Too Much Or Not Enough

I'm a very vocal advocate of individuality in diabetes. I've certainly used the "YDMV" (Your Diabetes May Vary) acronym many times during discussion and when expressing a view. Type 1 Diabetes is often viewed as simply injecting or pumping insulin to manage consumed carbohydrates and I'm fine with that. I think if you don't have T1D, live with a diabetic or work in the world of diabetes then why would you know much more? It's not wrong, of course, but it doesn't really cover more than the very basics.

Inside of our world (assuming you live with T1D, live with a diabetic, work in diabetes, etc) you probably realise that it's so much more than carbs and Banting Juice. All the decisions that we make are well documented and there are likely lots more that differ from person to person. You might have your own unique decisions to make in regards to your diabetes because you're an individual, living your own life and managing your own diabetes. Diabetes mirrors life in various ways and certainly, for me, the differences between person to person is one of those ways.

I think I've stated the obvious and I'll get to my point and what the title of this blog means!

I've recently mentored a few of my peers in regards to their T1D, you may have read about some of that on the Twitter. The vast differences between those people and the hundreds of other peers who I've engaged with is apparent but one thing which crops up frequently is some of the advice given by HCPs - advice which I'm struggling to understand and it looks a little something like this:

"You're scanning your Libre too much"

 "You're not finger pricking enough"

"You don't need to check your CGM that often"

Those three pieces of advice might be right, of course. My own experience is based upon the "too much scanning" advice. It was likely well meaning! I had complained about injection burnout which may have been confused with general burnout. A high number of sensor scans may have raised a red flag and well meaning advice followed. It was the wrong advice because, for me, I wasn't scanning too much. Why? I live my life in my way as an individual. Scanning a sensor, when your phone is often in your hand due to work and other commitments, was not tasking me or burning me out. Perhaps if I was working 10 hours a day as a taxi driver or heart surgeon then the same number of scans would be difficult or even impossible and noteworthy as a cause of burnout. 

"You're scanning too much" doesn't take into account me as a person with my own life. It compares me to others and even the HCP's life experience and what they believe to be the right amount. I stated why I scan as often as I do and why it's not a problem and we moved on. I don't fear speaking up during a consultation but I do know that others have issues in that setting and they feel anxious about doing anything unless they're nodding in agreement with an HCP.

"You seem to be scanning your Libre a lot. Is that causing you any problems?" might be a better way to address that red flag. But who am I to talk about communication!? *wink*

The same could be said for the other two pieces of advice, above. To notice something a little unusual is right and great care and it should be questioned but never judged or followed with a sweeping statement. "Too much" might be just right, "not enough" might be just right. Great care considers individuality and works with that. Ask questions, talk to your patient, get more information.

The above three pieces of advice might seem innocuous and to some that might be right, to others it might pile pressure on to an already over-spilling plate of decisions and burden and stress. That's why I'm very vocal about HCPs treating us as individuals in every respect and why it makes great sense to treat each other in the same way.  

 As you might have seen, a conflict has broken out in Ukraine as Russia has invaded that country. The scenes on TV and on social media are horrifying. What can we do? Well, I don't think there is a wrong way to help if you donate to charities who are active in helping the people of Ukraine. I support many charities but one which has always had my heart is MSF. Medecins Sans Frontieres translates as Doctors Without Borders. When it comes to the health of others in disaster areas, war zones and the like then I think we all have a duty to do what we can to help and help those who directly help! such as MSF. With that in mind, all donations to me via Buy Me a Coffee and all the pennies generated through the ads dotted around my pages will be donated to MSF. I will make up the difference for the fees taken by PayPal and Buy Me a Coffee. That will run until further notice, no time frames and possibly until Ukraine is a free country again. Thank you for reading my blog. 

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Diabetic Oddity

Bowie was superb, wasn't he? Even several years after his death, his coolness only seems to increase with the passing of time. And look at his amazing eyes! - Obviously, I'm going to think that they are cool. I'm not here to talk about Bowie and what a great song Space Oddity is. That's not very Diabetesy. I did hear that song on Spotify, today and when Bowie sang "This is Major Tom to Ground Control" it brought about thoughts of how we describe Diabetes to others and how they ask questions about it to us.

Major Tom/Bowie went on to describe leaving his space capsule and entering the void of space. Bowie was a tremendous lyricist and wordsmith, of course but I wonder if he would've considered a hypo as "floating in a most peculiar way"?

Perhaps he would've come up with a description which is beyond most of us.

Where am I going with this blog? I've made comments about this previously. That the words we use to describe Diabetes, our Diabetes, cannot ever be challenged. I describe myself as a Diabetic or a Type 1 Diabetic. I take blood tests. I try to control my Diabetes.... Oh! Ground Control! Perhaps I'll stop trying to ignore Bowie in this blog and just carry on referring to his lyrics. 

Control is an interesting one. It seems to bring about great angst from some while others use it freely. Myself, I'll use that or "management". There are two reasons for that. Firstly, I'm of a vintage that is not upset by the words used by others unless they are used with the intent to cause upset or are used through hate. Secondly, sometimes, elements of MY Diabetes can be controlled. If an HCP asks me "How is your control?" or "How is your blood sugar control?" my first thought isn't how dare you use 'control' for a condition which isn't controllable! I'm not going to stand up and walk out or aggressively correct them. Instead, my default thought is that they're trying to get a basic grip on how I'm managing, lately. Lots of hypos, hypers, 100% in target, everything in between... something that can be improved? Great! If not, we move on to how magnificent I am. I accept "managing" and "control" in the same way.

I firmly believe that we shouldn't be challenging singular words in such circumstances. Reviews or appointments can be stressful occasions for us, as patients. I think our focus should be on gaining a positive from that 10-15 minute time slot and not leaving the clinic, feeling unnecessarily tense. HCPs are advised and trained on how to interact with patients but they're human beings. Human beings make mistakes sometimes especially after years of using some words which are now considered "No-Nos".

That doesn't mean we should ignore or forgive absolutely everything. I think if your HCP insults you or puts you down, if you're made to feel like a naughty schoolchild, then that's absolutely the right time to be vocal and complain. 

What is correct and not correct in regards to how HCPs interact with us is personal to you. Your own offence is completely valid, of course. I do think it's time that we stopped indicating what is right or wrong, in regards to language, to people living with Diabetes, though. There is no right or wrong. You don't need to change the words which you've been using forever when talking about your own condition. We have enough on our plates, in my opinion. Leave the "correct" way to talk about Diabetes to your overworked and exhausted HCPs. Overworked and exhausted after working in hotbeds of Covid-19 for 18 months - Perhaps something to consider when the next HCP puts a foot wrong.

One thing which I do struggle to control is my coffee addiction...

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