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.
Well this absolutely sums up some of the hardest parts of life with this disease. I love your honesty. It's true, why do we want to think about diabetes for an entire month on top of already thinking about it incessantly every other day of the year!?
ReplyDeleteKeep cycling, baby! You can do this.
I'm impressed you've managed things as well as you have and have found ways to keep doing much of what you enjoy. Having your own body mess with you, especially when you do everything you're supposed to, is disheartening.
ReplyDeleteWhat doesn't kill you makes you stronger. Excuse the cliche. And thanks for your comments. Really appreciate feedback.
ReplyDeleteCheers. Fraudster.
Fraudy- even tho I'm following haven't been getting these posts; must be receiving them at the old defunct blog. Anyway, this does give me insight into what it must be like.
ReplyDeleteAt least you look at yourself though, and the cycling must great for keeping you fit and active. At least you've raised our awareness.