correspond via email. The internet is not safe.’ (I at this point, do not say what is going through my head – ‘I do all my banking on the internet and I am not concerned about privacy there. And I am certainly not likely to care who knows what my hand X-ray shows.’ Because there is no point.

After about four attempts, you eventually get to speak with the doctor who will probably (hopefully) tell you that all is clear and to make another appointment for 12 months’ time.

It seems that every part of the system is designed to keep apart the two people who actually need to be in the same room, looking at each other and truly engaging.

And this is deemed okay?

It’s not. How many of us would return to a shop if we were treated this way. Even if the people we are speaking with are lovely – which is usually the case – the system is ridiculous. It’s broken, seemingly beyond repair. And I can’t think of any other service where the customer is considered an annoyance. Can you think of any other service where the customer is treated this way?

I just had a call from my friendly tyre mechanic. My car is going to be ready an hour later than he thought and he wanted to let me know. I thanked him and commented on how much I appreciated the phone call. I was probably a bit gushy as I am when impressed with the service I’m receiving. ‘Not a problem at all,’ he said. ‘We like happy customers.’

And I like to be a happy customer!

REBLOG – Sharing the Love this Valentine’s Day

February 2, 2016 in Advocacy, Awareness | Leave a comment

I wrote about Spare a Rose, Save a Child last year. And the year before that.

I wrote about the easy and logical tie-in with Valentine’s Day.

I wrote about how I would be making a donation and encouraging my Valentine to do the same.

I wrote about how easy it is to support the campaign.

I wrote about how fabulously tangible the campaign is: 1 rose = AUD$6 = 1 month of insulin for a child.

I wrote about how easy it is to get involved.

I wrote about how no child should die because they cannot access life-saving medication.

I wrote all about it.

So I won’t do that again.

Instead – have a read! (And make a donation!)

_________________________________

Yesterday, as I sped around the supermarket, the onslaught of the next commercial opportunity hit me fair and square in the face. No, I’m not talking about Easter (I could act all outraged that there are Hot Cross Buns in Woolies, but we bought some and have been eating them, so that would be kind of hypocritical). I am talking about the festival of love – Valentine’s Day.

Valentine’s Day can go one of three ways for people. It can be a day of overt love declarations involving flowers, cards, poems, sky writing, gorilla-grams, stripper-grams (don’t judge), candle light, champagne, walks on the beach; it can be a day of sadness and misery and feeling left out; or it can be a day of complete oblivion where one is confused why there are so many people carrying bunches of balloons with ‘I wuv you, Shnookums’ written on them in glitter.

This year, I say screw that. This year, I say how about you do something that is meaningful that will not only help others, but also make you feel great. This year, it doesn’t matter if you have a Valentine or not. Everyone can play.

I am, of course, speaking of the Spare a Rose Save a Child campaign.

Now, if you have diabetes and/or any links to the diabetes word, you have probably seen and heard about this campaign before. I’ve even written about it here. The general gist is that instead of sending a dozen roses to your Valentine, send eleven instead and with the money that would have bought the extra one (about $6 in Aussie money) make a donation to Life for a Child. Those six bucks will provide insulin to a kid in a developing country for a whole month. Or, give your Valentine ten roses and donate $12.

All good, right?

But I have a little challenge for you.

This is a brilliant campaign because it is so simple. It’s easy to explain and it’s really easy to get involved. So my challenge is this. Let’s get this moving way out of the diabetes world. Let’s get this into the hands and hearts of our friends and family who may not really consider this as an idea for Valentine’s Day. Let’s tell our workplace HR teams and see if they can encourage it as a work-place wide giving program (there’s even a tool kit to get you started!). Pop in to visit your neighbours and ask them to get involved. Next time you are going for a walk in your local shopping centre, drop in to some of the small businesses and ask them to get involved. Ask your kids if they would like to donate some of their pocket money.

Roses and diamonds and jewellery and books and CDs and vouchers for massages and guitars and DVDs of favourite movies are all lovely and fun for Valentine’s Day and I am not suggesting you complete give up on the idea of sharing gifts. But how about sharing the love a little this year? I know that I certainly will be making a donation and have already strongly suggested to my Valentine that he do the same. (And check out this and this cute card to attach to your gift, telling your Valentine how you’ve shared the love this year.)

So, how about making sure a child has life-saving insulin available to them by donating just a few dollars in your loved one’s – or your – name. Because THAT is a gift of love and I honestly can’t think of anything I would like more this Valentine’s Day.

All the information you need – including the link to the incredibly simple donation page – about the Spare a Rose, Save a Child initiative can be found here.

Sunday night

February 1, 2016 in Diabetes, Hypo, Lows, Real life | 7 comments

It’s 7.25pm on Sunday evening. I am battle-scarred from a hypo that hit me like a ten tonne truck. It was 6 hours ago now, but I am still foggy and so fatigued.

We were out – at our local shops picking up a few things. All of a sudden, I felt like I was going to fall over. One of my legs gave way, I was dizzy and I couldn’t find the words I needed. Focusing hard, I looked at the kid and said ‘We need to get out of here.’ I passed her my phone and she called Aaron who was in another shop nearby, asking him to come and find us.

Where had this come from? My CGM started wailing at the moment that Aaron joined us. But when I looked over the previous few hours, I could see that I had been sitting around 4mmol/l for the whole time. Until I dipped – suddenly – and it seemed the CGM trace took a little while to catch up. The wailing continued as I gulped back orange juice and groped for my pump to silence the alarm.

It was almost fifteen minutes later before I was ready to move. As I sat there, I very consciously started to notice the fuzziness in my head, the overwhelming and all-encompassing exhaustion hit. My eyelids began to droop and my eyes were having trouble focusing, my hair was wet at my neck making me shiver, and my hands were shaking a little. The noises around me sounded like they were coming through a tunnel – everything echoed, but sounded muted and fluffy.

Eventually, we got up and got home and I went straight to bed. I took off my shoes, lay down, and was shivering as I fell asleep, almost instantly. And I slept – a deep, heavy, dreamless sleep. Two hours later I woke up and was ready to move again – slowly and gingerly at first.

And now. Six hours later. I am sitting on the couch, and in between writing I stare out the front window onto our street. It’s a gorgeous night – warm, but not too warm, with a gorgeous cool breeze blowing through our open front door. I hear the leaves flutter in the trees in the garden, people walk by, chatting to each other, and the folk across the road are having a band rehearsal. It’s peaceful; it’s Sunday night and I’m starting to think of the week ahead.

And in my thoughts about school lunches, and work schedules, and everything else, I have another thought. I don’t have it often, but when I do, it’s always the same.

I feel a pull at the bottom of my stomach.

My breath catches in my throat.

Tears spring to my eyes.

I wish I didn’t have diabetes.

Shush and listen

January 29, 2016 in Awareness, Communication | Leave a comment

A couple of weeks ago, I sat in a packed Melbourne Town Hall. And there, on the stage, was Nigella Lawson. It is possible that I have never been so excited in all my life – the original and greatest domestic goddess in all the lands was sitting about five metres from me, sharing the same air! She is every bit as poised and elegant in person as she is on screen and her beauty is startling. I certainly squealed when she walked onto the stage!

So, was the hour or so that Nigella was sitting on the stage worth the time and money? Well yes. And no.

I have been to a number of these ‘in conversation’ events before and they can be hit and miss. Largely their success is dependent on the person asking the questions, or rather, guiding the conversation. And that was the frustration with Nigella’s session. Food writer and restaurant critic, Jill Dupleix, was a little clumsy in her attempts to steer the conversation. It probably didn’t help that she started with a dud question that I am sure was meant to break the ice, but had the complete opposite reaction. Nigella looked positively uncomfortable. Perhaps asking someone who has recently gone through a very public and awful relationship breakup about her sex life wasn’t very well considered.

But even after that, I felt that Dupleix was not a great choice of interviewer. She interrupted and gave her opinion about the audience questions. She was clearly afraid of silences!

Everyone in the room had come to hear from Nigella. We wanted to hear the secrets to her success and about her every day life. For me, I wanted to hear about how she had turned something she was so passionate about into a successful career. I had the kidlet with me, and she was enthralled as Nigella shared stories of how she got her start as a journalist and how she built an empire as a food writer.

When given the chance, the Domestic Goddess, using language in a way that was both beautiful and mesmerising, shared snippets into her life that were amusing and telling. (She keeps condiments such as mustard and soy sauce in little jars on her bedside table for when she is eating in bed so she doesn’t need to climb down the stairs, back to the kitchen, for them. Brilliant!)

Where the discussion worked was when Jill shut up and Nigella could speak, uninterrupted. Unfortunately, too often she was cut off, or the silences – probably where Nigella was trying to formulate her next thought – were cut short and we never got to hear the titbit of information that she was finding the right words to disclose.

I left feeling elated that I had been in the same room as Nigella, but disappointed that I had not heard more. Several people I spoke with afterwards said the same thing.

This is the power of effective communication. Whether it is in a room like that, or as a one on one consultation, the most important person in the room is the one who needs to be heard most, be given the most time to speak, and have the opportunity to set the agenda and direct the conversation. And this is the case in a formal interview, health appointment or even a conversation with a loved one at the kitchen table.

I have really kept this in mind recently. Yesterday was the first day of school and over the last week or so I have frequently checked in with the kidlet about how she is feeling as the holidays come to an end. As with any eleven year old, she moved between being excited and nervous. Some of the things taking up her attention were hilarious (how will I wear my hair on the first day, mum?) but as they were her concerns, they are legitimate. It wasn’t my place to tell her that no one would care if she was wearing a high or low ponytail, and she should be concentrating on important things like revising her times table.

No, my job is to shush and listen and ask gentle questions to get more out of her and then try to make her feel as calm and happy as I can.

It’s the same with the way that diabetes consultations are very frequently criticised for not allowing the PWD the opportunity to use the forum for what they need, instead, going through a tick-box exercise of what the HCP needs and wants. Surely the HCP should shush and listen.

I think that often we like to think that we are the most important person in the room; the our opinions count for more; that our voice should be the loudest; that anything we don’t like should be defended. But most of the time, unless we really are the most important person in the room (i.e. in the case of a HCP consultation, or if we are Nigella in a Town Hall full of people), we need to just shush and listen.

Because if we did that, just imagine how much more we would hear and learn.

Nigella Lawson in Melbourne last week.

What it feels like

January 28, 2016 in Awareness | 1 comment

I am always interested in seeing the sorts of campaigns other health organisations come up with – especially when trying to adequately express to people what it is like to actually live with whatever condition they represent.

In the diabetes world, we often focus on the debilitating complications when trying to communicate with the broader community, but that is really only one aspect of diabetes. There is so much more that we could talk about – the relentlessness of the condition, the fear we may feel, how our mental health and diabetes are intrinsically linked, the relationship we have with food and the increased rate of eating disorders, how diabetes impacts those around us. So, so much.

But what doesn’t get done all that well, is trying to actually explain the physiological side of living with diabetes. Our invisible illness makes it difficult to point to a bruised arm or a bandaged head to ‘show where we hurt’.

Diabetes is not alone here. Multiple sclerosis is another condition that is complex and has little community understanding. I know I for one have no idea about what living with this particular autoimmune condition would be like. So I was really interested to see how the campaign from MS Australia, which uses an interesting analogy to explain what life with MS, is all about. Have a look at This Bike Has MS:

Now I don’t live with MS, so I can’t say if this is in any way an accurate representation of the physical issues which impact on day-to-day life. Does it provide a true portrayal of some of the problems faced by people living with MS?

I know that I was quite scathing a few years ago when describing what I considered to be a well-meaning, but pretty useless simulation of a hypo. Perhaps people living with MS are echoing my criticism of the hypo simulator, claiming that this ad really doesn’t explain much. There may be ways to try to demonstrate – or even allow someone to experience – some of the physical aspects of a health condition. But they only go a little way to explaining the real life, day-to-day, emotional and psychological pieces that make up chronic health conditions.

But however flawed these attempts may be, I still think that they are important, because they go some way to explaining – or at least illustrating – the condition in a physical way. Getting on that bike will give someone a sense of the physical side of MS, just like the hypo simulator demonstrated some of the physical symptoms that accompany a low.

And any efforts that results in less stigma, more compassion and better understanding of why we need to continually lobby and advocate for more – for better – is a good thing.

September 2001

January 27, 2016 in Advocacy, Awareness, Diabetes, Real life | 2 comments

Almost fourteen and a half years ago, I took up a very part time job at Diabetes Victoria.

The diabetes world was a little different back then and today, as I packed up my office and was farewelled by a group of amazing women I have been honoured to call my team, I reflected back over the years.

I had been using a pump for about five months when I started working there. It was the first time that many people in the organisation had ever seen one and there were a lot of questions.
The pump situation in Australia was a little different to today. If you wanted a pump, you had a choice of a Medtronic 507C or a Disetronic DTron.
Smart pumps were not a thing yet!
There was no DAFNE yet either.
The few of us who were pumping had to self-fund the consumables to the tune of about $300 per month.
It was in May 2004, after a lot of lobbying, that the Government announced that pump consumables would be listed on the NDSS, reducing their costs to about $30 per month. This was the first taste I ever had of political lobbying and advocacy and I loved it!
Within my first three weeks of being in the job, about half a dozen different women called saying they wanted information about diabetes and pregnancy. We didn’t have anything, so together with some like-minded groups, we set about developing a resource that provided all the information women wanted in a format they liked. That was my first taste of realising how important it was to listen to the ‘consumer’ and it became the overarching philosophy of my work.
No one was talking prevention of type 2 diabetes. And when that started, it started a discussion about a huge issue.
No one was talking about diabetes and mental health – except those of us living with the condition. We knew that it was real; we knew that burnout was debilitating; we knew that our mental health directly correlated with our ability to manage our diabetes. Seeing the Australian Centre for Behavioural Research in Diabetes become a real thing has been a game changer for people with diabetes as it has opened the discussion in ways we could only have imagined!
People with diabetes at diabetes conferences? Not really, but we have made some strides there! (Psssst….but not enough!)
Social media? Not a thing back in 2001. Now, online support, which was fledgling to say the least back in 2001, is everywhere and accessible by many, many people.

What a change a (almost) decade and a half makes! The diabetes landscape is very different. I’m glad I get to still be a player in this space in my new national job.

But today, it’s about saying goodbye.

And with that, I want to acknowledge a group of women. These women:

To (in alphabetical order), Alice, Angela, Anika, Carolyn, Elise, Elizabeth, Jane, Kelly, Kim and Kristina: thank you for making my last day so lovely. But more so, thank you for being the people who ‘do’. Each and every day, you come into work and do things alongside – in partnership – with people affected by diabetes to improve their lives in some way. Your commitment to people living with diabetes is second to none, there is no other team like this one in Australia and the work that you do each and every day is, in fact, life changing. We hear that frequently.

I am so fortunate that I got to lead you in my clumsy and sometimes ranty way, and I thank you all for indulging me as you have. I wish you all the best and will be watching – very closely – all your future successes.

What Renza did next

January 22, 2016 in Real life | 8 comments

With a mixture of sadness and excitement in equal measure, next week I am leaving Diabetes Victoria after over fourteen years. It was a difficult decision to make – I resigned from a job that I genuinely love and from working with a team of women I greatly admire. But fourteen years is a long time to be in one place and the time felt right.

I resigned just before going on three weeks of leave, and even though I didn’t really have any plans beyond finishing up at the end of January, I felt a great sense of calm.

As one of those people who likes to plan everything, have to-do lists and know what is around the corner, this was incredibly out of character for me. What was I thinking leaving one job without having another lined up? And what was I doing leaving something that I love so very, very much? This was nothing short of madness. Where was the plan? Where was the pros and cons list? Where was the back up? (Actually, now I am hyperventilating….)

I’ve always thought this control freak tendency is a response to living with a health condition that doesn’t actually allow you to plan all that much. It also laughs in the face of to-do lists, probably because my to-do list would look like this:

diabetes to do list

Living with diabetes has meant that I really like to have a safety net in place when I can. So, jumping from one job without another to go to was a huge, huge decision and quite unusual. I did know that I wanted to stay working in the diabetes space, but that was pretty much it.

As it turns out, the planets aligned and I am not going all that far. I will be taking up a national role with Diabetes Australia which is terribly exciting. It’s a part time job, meaning that I will have more time to dedicate to writing – for myself and others – as well as doing some consulting work.

I feel that it’s the right time in my life to broaden what I do, and I feel very fortunate that I will be working in job with a focus on diabetes advocacy and activism. I love change – one of the reasons I stayed so long at Diabetes Victoria was that my role continually evolved and transformed – so I am really excited to see what happens next. Come along with me for the ride!

Healthy?

January 21, 2016 in Exercise, Health, Real life | 5 comments

For work, I signed up to a new healthcare app that would magically and algorithmically measure my health. Health apps frequently annoy the bejeezus out of me. You can tell the ones that have never met a real person and that the boffin who is developing the app lives a lonely life in a cave without regular contact with anything with heartbeat. (Shout out five million to my fave app, MySugr, because it is developed BY people with diabetes FOR people with diabetes so it, you know, works.)

Anyway, to sign up for this one, I had to fill in a few details about my health and wellbeing and then I got a final health score. It was pretty thorough. I added things like my most recent blood pressure, cholesterol reading, height, weight, food (which, despite ridiculously frequent mentions of cupcakes and doughnuts on this blog is mostly fresh, home-cooked and healthy), exercise (ha!) and health conditions. I ticked the ‘no’ box for every single one of those, except, of course, type 1 diabetes.

My overall score came back at 65%. I then was given a list of measures that I could take to increase my health, most of which I already do (other than exercising to which I am a conscientious objector).

I decided to test this little app and re-entered all my data with one little change. This time, I ticked the ‘no’ box for every single health condition.

The magic little algorithm spat out a new result. Suddenly, I was now 90% healthy. The suggestions to improve this number focused solely on doing more some exercise.

So, here’s the question. Am I significantly less healthy because I have type 1 diabetes?

My answer to that question is no. When I consider the level of attention I give to my health today as compared with before being diagnosed with diabetes, I would say that I am a lot more in tune and interested in my health now. I couldn’t tell you what my blood pressure or cholesterol was before I was diagnosed. Can now! I have regular check-ups and screening for things that probably would have slipped under the radar before.

And when I think about friends the same age as me – an age where we start to be reminded of the sorts of things about which we might want to speak with our doctor – I know that I definitely more on the ball than most of them.

Perhaps I have had to reshape what being healthy really means. Maybe pre-diagnosis I would have considered needing to medicate myself each and every day while monitoring my health closely would equal being unhealthy. But that’s not how I think. I think that I am healthy – and part of that is because I do those things. I am not ‘healthy even though I have diabetes.’ I am just … ‘healthy’.

Am I in denial? Have I rewritten what healthy means to accommodate my health condition?

Or is it true. I am healthy. And sure, I could be healthier, but that has to do with laziness and I don’t mean the laziness of my beta cells.

That time I exercised.

Bygone

January 20, 2016 in Awareness, Real life, technology | Leave a comment

Last night, Aaron and I joined a group of friends at the beautiful Sun Theatre in Yarraville for a ‘cinematic experience’. Harking back to the ‘good ol’ days’, we saw a film shot in 70mm Ultra Panavision with an overture at the beginning, an intermission of exactly 13 minutes in the middle and a souvenir program to take home at the end. (We’ll ignore the fact that rather than watching Ben Hur, introduced by Bill ‘Golden Age of Hollywood’ Collins, we were watching Quentin Tarantino’s eighth movie, ‘Hateful Eight’ (H8ful Eight??? Hateful 8???) with all the gore and violence – yet surprisingly still so much grace and beauty – one has come to expect in a Tarantino film.)

Often, there is much chatter about the ‘good ol’ days’. I get it. It was a time where things seemed simpler: kids were kids, adults were adults and everyone knew where they belonged. Milk came in bottles with cream on top….And I walked ten miles to school and twenty miles home, all uphill.

We can look back nostalgically at different periods in history. And it’s funny how history repeats itself. I remember hearing my father telling me how lousy the 1980s music I loved was compared to the music he loved. And yet his favourite music – the Beatles, Frank Sinatra, Simon and Garfunkel – would have had the same said about them. I try to catch myself before I criticise the trash music daughter is listening to now, because I remember how annoying it was (and how distressed I was) when my dad criticised Morten Harket.

Last week, Aaron got into a Facebook discussion that started off being about music and somehow ended up not being about music. The person he was ‘speaking’ with was saying that everything was better in the ‘olden days’.

‘Everything?’ asked Aaron

‘Yes,’ she replied. ‘Everything!’ She then went on to explain what she included in her ‘everything’ – music, food, medicine…

He quickly jumped in and pointed out that thanks to advances in medicine, his wife is still around. The olden days were really not all that great for those living with a health condition such as type 1 diabetes.

Perhaps because I am a beneficiary of all that the ‘modern era’ has to offer, I have no nostalgia or desire to go back in time. Because for me, along with sentimental thoughts of kids playing in the streets until dusk – and playing meant being outside, not sitting in front of a console – and cooking meant making foods from scratch and a telephone call was something made from a phone with a chord, there would be the practicalities of boiling syringes and sharpening needles and an inability to accurately measure BGLs and a life without diabetes technology. Bygone era? No. Be gone!

I would take the modern era and all its so-called short comings in a heartbeat over the ancient era of medicine! Through our rose-coloured glasses we forget that there were days before vaccines and days when life expectancy was shorter. We forget that there were not tests or screening to identify different conditions, that mental health was rarely, if ever, discussed. We forget that only 94 years ago – not that long ago – there was no medication to treat someone with type 1 diabetes.

So with all this in mind, read what is coming next. Here is an update on a couple of the many artificial pancreas projects happening today.

I want a cure as much as the next person. But in the meantime, keep the DTech coming. Please.

Low, low, low. And then not.

January 19, 2016 in Hypo, Lows | Leave a comment

Hot sticky days equal revolting sticky hypos and leave me wondering if a move to the tropics would equal a partial diabetes cure.

I’ve mostly been sitting at 30 per cent basal for the last couple of days and not bolusing. At all. But even with that, I’ve been mainlining hypo foods to keep my BGL above 4. Low, low, low.

Until I’m not. Until I am sitting up in the 20s and struggling to manage the nausea and the hypo hangover and the thirst.

As my pump shows double up arrows, I snap into action. I up my basal rate again and bolus, slowly, carefully. And then rage bolus because, for fuck’s sake, at 20 I feel like there is tar in my veins and my head won’t think straight. And eventually, it turns and heads downwards further and further and further. And too far. Where it sticks; for hours and hours.

My CGM trace is a mess, and hard as I try, I can’t make sense of it. There are no patterns. Just long straight lines of low, with a stubborn refusal to respond to any of the juice or glucose I consumer. And then a blip where suddenly, after a couple of hours, it all is absorbed in one hit. And then crashes back down to low, low, low.

I’m not over treating. I only have 15 grams of carbs at a time. I wait 15 mins before checking again. And I force myself to not binge on anything because I know I need to give the glucose time to respond. I talk myself down from the ledge of consuming everything in sight and breathe deliberately, willing my heartbeat to slow down.

But stubbornly, the numbers don’t move up yet and the line stays the same and the alarms wail and I feel like I am going to pass out.

This mess of numbers and I am attached to devices that cost thousands and give me so much information. Makes me wonder how I would ever cope – and how much worse it would be – if I didn’t have the tech.

Fun fact – the beep on my Vibe to tell me that I am low (a noise I have heard A LOT over recent days) is the exact same beep as the pagers used by Foreman, Cameron and Chase on House.