Rage Bolus - a Christmas classic

Disney Pixar's Inside Out. One of my absolute favourite films.

I've seen a few things about rage boluses in recent months and it did that rare thing of making me think, "I should write a post about that".

I can't remember exactly when I first came across the term 'rage bolus', but I think it was quite soon after discovering of the power of peer support and shared experience. I am almost certain that it came from that most legengary of #DOC legends, Kerri Molone Sparling's Six Until Me, and I'm pretty sure that it was Kerri who came up with the phrase originally.

If you live with diabetes and use insulin, even if you've never heard it before, you will instantly know exactly what is meant by a rage bolus. It was phrase that made me go, "Aha! Yes!! I know that thing." Type 1 diabetes can be incredibly frustrating to live with. For all the illusion of 'diabetes maths', and there is no question that sometimes carb ratios and insulin sensitivity factors can and do work (some days / most of the time / once in a blue moon), it is also absolutely the case that there's a lot more going on than food + dose = reliable results. And when things go a bit off track you can feel that you have got it wrong (and sometimes you have!). A sense of personal failure. Feeling like an idiot. So frustrating. Other times you know that you have done all the things you are supposed to do (scrupulously counted carbs in a carefully chosen, healthy meal that you've eaten many times before with reliable results) and still your BG ends up in chaos. Doubly frustrating. Or you just decided to treat yourself (after all everyone else with their functioning pancreases and none of this to worry about were having a lovely time) and then you see it all coming back to slap you in the face, even though you tried your best to work it out. Triply frustrating.

Sometimes there are only so many small, carefully-calculated, properly-spaced correction doses you can try and wait grinding your teeth and stewing in double figures for hours (or days) willing your BGs to stop inexorably rising or stubbornly unmoved before you go OH FOR GOODNESS SAKE and whack in a big ole slosh of insulin to try to get things moving downwards.

And as we approach Christmas I am aware that we are heading into 'rage bolus' season. Meals are likely to be less predictable. Less easily guessed or measured. You may have a little sniffle, or be drinking sugary alcohol, be surrounded by endless nibbles, or be less active than usual, or exposed to any number of other factors that might make decent dose-guesswork much harder.

Let me just be perfectly clear about this - rage boluses are generally a terrible idea. They almost always result in hypoglycaemia, sometimes in a really nasty and stubborn and/or scary low. And crashing from one out of range BG to another at the other end of the scale is likely to make you feel even more frustrated, annoyed and difficult to live with.

So why do we do it to ourselves?

Because, frankly, sometimes it WORKS. And like an addicted gambler feeding endless coins into our BGs fixed-odds betting terminal we have reached the end of balanced and logical assessment of likely outcomes. Sometimes high BGs are the result of a significant underestimation of carbs. Or perhaps it's a dose that hasn't absorbed properly. There are circumstances where we are in 'insulin deficit' of a number of units. And where the food already eaten is still feeding glucose into the bloodstream, and where a dose isn't likely to reach maximum effect until an hour after you grit your teeth and go for it, there can be long, long hours between a measured, cautious correction dose and seeing any effect at all.

Repeatedly, I have heard respected diabetes clinicians suggest that one of the reasons that rage boluses are a bad idea is that taking more insulin doesn't make it act more quickly, it only makes you fall further in the end which leads to likely hypoglycaemia. I think it would be much easier to resist the rage bolus urge if this was actually true. The simple, demonstrable fact is that taking a larger BG correction does make it act faster to reduce high BGs. We know this because we see it happen. And to pretend that it doesn't really isn't going to help me in a consultation. If I take a 0.5u correction dose (as suggested by my pump or smart meter) then after a reasonably predictable onset time I will have a proportion of that 0.5u available to act on my errant BG. If I take a 5u correction, after the same onset time I will have much more circulating insulin available. It may not be exactly mathematically 10x as much, but it will be more. And If I've rage-bolused before and checked after 30 minutes, then an hour, an hour and a half... I will have seen this happen.

Rage boluses do reduce high BG faster.

It's just that they also add chaos onto more chaos.

Sometimes I will make this calculation in my head:

OK so I've currently got annoyingly high BG. I also have some insulin already on board. Along with that, I also have half a meal which I may (or may not) have hoplessly inaccurately estimated that is feeding more glucose in. Some of which will be accounted for by the dose that's already acting. Or possibly it won't. Solution? I'll dose a big ole slug of insulin in now to get things moving in the right direction over the next 2 hours, then depending on how things go I will eat some extra carbs later on to mop up the last bits of the dose.

I mean... what could possibly go wrong?

I once referred to this frustrated act-and-counteract ballet as uncertainty tennis (particularly where my guesses and second-guesses follow in double-quick time and everything overlaps far more quickly that it can possibly have had enough time to actually take effect).

Try to give yourself some head-space this Christmas. Give yourself a little more leeway. Perfection is an illusion. BG perfection doubly so. No one wants to live with a grumpy pancreas-impersonater muttering and grumbling after every meal.

And if possible try to resist the rage bolus urge. Except for the times when it works perfectly and brings you back neatly into mid-range. I mean... those are just awesome! (and incredibly unlikely)

Getting animated

I was remembering back to my heady art college days recently, particularly some early experiments with animation. Animators at the Disney studios developed 12 principles of diabetes animation in the 1930s, including anticipation, follow through, slow in/slow out and, of course, squash and stretch. All these seem to have an uncanny resemblence to how my blood glucose levels have been behaving.

From time to time (read more or less constantly) I seem to go through periods of change where I need tweak various doses, ratios and settings in order to get them to behave normally*, so that the dose and timing of insulin for a meal which worked perfectly last week might be expected to work again for the same meal this week - in the SAME way (craziness!).

* I realise, of course that this has no actual meaning in day-to-day diabetes management terms. But it is, nevertheless, a nice idea.

An obvious one might be during a period of illness. You expect your insulin requirements to increase at some point, to some unknown level... but it's very difficult to actually anticipate with any certainty what the change might be and when it might happen. Even with illness, some coughs and colds behave completely differently to others BG-wise. Some are all up front. And it's only later when the sore throat appears that you understand why you've been fighting double figures (200s for US readers) for days. Other times you can have all the symptoms of a stinking cold, but BG just potters along entirely unaffected. Then if you have needed to up all your basals and/or doses, you know that at some (again unknown) point in the future you will need to rein them all back in again or you'll be landed squarely in hypo-central.

Another favourite is a fall-off of gym visits during a school holidays. I'm just coming into that now - the girls break up for Easter today. As the rhythm of the house changes I find it all but impossible to get up and out early enough to get to the gym and still be able to start work on time. For the first week things often toddle along as normal, but then one day in week two BAM! It's as if my insulin has turned to water. So I try to make sensible, small changes to basals. Enough to have an effect, but not so much as to go too far the other way. The constant balancing act. This usually involves a frustrating few days of doing battle with double-digit readings, however careful I am being with food and carb counts.

More recently I have also noticed an unusual phenomenon which I will be watching with interest this time. In animation 'slow in/slow out', 'squash and stretch' and 'follow through' refer to a more realistic way of handling movement. Movement tends to begin gradually, then accelerate, then slow again into changes of direction. You can almost feel it in yourself as you move about. Squash and stretch and follow through relate to the way animated objects often appear more satisfying if there is a little elasticity added. Rather than just stopping hard at the end-point there's a little extra movement beyond it and then a bounce-back to rest.

This seems to be exactly what happens with my dose tweaks too. I battle with highs for days struggling to find the right level of increase. Then I find it and I get perhaps a day or two of good numbers. But then I seem to get a little 'bounce back' and have a day of low readings where I have to dial the adjustments back down again to counter. And then things settle. At least for a while... before we're off again.

I think it's important for Healthcare Professionals to understand the relentlessness of these daily adjustments when they peer rather disparagingly at a printout of ropey numbers. There is no 'right' set of ratios and correction factors, only 'right for now'. This darned condition doesn't stand still for a minute and all the time you are playing catchup you are logging results that are outside of what you'd like to see, not because you are not trying hard or putting the effort in, but just because the rules have changed. Again. If I get a settled week or two I count myself lucky. But I know that membership of #teamsmug is usually very short lived.

That's all folks!

The Einstein Principle

Pick your cliché...

"I had it coming"... "Pride comes before a fall"... "Sod's Law"... "I brought it on myself"...

So hands up who thinks they know what has happened just as I posted something about how well things have been going recently. Right. So that's pretty everyone with diabetes reading this, every parent of a child with D, or anyone who lives with someone 'pancreatically challenged' then. Thought so. OK you can put your hands down now. Don't want your arms getting tired.

Yup. As you would all expect, immediately after I allowed myself a little glimmer of diabetic self-satisfaction the other day, things have well and truly gone 'off the rails'. In no small part self inflicted (a family birthday celebration with not quite enough self-control on my part). Partly stupidity - I forgot to press the final 'confirm' to administer a lunchtime bolus, cue stratospheric BG mid afternoon. A suspected big fat tubing bubble overnight (I know!). And also partly a little basal-tweaking needed as my half marathon training has started to kick in. What was looking to be a pretty decent set of figures for the month are suddenly looking decidedly ropey.

It's like that moment when [insert the name of your favourite sports star or team here] has put in all the hard work throughout the [season/game] and looks on course for glorious victory only to throw it all away with an errant putt on the 18th green, a missed double 16, by spinning out on the corner, conceding a sloppy goal in the 89th minute, or double-faulting the set away with a catastrophic loss of concentration.

It hasn't helped that I had a letter today from the fine folks at the mobile eye screening service today to say that they had spotted some 'background changes' in my eyes again. They said that once before a few years back, but I have to confess I far prefer the letters since then where they had been saying, "Nope, nothing to see here matey". No treatment needed, just another 12 month check. But not ideal news in a week where on-target readings have been a bit thin on the ground.

And of course (crassly stupid mistakes aside) those days when the wind is behind me and my pancreas-impersonating-guesses all come together with effortless perfection rarely 'feel' that different to the days when every reading seems determined to skip over that ever-so narrow target range that we all try to aim for. Days when meter and pump are constantly warbling warnings of imminent doom for being too high or too low. This is particularly the case when, like now, my basal profile needs a little tweaking. Tried and tested approaches, ratios and meal choices lose all reliability. Corrections and doses either seem to disappear entirely or hit home like a sledgehammer. And all the time I'm trying to just do the 'normal' things that I know work.

Albert Einstein is often quoted as having said that:

"Insanity is doing the same thing over and over again and expecting different results."

Well I don't know about insanity, but that's a pretty darned good description of living with type 1 diabetes.

Scapegoats, Lobbyists and the Perfect Storm

Apologies for the recent flurry of posts. It's been one of those weeks! Last night I watched the first of the BBC's 3-part documentary 'The Men Who Made Us Fat' (available for the next three weeks on BBC iPlayer).

I had been eagerly awaiting the programme since reading an article in the Guardian that someone tweeted a link to (thanks Louise!).

I was not disappointed.

It makes me wonder if this is the year that people will look back on in the future as a real turning point in the public's understanding of the obesity crisis. This programme, the article and several others in the media in recent weeks are finally focussing on factors other than saturated fat when talking about problems with the modern western diet.

The programme focusses on the decisions made in the US in the 1970s which profoundly affect the current mainstream thinking on dietary health and what we eat today. Decisions which in the end seem far more based on economics and agriculture than health. I can't pretend to be any kind of expert on these things, having only a passing interest, but it was amazing for me to listen to a programe that (for once) did not just bang on about fat in the diet when talking about the western world's weight problems. Unsurprisingly Ancel Keys influence on the subject was covered. He, famously, took against saturated fat. According to the programme, on a trip to the UK in the 1950s he began to believe that saturated fat was at the root of the major health issue of the time - heart disease (cue grainy black and white pictures of toothy children scoffing fish and chips). He then set about proving his theory.

I have heard the name Ancel Keys many times before. I have seen his work vilified and passionately defended on several diabetes forums. Sadly, in the end I don't think it matters what he actually said or wrote at all. His proposals seemed to be based on a mediterranean-style diet with plenty of fresh veg and olive oil and only moderate carb intake. What happened is that when it came to the question, "What is causing all this heart disease, fat or sugar?" the incredibly powerful industry lobbyists had their scapegoat. Saturated fat became the enemy. There was no 'saturated fat' lobby. No specific industry to protect or promote. The incredibly powerful Sugar Association in the US (powerful enough it seems, to prevent the World Health Organisation from setting a maximum limit on recommended sugar consumption), and the political might of the US agricultural industry swept everything before them. The portions got bigger... The stuff we ate got sweeter (sometimes with lovely shiny 'low fat' labels)... The snacks were more relentlessly available... and our self control was, frankly, not up to it.

I'm not (quite) cynical enough believe that the soft drinks/processed food industry chose the cheaper corn syrup/glucose-fructose syrup/HFCS as sweetener of choice knowing that it turned off leptin, the chemical in your brain that tells you when you've had enough to eat. I don't think the fast food giants and food manufacturers cared about anything other than increasing their market share and selling more and increasingly refined and processed products. Having said that, it was with horrifying inevitability that the spokesperson for the US soft drinks industry said that she did not believe her industry's products had anything to do with the crisis in the western world's waistlines (despite being the single largest source of calories in the US diet).

For the last 40 years we have been told that fat is the enemy, saturated fat in particular. Carbs are good. Fat is evil. Attention is now finally veering towards sugar. And if you consider the 'Tsunami' of glucose that hits the bloodstream when eating sugary foods to be a bad thing, then perhaps it is worth reflecting that many of the things I have been told are 'starchy' and 'slow release' have proved anything but under examination from my blood glucose meter (even with the benefit of modern 'fast acting' analogue insulins to tame them).

I'm not some kind of be-sandalled ultra low carb evangelist. To be honest I have profound reservations about the extremes of viewpoint in any kind of discussion. But in a world where people with type 2 diabetes (essentially an intolerance to carbohydrate) are continually told that they must base every single meal they eat on the very substance which most rapidly raises blood glucose and threatens to fry their eyes, feet and kidneys it was refreshing to watch a programme that raised serious questions about our addiction to carbs in general and sugar in particular. At the risk of sounding like my parents - once again it seems that 'moderation' is the blindingly obvious, crushingly simple answer.

The next edition of the programme considers ballooning portion sizes. I can't wait!

Look sir, droids!

Not very long ago (yesterday in fact) in a clinic not very far away... the adventure began.

Perhaps it is because I was eight years old in 1977? Perhaps it's because Dave and I have both been wrestling with the idea of turning to the 'dark side' for quite a while now?

For twenty odd years I have been using daily injections as a replacement to my pancreas. As recently as a year ago I was absolutely certain that despite the hype, an insulin pump was not for me. Pumping had been first suggested to me in perhaps 2002 or 2003 and I really couldn't see the appeal. All the carb guesswork, differing levels of activity and million-other variables would still be there messing things up, after all. The consultant who suggested it could not explain to me why it seemed to work better, just that it did. Over the last two years I have worked, noted, tweaked, experimented and focussed on improving my control as never before. But as good as things ever got on MDI it was still not good enough. In the weeks running up to my Annual Review the choices seemed pretty clear. A small change (to a different background insulin) on MDI, or a big change to pump therapy to see if it would work as well for me as it seems to for everyone else. Whatever I did with MDI, the hypo-squashing, control-improving, BG stability promise of the pump would still be there. It was time to try Replacement To Pancreas #2 (r2-p2).

So I'm typing this with a little robot counterpart attached to me. 'Artoo' and I have a long way to go.

First impressions are pretty good. Though to be honest since I have nothing to compare it with, how can I know? The first cannula I inserted (with the help of the lovely LJ, the DSN in charge of pumps at the hospital I go to) went in fairly painlessly with Medtronics spring-loaded Quick-Set gizmo. I was told that they often itched a bit for the first hour, but that it should settle. Four hours later it was itching like crazy, especially when I fake-bolused some saline through it. I'm not sure I had expected to constantly feel the presence of a set. And of course it may just be that, given that these are the first few hours, I am just hyper-aware of everything and that it is just all in my mind. Nevertheless, having read the first chapters of John Walsh's brilliant Pumping Insulin, and given that my week on saline is in part about experimentation, I decided to replace it in case something had gone wrong with the initial insertion.

The second try went pretty much the same as the first. Stung a little to start with - like an MDI injection where you nick a capillary except that it goes on feeling like that rather than going away in ten minutes or so. I've stuck with this one to see how things progress. I know different sets suit different people, it may just be that 9mm Quick-Sets are too long and 6mm would be better - or that I don't get on with the adhesive... or something else entirely.

I think that's the thing that is striking me most. This is a Paradigm-shift (ho ho!). It's absolutely like being diagnosed again. I have no experience to tell me whether this or that 'feels' right or wrong. Whether this sensation is fine, or a signal that something needs to be looked at.

It makes me very glad I have a week on saline to just get my head around the mechanics of it.

I've at least two more set-changes to go before I go back to the hospital to get started on insulin. I'm going to experiment with a shorter Quick-Set and a Sihouette to see how I get on with those.

If you are a veteran pumper with pearls of wisdom, or a wrestling with your own decision about pumping it would be great to have your comments.

UPDATE: WDD 2011 and some pumping firsts

The shape of things to come?

Before I got all hot under the collar yesterday about that news item on the BBC website, I had meant to write a quick post following my meeting with the lovely LJ, one of the DSNs at the hospital.

I gave her a potted history of the last two years (I've not really been in contact with the DSNs much for a very long time), the improvements I been able to make and the challenges and issues I still face. We talked hypos, warning signs, fear of driving, fasting and overnight levels, gym visits and everything in between. I explained my lingering uncertainty with the whole idea of pumping which some of you will know all too well. I've been bleating on about it for years.

Essentially it comes down to this - having got as far as I can with MDI, I am at the point where I see it as a clumsy, slightly imperfect way of mimicing the action of a pancreas. Pumping, on the other hand, is an incredibly subtle, but still slightly imperfect way of mimicing a functioning pancreas.

However I am convinced that more problems would be solved than created, and the lingering doubts I have will never go away except by experience.

So...

LJ has suggested that she recommends to my consultant that I begin insulin pump therapy (I have requested a Paradigm Veo to give me the option of self-funding the CGM facility whenever I need/can afford it). If the recommendation and funding is approved it is possible I could be pumping before Christmas.

I'm unexpectedly excited about it, and if I'm honest, just a little bit scared.

Now to get hold of a copy of Pumping Insulin: Everything You Need for Success on a Smart Insulin Pump by John Walsh

Update: Look Sir, Droids!

Every day ups & downs on Twitter

For those that like the world of tweets and twittering (and who doesn't?) we have set up a twitterfeed of the blog as @everydayupsdwns.

We will also posting any little updates and/or interesting bits of Diabetes-related stuff that we come across online. How could you resist?

You can follow us here: http://twitter.com/everydayupsdwns