I’ve been thinking a lot about a promise that I made to my diabetes educator during my last visit. I promised that I would stop being so slack and start logging my insulin doses with my Freestyle Insulinx meter. “You need to be logging your insulin doses, otherwise it’s no better than any other meter” keeps ringing in my head.
The thing is, I’ve been spending considerably more time around my diabetes healthcare professionals since I began to ponder an insulin pump a few months ago. My team, and what they’ve asked of me, has been at the forefront of my mind in my day to day decision making a lot more often than usual.
In contrast, I’ve spent a great deal of time over the past year engaging in the Diabetes Online Community. With people just like me, who are living and dealing with diabetes on a day to day basis. I’ve found my voice, and become a lot more confident and empowered to make diabetes decisions on my own terms.
So when I’m around healthcare professionals who don’t necessarily have that element of actually living with diabetes, it really hits home in front of me. And I am suddenly reminded of something I haven’t engaged myself with in a very long time. Textbook diabetes.
My diabetes healthcare professionals are fantastic, and I know that they only have my best interests at heart. But I can only wonder whether they realise just how hard it is to do all of those little things on top of diabetes itself. I can only wonder whether they realise just how hard it is not to have any more than two hypos per week. To log every blood sugar level, and every insulin dose. To follow what’s written in a diabetes textbook, when you know that the textbook isn’t going to produce the results.
While I certainly don’t claim to be an expert, I know how to look after my diabetes better than anyone else. I live with, and manage it around the clock. It’s like a pet. I know how much to feed it. I know what upsets it. I know what makes it sick. I know what it likes, and what it dislikes. It might go against everything ever written in a diabetes textbook, but I know it works for me.
I promised that I would e-mail my educator the meter reports so that she could begin to work out insulin ratios for the pump, and help me to fine tune things. And I want to. I really want to. But the reality is that I haven’t. While everything has been going well lately, there’s still been a lot of fine tuning around my insulin requirements. That meter data doesn’t mirror textbook diabetes at the moment. And right now, I’m not comfortable trying to justify my intuition over textbook. Better luck next week, eh?
Really interesting topic. I know as someone studying to be a health professional in a different field, despite all the patient centred care and holistic approaches we try and implement, we can never know what it’s like to live with it. We really care about our patients and we use our theoretical knowledge to try and help. But rule 1 is that the patient is the expert on their condition.
We read about it, but we don’t experience it. As you say, the textbook isn’t textbook- or at least my diabetes doesn’t match up! They used to think it was insane that I didn’t need a full bolus for pasta for ages. It was weird but I always dialled down the dose and perfecto.
My supervisor told us the other day to brush our teeth with the opposite hand, to get a little insight into how someone who has had a stroke and communication disorder may feel. It doesn’t even begin to cover what their life is like but it makes us feel the frustration they must feel when their body or speech doesn’t work in the way they want it to.
Exciting stuff about the pump! Best wishes with it all. You’re doing your best, that’s all you or anyone else can ask 🙂
Thanks Bec! I know you guys do care about us patients. And hey, everyone can empathise to a degree in patient care as we are all patients at one stage or another. That’s all we can really ask 🙂
I am going through the same thing! I just switched to a new endocrinologist, a young, enthusiastic resident at the University hospital I go to. She constantly pesters me to send her my Accu-Chek Aviva readings but I seldom do. When I do find the time to get around to it she wants to make these minuscule adjustments to correct for a few lows or highs. I am hesitant to send them to her anymore. Those few lows or highs are inevitable no matter your I:C ratio or basal rate. I manage my diabetes my way and I am doing it well. (A1C just dropped back under 7 after a few months of diet neglect). We are diabetic, we aren’t going to have perfect blood sugars all the time or we wouldn’t have diabetes. I know it’s hard for doctors to understand and they just want to help as best they can but you are right, we are the best judges of how to manage our diabetes. And everyone is different! A textbook can’t explain the small variables that affect glucose levels differently in individuals.
Love your analogy of diabetes as a pet
Thank you! I usually prefer to talk through and summarise what’s been going on, rather than share actual data, especially in front of a new HCP. It usually leads to a better outcome and I’m much more comfortable. And yes, it should absolutely be on our terms!
Oh you know how much i love my pet puppy, using this analogy has just increased my diabetes care by ten fold. I was once a very quiet, i guess passive person and this was reflective in my acceptance of some really rough treatment by some so called professionals but an abusive event by an endo and so called CDE was a pivotal game changer for me, in fact i called it going rogue. I threw every 43 years of tolerating the “textbook” approach at all of them, and now i throw 47 years of the limitations of the textbook approach at a diverse range of diabetes so called experts. Thing is when i really started to trust my intuition and incorporate it into by diabetes care, it all fell together. Now i have a wonderful endo, whom i have a beautiful open and caring professional relationship with, he never asks for data, he accepts i want as least intervention as possible, and if i don’t see him as regularly as i should he tells me he “missed me” hehe. Trust your gut instincts Frank you have them for a reason. Now for me i am in range about 95% of the time, my diabetes stress is low, i do eat heathy and a bit obsessive but most of all i do it my way with great back up when and if i need it, albeit took many years and some explosions with health professional along the way to get there. When you have the knowledge and experience you don’t need the text book, it takes time but once you get there it is like autopilot, not saying it is by any means easy but it will get easier for you. Remember your health care team is there on your terms NOT the other way round, a lot of health practitioners need to be reminded of this.
You sound very similar to me before I ventured online last year – quiet. Venturing online has made me more empowered in my diabetes care, one of the examples being seeking out an insulin pump. I’m confident my healthcare team are there on my terms today 🙂
I just had a recall of “textbook” that is hilarious and i probably shouldn’t share it but being an older lady i think i can. When i decided to get a pump in my obsessive manner i checked out all of them, saw a number of CDE’s and one lovely well meaning but totally textbook CDE advised me of this: “Now the only time you can disconnect the pump is for showering, as for “intimate” times, keep it under the pillow but attached”. I had these graphic pictures in my mind, like how is that going to work, all those other position apart from missionary ??? So look textbook is fine as a guide but in reality, really seriously, how can you keep your pump attached but under the pillow in certain circumstances? hehe
An Insulin Logging Adventure - Type 1 Writes - Diabetes Blog
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