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.

Mae West, Mum and Me

Visited a friend the other day; a new mum.  She’s called her beautiful daughter Mae.  This isn’t about my friend or her daughter.  This is about me and my aged parents.

My parents live a ninety minute drive from me, so I don’t see them as often as I’d like.  In hindsight, pity that fifteen years ago, they sold the house, five minutes from where I now teach, to make a sea change.  Was a good move for them, back then, when they were in their sixties.  Now that they’re elderly, and my dad ailing, they’re a bit far away.

Nonetheless, most days I call my mum to keep up with the minutiae of her days and to keep us both in each other’s loops.  This is the thing:  despite being brilliant, hilarious and the very archetype of what a mother should be, age is taking its toll and my mum’s memory is going a bit.  Which led to this.

“Visited my friend and her new baby this arvo,” I said.  Minutiae, as I’ve already said.  The stuff of conversation.

“Oh, lovely!  What did she have?”  Mum sounds genuinely pleased with the news of a former colleague of mine, someone she has only heard of in passing.

“A girl.”

“Lovely!  And what has she called her?”

“Mae,” I say.

“May?”  Mum sounds incredulous, for some reason.  She raises her voice to enunciate her thoughts more clearly.  “May?” she repeats.  “M-A-Y?”  She spells it out, in case you hadn’t worked that out from how I’d written it.

“No, mum.  M-A-E.  As in Mae West.”

“Mae West?  What Mae West?”  She sounds puzzled as if I’m deliberately trying to trick her by throwing some gobbledegook into the conversation.  “Mae West?  I don’t know anything about Mae West.”

“Of course you do, Mum.  Mae West, the film star.”  Why am I explaining?

“I’ve never heard of her.  Must have been before my time, “ says mum.  And why don’t I let it go there?

“She was a sexy platinum blonde.  She said ‘Come up and see my some time, big boy’.”  I do my best Mae West impersonation.  “And ‘Is that a pistol in your pants or are you just happy to see me?’”

“Never heard of her.”  Mum is dismissive.  If she hasn't heard of Mae West, I must have invented her.

“Mum, she was as famous as Marilyn Monroe.  Of course you remember her.”

“I know Marilyn Monroe.  But I’ve never heard of Mae West.  Dad!  Dad!” She invites my dad - never calls him by name - into the conversation.  “Dad, do I know Mae West?’

“Lusty Busty,”  pronounces my dad in his profound bass voice with its Yorkshire accent.  He'll be sitting in his chair, his walking frame to one side, a glass of red on the table beside him.

Laugh at my dad.  He does the memory for both of them these days.  My mum’s as fit as a trout and we laugh about the fact that for the first time in her life, she is, due to memory loss, living in the minute, like everyone says you’re supposed to do all your life.  My dad’s still good on the one-liners, but it takes him all his time to get around and his fine motor skills – dental technician, talented musician, carpenter, a man who could repair anything – have gone.  And now I’ve made myself cry.

Better give my mum a call.  I’ll tell her it’s Mae West

Night Flight

Interesting flight to Darwin last night.

I'd been randomly allocated a window seat. After I'd herded onto the plane and found it, a couple about my age, fifty plus, were in the process of appropriating the window seat to store a large flat framed, bubble wrapped piece. Suppose they couldn't believe their luck on a packed flight. Seemed a tad miffed, I thought, to relinquish the floorspace they'd used and stow the item in the overhead locker. The woman - thin lips, tan leather jacket, skinny jeans, menopausal black dyed concave bob - had removed her knee high boots. In black socked feet, she unfurled herself, distractedly stood, and slotted her piece in the locker. Oddly, she ignored me and sat down again.

"Perhaps you'd like to move over?" I inquired politely, thinking they could both just shift over one.
"No, I'm staying right here, thank you very much!" 

Bit aggro. Think she thought I was going to boot her out of her allocated seat.  She was shaking her head, glaring at something indeterminate. Her partner, a grey loose-jowled man, chin sunk on his chest, just stared at the seat ahead. Perhaps he was jammed in. Thin-lips was determinedly having that aisle seat. I didn't care except I'd had a soaring blood sugar all day, probably a rebound from my near-death gastro in the previous 36 hours. Now I was dying of thirst - a diabetic thing - and knew I'd need a pee at some time during the flight.

"Well, I'll have to climb over you." I was sing-song, smiling, indulging a couple of children.

At this, something clicked and they clambered out. Bit of a struggle for him, clinging to the seat in front and shuffling sideways.

"And you'll have to forgive me climbing over you during the night," I belled, beaming, shuffling into my seat. "Old bladder, ha ha."

During the night? Who was I kidding? I thought, sitting heavily on my crossed seat-belt before wresting it out.  It was 3 a.m.

Amazing how much urine one's bladder can hold, in extremis, despite considerable discomfort. Once in, I could not get out. Had there been an emergency, perhaps a crash, with assistance from flight attendants, the blob next to me could perhaps have been induced  to prise himself out. He reeked of a few too many at the bar prior to take-off.  He was in an inert Can't Be Fucked, alcohol induced torpor.

Glad I'd relieved myself of those last few drops back at the airport toilets.

The armrest between me and my companion was raised and he'd taken the opportunity to ease himself about a quarter onto my seat.  Hmm. What to do?

"Would you like the armrest down?" I carolled, clicking it into position under a roll of his flesh.  He rested his arm over it, as one does, and I was okay.  Still had one completely to myself on the window side.

Beyond him Thin-lips had assumed the position: facing her husband, legs drawn up towards her chest.  Quite flexy, I thought.

Blob inclined himself towards her, in so doing, resting his back fat right over my arm.

I was irate, and perhaps more irrational than usual. It was 3.45 a.m.  I'd had no sleep since 9.30 the previous a.m., and prior to that I'd been on a drip in the ER for five hours following 18 hours of explosive gastro.

I swore under my breath.  That achieving nothing, I whimpered for an instant, pinioned as I was between back fat and the aeroplane wall.  Hmm.  What to do?

Tapped him on the arm.  He blinked awake and slowly turned to gawp at me.

"Excuse me?  Is she your wife?"  No more sing-song.  Assertive now, I nodded towards Thin-lips.

He registered the question; cogs creaking round.

"Yes."

"Well, would you mind leaning on her instead of me?  These days I don't even let my husband get this close."

He gawped some more, bemused perhaps.  Maybe he thought he was having an alcohol induced dream.  At this stage, ready for sleep or what passes for it on a plane, I'd pulled my orange hood up over my head, my bespectacled 55 year old face was peering at him, and around my neck I had, due to air pressure, an over-inflated blue neck support pillow.  He obeyed anyway.

Unfortunately, when he dropped into deeper sleep it was no holds barred.  He rolled over 'in bed' onto me, to mouth-breathe into my face.

Confession:  I can't even bear this with my old man and consequently we sleep, in our queen bed, in our little compartments, our heads separated by a pillow (affectionately known as 'the barrier') standing on its side.

Drunk, Blob was comatose.  I pulled my hood around my face, cleaved to what remained of my $300 seat and the side of the plane and prayed for a swift flight.

Me at Highpoint.

I'm in the changing room in Target, Highpoint - I've hit the fashion heights, clearly.  There's a discarded coat-hanger on the bench and a used  tissue on the floor.

I've stripped down  to my socks and undies on the bottom.  I'm keeping my top pulled securely down over my trunk lest my abdomen escape from the top of my knickers.  I don't want to see it.  I've selected five pairs of pants to try on.  It's an interesting exercise being in one of those rooms with the reveal-all mirrors.  I try to avoid looking at myself above my hip line.  Muffin tops would be putting it politely.  Think I've got the opposite of body dysmorphia.  I go about my life thinking I look okay, and then I see the reality in Target when I'm trying to have a nice shop.

One by one I struggle into these enormous pants - my size - and one by one I drop them into a heap on the floor.  The pants look crap but I quite like my asymmetrical haircut. Haven't seen it from this angle before,  Not bad at all.  It compensates a little for the disappointing elephant-crutch duds.  I've worked up a sweat at this stage and check my blood glucose in case I'm having a hypo rather than a menopausal flush.  I'm okay, but I've had enough of Target.

I abandon the trouser shopping.  After all, I'm supposed to be buying a present for my old man's birthday.

I'm in Big W next, opportunistically buying a bra.  Well, they've got my style and size.  This presents a problem though.  I want to browse the rest of the store but I'm not carrying a shopping basket so I must carry this enormous black bra with its massive moulded d-cups.  Try to tuck it inconspicuously under my bag but to no avail.  This bra has a life of its own.  If it had wheels I could have ridden around in it.

Run the gauntlet of Level 3 - yes, madam is having a nice day, but no, she's not interested in boxing lessons, nor organic cosmetics - and decide to buy a USB from Dick Smith.

Next stop, Just Jeans.  Really must get something for the old man.  The alarm goes off as I try to enter the store.  I fling out my arms, as one does, as the assistant rushes over to accost me.  I rifle through my bag.  The USB is the culprit.  I'm asked for the receipt, which I proffer.  Good to know they're all looking out for each other at Highpoint.  Nothing to see here, I think, given a small crowd has gathered behind me to gawk as we swing various items through the sensor.  They're rewarded with a viewing of my incredible living bra.  The shop assistant kindly peels off the metal label from the packaging of the USB and I'm in.

Now I'm having another hotflush/hypo special combo.  Surreptitiously check my blood sugar again before resuming my jeans shopping.  All good.

Despite my earlier trouser disappointment I'm tempted by the two pairs for $100 offer.  Pair for me and a pair for the old man.  He's easy to buy for.  Thirty-four inch waist.  He works out; has hardly changed shape in 32 years.  I have a moment of euphoria in the changing room when I find a pair of jeans that fit - albeit below the muffin top line.

So I pay for the jeans and head for the exit and WTF?  I'm bleeping again.  The assistant rushes over and now the d-cups are once again being passed back and forth through the sensor.  That's what you get for being environmentally friendly and bringing your own carry bag.  But once again, it's the USB.  The shop assistant obliges with a pair of scissors and liberates the USB from its attention seeking plastic packaging and sod the guy in Dick Smith who didn't de-magnetise it, or whatever he was supposed to do.

Back for more tomorrow.  The old man's pants didn't fit.

Brief update on daughter, Didi.

It's my niece's birthday lunch today; a chance to catch up with the young relatives. 

The venue is about three k away so the old man and I plan to cycle there, rather than have to worry about driving and the rest.

Daughter has been living away from home now for about six weeks.  It's all good.  Can't be bothered detailing it at this point, given I've got about five minutes to spend writing.

Surprised to get this text message from my daughter, who lives about four k away in the other direction from the venue.

"I don't want to drive.  How will I get there? K [housemate] isn't home.  [Presumably Didi would have cadged a lift.]  Could dad maybe drop me off at Sydney Rd then go home and get his bike? Or can T [brother] drive me?"

Well, dad isn't up for a ten k round trip at this stage on a Saturday, sorry Didi.  Catch a tram.

She's still our baby girl.