Diabetogenic

One trick pony

April 15, 2015 in Awareness, cupcakes, Diabetes | 1 comment

I have an app on my iPhone that tells me what I was doing (social media-wise) on this day in history. When I clicked on the app today, I discovered that I am clearly a creature of habit. Here are some posts for 15 April over the last four years.

Diaversary4

Do you see a pattern? Every year there has been cake and ceremonial yelling from the rooftops that I am another diabetes year older. And someone – anyone – get me damn cupcake!

This year, I’m marking my diaversary with a quiet nod to the last seventeen years, but not much more. I’m just not in the right head space to do anything more.

However, today just happens to be the launch of the Consultation Paper for the development of the Australian National Diabetes Strategy and the opening of the consultation process. You can read all about it in my post at the Diabetes Victoria blog here.

Perhaps instead of using my diaversary to look back at my diabetes life and celebrate the last year, I’ll use it to think about looking forward. I. I might just find myself a little cupcake and consider what I hope to achieve in the next five years. Until there is a cure for diabetes.

Putting my money where my mouth is

April 14, 2015 in Awareness, Health, Real life | 3 comments

Today, I (literally) rolled up my sleeves and put my money where my mouth is.

It’s fluvax day at work and with most of my colleagues, I lined up to get a free lollypop. And my annual flu vaccination. With all my banging on about how important it is for us to be vaccinated, it would be pretty hypocritical of me to not get my flu jab each year.

Here’s how it played out:

Step 1 – look of great suspicion from me because no one but no one can give a needle like I can.

Fluvax5

Step 2– Squeeeeeze! And waiting for the sting.

Fluvax2

Step 3 – Here. Let me help you! (AKA – I’m really not good at letting other people jab me with needles.)

Fluvax6

Step 4 – I’ll take it from here.

Fluvax3

Step 5 – Nope – didn’t hurt.

Step 6 – Worth it!

FLuvax4

Okay, so here’s the deal. People living with chronic health conditions – such as diabetes – are more susceptible to catching (and experiencing complications from) the flu. The flu is not a little sniffle that has you deciding to take the day off so you can sit on the couch, eat left over Easter eggs and binge-watch Netflix. The flu is terribly debilitating. Approximately 3,000 Australians die every year because of the seasonal flu, or complications due to the flu or pneumonia. Yes – it’s serious.

This terrific information sheet offers lots of information about the flu, and this year’s vaccination program. It’s been developed by the Australian Government’s Department of Health, so if you are an anti-vax twit, now is your time to start talking about conspiracy theories and how the Government is in the pocket of Big Pharma. (Please do it away from me. I’m not interested.)

Also useful is this piece that appeared last month on The Conversation.

The flu is incredibly contagious and spreads easily through infected droplets in the air and by hands. Vaccination is the best way to prevent and stop the spread of the flu. I don’t know about you, but I do as much as I can to live a healthy life. Getting my annual flu vax is a really simple, relatively painless and safe way to help me on my way.

Stress fracture

April 13, 2015 in Devices, technology, Wellbeing | Leave a comment

I have always known that stress affects my diabetes. Stressful situations – particularly prolonged ones – have the potential to send my BGLs into the stratosphere. Regardless of constant rage-bolusing or the complete avoidance of any food containing a scrap of carbohydrate, getting numbers in range when feeling stress is almost impossible.

The thing though that surprises me is how even small stresses can affect BGLs. Wearing a CGM gives great insight into this. Often, I see sudden rises in BGL that almost as suddenly drop back to within range.

After a day with a few unexplained (or unexplainable) spikes on my CGM graph, I decided to see if I could work out what was going on. These spikes didn’t seem to correlate with meal times, so I knew it had nothing to do with food intake.

As explained previously, I was wearing CGM under some duress, really. Aaron was away for work and it was on only for my peace of mind. To minimise feeling overwhelmed, I basically had my settings so that the only alarms and alerts I’d receive would be when I was dropping too quickly or when I was low. The high alarms were effectively turned off.

But after seeing spikes, I started to wonder what was happening. I turned the high alarms back on the next day and started paying attention to when I was starting to go high. Each and every time, it was because I was in a situation with some element of adrenaline-causing stress.

One time it happened when I was caught in traffic and I wasn’t sure I would make to school before the bell rang. I started getting more and more anxious that I would be late.

Another time, I was in a meeting that was running overtime and I needed to move my car before the parking meter expired.

And then, there was the time that I walked in the door to find the letter from VicRoads informing me that my medical review was fine and that my license wasn’t being suspended. And that I did not need to provide an eyesight report. (The outcome here was good, but before I read the letter, just seeing the logo on the front of the envelope, thinking about the difficult phone calls to VicRoads staff and taking a few minutes to consider what could be inside had my stress levels increasing.)

The adrenaline response is so clear on the graph. In all of these instances, there was a spike (not always huge, but definitely visible) that only lasted a short while. Often the blip would be only half an hour or so.

Stress isn’t always bad though. Had I been wearing a CGM when I jumped out a plane last year, I am sure that the stress response – from the excitement, the anticipation and the outright fear! – would have been reflected on the graph.

Excitement – from all sorts of things – may make you feel great, but it can still cause a spike. Managing stress-causing situations – especially those out of your control is sometimes impossible. And sometimes, you want to do things that are going to cause that blip. Some adrenaline-releasing activities can be very, very fun!

Keeping an eye on the leaps and bounds of my CGM graph reminded me (yet again) of the complexity of diabetes and how pretty much everything impacts on it in some way. I turned the high alarms off after a couple of days. I was starting to get concerned about the number of uncontrolled stress-inducing situations that I was having that particular day and the alarms themselves were starting to stress me out. So off they went. Because that was ONE thing I could control!

Family consideration

April 10, 2015 in Family, technology, Wellbeing | Leave a comment

Yesterday, I woke up to this tweet from the fabulous health psychologist, Dr Katharine Barnard (who, apart from being quite brilliant is also incredibly lovely and fun to have a cuppa with!):

I didn’t have to think about it. I immediately replied with this:

I am very lucky when it comes to having a supportive network around me to help me manage my diabetes. Ultimately, the decisions are mine, but that doesn’t mean that my family is excluded from the discussions.

And it also doesn’t mean that I don’t consider my family when making decisions. This has been especially true when considering technology that costs a lot of money.

When I first started on a pump, there were no subsidies for consumables. As such, I needed to think about where the $300 per month ongoing costs would be coming from. It was 14 years ago; we were newly married with a mortgage. $300 each month was (and still is!) a lot of money to find in the household budget.

We worked out that we would be able to afford it (the pay off was fewer shoes for me), but we were also really lucky to have been told by both our families that they would help out if there were months that we couldn’t afford the supplies.

In later years, the same issues needed to be considered with CGM consumables. Again, with no subsidies, could we find the money to cover the costs of the consumables.

But the financial is not the only thing that impacts on family. What about the impact of having a loved one constantly attached to medical equipment?

When I first started pumping, I wondered what it would mean having a device stuck to me all the time. Would it be a constant reminder to me of my diabetes (not that diabetes is something that is easily forgotten)? But even more than that, I was also worried about how other people would see me. What would my friends and family think when they saw this little box permanently attached to my belt, or shoved down my top? What would they think when they saw me pull it out to press a few buttons? Would it change anything? Would they think differently of me? Would they think of me as ‘sick’?

I worried about how my husband would react to the infusion set taped at all times to my stomach.

In my case, it turned out that none of this mattered. In fact, no one made a big deal out of it; instead everyone was really supportive of me using the technology to manage my diabetes and congratulated me on my decisions.

So it surprised me a couple of years ago when I trialled the Dexcom CGM. I had been wearing CGM for a number of years already without feeling particularly self-conscious.

But the Dexcom sensor, with its different shape to other CGMs flung me back to the uncertainty and insecurity about wearing a(nother) device on my body. As I put in the first sensor and pushed on the transmitter, I felt queasy in the pit of my stomach. Again, I worried about what people with think of the thing protruding through my clothes. And would Aaron start to think that his wife was turning into a cyborg in front of his very eyes, with more and more buttons and beeping machines keeping me running?

As it turned out, I was, again, worrying for nothing. No one said anything. My parents and in-laws show only kind concern and support; my sister hasn’t made any comments about any of the tech (which is a little disappointing because I am sure that she would come up with some brilliantly hysterical snipe that would have me doubled over laughing – this is, after all, the woman who gave me this birthday card for my 40^th); my friends ask general questions about how things are going. And Aaron and the kidlet just take the tech of what it is – life saving.

All of their support and encouragement of my diabetes will never, ever be taken for granted – I will be forever grateful. And accepting me for who I am – robot parts and all – is a gift they give over and over and over again. I was reminded of that with Kath’s tweet to me yesterday.

It absolutely doesn’t matter if you are a fan of Coldplay or not (I’m not) but this cover of ‘Yellow’ is possibly the most beautiful thing I have heard in a long time. I can’t stop listening to it. We were lucky to see Petra Haden and Bill Frisell play when we were in New York in an absolutely stunning gig. Enjoy – and check out their other stuff too.

Stripped bare

April 8, 2015 in Awareness, Diabetes, Wellbeing | 4 comments

Yesterday, I looked out the kitchen window into the back garden and out over the back fence on the other side of the laneway, and I noticed that our neighbours’ beautiful big tree was starting to wear its Autumn colours. The green leaves were giving way to the most beautiful deep reds and I know that in just a couple of weeks, the branches will be bare, letting in the pale Winter sun.

I don’t think I’ve ever been so aware of the seasons changing as I have in the last couple of years. Perhaps it’s because with more friends overseas I see their seasons change in opposition to ours – we swelter whilst they curse snow; we shiver while their Summer blazes.

But with each season that passes, I am more and more conscious of the time I’ve lived with diabetes.

In the middle of this month, I will have lived with type 1 diabetes for seventeen years. I know that in the grand scheme of things – and when I think of celebrating Kellion medallists – seventeen years is nothing more than a drop in the ocean.

But to me, it feels like a long time. In fact, it’s the first time that I’ve thought the number and it has felt big. While in single figures, it was tiny and even hitting ten or twelve years didn’t seem much. Neither did sixteen.

Seventeen, however, seems big. Really big.

I always plan to celebrate my diaversary and mark it in some way. Sometimes it’s just a cupcake with the family or friends. But I mark it and recognise it as something I want to acknowledge and celebrate. I celebrate that I am living well with diabetes and that I am still doing all the things I love. I celebrate the minimal impact diabetes has had on the previous year.

This year though, I am not feeling like that. It’s not that I don’t want to celebrate (I’m not one to pass up cake), it’s just that I’m not sure what I am celebrating anymore. I’m still living well, but the impact over the last 12 months has seemed greater than ever before.

I have always been proud of the position diabetes has held in my life. And I have always been proud of the way that I have never let it stop me doing anything. But in recent times, I’ve come to wonder and worry – if the reason that things have been that way aren’t so much of my doing, but rather because that’s how my diabetes has been.

The privilege of being able to say ‘diabetes hasn’t stopped me from (insert whatever)’ is because my diabetes has been manageable, and well behaved. What if that really changes? What if things suddenly mean that I am stopped from doing what I want?

I feel like diabetes is, in some ways, stripping me bare with its relentlessness. Feeling like I am managing and coping has become a desperate pursuit and feel overwhelmed and overcome more easily.

I’m not sure if is purely the emotional toll, which has in recent times been more significant, or if is that combined with difficult lows that seem to be becoming more frequent.

But whatever it is, I’m feeling exposed – although to what, I’m not sure.

I thought of all this as I stood at the kitchen window and looked at the tree. I thought about how exposed the branches would be soon. But I also thought about how it was only for a few months. Come Springtime, the branches would be covered in pretty blossom and after that, full again with bright green new growth. The seasons are so defined and clear.

Perhaps the way I feel about diabetes is all cyclical and seasonal too. Maybe the impending cold is why I am feeling exposed at the moment. Maybe I just need to batten down for a few months, wrap myself up and keep myself warm until the season changes again.

And in the meantime, gently and quietly recognise my diaversary, give a nod to the year that has passed and just keep going on.

Dangerous

April 7, 2015 in Food, Wellbeing | 2 comments

It used to be hard to find a café open on Good Friday. Not any more. Last Friday, we had breakfast at Marios in Brunswick Street, enjoying excellent coffee and awesome food. It set the scene for the weekend which was basically four days of cooking, baking and eating.

We had two family Easter celebrations – a picnic at a country airfield on Saturday and brunch at our place on Sunday morning. And then a wedding celebration on Sunday evening.

The four day weekend was finished off with a home made chocolate self-saucing pudding (because I need to somehow – ANY WAY POSSIBLE – use up the kilos and kilos and kilos of Lindt Easter Bunnies in our house).

I can’t think of a more perfect way to celebrate – family and food. And a rabbit that visits in the middle of the night leaving chocolate. What’s not to love?!

After breakfast on Friday morning, we popped next door to the bookstore, and as I wandered down the store, browsing the shelves, I saw this:

‘You should buy this,’ said one of my family because they (wrongly) think they are amusing.

No. No I shouldn’t.

In between all my weekend carb loading (not sure for what) I spent some down time reading and learnt all about orthorexia nervosa – yet another reason why self-styled health gurus and the rubbish they sprout is dangerous.

People with orthorexia nervosa are so consumed (no pun intended) by the thoughts of the quality of the food they are eating, they start to refine and restrict their diets. In the endeavour to only eat foods considered ‘pure and healthy’, people with orthorexia nervosa may become malnourished because of the strictly limited food they will eat.

The minefield of ‘wellness experts’ gets bigger and more treacherous every day. Whether it is clean eating, raw food, Paleo, quitting sugar or any diet that needlessly insists on restriction of foods or food groups, we need to see this industry for what it is: dangerous and incredibly harmful.

Orthorexia nervosa is not currently a recognised eating disorder, however there is a push to have it classified in the DSM-V, the classification and diagnostic tool used by mental health workers to diagnose mental illness.

Maybe a recognised eating disorder will be what it takes to finally realise and accept the danger and hazard posed by these charlatans.

Long weekend love

April 2, 2015 in Diabetes | 2 comments

Soon, I will be turning off my computer, walking out of the office and spending the next four days doing not much other than hanging out with my nearest and dearest. And eating. My main food groups for the next few days will be hot cross buns with lashings of butter. And rabbits. Chocolate bunnies, that is! There will be cake and I have some new cookie cutters that need breaking in, so I expect there will be cookies too.

For those of you lucky enough to be sharing the four day long weekend love, have a wonderful break. Hopefully your diabetes numbers will be kind, and sugar-free chocolate scarce.

If you have a spare 30 or 40 minutes, grab a couple of Easter eggs, a cup of tea and sit in a quiet corner to fill in the Diabetes Miles-2 survey. Jump over to the Diabetes Australia – Vic blog where you can read what I’ve written about the survey and why it’s such an important piece of work.

I’m a day early with some music, but this is definitely worthy of a few plays over the next couple of days. It’s Jon Cleary and the Absolute Monster Gentlemen who we heard play the other night in an incredible gig. Enjoy!

From the sublime to the ridiculous

April 1, 2015 in Advocacy, Awareness | 1 comment

Let’s start with the ridiculous. This found its way to me yesterday:

What? Grapefruit has been known to prevent ‘diabetics’ from what? If anyone can explain that to me, please do so in the comments below. (And yes, it originated in some ridiculous we-can-cure-you-of-everything site that promises the world and delivers nothing. Except bad grammar.)

Thankfully, it was balanced by this:

Sandro Demaio and the team from NCDFree are bright, sharp, and looking at public health in innovative ways. Check them out. (Don’t bother checking out the wellness idiots though. Grapefruit is a yummy fruit – delicious in a citrus salad, great mixed with vodka and blood orange juice. But it won’t prevent anything.)

Hi!

March 31, 2015 in Diabetes, Real life | 2 comments

Recently, I had a period where for three days, I dealt with BGLs that would not drop below 15mmol/l. Most of the time, they were above 20mmol/l, which is revolting and even more so when considered in the US-measure: 360mg/dl. (I’m not sure why, but for those few days, I kept converting my high numbers to US numbers. For anyone playing at home, I hit 461mg/dl. Don’t play at home. Really. Don’t. And file under: #StupidThingsIDoWhenHigh and also, I am good at multiplying by 18.)

Anyway, it was crap. I felt crap. And I wanted to cry. A couple of times my stupid meter simply said ‘hi’ which is not so much friendly as a declaration of giving up. It doesn’t know where to go above about 33mmol/l, so it just stops working, instead throwing out random greetings. My CGM graph was off the charts.

Why was I high (hi)? I’ve no idea. Seriously. No idea. I wasn’t eating cupcakes for breakfast, lunch and dinner. I went through the usual checklist of ‘things that could possible make my BGL high’ which includes:

Eating cupcakes for breakfast, lunch and dinner
Forgetting to bolus
Not bolusing enough
Bent cannula
Dodgy insulin
Stress
Impending virus
Period
Exercising when already high (ha, as if!)
Eating ridiculously large quantities of ridiculously high carb foods
Eating a whole jar of Nutella in one sitting
Infection at cannula site
Pump not delivering properly
Following a paleo diet/I Quit Sugar diet and pretending I’d cured myself of diabetes and didn’t require insulin anymore
Anything and everything else ever and ever and ever and ever

I wasn’t forgetting to bolus – I actually was correcting every couple of hours. I (as it turned out, unnecessarily) ripped out three cannulas – and starting looking at the fourth one very suspiciously, wishing I had see-through skin so I could identify any bent-cannula hiding under the skin. And then thinking about how creepy having see-through skin would be and then vomiting a bit in my mouth.

Nope. No reason at all.

I stopped eating anything carb-containing, instead eating a salad of greens and chicken for lunch and chicken soup with (non-carb containing) vegies for dinner. I rage-bolused for the milky coffee that I really needed at 3pm –the only carbs I consumed for the whole day.

And still, every time I checked, I was sitting close to 20mmol/l. Any reading of 15mmol/l, which ordinarily would result in me throwing a mini-tantrum, seemed a victory. But it was fleeting and before long, I would be heading upwards again.

By day three, I felt that I had an aura of exhaustion surrounding me. My limbs were heavy and climbing the stairs to my office was draining. I countered my exhaustion with ridiculous quantities of coffee, replacing my usual latte for a short macchiato to minimise the milk I was drinking.

I had a lunch of sashimi (my favourite no-carb lunch) and got on with my afternoon at work.

At about 2pm, I checked my BGL, expecting to see another high number. But instead, I had my first number under 10mmol/l for three days: 9.8mmol/l said my meter.

Over the next couple of hours, I kept a close eye on things. I had quite a bit of insulin on board (yes, I know I shouldn’t, but of course I rage bolus when numbers won’t come down and I am frustrated) and I didn’t want to crash and burn with a nasty hypo.

I kept a fruit box of pineapple juice next to me and took a sip every now and then and managed to not dip below 4mmol/l.

By the next day, I was back on a far-more level playing field. My numbers were in-range and there were no more surprises.

I reviewed my BGL readings and pump activity for the previous days and in all honesty can’t say what I would have done differently. There really was absolutely no discernible reason for the crazy-high numbers – at least none that I could see.

Although my BGLs remained stable for a few days afterwards, it took me some time to get over the sludgy feeling that follows an extended period of high numbers. I was tired and achy and my legs continued to feel heavy.

All in all, it was about six days of feeling below par – first from the high numbers and then its aftermath. And, of course, the emotional frustration that comes with not being able to pin point the reason for feeling crap – and then being able to fix it.

When people ask what living with diabetes is like, I don’t know how to put into words these sorts of experiences in a way that makes any sense. I can explain the number of times I have to jab my finger to check my BGL. I can talk about how I wear a little box shoved in my bra and press a few buttons for it to deliver me some life-saving medication. I can count out the number of hours I spend with healthcare professionals each year.

But how to explain and quantify the frustration? How do I explain the sense of helplessness when I can’t work out what is going wrong? How do I explain that sometimes there are simply no answers and we just have to ride it out until things (hopefully) get back on track?

I’ve no idea. But for me, this is the essence of diabetes. The frustration and helplessness. And it remains for a long time after numbers get back in range.

Stupid things I do when low

March 30, 2015 in Hypo, Lows | 1 comment

Last week, I tweeted that I really should start a new Twitter account that tracks all the stupid things I have done (and continue to do) while having a hypo.

I’ve spent the last couple of days collating just a few of the things I have done. These are recent things. I think, perhaps, I have managed to wipe out a few memories of other stupid things I’ve done when low.

Stood with the fridge open, staring at juice boxes, jars of jam, and bottles of full strength soft drink for 10 minutes while eating a cucumber. Because that is the perfect way to bring up those BGLs really, really fast!
Sorted through M & Ms, removing the green ones that I had convinced myself would lower rather than raise my BGL. I’ve done this many times.
Referred to my daughter as a penis. Kind of. One day, just before we went overseas at the end of last year, I had one of those days where I just could not get my BGL above 4mmol/l. I was rushing around trying to tie up loose ends before we left. I asked the kidlet to help me with something and when she finished and I went to thank her I got a little confused. We have many nicknames for our girl. Two of my favourites are ‘Sweet Pea’ and ‘Sweetness’. In my hypo-fug, I said ‘Thank you Sweet Pea-ness’. As I wrote in the text message I sent to Aaron just after I said it: ‘Say it out loud.’ (She reminded me of this just yesterday. And then felt the need to tell my parents about it when we were visiting. Add this to the list of things that have me in the running for ‘mother of the year’.)
Written on the wall in the kitchen.
Stood at the juice aisle of the supermarket repeating ‘Drink the damn juice, Shelby.’ Go ahead and imagine the looks of the people around me.
Just the other day I poured my morning coffee over my jeans. While I was trying to take a mouthful. How? Really, how is this possible? My legs and my mouth are nowhere near each other!
Answered the phone. In Italian. If you ever call me and hear me pick up with ‘Pronto’, know that I need sugar. Stat.
Cried uncontrollably. Just because.
Laughed uncontrollably. Just because.
Bored a service station attendant almost to tears, gushing because I had discovered he sold green apple Mentos. The conversation went along the lines of ‘ Apple. Mentos. You have green apple Mentos. I love green apple Mentos. I’ve never seen them in Australia before – only in France. Actually, I’ve not really seen any green apple sweets in Australia. It’s not really our thing. Is it? But in France? They love it. There is green apple everything. Did you know that? Okay. I am going to buy some of these. A lot of them. All of them. Can you just sell me all of them? Whatever you’ve got – I’ll take it!’
Yeah, so bought about 40 tubes of green apple Mentos.
Had to call out to a sales assistant to help me get out of a dress I was trying on in Seed. I simply could not work out how to undo it and lift it over my head. (Thankfully, the staff at the Carlton Seed store know me well…)
Sat on the dog. I do this all the time when I am low. It’s as though my hypo-brain stops registering small fluffy animals as things to not sit on. Jasper now just looks at me as if to say ‘Again?’ The puppy is still indignant about it.
Tried to remove a just-baked cake from the oven. Without oven mitts. Didn’t end well. For my hands – or the cake for that matter, which was dropped on the floor, fell out of the (hot) tin and crumbled on the floorboards.
Used a whole bottle of shampoo washing my hair in the shower. I stood in the shower for over half an hour washing, rinsing, washing, rinsing, washing, rinsing, washing, rinsing until there was nothing left in the bottle. Low blood sugar = very, VERY clean hair.
Rearranged furniture. Because hypos sometimes (and somehow) give me superpowers, it is the right time to move a couch, or a (full) filing cabinet, or a bookshelf (no need to remove the books). And of course, there is no way that this exercise will result in a further lowering of BGLs, will it? Of course not! (Hypo boy does this too!)
Gotten ready to go out and left the house wearing shoes that didn’t match. In my defence, they were both black.

Thankfully, there are many things I’ve NOT done while hypo. I am pretty committed to the ‘Treat before you Tweet’ mantra and have managed to stay off social media when my (already limited) filter has the potential to go completely AWOL. I’ve said a few not-too-nice things to/about ‘wellness experts’ when not hypo; I dread to think what I’d say if I forgot to keep myself nice.

Okay – you’re turn. What are some of the things you have done whilst low? Go!