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.
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.