Dexcom CGM and I.

Just 'secured' my Dexcom continuous glucose monitoring sensor in place with Bear Brand masking tape. My set's positioned, this time, on my left upper abdomen. I alternate between left and right. My aim to to get 14 days' use from one 'sensor set'. I've been CGM-ing now for nearly a year. (Just in case you didn't know, sensors read interstitial blood glucose and they're injected just under the skin.)

Ideally I'd change sets when a session expires at 7 days cos the sticking tape starts to lift. However, these mothers cost $80 AUD each, non-refundable on NDSS - National Diabetes Supply Scheme - or medical insurance. (Given how indispensable these sets are, that's a pisser.)

I've been securing my sets with expensive Tegaderm skin preparation 'ovals', cutting two of these these into halves to secure the edges of the lifting tape which is supposed to hold the set in place. (This is difficult to describe, btw, given it's a 'specialist' topic.) But while Tegaderm sticks valiantly to skin it doesn't get much of a grip on the tape. Consequently the tape pops out from under the Tegaderm while I'm showering meaning I need a new set. I've been managing about ten days per set using Tegaderm to secure sets, fewer if I go swimming, which I rarely do.

Now I'm giving the cheaper masking tape a go. I've had a trial piece stuck on my sensitive inner forearm for the past 24 hours to see how it stood up to the rigours of domestic life and whether it caused skin irritation. Passed both tests. Had to give it quite a rip to remove it too. That bodes well.

Continuous glucose monitoring is expensive. However, I budget for it because, for me, it's brilliant. It has greatly reduced my hypo anxiety. Prior to CGM I would do finger prick blood glucose checks about ten times a day, including during the night. Couldn't even consider sleep unless my BG was above 6mmol. (When I was on injections, prior to insulin pumping, I couldn't settle if my BG was under 8mmol, and even then I'd wake every hour to check. That was bad.)

The CGM alarms if my BG drops below 5mmol. This wakes me given I'm a light sleeper, probably due to 33 years of living the diabetic dream.

Hypo anxiety has also disappeared from my teaching life. I'm now totally focused on what I'm supposed to be doing in class, rather than teaching in a state of subliminal panic, which tended to raise my BG but didn't stop me second-guessing whether or not I was hypo.

The knowledge that the CGM will alarm if my BG drops below 5mmol, or if it's dropping too quickly or if it's too high, has allowed me to live more normally, albeit with two different sets injected and plastered on my belly. Not a good look but at my age in my circumstances I'm past caring.

Meanwhile I hope that with Bear Brand masking tape in place I can get another seven days out of this sensor.

PostScript.

I wrote the above post pre-shower. The Bear Brand masking tape came off in the first wash. Ha ha.

Numbers.

5.48*

Peered closely at the digital clock simultaneously reaching for the 30 year old glass Moccona coffee jar that still contains my handy store of jelly beans.  I had that feeling.  Vague; light-headed; spacy; heart pounding.  I grabbed a handful, stuffed them into my mouth and started chewing as if my life depended on it.  Worried then that the chewing motion was further depleting what little glucose was in my blood, exacerbating the hypo.
 
2.3**

That was the reading on my blood glucose meter..  I'd checked my BG while still lying on my side ( - thanks, Accuchek Mobile, for inventing a meter that doesn't require me to mess with test strips.)  Al had already woken at the tell-tale sound of my jellybeans rattling in the jar. 

'I'll get you a juice,' he said.
'I may not be here when you get back,' I murmured, but he'd already darted off to the other end of the house. I thought I might lose consciousness, as in general anaesthetic black-out

I tried to relax; reduce the palpitations that had increased since I'd seen how low I was. I breathed through the fear of losing consciousness which has only happened three times in 31 years. 

Somehow the horror of that first time hasn't left me.  That was back in 1985.  We'd just flown to England; my first time dealing with the change in time zones with my relatively recently diagnosed diabetes.  I was on three injections a day - two fast-acting insulin and one fast-acting protaphane combo - and somehow the exhaustion of the trip had me waking out of a deep sleep and jamming a couple of complimentary hotel toffees into my mouth before passing out.

Props to Al.  He managed to call for help and get my 28 year old body into undies and tee-shirt before the ambulance arrived.  All while I was seizing.  Al says I was out to it for about twenty minutes.  I was conscious when they put me into the ambulance and took me to Emergency at London University hospital, where of course, I was discharged within an hour or so.  I didn't need an ambulance, I needed a shot of Glucagen.  But I didn't know that.  I didn't know that the n-th degree of a hypo was losing consciousness.  Just part of a steep learning curve on a lifetime journey.

I recovered quickly from that hypo, as I usually do.  It took a bit longer for the cuts on the palms of both hands to heal.  I used to have long nails back then.  While I'd been seizing I'd clenched my fists, my nails consequently digging into my palms.  I'd also bitten chunks out of the insides of my cheeks.  No doubt the mother of all cold sores that plagued me for the next six weeks was a result of that hypo fear too.

I didn't think all this today as I was breathing through that hypo, but I was mindful of the same pre-losing consciousness symptoms.  When my blood sugar is that low it seems to get me in the eyes.  Hard to describe.  They 'burr' and feel like they're turning in my skull.  It's a terrifying feeling, as if my eyes are being pressed with wads of cotton wool.  Why cotton wool?  It sounds so benign and fluffy.  Soft, thick pressure?  Feel like I'm back in France searching for the right words.  The other feeling that I get when I'm this low?  Imagine having your eyes pressed into your skull as you're pushed backwards off a cliff with no safety harness.

Then there's the heat and drenching perspiration and no energy to throw the doona off.

But I got over it. And this has only ever happened to me when I've been sleeping.  When I'm awake I test frequently to avoid being stricken unawares.

Glad today, as I frequently am, that I'm working part-time and today's a day off.  I struggled out of a deep sleep at 8.47. 

Damn you, digital clock.

BG 9.0

Thanks for reading.

* That's a.m.
**  Normal blood sugar ranges between 4 and 8 mmol.  Yeah.  I wish.

Dblog: Teaching an old dog new tricks

Started this day off, in bed, with three big mugs of tea and a cleansing sob.  Always have the tea when I'm not working.  Whatever I happen to be reading might prompt a few tears, but not usually the big weep.  Don't do the big weep often.  (When my kids were pre-schoolers, quickly learned that it was unproductive - that's a different story; the one where I sobbed on the vibrating washing machine, but when I'd finished I still had to be a mum and get on with it.)

Today's sobbing session came courtesy of a book, and too many 'light-globe' moments: Ginger Vieira's Your Diabetes Science Experiment.

I'm into my 31st year with Type 1 diabetes and I've muddled along, as one does.  I'm writing this with the proviso that I'm certain that all but one of my former endocrinologists have done their best for me.  When they've given instructions and prescriptions they've no doubt also been assessing my intellectual and emotional capacity to deal with the multifarious demands of my complicated and potentially fatal condition.  Furthermore, insulin is a relatively new medication.  The experts are still learning.  I get it.  I've seen many changes over the past 31 years.  Was testing my urine when first diagnosed in 1981. In a 1996 copy of Diabetes Conquest, the Australian Diabetes Association's quarterly journal, there's no mention of pumping insulin. My own heyday in the 1970s seems like the dark ages to teenagers I now teach.

Had a big cry four years ago.  I met a new endocrinologist who listened to my story and immediately suggested I try an insulin pump.  I had no idea that I could do more to control my 'brittle' - hate that word - condition.  Learning to use the pump I learned, for the first time, about insulin to carbohydrate ratios.  Sure, I'd been using an insulin to carb ratio, but I didn't know that!

This is what I knew. 

1.  Count carbs - lists were provided by a dietitian.  Breakfast: eat 30 grams of carb; morning snack: 10 grams; lunch 30 grams: afternoon snack: 10 grams; dinner: 30 grams; evening snack: 10 grams.  Of course I've varied this and have taken a guessed unit or two of insulin if I've been eating out and estimated that a bowl of pasta, a potato, rice, a bread roll, whatever, had more or fewer carbs.  I've also skipped all the savoury carbs to allow for a dessert. 

2.  Take insulin thus:  Early morning: 4 units quick acting; lunch 3 units quick acting; dinner: 6 - 10 units quick acting and about 20 units long acting insulin.  I had a rough algorithm to follow.  If blood sugar is high, take a bit more insulin, if it's low take less.

BTW, throw in my regular weekday 14 kilometre round trip cycling to and from work, my hectic life as a secondary school teacher, two pregnancies and subsequent demands of raising two kids 16 months apart in age.  During all this, I always tried to get it right. I carefully recorded blood sugar results and discussed these with my endo. (I can see him now flipping through my hand written record books.  For 25 years.)  But with all those variables I rarely got an A1c under 8. 

It's been a bit better on the pump, mid 7s.

This is the thing.  Ginger Vieira, with a background in sports nutrition, provides a formula for working out one's insulin to carb ratio.  Who knew??  Clearly, endocrinologists, diabetes educators and dietitians know this formula.  Why couldn't they have told me??  I'm not even going to try to explain it here, but it all makes so much sense.

And another thing: for 31 years, it seems, I've been going about exercise all wrong:  reducing my insulin dose and trying to keep my carbs low to keep my weight, which I struggle with, under control.  No wonder I started to feel ill on that 100 kilometre cycle in Vietnam when I'd only eaten a small baguette and a banana for breakfast and my blood sugar had crept up to about 15!! (And I had to keep going!)

Anyway, everything I'm writing here is just me venting - further to my cleansing sob.  It sounds vague and unscientific.  If you've got Type 1 and you're reading this, you're probably thinking I'm an idiot because you knew it already.  It's probably explained differently if you're diagnosed with Type 1 these days.  Or perhaps you, too, have an endo who's blaming your fluctuating blood sugars on your 'brittle' condition and leaving it there.

Me? I'm giving Ginger's advice a try.  Hopefully a young woman can teach this old dog a few new tricks.

Hunger Games and Highpoint

I've just been an extra on the set of the Capitol in the film of The Hunger Games!

Nah.  I'm lying. Though perhaps I was wearing a tad too much Mac Fix to fill the cracks - facial - and I do have this attention seeking menopausal ginger asymmetrical haircut.

But that's how it felt when I emerged from the excitement of the hunger games - bit more of a kick than all your reality TV thrown together - into the foyer of Hoyts, Highpoint.

The thing is I rarely go to the cinema.  I'm a bit of a hermit.  Usually wait for the latest film to come out on DVD then watch it in the comfort and privacy of my own home with my finger hovering over the pause button.  Wine, snacks and toilet breaks.  And I also avoid interacting with the general public.

But I had this need to see The Hunger Games on the big screen.  I feel a certain affinity with it, having feverishly read the trilogy a year ago and then encouraged heaps of students to read the books.  Of course, everyone's reading it now there's a block buster film happening.  But a couple of year 9 boys - my former students - have approached me while I've been on yard duty with their eyes shining to tell me how much they loved the film and how it did the book justice.

Anyway, it's the school holidays.  How to avoid throngs of unsupervised teenagers, some of whom I'll no doubt .know.

It was a no-brainer really.  Not many teenagers are going to be vying for seats at the 10 a.m. session.  So I got up this morning on a mission, and there I was at the box office at 9.50.

This is the other thing.  In all my years - heaps - I've never been to a cinema alone.

Anyone reading who has diabetes knows you have to plan for anything you do.  Didn't want to be caught with a hypo during the film without a support person.  Adjusted my basal rates to keep my blood sugar stable during the film.  Thought I'd be okay but I packed the usual supplies - jelly beans, juice box and torch.  Yeah, torch.  Bit hard to check your blood sugar in the dark on my meter.  Still, didn't fancy gripping the torch between my teeth while I pricked my finger and tried to put it on the spot.

So I was quite the adventurer this morning.  My reward was a near empty cinema and a mind-blowingly good adaptation of a great book.  Casting, sets, cinematography.  Nothing jarred.  Was almost tempted to get another ticket and watch it again.

I remained in the cinema throughout the credits and relished the experience of being the last person to leave; of having all that space to myself.  Walked out in time to the triumphant music, thinking I was Katniss, the heroine.

And then, with a full bladder, I staggered, dazzled, into Highpoint horror.  Teen-filled foyer; cacophony, sloping floors, ascending escalator, kids, parents, Timezone, burgers, shops, lights.  The carpeted floor seemed to be tilting as I set my expression to normal, whilst listing to my left and tripping over my own feet.  (I'd already checked my blood sugar, BTW.  No prob there.)

Walked as fast as I could - slow motion - in my catatonic state, all along the ground floor, up the spiral stairs and along to the 'bathroom' at the other end of the complex.  There, I toppled, somewhat hilariously - well, I laughed -  against a tiled wall while I waited for a free stall.

You know what?  Back for more next week I think.  On a day off, when the kids are back at school.

The Hunger Games, and my little foray into playing solitaire, the only game in town, was awesome.

Money for jam.

The receptionist can set the tone of the practice she works for. 

Last Thursday, at the endocrinology centre I attend, there was an angular, grey, fifty-five plus supercilious tone, with a brusque Hawthorn - refined, possibly British-Australian - accent.  The eyes, peering down through half-cut reading glasses, remained fixed on the computer screen.

Having announced my arrival, took a seat and waited.

It's my third visit with this particular endocrinologist.  She's tall, slim and fair.  Today she's wearing a black, back-zipped, flared pant teamed with a sleeve-less bolero style top over a black camisole.  There's plenty of time to observe all this as she leads me into the room, indicates that I should take a seat, sits and smiles at me.  White, long, somewhat prominent, good teeth.

She continues to smile, like she's really happy to see me, or she's not sure what should happen next.  I've encountered this before here and I'd already determined that I was not going to 'lead' the discussion.  Nor blather on to fill a somewhat awkward, albeit congenial silence.  (Don't you love these little mind games?)

I smile back, shrug, look beyond her narrow shoulders at the moody sky and rain spattered window, wondering if I'll get caught in the rain on my way home.

I tell her I haven't brought in any blood glucose data because I couldn't find the appropriate dongle.  (What's with that word anyway?)  Instead, I hand over my blood glucose meter and she busies herself backtracking through a few recent readings. Uh-hmm.  Silence.  No feedback.

"Which pump would you recommend?'  I interject, knowing the four year warranty on my Animas 2020 will expire soon.

"Medtronic," she says unequivocally, smiling and nodding.

"Any reason?" 

"I find it's easier to access the patient's data."  Still smiling.

"So it's about you rather than me," I say.  Because after four years I'm quite adept at interpreting my own data and I'm the one who has to live with it day by day.

"Oh, I think you'll also find they have the best after-sales support."  Smile.  Teeth.  Medtronic have really nobbled the consultants, I think.  Must be superior marketing.

"But Animas has been amazing.  I couldn't possibly have had better support."  I'm thinking of helpline calls I've made that have been 'life-saving' when I'm melting down; long chats with the young girl in Sydney,. herself on a pump; loan pumps when I'm overseas and a brand new pump, no questions asked, when mine failed.  Being Type 1 D and on a pump is practically part of the job description at Animas.

"Well, of course, it's up to you."  Still radiant smiles and then silence, which I'm determined not to fill.  We look at each other.  I can't stand it any longer.

"So, what was my last A1c?"  Which is really the only reason I'm here.  I can get scripts written at my local bulk-billing - that is, no payment - clinic.

"7.7."

The previous result was 7.8.

"Oh well, I'm heading in the right direction."  Given the stress and sickness I've endured for the past three months I'm thinking that's not too bad.

Quiet again.  I wait.  Bit awkward.  White walls, desk, bench, cupboard, scales, sink.

"Do you want to test my blood pressure?" I ask.  I know the drill.  She wraps the cuff around my arm, presses a button, but doesn't tell me the result, and I don't ask.  "My weight's been pretty stable," I add, which prompts her to suggest I get on the scales.  We both peer down at my feet before she returns to her seat and writes a note.  I already knew what I weighed. Apart from a few extra grams for clothes, my weight hadn't changed since that morning.  What am I doing here?

"Do you need any scripts?" she asks.  Hurrah.  She hands them over along with a pathology form for my next visit.

"Could you write me a medical certificate?  Had to take a day off work today."  Despite only working three days a week, I had to take the day off because she only consults privately one morning a week.  Fair enough.

"Okay, see you next time."

"Thanks!"

Back out into the ice-cold reception area and I'm not talking about the aircon.  I've been with the endo for ten minutes, tops.

"That's a hundred dollars for today, thanks," says Mrs Personality, lifting her eyebrows in my general direction and reaching for my credit card.  "Cheque, credit or savings?"

Think it's time to review my diabetes management options.  Any suggestions?

Living the dream. D-blog.

Think I blew my HbA1c result. 

I've written about this before, but every three months or so I have this blood test.  It measures how well I've controlled my hard-to-control diabetes for the past 12 weeks.

As I've said, I exercise, diet and adjust insulin doses accordingly to try to achieve the impossible - an HbA1c of 6, or under.  Don't think it's ever happened.  Since I've been pumping insulin it's been around the 7.5 mark.  Still, better than it was on MDI - multiple daily injections.

And there are all those variables - stress - thanks for losing the passports, Al - heat, cold, mood, and the WTF x-factor.  Beats me if I know what it is.

My last blog was about my tendency to catch whatever's thrown my way infection wise.  (If only I'd had such skill on the basketball court - with the ball, but.)

So this is me the other night, perched on the edge of my bed, first at about 1 am.  Checked blood glucose.  15.  Seemed to match the way I was feeling: sore throat, runny nose, headache.  Bolused it down.  That is, I entered 15 into my insulin pump, which calculated the dose of insulin needed to bring the blood sugar back to the normal range.  Pressed GO.  That done, had a couple of paracetamol and fell back onto my pillow.

2 am. Same deal.  Except now my BG was 15.5.  Jeeze, I'm really sick, I thought, bolusing again.

4 am.  I woke with a sore tummy and aching calves, for some unknown reason.  And thirst. And razor blades in the back of my throat.  Checked my BG:  20.5.  Fark.  Bolused again; about 4 units of insulin.

Drank some more water to quell raging thirst.  Visited the loo.  Whilst enthroned, feeling sick and knowing this high BG was going to throw out my upcoming HbA1c - yes, I actually thought about that at 4 in the morning (another stressor) - I thought to check my 'set' - the sticky patch where the cannula is inserted into me.

Well, where it should have been inserted.  The patch was secure on my hip, but the little bit of tube had somehow popped out.  I had no idea how long I'd been squirting insulin onto my nightie instead of under my skin.

So.  Changed the set.  Bolused 4.3 units, despite my pump telling me I already had this much 'insulin on board'.  Cuppa.  Read for a bit - Nick Earls, The Fix, love it - slept for a couple more hours.

BG 9 when I finally got up. 

Time to get on with the day?  Nah.  Too sick.

Christmas Cheer.

For some unknown reason, we had our Xmas breakup at the local lawn bowling club - the last bastion of the White Anglo-Saxon Protestant and/or Catholic at leisure, maybe. No idea what to expect, apart from the stereotype of the elderly Aussie lawn bowlers' hangout.

Signed in - Fraudster, C/- The Windsor, Melbourne.  My nostrils were assailed by something foisty, faintly mothbally, and something else; essence of je ne sais quoi.

'Don't like the smell.' Fraudster curls lip, sneers a bit.  'Smells of old.' I'm sitting there at noon on Thursday before Christmas, kitted up to out-do a Christmas tree.
'Quite like it,' says Work Husband, guarding his pot of beer.  'Reminds me of my great-grandfather's house.'

The rest of the staff arrive.

'Don't forget to sign in.'

We sit in a bar around capacious ten-seater Formica topped round tables.  As people make their way across the enormous wooden dance floor, some of them trying out a few tap steps along the way, their faces, too, take on that look of searching for the source of the odour.

The brick bowling club dates from late 'fifties or early 'sixties.

'Perhaps someone could pop back to school to get some music,' a teacher suggests, given the echoey bleakness of this old people's place, bedecked with pennants from bowling comps past.  But that wasn't to be.

'We're here for a spit roast.  You can bowl later if you want to.'  That's our officious, put upon staff association leader, who'd organised the venue and catering..  (A coup was mooted by some of the young things last year, but ultimately no one either cared that much come the new year.  Or dared.)

I sipped my 100 ml of Chateau Cardboard wine and tried, unsuccessfully, to savour the ambience, like waiting for a game of bingo to commence.

We lined up like refugees for our 'meals'.  It was the usual spit roast fare, or what was left of it by the time I got up there, not being one to enjoy queuing for fifteen minutes in a pair of, for me, moderately high heels.  It was nutritious, I suppose.  The beef end was quite tender.  I don't eat much.

Then the floor show:

An aussie gent, sixty-something, Ted, in washed out striped polo shirt and shorts, unceremoniously held up a used Bandaid - sticking plaster.  'If any lady's lost the Bandaid off of her nipple, I've got it here.'  Embarrassed laughter ensued briefly.  Is that what the old 'ladies' do to prevent high-beams penetrating their bowling shirts?

Unabashed by lack of appreciation for his jest, Ted held up the wire stopper from a bottle of champagne.

'How long's this wire?' he shouted.

'What do you mean?' called one of my colleagues.

Ted frowned, a bit put out.  He spelled it out for the idiot.

'If you unravel this wire, how long is it?' Jeez, dumb teachers or what?

'Why?' called another temeritous soul.

Finally he explained that it wasn't a trick question, but a competition.  Ah!  The correct guess would win a bottle of wine.  Next question:

'How many hankies high is a horse?'  Huh?

'Men's or ladies'?' called a female teacher, getting into the spirit of it.  He reached behind the bar and produced an ironed, folded men's handkerchief.  Ostentatiously, he shook it out, grabbed it by two diagonally opposed corners and held it up for his captive audience.  Can't remember the answer.  I'd downed three 'cardies' by that stage.

I approached the bar.  Ted was the barman now, floorshow being over.

'Diet coke, please?'

'You don't look like you need a diet coke,' He narrowed his eyes; leered at me. Perhaps I only imagined him licking his already wet lips.  Wink.

'Ahahah!'  Hilarious. 'Thanks, but I'd like one anyway.'

'But you don't need it!'  He cast a raunchy eye over me, grinning lasciviously.

'Oh!  Ha ha ha, too kind.'  I tittered  'Can I have a diet coke, please?'

'You don't need one, love.'  Same deal.

'Look, I actually have diabetes.  Can I please have a diet coke?'

At that he changed tack; beckoned me along the bar, away from the others waiting for drinks.

Here we go, I thought.  Wants to share his own diabetic trials, or those of his dead grandmother.  Go with it.

Rictus smile on my face, I indulged him.  He waved me closer, the better to hear his confidence.  Okay.

With one elbow on the bar, grinning, catching me in an eye-lock, he recited some doggerel.  For about two and a half minutes.  A long time for me to smile and occasionally shrug politely, to feign interest.  Wasn't really focused, given 300 ml of chardy, that early in the day.  But the protagonist of the poem, a dog, was 'piddling' here, there and everywhere.  Meanwhile, a heavily made up, coiffed bowling club lady, ceased polishing the bar, to lend a delighted ear.

The rhyming punchline of his recitation, which he'd waited perhaps forty-five years to deliver?  'That dog's got diabetes!'

Unbe-fucking-lievable.

'Can I have my diet coke now?'

'No, you can't.  We've only got Pepsi Max,' he said, grinning like an imbecile, pleased as punch.

Merry Christmas.

That piece of doggerel?  The piddlin' pup.

Diabetes Pity Party Over

Bit hung over from the Diabetes Pity Party.  Should never have gone there.  Shouldn’t have indulged.  It’s too addictive.  Like alcohol - well, middle range chardonnay* - diabetes could control my whole life.

Used to regularly visit, and comment on, www.diabetesforums.com.  It was hugely supportive when I first started pumping insulin and needed some insight from other pumpers.  But it became repetitious; tedious.  Hundreds – probably thousands – of PWDs banging on about diabetes in its various forms. 

I’m sick of reading and thinking about diabetes.  It’s enough having to live with it.  But I’m caught in a bind.  On one hand, I’d like to ‘unfollow’ all those diabetes Tweets/Twitterers/bloggers (whatever!) because they make me focus more on all that stuff.  On the other hand, there are some brilliant people blogging/vlogging very effectively about diabetes.  The social media thing has allowed me to correspond with some of them.  Communicating with like-minded people is a massive part of why I write.

And another thing.  My brief dip into the Diabetes On-line Community seems to have revealed a strange correlation between PWDs and Christianity.  As a born again atheist, this really gets up my wick.  I won’t go into that one.  Enough there for a whole conference.

So I’m going to cull a few people on Twitter today.  I don’t need extra crap – albeit about diabetes – to read.  Get enough of that from my less able students of English.

Time to get the diabetes cart back behind the horse.

Can feel my hang-over lifting already.

*  Confession:  I'll drink cheap chardonnay.  In fact for want of something better, I've imbibed that awful 'Dalat White' when travelling in Vietnam.

Diabetes Makes Me Cry

 A former endocrinologist – the ‘brilliant young doctor’ who cared for the diabetic part of me for 25 years – wrote a letter to my GP explaining that he was giving up his small private practice.  In the letter he said that working with me had given him an insight into the ‘psychological burden of living with diabetes’.

It’s the emotional side of diabetes that’s so hard.  Because it just doesn’t go away.  And it gets worse.  (Hello, burgeoning retinopathy!) A relentless journey.

Here’s my tilt at Diabetes Awareness for the second Blue Friday.

Yesterday morning, I was sitting on a wooden ‘park bench’ in the foyer of the building where I’d just had my three monthly visit with my endocrinologist.  I needed to take a minute. to recover.

My bike pannier bag was beside me – I’d cycled the eight k into town.  I got my phone out and called my husband.  I told him my HbA1c was creeping up – 7.8 for those in the know.  I lost control of my chin, lips and voice at that stage and a few tears leaked out.  (The HbA1c ideally should be under 7 to avoid 'complications' - retinopathy - blindness, kidney and heart disease, neuropathy, and the rest.)

Trying to control this bastard condition is nigh on impossible, despite my best efforts.

A week prior to this appointment, I’d attended the local pathology centre for a fasting blood test.  ‘Small sting now,’ said the nurse, as usual, before digging into the vein on my left arm.  Easy to say.  Those injections inevitably hurt, but they’re usually quick.

I go through this process – the blood test followed by the endo appointment, where I find out whether I’ve been a ‘good enough’ PWD – person with diabetes - every three or four months.

Too easy.

But my blood result – my HbA1c - is too high.  My endo is sympathetic and we’ve worked out some sort of ‘action plan’ which I won’t bore you with.

This is the thing.  Diabetes is my ‘dark passenger’ – apologies to Jeff Lindsay of Dexter fame.  I try to hide it when I’m going about my daily business, trying to pretend I’m normal and as capable as the next person.  But it affects everything.  I rarely sleep for more than a couple of hours at a time for fear of  hypos – when my blood sugar drops to dangerously low levels.  Have to wake up and test my blood sugar to be sure.  Every morning begins with a finger prick test so I can feed the data into my pump – that little genius – and it can calculate my insulin needs so I can infuse the right amount into my body – through a cannula that’s inserted into some part of my ‘trunk’.  (Gets rotated/reinserted every three or four days.  Fun.)

Any carbohydrates eaten must be accounted for and balanced against the amount of insulin taken.  The pump calculates it all, with a bit of input from me.

If I’m cycling to work – 7 undulating kilometres – I have to factor that in, too.  Which in these happy insulin pumping days means reducing, for ninety minutes, the rate at which insulin is delivered.  I pedal hard up those hills, but I usually have to stop mid-ride, to check my blood sugar again.  I struggle to get those numbers right.  If it’s too low I have to stop; eat some glucose; drink some juice.  If it’s too high, well, I’m laughing because I can pedal flat out for the rest of the ride. 

You know, I’d really love to just take off on my bike and just enjoy the ride, without having to prepare for it and monitor it.

So, finger pricks.  About ten a day.  Fewer on my days off when I don’t teach.  Wouldn’t want to have a hypo when I’m in front of a class of 25 teenagers, most of whom are ready to pounce on any vulnerability.  And the pump?  It’s doing its stuff 24/7.

As a PWD – Type 1 – I can never be spontaneous without serious risk to my health.

A few of my stats:

I’ve been cycling for about 50 years.  I’ve been a secondary English teacher for 32 years.  I’ve been in a relationship with my husband for 32 years.  My son is 25 and my daughter is 23.  I’ve had Type 1 diabetes for nearly 31 years. 

Can’t seem to shake it off.

And BTW, I'll be glad when Diabetes Awareness Month is over.  Cos I'm sick of thinking even more about it.

Blue Fridays

Blue Fridays in November is about diabetes advocacy.

I’m supposed to wear blue every Friday in November and advocate about diabetes.  The thought doesn’t thrill me. 

There was no Diabetes On-line Community – DOC – when I was diagnosed in 1981.  There was no line to get on. 

Back then, I was admitted to a hospital in country Victoria, where I’d failed the glucose tolerance test, taken during a family holiday.  I slumped soon after that hit of glucose and was carried, by a doctor, to a hospital bed.  I raged for a bit; had a cry for a couple of hours.  But I responded well to a single shot of insulin.  By the time my family arrived that evening to hold a vigil at my bedside, I was cracking jokes about being able to eat as much powdered mustard as I liked because it was ‘free’, according to a pamphlet I’d been given.  Carb-free, for those not in the know about just one of the elements involved in managing diabetes.

Spent the following week in an eight bed very public ward at the Royal Melbourne Hospital.  Successfully injected myself on the first attempt.  Surprised by how easy and pain-free it was, despite my former horror of injections.  

Each morning, for the rest of my life, it was emphasised, I would require a single injection of a mix of long and short-acting insulin.  I’d inject myself, after I’d gauged my blood sugar level. 

Like this:  first thing in the morning.  Empty bladder.  Ten minutes later, catch the next bit of pee in a jug.  In a test tube, using a dropper, mix six drops of this urine with six drops of water.  Drop a tablet into it.  The cocktail fizzes.  Check cocktail’s colour against a chart.  Thus see how many ‘pluses’ of glucose are in one’s pee - how sugary it is.  Take more or less insulin accordingly.  (How primitive!)

Had to do the same thing in the evening, at six o’ clock.  Carried my little chemistry set around with me.  Often did this procedure in the ‘ladies’ at the local pub on a Friday after school.  What larks.

And the other thing was that I had to eat by certain times, because on only one injection a day I had to eat when my insulin ‘peaked’ in its action, otherwise I'd have a hypoglycaemic reaction.  Low blood sugar.  Bad.  (And they are!) This had all been explained to me during that steep learning curve week in hospital.  I’d also been given a crash course in carb counting by a dietician who drummed into me the nexus between carb counting and good blood sugar control.

Back then there was no nutritional information on foods.  The only sugar free soft drink was Tab Cola.  Gold Crest manufactured a ‘diabetic’ range of cordials.

I was discharged from hospital with a supply of syringes, insulin and testing gear.  It didn’t last long.  We didn’t have a National Diabetes Supply Scheme back then.  I tried to buy syringes in a pharmacy across the road from my school and I think the pharmacist called the police!  I found out from the local diabetes association that there was a 'diabetic friendly' pharmacy in the city where one could buy one’s supplies without suspicion.  Syringes weren’t cheap either.

There was a sort of ‘tourist excitement’ to all this which turned into ‘culture shock’ after about three weeks.  It was a hell that I endured for a year, at the end of which I was wraith thin and constantly sick with a variety of ailments that thrive on excess glucose in one’s system.

And then I found a brilliant young doctor who was into multiple daily injections and ‘home glucose monitoring’.  Lucky for me.

That was thirty years ago.

It’s my day off today.  I’m wearing a blue-grey tee-shirt and blue jeans.  Quite sure I won’t be telling people about diabetes today, other than through this blog, which perhaps five people will read.

We’re not supposed to talk about people ‘suffering’ from diabetes.  But you know what?  I have suffered.  And apart from battling with this condition on a daily basis, I’ve had to suffer people’s ignorance and insufferable, almost prurient curiosity about it.

Tip:  when you meet someone with Type 1 diabetes, don’t ask them if they should be eating whatever it is they’re about to eat.  And don’t tell them about your grandfather, or other close friend, who died of diabetes.  We don’t want to know.

Could go on, but no one likes a long blog.  If you’ve read this far, cheers.