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.