Diabetogenic

Stressed. Out.

November 11, 2013 in Diabetes | 4 comments

On the day I was diagnosed with type 1, the endocrinologist I saw told me to eliminate stress from my life. He said this with the nonchalance of swatting away an annoying fly.

Easier said than done. We all go through times when stress plays a major role in our life. Sometimes it’s barely there and other times, our stress levels just seem to go up and up and up!

Right now, it feels like stress has infiltrated just about every part of my life. The next few weeks at work are so full that I am almost afraid to look at my diary. There are days where eating, breathing and sleeping will be optional (and highly unlikely) extras. The stress and busy-ness is already resulting in less and less attention being spent on the sorts of things I like to do to feel that I am managing my diabetes the way I like and is being reflected in roller-coaster like BGLs.

There’s a kiddo’s birthday and birthday party looming. (I’ll admit right here and now that I’ve taken the easy way out by jumping on the idea of a Hawaiian themed party simply so I can order in pizza.)

There’s a house auction on the horizon that has made me slightly manic in the way I’m insisting the house looks like a museum. Our poor daughter complained to her school principal that she was told off for sitting quietly on her bed reading. She was telling the truth. The ridiculous cleaning and polishing and scrubbing and sweeping and dusting sends me low, reminding me why we usually have a cleaner to do this BGL-lowering activity.

There’s packing and packing and packing to move into our new home. The results of this on my BGL vary widely – sky rocketing when I start to THINK about what needs to be done or bottoming out when I start to DO the things that need to be done.

There is cataract surgery on the horizon – just thinking about that sends my BGLs into the stratosphere with stress and anxiety!

And there’s Christmas. Which I am considering postponing until February.

How wonderful it would be if our lives were spent relaxed, balanced, calm and without any things that cause a variance in our stress levels. How wonderful it would be if the stress levels in our lives flat-lined and was reflected in smooth, balanced CGM lines without peaks and troughs.

All I can hope for is that once birthdays are over, houses are sold (fingers crossed) and new houses are moved into, the World Diabetes Congress is a success and once cataracts are removed that I’ll be able to settle down and enjoy some down time. Of course, that will be just in time for the beginning of the school year. When it will start all over again! Deep. Breath.

Hypo Boy versus the couch

October 31, 2013 in Diabetes, Guest post, Hypo, Lows, Real life | 2 comments

This is the story of Hypo Boy who, when not being a superhero, is the fabulous Spike Beecroft. I’ve known Spike for quite some time, and his incredibly amusing anecdotes about his life with diabetes never fail to have me in fits of laughter. This is a classic Hypo Boy tale that has been shared many times before. Recently, it appeared again on my Facebook page, and I asked Spike to guest blog and write about it here so you could all enjoy. Take it away, Hypo Boy…

People with diabetes are super human in lots of ways. We do the little bit extra that others just can’t do. Sure it’s not flying or shooting laser beams but it is a little extraordinary, and when you’re in hypo zone, that ‘super-ness’ can overwhelm your brain and give you powers you didn’t know you had; in fact it can give you powers you don’t actually have but you become convinced they’re there. My inner and very confused superhero is Hypo-Boy.

There are a number of things we all have to do in life that are stressful. Some we can manage to avoid with very little effort, like speaking in public or getting married. One stressful occasion that is difficult to avoid is moving house. Even if you opt to stay with your parents for your life at some point they will move to avoid you.

Stress does strange things to PWD and stressful situations confuse your finely-tuned spider sense of what’s going on with your finely-tuned and gym-trained body. If you’re hypo unaware and under massive stress and your gym routine consists of only riding a bike (you’ve seen those guys – they’re all legs and bits of string from their shoulders instead of arms) then moving house is a disaster waiting to happen.

The fateful day had arrived and I’d started the long and very strenuous task of packing up the house into boxes, loading said boxes into the truck and then transporting them to their next destination. Being an engineer and a logical person with type 1, I decided to start working from the back of the house and move forward. It was a clear and concise plan that involved the placement of items in the truck with regard given to weight, size, ease of load and unload. It was a perfect plan.

Then I started moving stuff.

It was going well – I was ahead of my predetermined plan, boxes where moving, I had a rhythm, I didn’t have time to test, I stumbled occasionally due to the weight/size of the stuff I was moving, the sweat on my brow was what they talked about in VB ads. I was THE MAN.

Hypo Boy knows one thing and he knows it well – Hypo boy knows when he’s low and everyone else are retards of the highest order. In retrospect the stumbling was due to being low and not being super co-ordinated; the sweat was from being low. But I was on schedule and I do like the odd VB.

The last item to be moved from the room was a big white couch. It’s a three person couch – one of those things that’s not super heavy, but is awkward to manoeuvre. It’s really a two-person job, but Hypo Boy can convince you (and himself) of many things including that he is THE MAN and that physics and ergonomics are fantasies. And also that the fuzzy vision and misjudging the size of items is just from the stinging of man-sweat.

Hypo Boy decided that the most efficient way to manoeuvre the couch out of the room was to tip it vertically and slide it on one end through the doorway. Lifting couch vertically and sliding couch on the fabric side across floorboards couldn’t be easier. Hypo Boy’s brain knows its stuff. This was going to work. Perfectly! Or until it’s halfway through the door and perfectly jammed in the door jamb.

Whilst a couch on its side does slide nicely across a polished timber floor, a vertically arranged couch with its back facing you, jammed in a doorframe provides almost nothing to grip on and use to push either forwards or to pull back on to reverse the operation.

After a few tries at various methods to move the couch, the sudden and very real feeling of weakness that comes from realising that you’re low hit. , And I realised I was not just low, but orange-box-NOW kind of low. Hypo boy had deserted me; taking with him his strength and mental clarity and leaving me stuck in a room with no hope of escape because I’d successfully stuck a couch in the only exit.

A real feeling of fear as I desperately tried to un-jam the couch and get to the hypo fix. But when you’re really low the ability to open a Mars Bar can escape you let alone trying to move a couch! And logically working out how to move the thing is way beyond what I capable off. It was looking grim. I could see the news headlines –MAN FOUND DEAD TRAPPED IN OWN ROOM. POLICE BAFFLED.

Fortunately for all of Hypo Boy’s fans an alternative plan hatched. Maybe – just maybe – Hypo Boy’s last vestiges of power would help. Exit the room via the window! And so I did. Then the next challenge: the locked back door. Again Hypo Boy’s brilliance came through: crawl through the dog door. Hypo boy looks good in lycra, but could afford to lose a few kilos. Doggie door needed some minor attention after its use by an animal several sizes larger than the designers ever considered.

Finally the kitchen! Hypo boy could save himself!! Why Hypo Boy had packed the jelly beans first was a question for later. There were slightly stale and not so crisp Ginger nut biscuits that would have to do! Well done Hypo Boy. Well done.

Later forensic investigation would reveal that:

a) the couch was pretty well jammed in

b) trying to grab the couch on the other corner would have made the couch twist nicely and popped it out of the door allowing the move to continue, Hypo Boy is obviously VERY, VERY focused on the right side of the world.

Thank you Spike for guest posting today. Please come back again and share more of your stories!

Damned if you do; damned if you don’t

October 30, 2013 in Advocacy, Devices, Diabetes, HbA1c | 1 comment

Within a two week period, I was dealing with the same issue on opposite ends of the world. Firstly, I ~~ranted~~ wrote about a child being told that his pump would be ‘taken away from him’ because his A1c was too high.

Then the following week at a conference far, far away, I was speaking with someone who can’t access a pump because her A1c is too low.

So apparently, if your A1c is high, you get your pump snatched away from you and if your A1c is in target, you’re not eligible for one.

Can you see what’s wrong with this picture? In both instances the decision as to whether or not a particular treatment option is being advised is based purely on a number. No consideration is given to things like quality of life, a desire for more flexibility, a desire to try something new or a love of gadgets. Or the simple ‘Because. I. Want One. Dammit’.

No – a number that provides nothing more than an average is being deemed the criteria for recommending (or removing) a therapy option.

Also, the decision for which management therapy will be utilised is being made not by the person living with diabetes, but their healthcare professional.

How do we win here?

I will never stop advocating the rights of people with diabetes to be THE person who gets to choose the way they manage their condition. But sometimes I feel the uphill battle gets harder and harder with more and more obstacles being put in the way and more and more hoops for us to jump through (metaphor much?).

There are days I really feel like throwing my hands in the air and admitting defeat. The more stories like this I hear, the more disheartened I become. When and how will the person with diabetes be put front and centre in the decision making process about their own diabetes? When will numbers stop being criteria to assess success or determine appropriate management? When will the threats stop and the judgement end and true collaboration begin?It’s time for us to say: Diabetes – my condition; my rules!

No!

October 29, 2013 in Diabetes, Hypo, Lows | 1 comment

When I’m eating out I very rarely draw attention to the fact I have diabetes. There have been occasions where I have quietly asked a waiter for some juice to come out quickly to treat a low blood sugar. Whenever I’ve done this, the juice has arrived quickly – no questions asked and that’s it! But usually, I don’t do anything that would indicate that my pancreas has been on holidays for the last 15 and a half years.

So it was with some amusement – and surprise – on the second night in Barcelona when a waitress told me she couldn’t help me out as my BGLs were crashing. To make it more amusing, we were at dinner with three other people with type 1 diabetes.

Here’s what happened. We sat down at our table, we chatted, we admired the view from the top of the old Bullring and were excited that there would be fireworks once the sun set as part of the La Mercè Festival, we were given menus. I checked my CGM and saw the number 3.1mmol/l (where did that come from?!) combined with an arrow pointing downwards. I reached into my bag only to remember I’d cleared out my hypo supplies earlier that day thanks to low blood sugar that wouldn’t budge. Time zone changes, the warm Spanish weather and a Sunday spent exploring the city and attending a symposium will do that to me!

So, I quietly signalled to a waitress and quietly and politely asked ‘Would it be possible for you to urgently get me an orange juice please?’ She looked at me before answering ‘No!. It will not be possible.’ The look on my face must have been utter confusion (could have been the plummeting BGLs), but the four other people sitting at our table knew why I used the word ‘urgently’ in my request. They all jumped in with calls of ‘She has diabetes’; ‘Her blood sugar is low’ and ‘She needs sugar’. At the same time they started throwing glucose tabs at me – just to add to the confusion and slapstick routine this was turning into.

Of course, all their calls came at once and were a jumble that barely made any sense, and the waitress just stood there waiting for me to say something else. Calmly, I asked her if it would be possible because I had low blood sugar and needed some sugar. I was conscious of the language problems (mine – not hers. She spoke perfect English. I speak three words of Spanish and one of those is churros) and didn’t really feel like doing a diabetes education session.

Within a couple of minutes, she returned with a tall glass of freshly squeezed orange juice and gently put it down in front of me.

When I thought about it later, I don’t think she was being rude or difficult. I think the fact that the juice was freshly squeezed meant she couldn’t get it to me urgently – that it would take a few minutes to prepare. Or perhaps she misunderstood what I was asking. But her so very matter-of-fact response of ‘No!’ surprised us all.

I could have become all indignant about how EVERYONE IN THE WHOLE WORLD should understand the needs of people with diabetes, but instead, some quiet and calm explaining did the trick. Juice arrived, BGLs headed in the right direction, paella served and fireworks launched. It was a great night.

Euro Bloggers Summit – the power of connecting

October 28, 2013 in Advocacy, Awareness, Conferences, Diabetes, DOC | 2 comments

I am very fortunate that my job allows me to do a bit of interstate and international travel. Working for a not-for-profit means that while there are some opportunities for attendance at conferences, finding sponsorship is necessary if I want to attend all the conferences and meetings that are worthwhile and beneficial to my job.

Last month, Johnson and Johnson kindly sponsored my travel to Barcelona for the EASD conference, specifically to attend its second annual European Bloggers Summit. As the only person from Diabetes Australia lucky enough to be given an opportunity to attend the conference, I knew that I would be waving the Australian flag enthusiastically as I spoke about our experiences with diabetes social media and blogging. I searched out all the relevant, social media-focussed sessions and made sure I could get to them.

The day after arriving, I attended an IDF symposium about how social media can improve the lives of people with diabetes. The symposium was on the Sunday before the Tuesday start of the EASD meeting, so unfortunately, it wasn’t as well attended as I fell it should have been.

Given my recent presentation at the ADS/ADEA conference, I was very interested to hear this session – especially the presentation by Claire Pesterfield because as well as being a PWD, she’s also a diabetes nurse. Claire made some really interesting and valid points about how difficult it is for HCPs to jump on the social-media-as-support bandwagon when in most hospitals sites such as Facebook and Twitter are blocked by the hospitals’ IT people. It’s not really all that easy to tell people about great online support networks if the ‘red screen of death’ pops up every time you try to log on to one of them. I’ve been told that this situation is mimicked here in Australia.

We also heard Paul Buchanan (moderator the GBDOC tweet chats) speak about his recent (ridiculous, crazy, lunatic) arrival in Barcelona. From Brussels. On a bicycle. Paul and his group Team Blood Glucose were part of the Mobile Health Grand Tour – made up of a group of people who forgot that there are planes, trains and automobiles available to assist in the 2,400km journey from Brussels to Barcelona. Paul spoke about how social media and new diabetes technologies were employed on the ride. Interesting stuff!

The Euro Bloggers Summit ran on the Tuesday and Wednesday. It was a couple of days of workshops and presentations which covered how we could improve the numbers of people reading our blogs and ensure that we have the right ‘look and feel’ to them so that they were attractive to readers.

While the formal presentations were interesting and provided me with a lot to the think about, the thing that was the most valuable was the time spent speaking and networking with the other bloggers. There was a common theme in the room. While we like to think that there are people reading our blogs, it’s not really about the numbers. The real reason we all do what we do is because we are trying to connect with others who are going through the same things. We’re hoping that someone will read what we write and say ‘I thought I was the only one. But I’m not. I don’t feel so alone anymore’. We are telling our stories and sharing our fears and hopes while we look out for people who can share their stories with us.

Social media has the ability to remove all the things that get in the way of us feeling connected. We don’t worry about geography and thanks to translating software, language barriers can be broken down. Even pesky time-zones differences seem easily surmountable.

Being in the room with people who are doing the same things as me is an incredible privilege. Getting to hear about their work and their lives is an honour and I am grateful for every opportunity I get to learn from them. We need to start creating more opportunities like this in Australia. The World Diabetes Conference is the perfect chance for that to happen. Please take advantage of the fact that this significant diabetes meeting is being held in Melbourne and that there is discounted registration available to consumers. I’ll be there and I really hope to see some of you too!

Disclaimer

Johnson & Johnson covered my travel and accommodation costs so I could attend the Animas European Bloggers Summit. They were also kind enough to cover registration costs to the EASD meeting. There was no expectation that I would write about the Summit (or them). As part of this arrangement, I will be presenting for them at their booth at the World Diabetes Congress in Melbourne in December. You should come along and heckle me!

Time to get moving

October 25, 2013 in Diabetes, Exercise, Uncategorized, Wellbeing | 6 comments

Every magazine in the supermarket is warning me that if I don’t start moving NOW my body won’t be bikini-ready in time for Summer. I’d tell you that I’m panicked by this, but I’d be lying. Usually, my eyes glaze over and I reach for another block of Lindt Intense Orange chocolate.

There will be no bikini wearing, but there will be moving. It’s time for me to get back on the walkies bandwagon, and what better way to get going than the threat excitement of a fun run.

I’m kicking off Summer by taking part in Take Steps for Good Health – Diabetes Australia – Vic’s inaugural summer festival. And like the optimistic fool I am, I’m going to do the 8km WALK (not run). There are several reasons why I believe I can safely manage to do this. For starters, I can walk – one foot in front of the other and all that.

Also, I proved to myself earlier this year, that daily walking around a park is actually not too torturous enjoyable, provided you have a friend with you and a football team doing sit-ups nearby. Also, in the last few months, I’ve walked – and I mean seriously walked – around Paris, New York, Barcelona and Marrakech, often for hours at a time. Admittedly, I won’t be able to stop along the way for a cupcake or sangria, but after the walk I will be taking advantage of Summer’s Healthiest Picnic which will showcase healthy living stalls, cooking demonstrations and entertainment.

Plus, I have promised myself a new pair of shoes (runners – boring) for the walk and a new pair of shoes (ballet flats – excellent!) afterwards, so I am looking at this as a win for everyone. Well, my feet.

You can join my team – THE CUPCAKES! – or join on your own by going to the registration page.

Disclaimer

Diabetes Australia – Vic is my employer. I have not been asked to write about this event. I’m just telling you about it so you can a) join me, b) laugh at me c) do both.

THIS is what a busy couple of months looks like

October 24, 2013 in Uncategorized | 1 comment

The next couple of months are going to be the very definition of the word busy. There is so much going on that breathing will definitely be a luxury. I’m not talking about the everyday things that happen as part of regular life and work. I’m talking about some big stuff! With diabetes being in the spotlight from now until the middle of December, here are some dates for your diary that are also in mine.

WORLD DIABETES DAY – 14 November

There are always lots of activities on and around World Diabetes Day – keep an eye out on your local Diabetes Australia website to see. In Victoria alone, we have things happening for most of the week – many of which you can come along to.

And don’t forget to do the BIG BLUE TEST every day from now until WDD to help people with diabetes in need.

TAKE STEPS FOR GOOD HEALTH – 1 December

This exciting new event is the perfect way to kick off Summer. A fun run/ walk around the Tan followed by a picnic in the park. I’ve committed to do the 8km walk (stop you laughing now). I’ll be buying new runners in honour of this exercising achievement! Register now!

WORLD DIABETES CONGRESS – 2 – 6 December

The eyes of the global diabetes world will be firmly on Melbourne as the International Diabetes Federation brings its World Diabetes Congress to our great city. There is no better opportunity to hear about the latest and greatest in diabetes research and technology. And what better place to catch up with cyberspace and real-life diabetes friends. Details are here – including how to register for the special consumer price of just $99 per day. I’ll be there chairing a session and doing some presentations. Make sure you find me!

I hope to see you at many of these events. It’s going to be great having diabetes front and centre in many people’s minds.

What’s big, blue and takes 14 minutes?

October 23, 2013 in Diabetes, Exercise | Leave a comment

I’m all for diabetes awareness activities and the clever folks at the Diabetes Hands Foundation have found a way to not only get people talking about diabetes, but they’re also helping out people in need. Big ticks there, people!

This is the fourth year of the Big Blue Test, the proceeds of which have gone on to help over 10,000 people with diabetes. Each time you take part and log your results, a donation is made on your behalf to organisations helping people with diabetes.

Getting involved is easy as easy can be. Here is all you have to do:

Step 1 Check you blood glucose level. (If you don’t have diabetes, skip this step.)
Step 2 Get active! Do 14 – 20 minutes of activity. You can walk, run, clean the house, swim, dance…whatever floats your boat!
Step 3 Check your blood glucose again.
Step 4 Share your results on the right column of this page.

That’s it! Even exercise-allergic little ol’ me will be getting into this one by getting creative and thinking about the things I already do that can be counted as exercise.

So do it today – and tomorrow and the day after! You’ve got until 14 November. And get your family and friends on it too. Why not take some time out of your lunch break at work and get your colleagues involved too? If you run a diabetes support group, how about getting everyone to take the Big Blue Test together. Go on – do it! It’s good karma.

Okay – I know that I spend a lot of time talking about language, and I never use the term ‘test’ when referring to checking my blood sugar levels. BUT – let’s not forget what this is about – raising funds for those in need – not judging numbers and results.

The nothing days

October 22, 2013 in Diabetes, Real life | 6 comments

It’s been one of those days – a nothing day. The roller-coaster BGLs started overnight and haven’t stopped. Nausea hit around 11am only to be replaced with numb lips at 3.30pm just in time for an afternoon hypo.

I hate diabetes on days like today. It makes doing just the most simple, boring tasks difficult and right now after my BGLs have lurched between 2.8 and 22.4 I feel like my head is filled with molasses and my limbs are heavy with lead. I can’t see straight and I can’t think straight.

This is when I want diabetes to bugger off. If I could pack its bag and ship it to a farm, I would. It’s days like today that the silver lining is really hard to find and I am unable to think of anything remotely useful or decent to come out of having been diagnosed with diabetes. It’s days like today that I wish I was ignorant of diabetes and had never heard of it.

This isn’t burnout. This isn’t diabetes distress. I’m generally doing fine with my diabetes at the moment – regular checks, counting carbs, remembering to bolus, paying attention to CGM alarms etc. This isn’t where I do the I’m-so-over-it-I-can’t-deal-with-this-anymore-so-I’ll-pretend-I-don’t-have-diabetes dance which is frequently followed by the head-in-the-sand tango. No, this is just a nothing day where I want to pick up my diabetes, scrunch it in a ball and throw it a long, long, long way away.

It’s for these days that the term ‘invisible illness’ was coined. I’m at work, doing all the things that are expected on a Tuesday. No one is the wiser. Except me. The days that make me feel alone and tired because I can’t hold something up and say ‘look at this – it’s why I feel crap’. These are the days – the nothing days – that it feels like diabetes wins.

Selective myth-busting

October 21, 2013 in Advocacy, Awareness, Diabetes, Real life | 13 comments

Myths to do with diabetes frustrate me as much as the next person. I want people to get it right when they are talking about diabetes; I want the media to report diabetes correctly and I want facts presented in a clear, non-threatening, easy-to-understand way. Of course, this is relevant to all types of diabetes.

What annoys me is people who are furious about one myth, but more than happy to perpetuate others.

Some people in the type 1 diabetes community are outraged if they are lumped in with people with type 2 diabetes. Campaigns and petitions have been developed to change the name of type 1 diabetes to avoid confusion between the two conditions. The thought of being thrown in with people who ‘brought this on themselves’ (that, by the way, would be another myth and completely unhelpful) results in Facebook posts, Tweets and blog after blog after blog.

Me – I couldn’t really care less. I have type 1 diabetes, I know it and I’m happy to educate anyone who has no idea about autoimmune diabetes. I’m also too tired and just plain over this discussion, so I try to avoid it. I do acknowledge that if it wasn’t for the significant number of people with type 2 diabetes, I’m pretty sure that the 120,000 of us with type 1 in Australia would get lost when it comes to funding and media attention.

But, for some it is a real issue and they get angry and do anything they can to make sure that they are seen as different from the majority of people with diabetes in Australia – the type 2 diabetes community. And that’s fine. If that’s what your thing to get angry about is, knock yourself out. (My thing changes every day. Today it was that I didn’t get a cup of coffee in me until after 11.30am.)

There are many other myths about diabetes and they annoy me more. Here are just a selection that I’ve come across in the last couple of days:

If you use an insulin pump you have diabetes ‘really bad’ (wrong and rotten grammar!)
If you have diabetes, you can’t eat sugar
If you weren’t so lazy you wouldn’t have type 2 diabetes (genes anyone)
Diabetes isn’t really serious
Cinnamon cures diabetes (okay – it was me banging on about that, but I was just trying to justify in my own head eating an apple cinnamon muffin.)
You can catch diabetes.
You grow out of type 1 diabetes (blood. starts. boiling.)

I immensely admire and respect the work done by the Juvenile Diabetes Research Foundation, but using the term ‘juvenile diabetes’ just fuels the myth that this is a condition that only affects kids. Focusing on children who have diabetes is incredibly important, but those kids are going to grow up and hopefully live long, healthy, happy lives. Where is the awareness and focus on adults with diabetes? The reason the term juvenile diabetes isn’t used anymore is because it doesn’t accurately represent the broader type 1 diabetes population.

Of course I’m being somewhat self-serving. I was diagnosed as an adult and my experience of life with diabetes is through the eyes of someone who has lived with it since my mid-twenties. But during that time, I’ve needed information and services and programs that just weren’t there. Information about pregnancy, body image, parenthood, work life balance – things that are relevant to me at this stage of my life – was quite thin on the ground!

I completely agree and believe that there needs to be programs and activities developed specifically for kids with diabetes. Diabetes in day care and school settings is a critical issue to be addressed; camps for kids with diabetes are brilliant. But this is an ages and stages condition. Why is there not as much of a focus on other periods? Whilst some attention is being given to transition from adolescent to adult health care, what about for men and women with diabetes in their thirties and forties? Where is consideration of women going through menopause or for people at retirement age? Why is no organisation focusing on older adults with diabetes in aged care?

If people want to make sure that the world understands that type 1 diabetes is different to type 2 diabetes, then surely they also want to break down other myths about type 1 diabetes. This is not a condition that only affects children. Half of those diagnosed with type 1 are diagnosed as adults. The majority of people in Australia living with type 1 diabetes are adults.

Break down the myths. Educate people about what type 1 is all about. Just don’t do it at the expense of all the facts.

Is there a myth about diabetes that annoys you?