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.
That definitely sounds sob-inducing! A friend of mine is a type 1 diabetic, diagnosed in primary school AFTER the teachers made her resign from her house captain position because they said she wasn't trying on the morning runs around the school (and after she collapsed at the sports). She insisted on a public re-instatement, at the tender age of 11-ish! I went to her dad's funeral last week (only 67); he too was a type 1, and I'm guessing he saw some incredibly archaic approaches in his younger days. Nonetheless, when we try to do things 'right'and we find out that we just weren't told things that could have been making a big difference, a big sob would be my response too. I'm going to send my diabetic friends a link to the Ginger Veira thingy, in case they don't have it (a couple of years ago 2/5 in my office were - one developed Type 1 aged 45.Pffft.) So, thanks for putting it out there. :)
ReplyDeleteThanks for your response. Hope it works. For me, cos I'm under 4 weeks shy of another cycling trip in Europe. For your friend, just because.
DeleteThe good thing: I've never let Type ! stop me doing anything. And happily I never craved the sky-diving thing - unlike your mate, Nancy!
Cheers.
I have to get a copy of this book! And you are not alone with archaic thinking doctors, and their un-helpfulness.
ReplyDeleteI was taking 1 shot a day for 27 years. Not even counting carbs, using the old exchange system, when it suited me. Then i moved on to 4shots a day and a sliding scale, carb counting regime, 10 years ago. Now I pump and am in the best control (i hate that word!) i've ever had. But....there are still some things to learn. I gotta get a copy of that book! Chapters here i come!