Diabetogenic

Clickbait

August 20, 2014 in Awareness, Diabetes | 14 comments

If you’re on social media, you’ll be more than familiar with the ridiculous clickbait style articles that tell you about ‘things you should know’. These lists are often targeted to specific age groups (20 things all women in their twenties should know), gender (5 things men should do on a date) or include things to make you feel like you’re falling behind (23 things your daughter should know by the times she’s 13 years – subtext: and if she doesn’t, you’re a lousy parent).

The aim of these articles is to make the reader feel inadequate and feel that they are failing at things because they are 34 years old and haven’t worked out the 10 things every woman should know about orgasms.

I steer clear of any of these lists and simply don’t give in to the desire to click. So, here’s my list of 16 things every person with diabetes should know:

Diabetes sucks.
Diabetes can also be interesting and eye opening.
Finding a healthcare professional who understands you and what you need will make navigating the system easier. And it’s perfectly okay if you want someone to ‘tell you what to do’ rather than someone who is more consultative. Horses for courses.
Cinnamon doesn’t cure diabetes and anyone who says it does is a big lying liar. And possibly a bit simple.
There is no unsuitable response to the question ‘should you be eating that’. Gentle violence is acceptable, as are tongue lashings, death stares and bursting into tears.
Further to number 5 – yes, you can eat that.
Cupcakes with sprinkles make as suitable a lunch for a person with diabetes as a person without diabetes.
It’s perfectly okay to squeal when you see another person pulling out an insulin pump, giving themselves a shot of insulin, or checking their BGL. Even if you don’t know them.
You do not need to explain your diabetes to anyone. That includes how you choose to manage it, how you feel about it, what you say about it. Your diabetes; your rules.
I’ll just say that again: Your diabetes; your rules.
There is no room for judgement. From anyone about anyone. (Except for people who wear leggings as pants. I’m all for judging them. And the Kardashians.)
Unicorns are real – I rode mine to work this morning.
Feeling sad or happy or down or ecstatic or miserable or pissed off about diabetes are all reasonable emotions – even within the same five minute period.
It’s okay to grieve. Life with diabetes is different.
There is no substitute for a friend with diabetes saying ‘I get it’.
Lists about diabetes are stupid

Random thoughts

August 19, 2014 in Diabetes | 8 comments

What if diabetes ruins my life?

Is it line-change day?

What if I have passed on my diabetes to my beautiful daughter?

When is my next endo appointment?

What if I have a heart attack or stroke?

Should I check my BGL?

What if I have a hypo in my sleep and don’t wake up?

Did I bolus for lunch?

What if I pass out while driving and run off the road?

Am I hypo?

Again?

What if I can’t do the things I love?

Why is my BGL 29.9mmol/l?

What if I develop diabetes complications?

Where’s my freaking meter?

What if I can’t look after myself anymore?

What if my kidneys fail?

What if…?

What if it’s all okay?

Great expectations

August 18, 2014 in Advocacy, Pumps, technology | Leave a comment

Knowing what to expect when it comes to diabetes is tricky. Our day-to-day lives with diabetes can be so varied and unpredictable. The same can be said when it comes to understanding the role our healthcare team play on an ongoing basis in our diabetes management. Given that there is not a one-size-fits-all approach to any area of diabetes, it can be very difficult to quantify just what we can and should expect.

So it’s great when something comes out that can actually provide some guidance as to what to anticipate when navigating the diabetes system.

The Australian National Adult Insulin Pump Working Group is made up of leading diabetes clinicians from all across Australia. In response to much confusion from people living with diabetes about the initial and ongoing support HCPs provide, the group decided to try to explain what appropriate levels of care may look like, and the role played by different HCPs.

Working with Diabetes Australia, a new information resource has been developed and launched which clearly outlines the care and contact people with diabetes ought to be getting from their HCP team.

Guidelines are always a tricky little monkey. I think that problems can arise when individuals refuse to waver at all from the guidelines, using them as strict ‘rules’ from which to develop management plans. Following guidelines and getting perfect results is just never going to happen – firstly because everyone is different. And secondly because diabetes is different all the time. What works today may not work tomorrow.

Flexibility is necessary, as is the understanding that individualising guidelines is required – and will hopefully then result in people getting what they need.

This resource provides a general idea of what people with diabetes can expect their healthcare team to do for and with them. It provides PWD the understanding that at different points along their pump ‘journey’ they can ask for and expect certain levels of assistance. The resource offers key ‘talking points’ which can assist with the development of a plan that works.

Currently, this information resource can be downloaded here. Have a read and take a copy of it to your next HCP appointment. It may provide an opportunity for new areas of discussions, and open pathways for new treatment choices.

DISCLAIMER

This resource was developed by The Australian National Adult Insulin Pump Working Group in collaboration with Diabetes Australia. I oversaw the contribution from Diabetes Australia. No funding arrangement is in place between the two organisations. Diabetes Australia has funded the printing of limited copies of this resource.

Invisible

August 15, 2014 in Awareness, Mental health, Wellbeing | Leave a comment

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.

Foggy

August 14, 2014 in Hypo, Lows | 2 comments

I remember my first hypo. It was the week I was diagnosed and I was on the phone (old school, landline, not cordless) chatting with a friend. I was filling her in with what had happened in the previous week, pretending I knew about diabetes and had it all sorted out.

I started to feel wonky. ‘I feel wonky,’ I told her. And then I squealed. ‘I’m having a hypo! This is a hypo!’ I was acting like I’d won the lottery. All week I’d been hearing about these mysterious hypo ‘episodes’ and what they would be like. And now I was having one. For real. Woot!

I hung up, went into the kitchen and announced ‘I am having a hypo’. I was living back home at this point in time, saving money to buy a home before getting married. My mum appeared from somewhere and as I stood there looking confused she sprang into action, producing jelly beans, toast and my BGL meter. I just kept thinking about the hypo, trying to put into words how I was feeling. ‘I feel a bit wobbly. Kind of like I am swimming. No. No. That’s not really right. I’m not swimming, maybe I’m floating. Yes. Floating. Like a bird. But birds don’t float, do they? No they fly. But I’m not flying…..’

This need to verbalise how I feel is not unusual, but it was sending mum into a slight panic as she handed me one jelly bean at a time to eat, trying to get me to focus on the glucose I needed to consume rather than delivering a speech on ‘what a low feels like’.

Today, I’ve had more than my share of hypos and I am no longer excited about them. In fact, that excitement lasted all of about a day and a half, after which I decided that they were a pain in the arse and that I wouldn’t be having any more of them. Ha – so sweet and innocent.

Lows have changed over my 16 years of diabetes. They went from being very easy to manage, to slightly less pleasant. I discovered that they also have different personalities – stubborn, teary, angry, irrational, denial, giggly and (in true seven dwarfs style), grumpy.

And then there is just plain foggy.

Early Sunday morning, I woke with the familiar low feeling and half asleep, reached over for the jar of jelly snakes on my bedside table and ate a few. As I was waiting for my BGLs to return to a reasonable level, and for the shaking to stop, I thought I’d check Facebook and Twitter. What else to do at that time of the morning? There would surely be someone on line to chat with.

Hypos can be a learning experience. Here is what I learnt. My pump does not have the Facebook app on it. Nor Twitter. It took me about five minutes to realise this. I looked at the menu, pressed the ‘ok’ button, searched, went back to the main menu, searched, all the while wondering where the little social media icons were so I could get online and find someone to tell about my hypo (some things never change, it seems).

It took a while – and probably an increase of a few mmol/l before I gave up. And went back to sleep.

It wasn’t until the morning when I woke up and noticed the lid off the lolly jar, a rogue jelly snake under my pillow and my pump still in my hand that I realised what I’d done.

The foggy hypos are often the ones that have me rolling my eyes and feeling like an idiot. But surely, surely, I’m not the only one who does silly things whilst low. Am I?

Choices

August 11, 2014 in Advocacy, Devices, Diabetes, technology | 4 comments

An article appeared in The Conversation last week about how the food industry gets us to buy and eat ‘nutritionally worthless’ foods and drinks. The thing I found most interesting about the piece was when the authors were talking about number of choices we have today when we take a walk down a supermarket aisle as compared with in the 1960s.

Today, supermarkets stock about 30,000 items. That’s a lot of breakfast cereal or yogurt from which to choose. By comparison, anyone doing a weekly shop in the 1960s had between 600 and 800 items on the shelves.

One of the things we complain about in Australia is that we have limited choice when it comes to diabetes devices and management options. This is true when we compare what is available here with the options of those in the USA and Europe. I have seen and held and played with all sorts of devices that I would love to be able to use, but they are not available on our fair shores – and not likely to be launched here either. ‘Market is too small’ is the reason given all the time.

I like choice and as a consumer advocate, I am the first to say that all the options for management of our diabetes should be before us before we make a decision as to what we will use. It frustrates me that I cannot choose to use a T-Slim pump or the OmniPod system.

I’m not sure exactly how many BGL meters are available in Australia, but I know it’s certainly not as many as at any Walmart I’ve popped into when travelling in the US. I’m always astounded at the ‘diabetes aisle’ in these stores.

Do we want that sort of choice when it comes to diabetes management tools? I’m not sure. I guess I like the idea of being able to choose the device best-suited to me. Do I think that we need a choice of two hundred thousand (slight exaggeration) BGL meters that do pretty much the same thing? Maybe not. I actually do think that we have a good selection here from which to choose and don’t really feel we’re missing out.

But it’s a different matter with pumps. There are not really that many pumps on the market to begin with. We have a choice of only four or five here. We don’t have the option of a tubeless pump, which is definitely a point of difference, nor a touch screen pump.

Some may say we shouldn’t complain – that a pump is an insulin delivery device and as long as it does that, everything else is just fancy-pants add-ons that mean nothing.

But surely that same argument can be applied to everything. We don’t need choice in the cars we drive – a car gets us from point A to B – leather seats and auto windscreen wipers are superfluous. Or a phone is a device to call people and chat – cameras, calculators and other applications are unnecessary and bonus extras.

We wouldn’t accept that. We SHOULDN’T accept that.

For me, when it is time to consider a new pump or CGM or BGL meter, the things that are the most important are safety and accuracy. But I do want to be able to line up all the options, look at their particular features and then make an informed decision. It’s my right to choose.

Desert island play list

August 8, 2014 in Diabetes, Travel | 1 comment

‘Which five albums would you want with you on a desert island?’

Putting aside issues of how to play the albums (I’ve not watched enough Gilligan’s Island to work out how to fashion a coconut, palm frond and pile of sand into a sustainable electricity source), it’s fun (and hard!) to think of the five albums I’d want to listen to repeatedly until rescued by Captain Jack Sparrow.

It’s just as fun to decide the five movies or five books I’d choose. (At least with the books, electricity is not needed.)

But what about the five diabetes things I’d want with me if I found myself stranded?

Disaster management when it comes to diabetes is something that I have stored in the to-do list at the back of my mind along with sorting out my Will and cleaning out the third drawer in the kitchen. I know I should do them, but really, really, really don’t want to. I’ll get around to it eventually.

I also think that given my personal situation – inner-city living, five minutes from the nearest tertiary hospital, know heaps of people I can call on if all my diabetes supplies get eaten by a wild animal etc. etc. it’s not likely that I am going to need to set my disaster plan in action any time soon. But never say never, right?

The only time I really think about it is when I am travelling and there is a (tiny) chance I could lose all diabetes supplies on me and be somewhat stranded without the support and emergency back-up I’m used to. When I travel, I over-pack for any situation. I take two spare pumps, enough diabetes supplies to last at least twice the time I’ll be away and make sure that everything is packed in a bag that is never out of my sight.

But…what if?

Well, for the sake of the diabetes desert island play list game, I think it would be the following:

Insulin – obviously. Lots of it. And some way to deliver it. While I am very attached to my pump (literally as well as figuratively), for the sake of this exercise, I’m going to say that I’ll use syringes to deliver said insulin. That way, no need to worry about batteries, pump failures, infusion sets, reservoirs etc. etc. I’d also want a BGL meter with a very long-life battery and lots of strips. Of course I’d need lancets. Ha-ha-ha-ha. Just kidding. I’m assuming it’s going to be hot on the desert island, and warm weather always results in lows, so I’ll need enough jelly beans to see me through until I find another source of glucose (hoping there will be a plantation of delicious berries somewhere). And finally, a Nutella tree. Just because.

Whilst I doubt (hope?) I’ll never be stranded on a desert island, this exercise reminds me once again that diabetes adds that extra layer to thinking about how to manage different circumstances. But I think my list is sorted. I am now going to spend some time watching Gilligan’s Island to really prepare myself.

Friday tunes. This would definitely be on my playlist. Because even if stuck on a desert island, I’d still want to listen to Tom Waits.

Brittle

August 7, 2014 in Awareness, Diabetes, Diagnosis, Healthcare team | 6 comments

‘You have brittle diabetes,’ the diabetes educator told me, regret in her voice.

Brittle. It’s such a sharp sounding word – all edges to cut yourself upon.

I first heard the term ‘brittle diabetes’ about three years after I was diagnosed. It was handed to me as a grave diagnosis within a diagnosis. Not just diabetes for me. I had brittle diabetes. I heard it, thought about it, said the words a few time together, jarring at the sound.

I was given this ‘diagnosis’ during a really rough period. My diabetes was all over the place thanks to a totally unrelated stomach issue. There were thoughts it may have been gastroparesis or, for a moment there, thanks to the significant weight loss I was experiencing, an eating disorder.

I became terrified to eat because every time I did, I was in extreme pain. At times I threw up everything I ate, other times I didn’t. My blood sugars were all over the place and the delightful insulin regimen which at the time involved Protophane was incredibly hopeless at doing anything other than send me plummeting low, or sky-rocketing high. It was a very tough few months.

I was seeing doctor after doctor after doctor. And all anyone could think about was my diabetes. My brittle diabetes. I was told: ‘This is what your diabetes is like. Sometimes there are no answers and we can do nothing to better manage things. This is it for you.’ There was an undertone of ‘get used to it, love’.

I wasn’t prepared to just accept it though. I wanted to have a baby and I knew that there was no way that I could even consider going down that path while my health was all over the place.

I finally sacked all the health professionals I was working with and sought out someone – something – else. I refused to believe that this was how I was going to be forever. I knew there were answers; I just didn’t know how to find them.

I found a new endo and when I walked in I told her that I had brittle diabetes. ‘I can’t be fixed, apparently. Give me everything you’ve got!’ I thought silently.

‘I don’t like that term,’ she told me gently. She wasn’t rude about it; she just explained that she thought we could work out why things weren’t going so well. And then, she went about finding answers. And we found them.

It took time and it took a lot of thinking outside of the square. It took putting diabetes to the side and not thinking that it was the only reason for all my health problems. Once I got sorted and my stomach was sorted and I spent some time talking things through, my diabetes was much easier to manage. I know that a big part of getting through was not only addressing the physical side of things. There were mental health issues I needed to address, mostly dealing with the grief I was experiencing about having to let go of my life before diabetes.

I too came to not like the term ‘brittle diabetes’. When I hear it now, I want to ask what else is going on. And I can’t help wonder where I would be now if I had just accepted that as my lot in diabetes.

Want more? Mike Hoskins wrote this interesting post on Diabetes Mine last year.

No glitter today

August 6, 2014 in Hypo, Lows, Real life, Wellbeing | 3 comments

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.

Jump on over to Diabetes Mine

August 5, 2014 in Guest post, HbA1c | 1 comment

Last month, my mate Mike Hoskins asked me to write something for Diabetes Mine. So I did.

It’s called A Word From Down Under, and I’m a little annoyed I didn’t add some commentary about throwing shrimps on the barbie, riding my ‘roo to work, or eating vegemite sangas. Missed opportunity.

Here it is!