Firstly, I must confess that my BGL is currently a tad low and the jelly beans are still doing their job, so I’ll be a little bit rambley.
My post yesterday, about social media groups being a cesspit of opinionated zealots, and not very fair or helpful to people newly diagnosed with T1D, has led me to finally realise that the olde worlde that I refer to often, is just that; a memory that appears gone forever. I copied my story yesterday to an online forum that, without naming them, you would expect of all online groups on the whole planet, they would be the ones to have the wellbeing of people newly diagnosed with T1D at the front of mind. And yet even they failed to get the point I was trying to make. So now I’m left with no option than to accept that the new world is here and nothing is going to change that.
In the new world, it appears, the idea of people being taught the fundamentals of their condition – people in the USA consistently refer to it as a “disease” – seems to have been banished to the history books. It seems that the expectation today is that newly diagnosed people are going to take on the technology that is now available, so far that’s a good thing, but therefor NOT be educated in the basic understanding of things so simple as grams of carbohydrate contained in different types of food. I mean for me, coming from the education I was given during my diagnosis period all those years ago, such a simple piece of knowledge is fundamental in the ongoing, life-long management of T1D. Yet newly diagnosed people are not taught this. They are taught labels such as Low GI and Low Carb, but not something as simple as an apple contains 10 grams of carbohydrate.
And judging by the responses I have received, which includes from at least one person who has lived with T1D longer than me, this situation seems not only acceptable, but just-the-way-it-is now. That leaves me flabbergasted. From day #1 of my diagnosis I have been taught that cakes and sweets and chocolate milkshakes are to be avoided, unless you’re having a hypo, fruit and vegetables are good but need to be measured (an apple, a banana, 2 scoops of mashed potato etc), and meat and cheese is “eat as much as you like”.
I took that knowledge with me across The Sahara when I did my walk all those years ago. I’ve never bothered telling anyone that I didn’t even own a BGL testing machine when I did that. I didn’t get that until about 6 years ago. But my knowledge of how to balance the 3 variables – insulin / food / exercise – was what enabled me to do the 2 years and 5000km of training and attempt that walk. BTW, the only reason I didn’t complete the event was because of cramps caused by a condition I’d never heard of until later – hypokalaemia. Not finishing had nothing to do with T1D.
And yet in the modern world, the knowledge that enabled me to walk 5000km in training, then 3 days walking across The Sahara in 50C heat isn’t even attempted to be given to the newly diagnosed.
With this new knowledge I have no options left but to just shake my head and commit myself to the next 20 or 30 years just wondering how the modern world took such an unfortunate turn for the lesser.
I don’t have any answers.