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WDD2014

It’s World Diabetes Day and everyone is talking diabetes. Or so it seems.

Do we need another awareness-raising day?

Yep. We do.

We know the numbers. We know that diabetes is serious. We know that prevention is the key – prevention of type 2 diabetes (where possible) and of complications in those already living with diabetes. I could write how World Diabetes Day can draw attention to these facts.

But instead, I’ll tell you why I – a person living with diabetes – need World Diabetes Day.

I need today because it gives an opportunity to talk about real life with diabetes.

On Wednesday, (also known as ‘I hate diabetes day’) I spoke at the Austin Hospital’s Grand Rounds. Most hospitals have Grand Rounds – it is a learning opportunity for doctors and other healthcare professionals to hear presentations and ask questions about different medical conditions – sometimes outside their area of specialty.

Wednesday’s session had a World Diabetes Day focus – the lecture theatre was adorned in blue balloons and just about everyone in the room was wearing an item of blue clothing.

I gave my talk which consisted a discussion of the consumer-focused program we run at Diabetes Australia – Vic; how healthcare professionals can use social media to interact with people with diabetes and how PWD use social media to connect.

At the end of my planned talk, I looked around the room. I think my talk had been well received – I know that I am certainly different to the usual healthcare professional presenting and I also knew that the next speaker – the wonderful Professor Joe Proietto – was giving a talk on type 2 diabetes medication.

‘Just before I go, I want to say something,’ I said. I took a deep breath. ‘I hope you have enjoyed my talk. I hope that it has given you a better idea of some of the programs and activities available to be people with diabetes. I hope you are thinking about what your Twitter handle is going to be because I really want to see ALL of you in the Twittersphere next week!! But I just want to add something.’

I moved away from the lectern and stood in the middle of the stage.

‘I look okay today, right?’ I saw heads nodding around the room. ‘My dress is neat, my hair is clean. I have make up on and I know I have matching shoes on – I checked before I left the house. My lipstick is on straight. I just gave you a twenty minute talk, and I think it all made sense….I think? The words did form coherent sentences, right?’ More nods from the people in the theatre.

‘I look okay.’ I paused again.

‘But let me tell you how I am feeling. I had a terrifying hypo overnight and was awake for a good part of the night. I needed help to deal with it, and my daughter, when she woke up this morning, had to see me feeling pretty damn crap. My dad is sitting over in the corner there because I was just too tired to drive here from Brunswick, and he kindly offered to chauffeur me so I wouldn’t need to take a cab.’ I looked over at my dad and smiled. And then kept going.

‘Why did this happen? Well, I guess if we want to find a reason, we could say it was because before I went to bed last night, I didn’t check my blood sugar. You see, I just couldn’t be bothered. Now, before you think ‘how stupid’ or ‘serves her right’ or start to judge me, know that I had already checked my BGL about 15 times throughout the day and the thought of doing another BGL check was just too much for me. And I thought that I was okay based on the previous check and knowing that I had no insulin on board.

‘But you know what? It doesn’t matter why it happened and if I wasn’t telling you this now, you would never know. You wouldn’t know that I really would like to curl up under one of the seats and fall asleep; you wouldn’t know that I am still dealing with the hypo-rebound and my BGL is sitting somewhere in the mid-teens. You wouldn’t know that my arms and legs are heavy from being post-hypo-exhausted. You wouldn’t know that I kind of want to cry because today, my diabetes is other people’s problems. Not just my own.

‘Now, I’m not telling you this because I want you to feel sorry for me. I’m not telling you this because I want you to pity me because I have diabetes. It’s crap and that’s all there is to it. I’m telling you this because I want you to remember this story next time you are sitting opposite one of your patients who is living with diabetes – or any other medical condition for that matter – and they look all great. Don’t assume. Don’t ever assume that everything is all fine. Because I can tell you for sure that while I will be blogging about this to share with other people with diabetes, I certainly won’t be sitting in my next appointment telling my endo about it.’

I stopped again. The room was silent – no one moved.

‘Thank you so much for having me here today. And happy World Diabetes Day for Friday.’

I walked off the stage.

I love Joni Mitchell. And I love this song – Blue – which is, of course, perfect for today.

Today I hate diabetes.

I am completely and utterly sick of the World Diabetes Day messages that are scrolling through my screen. I am over looking at posters and diabetes empowerment messages and I cannot be bothered being involved in the activities that are all around me. I don’t want to talk about it – which is actually really unfortunate as I am giving a Grand Rounds talk at the Austin Hospital today about life with type 1 diabetes.

This morning I am hypo-fucked after dealing with a low that would not quit. This is the sort of low that mocks and teases and is just plain cruel. And when it finally passes, glimpses and flashbacks plague my mind for the coming days, reminding me how vulnerable and scared I feel.

I needed help to manage it – and I absolutely hate making my lows someone else’s problem. Eventually, after a jar of jelly snakes, raisin toast and two glasses of milk, my BGL started to resemble something respectful and I was able to change out of my sweat-soaked PJs. Despite being in something dry and under a warm doona, I was chilled to the bone and shivered for an hour before finally falling asleep.

Today, diabetes made me break a promise I’d made to my daughter – a walk to school with the puppy. But what made me feel even worse was the way she nodded her head in acceptance – and understanding – of why I was breaking the promise. I hate that diabetes is part of my daughter’s life because of me. I hate that she understands diabetes. I hate that she ‘gets it’ when I tell her that I can’t do something because of my stupid blood sugar.

Today I hate diabetes.

Today, I feel defeated. Today, I desperately want to not be living with this condition.

Yesterday, I took part in Diabetes Queensland’s WDD social media campaign that asks people to share what ‘type 1 diabetes for me is….’ (#T1D4MeIs). Here is what I came up with:

10676194_10152837799230789_7138623691002103065_n-1

Today, my poster would look a lot different. It would have just one word.

fear

Today I hate diabetes. I don’t feel empowered. I don’t feel ‘in control’. I just feel sad. And scared.

I’ve learnt many things at the diabetes conferences around the world I’ve been lucky enough to attend. One of those things is that Conference Hypo Syndrome (CHS) will get me every single time! (There may be no documented evidence that this is a real thing. But believe me. IT’S.REAL.)

The Melbourne Convention and Exhibition Centre is a huge venue – just like most similar conference facilities around the globe. As I rush between presentations, meetings, finding the speakers’ room and catching up with people for coffee, I inevitably run (okay, walk) what feels like the equivalent of a half-marathon. In heels.

Over the weekend, I went through some old photos from other conferences I’d attended. At just about each and every one of them, there is at least one photo of me downing juice, eating glucose tabs or throwing down jelly beans.

Last week at the ADS-ADEA conference I smugly thought I had it all worked out. On day one, I got up and straight away lowered my basal rate a little, as I anticipated a crazy day activity ahead. I had it spot on! Not a hypo to be seen for the whole day.

I even knowingly explained CHS to a colleague attending her first conference who was shocked at just how many times she’d gone low that day. ‘Of course!’ I told her. ‘You’ve been running around all day in between sessions.’ The next day, she lowered her basal rates which resulted in a much nicer day of BGLs.

On day two, I was presenting as part of a symposium at the rude time of 8.30am. I had it all planned. I would get up nice and early, alter my basal rates (this time with some consideration to the fact that I’d be running on adrenalin in the morning as I prepped for my talk) and then would re-adjust it after my talk. ‘I’ve got this CHS thing sorted’. I thought to myself.

Stupid, stupid, STUPID girl.

Actually, it probably would have all been clever and worked out perfectly had I not had a crashing hypo at 3am. Or the nosebleedingly-high rebound that woke me at 6am. By the time I got to the conference centre, my basal rate had indeed been adjusted – but to help with the post-hypo high to avoid me doing my presentation with what would feel like a pair of grubby sports socks in my mouth, and the need to run to the loo every two minutes.

With my presentation done, I was back in range. I thought about the day ahead – more running around the cavernous centre – and adjusted my basal rate accordingly.

I spent the next hour or so catching up with people; popping in to hear grabs of different sessions; traipsing around the Expo hall to check out the exhibitors and being interviewed by a news crew from Diabetes Educators Update.

After my interview, I realised I had hardly any recollection of what I said. I was assured by the interviewer that I had answered everything appropriately and confidently, but when someone asked me what I’d spoken about, I couldn’t really remember details. I checked my BGL and realised that CHS had struck again.

I spent the day catching hypo- and rebound-tails until I got home and managed to get things smoothed out.  I slept through the night, woke in range and set my basal rate for the day ahead. And was pretty much fine for the final day of the conference.

I’m presenting at another conference next week back at the Melbourne Convention Centre.  Fingers crossed that I wake on the day of my presentation after a restful night’s sleep, with an in-target BGL and can put my CHS cure into plan. Because I know that if diabetes behaves itself (ha!) then it works. It’s just when diabetes is being a little shit that it all goes rather pear-shaped!

 

I woke yesterday morning and it was a typical Sunday. The priority, as always, was a walk to the local café for that first cup of coffee and some breakfast. We all buzzed around getting ready to go and as I walked into the kitchen, I saw this…

overnight low 1

…and this…

overnight low 2

…and then remembered that I’d had a hypo overnight.

The splashback in our kitchen is purple tiles. I’m really not a fan. I despise purple – I think it’s tacky – and would much prefer something white and simple. To hide the purple-ness, I bought a Posca pen for us to use the tiles as a blank canvas to write notes, draw silly pictures, countdown to holidays and share things.

And apparently, I now use it as a hospital chart to document lows and what I consumed to get my BGLs back up.

Later in the day, I was scrolling through the photos on my phone and discovered that I had not only documented my BGLs and food intake, but I’d also taken photos of said food. Here you go:

overnight low3

I’ve no recollection of doing any of these things. I can only imagine what the neighbours would have thought if they’d spied me through the wall of windows at the back of our house shovelling down food and making notes on the wall. In my pyjamas. At 2.45am.

This is possibly the oddest behaviour ever for one of my lows. Obviously, given the quantity of food I consumed, I must have been feeling pretty shaky and desperate to feel that my BGLs were heading in the right direction. I woke yesterday morning without a hypo headache or the terribly high BGL that I would have expected as a result of so much food.

We got to our café and coffee and breakfast were consumed. Typical Sunday, with a weird little diabetes prelude.

 

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?

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.

1.13am – Heart thumping at what feels like 1,000,000 beats per minute

1.15am – 1.8mmol/l

1.15am – 10 jelly beans

1.20am – 1.8mmol/l

1.22am – 200ml pineapple juice

1.28am – 1.7mmol/l

1.28am – 10 jelly beans

1.28am – 1 pump’s basal rates reduced to -100% for 30 minutes

1.35am – 1.8mmol/l

1.39am – 1 piece of toast with 2 tablespoons of Nutella

1.45am – 1.8mmol/l

1.45am – 30 minutes under 2.0mmol/l

1.50am – 2 mandarins

1.55am – 1.9mmol/l

2.05am – 1.9mmol/l

2.05am – 5 jelly snakes

2.14am – 1.9mmol/l

2.15am – 60 minutes under 2.0mmol/l

2.15am – 200ml pineapple juice

2.29am – 2.0mmol/l

2.30am – 1 high 5 for hitting 2.0mmol/l

2.42am – 2.0mmol/l

2.55am – 2.0mmol/l

2.55am – 1 fridge raid resulting in 1 small tub peaches and 1 small tub yoghurt

3.13am – 1.8mmol/l

3.13am – awake dealing with this low for 120 minutes

3.13am – 5 very loud curse words beginning with f

3.15am – 20 jelly beans

3.22am – 2.3mmol/l

3.34am – 2.9mmol/l

3.48am – 3.2mmol/l

3.48am – first time in 2 hours and 33 minutes I’ve been above 3mmol/l

3.59am – 3.8mmol/l

3.59am – 1 deep sigh of relief

4.08am – start counting sheep. 1….2….3….4….

4.35am – 1 person with diabetes, wide awake, unable to sleep

Sometimes, it actually is all about numbers….

 

I’m a little worse for wear this morning. I’d like to say it is because I was being incredibly patriotic, had set my alarm and got up to watch the Socceroos play the Netherlands. Alas, it was a perfectly timed low that saw me tweeting this just as the game was kicking off:

photo

I thought that Jasper’s effort a few weeks ago when he woke me from a hypo was a one off thing. Not so much! Last night, he woke me twice.

The first time, I was dozing in and out of sleep when I felt something on my arm. There was Jasper, tapping me and watching me and straight away, I knew I was low. I got up and, as I often do so as not to wake the house, took my hypo and jellybeans into the front room. As I munched away, I checked to see what was going on in the Twitterverse. The latest tweet in my feed was from someone announcing the game was just starting, so I turned it the TV just in time to see the start. And then sent out a few tweets.

After I treated, because ‘treat before you tweet’.

I started watching the game, chatting on Twitter to some Aussie DOC-ers who were also up and watching. At some point, I fell asleep in front of the game. The next thing I knew, I felt Jasper’s paws again. I opened my eyes and registered that the game was 73 minutes in. I registered the score was 2-3 with the Socceroos down a goal. I then registered that I was low again.

In both cases my BGL was in the mid 3s. Jasper had woken me before the hypos turned too nasty. I think that in both cases, my BG was just getting to that level. The lows were easy to treat – both times responding quickly to the handful of jellybeans I threw down.

I’m tired this morning, but I don’t feel like I have a hypo hangover, which often follows after a particularly stubborn, persistent low. I don’t have a headache either. And I haven’t rebounded – possibly because I treated promptly and didn’t over-treat – a characteristic of many overnight hypos.

I’ve no idea what it is that is setting Jasper off. He’s 11 years old next month and it’s only in the last few months that this has happened. I don’t talk in my sleep when I am low and I don’t toss and turn any more than usual. But there is something that is alerting this gorgeous little puppy dog and he is responding by waking me.

Today, he will be rewarded with some doggy-treats. And extra hugs.

All in all, a rather uneventful, but tiring night. Pity about the final score.

Cuddle one this morning for the wonderdog(excuse the pjs).

First of many cuddles for today for the wonderdog (excuse my pjs).

Sometimes we all need a little Harry Potter magic to help with diabetes. Just try to avoid the earwax flavoured ones….

 

bertie botts

Sophia Loren is said to have once quipped ‘Everything you see, I owe to spaghetti’. Well today, the morning after a hypo that woke me at 3.15am and didn’t let me fall back asleep until after 6am, everything you see, I owe to coffee. I’m on number four.

 

I owe it to coffee

 

 

Have a great weekend! A reminder to check out the Diabetes Stigma Project and consider making a donation.

And for your Friday listening pleasure, here’s some Keith Jarrett with ‘Long As You Know You’re Living Yours’.

 

 

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