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I have a significant birthday coming up. I’m turning 40 tomorrow which, when I mention it, is generally met by people either speaking in hushed tones (‘Are you okay about it?’) or high-fiving and hugging me (‘You go girl!’).
I am okay with it and in all honesty, hitting the big four-oh hasn’t been something that has freaked me out or filled me with dread. I think about how I was when I was 20 or 25 or even 30 and I know that I’m proud of the person I am now. I’m comfortable in my skin.
I also have my 15 year wedding anniversary coming up. In times when we’re told that the marriages last an average 8.7 years, it feels good to cross off this milestone.
As much as birthdays and wedding anniversaries should be celebrated (I’m a big believer in cake, cards and carats) I’m actually finding that it’s actually my diabetes anniversaries that are becoming more and more meaningful.
This year, I ticked the fifteen years with diabetes box. I look in awe at friends who have had diabetes for many more years and at Kellion medallists who have lived lifetimes with the condition. But reaching fifteen years and doing a quick check of how this condition has affected my life leaves me with mixed emotions.
There is satisfaction that my annual complications screening checks come back with favourable results. Even the six-monthly visits to the ophthalmologist have become bearable – or at least, less traumatic – because the reports from my lovely doctor have been positive. Cataracts notwithstanding, there doesn’t seem to be any significant diabetes-related damage at the back of my eyes.
The way that my hypos have changed over recent years doesn’t leave me feeling quite so confident and self-assured. I am concerned about the times I’ve needed assistance, and with the white out hypos where I have lost significant chunks of time.
And then there are the things that lurk in the back of my mind, pushed away and only allowed to come out in the middle of the night when I can’t sleep, or in moments of surprise when I’ve forgotten to keep them hidden. Things like worrying about reduced life-expectancy or becoming reliant on my family for my care. And fear that despite common sense and what I’ve been told that it really is because of diabetes that I have miscarried three times.
But mostly, there is fist pumping when I think of how diabetes hasn’t stopped me from doing things; nor has it decided how I will live my life.
So I’m planning on big celebrations for turning 40 – it should be celebrated and not with any of this ’40 is the new 30’ crap. But with acknowledgement and some pride of who I am, what I have achieved and the wonderful people I have around me who fill my life with love and happiness. I’ll celebrate the places I’ve been and look to the places I’m going. And I will also acknowledge that in over 15 of the 40 I’m celebrating, I’ve done it all despite diabetes.
Starting birthday celebrations a couple of days earlier thanks to the waiters at our favourite cafe who surprised us with a sparkling tiramisu!
I have one sister. She is younger than me and much, much smarter. She also is able to wear yellow shoes and look elegant and stylish – something that I am yet to manage without looking like Donald Duck.
Actually, her style is something that is enviable. Earlier this year, she moved back into her newly renovated home. This may sound unremarkable, but the way she managed to pull together everything in a timely and on budget way is testament to her super organisation skills. Now, she has a home that is perfect for her in every way because she’s considered how all aspects of its design need to work with her. It’s light, bright and airy and a perfect showcase for the beautiful things she’s collected in her travel to over 48 countries. Everything has a place and every bit of space has been used perfectly.
I guess that now she’s moved in she’ll never be leaving!
That’s part of the appeal of doing something exactly the way you want. She designed the extension and renovation to work with her life. Her house and garden are low maintenance and easy to live in. There are open spaces and a kitchen with wide benches for the meals she makes for friends and families (and birthday cakes she makes for her ridiculously fortunate niece!). Everything works because she was able to plan it from the beginning, keep an eye on it throughout the build and then put the finishing touches on it herself once she moved in. When things didn’t go to plan or there was a problem, she worked through it with her builder and changed the plans to suit. But she never lost sight of what it was that she wanted and what she needed. It has her name stamped all over it!
I’m really trying that philosophy with my diabetes at the moment. I’ve set some goals that are right for me and, I believe, achievable. I’m keeping an eye on things and using the results I’m getting to make plans and make changes. When I’m thrown a curve ball (AKA three overnight hypos in a row) I make changes – but I keep the goals I’m working towards at the back of my mind. I’m doing things the way that work for me, fit in with my at-the-moment-crazy life and don’t get stressed if I need to make a slight change to things.
So far, things are working okay (albeit the three nights in a row hypos). I’m relaxed because I’m looking big picture, not at tiny results. A lousy day of numbers is but a lousy day – not a long term indication. Stopping, regrouping and taking stock regularly help.
So while the end game for me is not a beautiful house it is diabetes managed in a way that makes it easy for me to breathe. And that’s a good thing.
Sisters
World Diabetes Day is drawing to a close across the world. The clock is about to turn over into 15 November but it seems that blue lights will burn brightly for some time to come.
Melbourne’s iconic GPO gets its blue on for WDD13
My WDD started on its eve with an important event for diabetes research. The 2014 Diabetes Australia Research Trust awards presentation gave 22 Victorian researches grants. Many people aren’t aware of the commitment Diabetes Australia makes to research each and every year. This year alone over $3million dollars was given, including the $150,000 Type 1 Millennium Award which is specifically for research into type 1 diabetes.
After the awards, I found myself in the Melbourne drizzle wandering down to the GPO. As I approached, I saw it lit in blue. It looked splendid! Staff from Diabetes Australia – Vic and some of the Diabetes Australia Young Leaders donned blue ponchos and held all manner of lit-up blue things (I got a wand!! I’m just like Hermione!!) and stood in the glow of the GPO. This is part of the IDF’s global light up a monument campaign. You can read here for other iconic buildings and monuments that have been washed with blue. It was some fun for an important awareness-raising activity. And now, I have a blue wand!
On WDD proper, I found myself up just after 4am and on a 6am flight to Sydney to answer some questions about diabetes on a new breakfast television show. Studio 10 ended its morning with a discussion about World Diabetes Day and I was asked about life with type 1 diabetes. It was an opportunity to bust some myths which I’m up for pretty much any time! You can see the interview here.
What I wish I knew…..
Next up was the launch of a new book called What I wish I knew about type 2 diabetes which is a collection of stories of people living with diabetes (all types – not just type 2 despite its title) and health professionals working with PWD. This gorgeous little book by Marty Wilson tells wonderful tales of people who have lived with diabetes for many years. It also includes one of my previous blogs. Look out for the book – it’s definitely worth a read.
World Diabetes Day is an important day for the diabetes community. It is our day to talk about diabetes and have others thinking and talking about it too. Whether it be international organisations like the IDF who yesterday released new global diabetes statistics in their Diabetes Atlas, or local and national diabetes organisations like Diabetes Tasmania who attended Government House for an event with some of their Young Leaders, or community events and activities like the global 24-hour diabetes Twitter chat, it’s a day where diabetes is front and centre. My Facebook and Twitter streams were full of blue and family and friends commented on my posts and even posted on their own pages about diabetes. (A shout-out to my sister who got TOTALLY in the WDD-spirit by wearing blue circle earrings and plastering her Facebook wall with WDD messages. Thanks, Toots!) I even pinned blue circles onto our real estate agents’ very suave suits as they came to do an open for inspection for our house sale last night. Everywhere I looked I saw blue.
Diabetes may not be understood by everyone. But yesterday was a day where we could talk about it and hopefully give people a little more understanding about what life with diabetes means.
Of course, it doesn’t end here. The WDC is in just two weeks. Let’s keep the conversation going. And don’t forget the OzDOC get together on 3 December as part of WDC!
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.
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!
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!
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.
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!
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.
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.
Diabetogenic 