Following last week’s post about how my ADATS’ talk was received, several things happened. Firstly, I was contacted by a heap of people wanting to chat about the reaction. Secondly, I was sent several designs of logos and t-shirts with ‘deliberately non-compliant’ splashed across the front, which obviously I will now need to order and wear any time I do a talk (or am sitting opposite a diabetes healthcare professional). And thirdly, discussions started about how we manage our diabetes ‘off label’.
While off label generally refers to how drugs are used in ways other than as prescribed, it has also come to mean the way we tweak any aspect of treatment to try to find ways to make diabetes less tiresome, less burdensome, less annoying.
When it comes to making diabetes manageable and working out how to fit it into my life as easily and unobtrusively as possible, I am all about off label. And I learnt that very early on.
‘Change your pen tip after every use.’ I was told the day after I was diagnosed, meeting with a diabetes educator the first time. ‘Of course,’ I said earnestly, staring intently at the photos of magnified needles showing how blunt the needles become after repeated use. ‘Lancets are single use too.’ I nodded, promising to discard my lancets after each glucose check. ‘You must inject into your stomach, directly into the skin – never through clothes, and rotate injection sites every single time.’ I committed to memory the part of my stomach to use and visualised a circular chart to help remind me to move where I stabbed.
Fast forward about a week into diagnosis. Needle changed once a day (which then, in following weeks, became once every second day, every third day, once a week… or when ‘ouch – I really felt that’); I forgot that lancets could be changed; speared (reused) needles directly through jeans or tights into my thighs, having no idea which leg I’d used last time.
And then there were insulin doses. ‘You must take XX units of insulin with breakfast, XX with lunch and XX with dinner. That means you need XX grams of carbs with breakfast, XX with lunch and XX with dinner. These amounts are set and cannot be altered. You must eat snacks.’ I took notes and planned the weekly menu according to required carb contents. Within a week, I’d worked out that if I couldn’t eat the prescribed huge quantities of carbs, I could take less insulin and that all seemed to work out okay. And I worked out how I didn’t need to have the same doses each and every day. It was liberating!
I switched to an insulin pump and the instructions came again: ‘You must change your site every three days without fail.’ I promised to set alarms to remind me and write notes to myself. ‘Cartridges are single use,’ I was told and vowed to throw them away as soon as they were empty. Today, sometimes pump lines get changed every three days, sometimes three and a half, sometimes four and sometimes even five. Cartridges are reused at times…
I was also told to never change any of the settings in my pump unless I spoke with my HCP. But part of getting the most from a pump (and all diabetes technology) is about constantly reviewing, revising and making changes. I taught myself how to check and change basal rates – slowly and carefully but always with positive results. (For the record, my endo these days would not tell me to never change my pump settings.)
CGM came into my life with similar rules, and as I became familiar with the technology and how I interacted with it, I adapted the way I used it. Despite warnings of never, ever, ever bolusing from a CGM reading, I did. Of course I did. I restarted sensors, getting every last reading from them to save my bank balance. I sited sensors on my arms, despite warnings that the stomach was the only area approved for use. I started using the US Dex 5 App (after setting up a US iTunes account and downloading from the US App Store) because we still didn’t have it here in Australia, and I wanted to use my phone as a receiver, and seriously #WeAreNotWaiting.
And today…today I am Looping, which is possibly the extreme of using devices off label. But the reason for doing it is still the same: Trying to find the best ‘diabetes me’ for the least effort!
The push back to curating our diabetes treatment to fit in with our lives is often frowned upon by HCPs and I wonder why. Is it all about safety? Possibly, but I know that for me, I was able to always measure the risk of what I was doing off label and balance it with the benefit to and for me. I believe I have always remained as safe as possible while managing to make my diabetes a little more… well, manageable.
It can be viewed as rule breaking or ‘hacking’. It can be thought of as dangerous and something to be feared. But I think the concerns from HCPs go beyond that.
As is often the case, it comes down to control – not in the A1c sense of the word, but in the ‘who owns my diabetes’ way.
When we learn how things work, make changes and adapt our treatment to suit ourselves, we often find what works best is not the same as what we are told to do. And I think that some HCPs think that as we take that control – make our own decisions and changes to our treatment – we are making them redundant. But that’s not the case at all.
We need our HCPs because we need to be shown the rules in the first place. We have to know what the evidence shows, and we need to know how to do things the way the regulators want us to do them. We need to understand the basics, the guidelines, the fundamentals to what we are doing.
Because then we can experiment. Then we can push boundaries and see what is still safe. We can take risks within a framework that absolutely improves our care, but we still understand how to be safe. I understand the risks reusing lancets, or stretching out set changes by a day or two. Of course I do. I know them because I’ve had great HCPs who have explained it to me.
Going off label has only ever served to make me manage my diabetes better. It has made me less frustrated by the burden, less exasperated by the mundanity of it all.
And the thing that has made me feel better – physically and emotionally – about diabetes more than anything else is using Loop. So, use it I will!
It seems silly to have to say this, but I will anyway. Don’t take anything I write (today or ever) as advice. I’m not recommending that anyone do what I do and I never have.
5 comments
Comments feed for this article
October 30, 2017 at 2:47 pm
lmc
My non-compliance is keeping my BG levels during the day as close to a non-diabetic as I can. My endo however does not see me (figuratively) and wants my a1c ~7. I am eating less carbohydrates and injecting less so my lows are gentle. This is working for me and has alleviated some of the dread of future complications. I am waiting for them to catch up. I am sadly finding the HCP largely irrelevant for me.
LikeLiked by 1 person
October 31, 2017 at 12:19 pm
Rick Phillips
I am so non-compliant or was at one point anyway. I think being compliant in today’s diabetes community is a form of non-compliance with the norm and if so that makes me downright reckless.
LikeLiked by 1 person
October 31, 2017 at 4:37 pm
GB
I think you hit the nail on the head with asking who “owns” diabetes. Theres no possible way that a doctor I see for 30 minutes every 6 months can own my diabetes. Not even a remote chance.
In truth, all disease is ultimately owned by the person with it. Nobody else _can_ own it and whether or not a good outcome is achieved really depends on whether the person with the disease recognises this fact and embraces this ownership.
Ideally, HCPs would embrace this and encourage deep ownership. Sadly though, it seems many aren’t yet able to make this jump and those that are can sometimes be very reserved. Eventually I think this will happen however it wont be driven by HCPs, but rather demanded by patients who are already connecting with each other through the power of social networks where people with diseases are able to connect with each other and network to improve their prognosis.
Previously, HCPs were the mandatory intermediary of information. Those days are well and truly over and I think the resistance we’re seeing is HCPs coming to realise this. The sooner the medical community comes to embrace this truth, the sooner we will achieve better outcomes and the more we’ll learn from each other.
LikeLike
October 31, 2017 at 11:45 pm
theinsulintype
Great post. And you’re exactly right, the rules are there for us to know them, but also to experiment with. Go you, you non-compliant diabetic! 🙂
LikeLike
November 1, 2017 at 9:41 am
Merinda
Hi Renza, I’ve been pumping for 5 years tomorrow, and have been off label for a couple of years now, altering basal rates, I:C ratios and ISFs – all to the betterment of my control I believe. When I see my educator quarterly and she sees my alterations, she generally gives me another 3 months before tweaking it herself. I haven’t had an endo’ for 27 years. Then in the late 1990s I heard about stem cell trials and thought I’d better get another endo’ just in case they were close to a cure. That was short-lived as he was totally against a cure, saying blood tests and my old fashioned syringes were fine! My Educator suggested I should have one, so some years ago I made an appointment. Noting how little insulin I actually use (I don’t eat much) he asked if I was actually a diabetic. Seriously?! I promptly told him to check BGs when I didn’t have enough insulin to cover unknown carb’s – anything from 14 – 18mmol/l – hence the reason I refused to see him again. (Oh, and he even added that “We may have to force you to eat more”. Not sure how he planned to do that!) As for lancets I still have the original box of 200 that I purchased in 1981. Just counted them – there are now 122 left, so seems I change them at approximately 6 monthly intervals – can anyone better that? But here’s the kicker. Way back in September 2011 when I did the DAFNE course, the two lovely ladies running it had a pink fit when I told them I was mixing my long and short acting insulins (still using syringes back then) and came in the following day with emails they’d received back from the manufacturers saying it was NOT recommended! My theory was I could get away with 3 needles per day rather than 5 and sometimes I’d have no lunch so I could get away with only 2 – brilliant, eh? However I had complained for some years about losing my taste buds – I ate only for texture, as food was so tasteless. And do you know that when I took their concerns on board and switched to pens and soon after a pump, it took about 4 years for my taste buds to return and I’m thoroughly enjoying food again. And finally line changes. Of course I started with every 3 days, but on hearing that some people got away with 3-4 and even 5 days, I too stretched it out to where 5 was the norm. If it was a really good site I’d leave it there for 6 days. However on my last visit my educator noticed what I’d been doing and again recommended every 3 days – which I did. Then when my Animas consumables took over a month to arrive, I had to eke it out to every 4 days so I had enough on hand. So now I’ve happily slipped back to every 3-4 days. Sometimes time just does not permit and I figure four days is better than doing a line change at 10 or 11pm – or so the manual reads! And if I could afford it Renza, I’d certainly go off label, get a CGM and go “Loopy”. Sincerely hope DA-V’s submission to get CGMs for adults and the FreeStyle Libre on the NDSS is successful…
LikeLike