Diabetes days off

As we transition into holiday season, with the traditional exponential increase in holiday accommodation costs everywhere, many thoughts turn to sandy beaches and the chance to take a break from the incessant whirlwind of life for some well-earned rest and relaxation.

Except for diabetes, of course... that never gives you a day off.

Well almost never.

I was thinking about this the other day, and even tweeted my exasperation and the more-than-usually-fickleness of my diabetes of late.

I had an annual review recently, and since my pump is soon out of warranty I am casting a casual eye over the current crop. I've been very lucky to be able to run sensors with my MM640G more regularly recently and there is no doubt that the semi-automation of SmartGuard helps improve my 'time in range' stats (more on that in another post). But recently, although occasionally Threepio acts autonomously and silently to dodge some hypos, more often than not I am having to use warbling alarms to check that SmartGuard isn't just mangling a carefully judged prebolus timing, or I'm getting a notification of a 'suspend' when I've already set a 0% TBR an hour before to cope with such extreme exertions as 'walking round the corner to the shops'.

I currently seem to be extra sensitive to carbs, very sensitive to 'stacked' insulin (overlapping doses acting together), highly sensitive to any form of activity AT ALL when I have any insulin on board, and generally insulin seems to be delighting in a nothing... nothing... nothing... EVERYTHING activity curve. Or not. Depending on the day.

Without sensors I would have been completely lost.

It reminded me of previous phases in my diabetes life when my diabetes would occasionally give me a week or two off.

Let me explain...

There were times when *all* I had to do was estimate carbs in whatever I was eating and deliver the dose to my insulin:carb ratio alongside my basal pattern (and correction factor). And the doses would work. Reliably. For. A. Whole. Week!!

And if I made a small error of judgement in terms of carbs in a meal I could administer the suggested correction dose... and that would bring me to mid-range within about 3-4 hours.

Bliss!

Of course, there's still quite a lot of effort going on there. Carefully tweaked and tested insulin doses, and dose timings. Meal and activity strategies that have been tested, and food choices that have been tailored to try to reduce the bewildering number of variables that life with type 1 diabetes involves.

But when that effort actually works. For whole days, or a whole week on the trot, it genuinely felt like a holiday.

The carb counting and dosing... the fingersticks and correction factors? For me those are the easy bit. They are absorbed into the rhythm of my life so that I barely notice them any more.

What I DO notice, what I find really tough, is the constant faff of putting in all that effort. Of playing my part as carefully as I can... only to get chaotic and unpredictable results back in return. Constantly feeling like I've got it 'wrong'. That I could (should?) have done better. The silent condemnation of BG readings from doses that didn't absorb properly, misjudged exercise, or insulin requirements that seem to change at the drop of a hat.

The 'that didn't happen yesterday's

The 'what on earth went on there's

If T1D was only a bit more predictable, if it would only stick to its own rules, it would be an awful lot easier to live with.

Happy holidays everyone.

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)

No two days - Diabetes Week 2018

Ugh. Good morning to you too.

Apparently this week is Diabetes Week.

Me neither.

If I get the chance I will try to rattle in a post about the excellent #languagematters work that is being launched this week which hopefully will provide useful pointers to healthcare professionals and people living with diabetes who are trying to have more positive, more enabling, less stigmatising conversations.

In the meantime I have other things on my mind. Because as I posted recently on Twitter my diabetes has been behaving in a peculiarly cantaknerous way recently and I don't see why I should suffer that alone, so I'm inflicting it on you lot.

We've toyed with a few different straplines for our blog over the years, before we settled on the current one, "Because no two days with type 1 diabetes are the same. Except when they are." Which I liked because it was a) slightly annoying and b) didn't really make much sense. Both attributes shared by type 1 diabetes itself.

It is part of the unending joy of playing at being your own pancreas that you are perpetually caught in the tension between the illusion of 'diabetes maths' (deliver x units of insulin to process y grams of carbohydrate plus or minus z percent for activity/illness/alcohol/whatever) and the reality of living with a condition where the sheer bewildering number of variables that might combine, contradict, multiply or cancel each other out, when trying to calculate a precise (or sometimes wildly guessed) insulin dose, mean that it can be extremely difficult to work out why things have gone well, or not quite so well.

As a defence, some of us pancreas pretenders with a few years under our belts attempt to find some ways of reducing the number of variables without expiring from sheer boredom. It's a kind of coping strategy and it can work quite well up to a point. I have eaten pretty much the same breakfasts and lunches for more years than I care to remember. A regular rhythm with slight differences for weekdays and weekends (craziness!) but generally, more often than not, a known number of slices of a single brand of bread along with a medium-sized apple at lunchtime, and a not very adventurous range of fillings/toppings. It is functional eating. Designed to be predictable. Well tested. Evening meals I tend to eat a much wider variety.

And this regularity provides a useful touchpoint. Because as I said this strategy is only successful 'up to a point'. And that point is where something else changes. You have the normal food, you take the normal dose alongside the normal background insulin and the normal level of activity. But suddenly you see anything but normal blood glucose outcomes. If everything is changing all the time, with all sorts of different meal choices/fat contents/dose requirements, it is much harder for me to spot when my diabetes has joyfully shifted the goalposts (again!) and when I need to slightly adjust basal dose or meal/correction ratios.

I've been happily using this technique for years now. And my diabetes and I have got into a sort of gently seething stalemate. I fix the ratios/basal/correction factor. A week or two pass... a small basal tweak is required... then another... then another... And every month or three perhaps a larger overhaul might be required. The basal pattern might slightly change shape, or carb ratios and correction factors may need to be adjusted. Blood glucose normality (Ha! By which I mean the generally expected levels of BG chaos) resumes. Up a bit... Down a bit... Down a bit... Back up a bit. And so my diabetes world turns.

Something odd
More recently I have been seeing something much more unusual, unexpected and irritating going on. But such is the chaotic and fickle nature of living with type 1 diabetes, that it's taken me a while to even spot it was happening, and realise that over the past 2-3 months it has been developing into a bit of a pattern.

The perils of CGM
In a sense, I wonder if I might have spotted it sooner if I'd had less access to CGM. It sounds bizarre, but the difference for me between living with CGM and living without it is that CGM frees me from needing my diabetes to behave predictably. I am able to roll with it and adjust as I am going along much more freely. But that freedom, ironically, may come at a price. Without CGM, I need my diabetes to be much better behaved. I need to know that I can do x and (more or less) expect y to happen without watching it unfold, or being alerted if things are going off-track. I've only been wearing CGM occasionally this year, but it's probably been 50-60% of the time. And that's a lot of weeks of 'adjusting on the go'. Having run sensor-free for 2-3 weeks I realised how much I had lost my fingerstick BG mojo (especially after a full year with quite heavy CGM/Libre use in 2017).

When the weirdness started happening and I was wearing sensors I just worked around it. It has only been since running sensor-free for a few weeks that I've needed to look at the root cause to try to get things back onto an even keel when I'm not able to watch what's going on between the dots.

Pattern spotting
What seems to be happening for me recently, at lunchtime and even moreso for evening meals, is that the speed of absorption of previously predictable meals has substantially changed. While I used to be able to take doses all up front with 20-30 minute delay before eating at lunchtime, and immediately before eating evening meals, I am now needing to use dual waves to substantially delay insulin delivery so that the late arriving food still has insulin available.  What had been happening was a post-meal period where an initial sharp BG rise was followed by a prolonged dip (needing multiple carb top-ups to prevent hypos while the meal dose was working at full strength) followed by a later rise into double figures as the food absorbed when the insulin was on it's way out. Many T1s will be familiar with this 'pizza effect' where the fat delays carb absorption - but suddenly I was seeing it with previously very predictable and cooperative foods.

I can't explain why this has suddenly become necessary. I'm not sure I even care to be honest. Especially since breakfast seems to have been entirely unaffected and is proceeding as it always has. Typical type 1 diabetes. It can't actually make sense. It just has to set new 'rules' for that thing, but leave that other thing as it was. And in another month? It could all change again!

The good news is that I have made some decent progress in the past few days to find a set of splits and timings of dual wave doses that seem to be working better for lunches and evenings (and reduced dose ratios to boot). I will pop a sensor to see a bit more detail in the next few days.

Hope the BG gremlins are giving you all a bit of peace.

Facebooking my diabetes for #WDD2016

Monday this week was World Diabetes Day. It's is one of those made-up things that come around every year and hope to raise awareness of something or other - World Sparrow Day... International Day of Happiness... World Toilet Day... One of my own favourites is 'International Talk Like A Pirate Day', but I digress... Aaaaarrrrrrrrr!

World Diabetes Day is held every year on November 14th, good ole Freddie Banting's birthday (one of the guys who was instrumental in the discovery of extracting and using insulin in diabetes treatment). It was nice to see a WDD themed Google Doodle make an appearance, something that us pancreas-impersonators have been asking for for many years.

A few years ago, inspired by something I saw on Twitter from Scott Hanselman, I decided to document a day's-worth of diabetes interactions on Facebook as they happened. People seemed surprisingly interested, and so having given them a few year's respite I thought it was time to Facebook my diabetes again. Here's how it went...

06:22 
Slightly early start to the day but the routine is the same. First thing, even before kettle goes on is to check blood glucose level. Make small hole in finger, squeeze out drop of blood and apply to test strip. Result: 8.3. Ideally this would be between 5.0 and 7.0. Give insulin for breakfast. Estimate single slice of toast as 15g of carbohydrate (12g for the bread, 3g for a dab of marmalade). Insulin pump suggests 1.3 units of insulin for the carbs, plus 0.6u to correct the slightly high BG level. In addition I also need an extra 1u for my liver releasing extra glucose when I get up (part of the body's Circadian Rhythm). Dose delivered I will now wait at least 30 minutes to eat breakfast.

Via comments:
Regarding the carb value of bread: I deliberately choose Burgen 'soya and linseed' as it is a) tasty b) slightly lower carb and c) relatively low GI

Regarding waking BG level: The official guidelines are 5-7, I think. The 7 is to give some wiggle room for a rise after eating. Usually pre-meal guides are 4-7, but at breakfast they make it 5, because regularly waking in the 4s is associated with increased risk of undetected nocturnal hypoglycaemia which can be a real problem. 

06:50
Check pump display to remind me when I had dosed for breakfast. I have been waiting 30 minutes to eat for so long I often instinctively get this right. I thought to check at about 28 minutes today which is about perfect. I need to leave a gap between dose and food because the 'rapid acting' insulin I use is not actually very rapid. I cannot afford getting distracted though as if I wait too long the insulin could start working before the food kicks-in and my BG levels could drop too far. It's a balancing act! 

07:17
Breakfast of champions. I have tried many things over the years but this seeded bread is fairly reliable for me (everyone's reaction to different foods is frustratingly and confusingly different). It has slightly fewer carbs than regular bread - 12g per slice vs the more usual 18g - and the seeds help to slow absorption. It is anything with carbohydrate that raises blood glucose levels, not just sweet things, so that's bread, rice, pasta, most fruit, anything made with flour, grains, root veg, and then all the sweet and sugary things too. My task is to match the carbohydrate I eat with doses of insulin. And then to match the speed of absorption of the food with the timings of the doses. I cannot hope to get that right all the time. But the lingering threat is that if I get that wrong too often I am at risk of blindness, heart attack, stroke, kidney failure, limb amputation (high levels) or unconsciousness, coma or death (low levels). Fun eh! Over the past 25 years I have spent more time thinking about the potentially disastrous outcomes of my efforts to manage my diabetes than is probably good for a person's mental health. 

07:57
Time to take this moppet out for a walk. Activity and exercise need more fuel than resting and tend to make insulin work more dramatically, so I need to allow for that, even when it's something as insignificant as a 35 minute wander. My insulin pump allows me to reduce my 'background' insulin level, so I am setting a 70% Temporary Basal Rate for 45 minutes. 

08:52
Back from dog walk, just checking to see how things are going. 11.5mmol/L. This is too high, it looks as though I could have done without the TBR I set (though tomorrow might yield different results even if I do exactly the same things). Ideally this should be no higher than 9mmol/L 2 hours after eating so I am adding .7u of insulin with the aim of getting me back to 9 and leaving the insulin already 'on board' to deal with breakfast as it continues to digest. 

09:14
It's 9:14 and I realise I have already forgotten to mention something. I had a shower, so I disconnected my insulin pump temporarily, capped the tubing and the cannula that is inserted, currently, on my back. After the shower I primed the tubing and reconnected. So many of these interactions are so automatic I barely even notice them any more. 

10:02 
WDD Update: (It's RELENTLESS isn't it?) 10am and feeling a little bit indigestion-y / dry-throated. This *might* be connected with my raised blood glucose levels, but my symptoms of high BGs are patchy to say the least. It is probably because I have just been thinking about it since breakfast and it's all in my head. Or maybe it isn't? Tempted to check my blood glucose level again, but the thought of another finger prick so soon after the others (and especially because I think it will be another high level) is not encouraging me. 

I am also feeling a bit hungry, but adding the complexity of something carby at this stage will just create even more confusion/uncertainty so I am having a handful of nuts and a cup of tea instead. It's not that I *can't* have a couple of biscuits - it's just that the mental effort, and potentially disastrous BG outcomes kinda drains the joy out of them.

Via comments
Regarding feeling hungry when BG is high: I think it's because you body knows you have fuel on board, but it also knows that the energy is trapped in the blood and not making it into the cells. So it asks for more fuel. Which potentially makes the problem worse. Which makes you hungrier. Rinse. Repeat...

The really REALLY irritating thing for me is that my clearest symptom of low blood glucose is ALSO 'feeling a bit hungry'. So every time I feel a bit hungry I have to work out whether my BG is too high because of what I've just eaten, too low because I've over-compensated or, perhaps, that I might be just 'a bit hungry'. Pah! 

10:40
My Twitter feed is ablaze with #wddchat16 today. A 24-hour curated international Twitter conversation with different countries hosting an hour and handing over to each other. Thousands and thousands of people connecting, sharing experiences and supporting each other. I find great support to help me manage my T1 by connecting with people online, but I am going to have to resist getting involved on Twitter today or I am *never* going to get anything done! 

12:30
Lunchtime beckons. As you can see, the carefully considered correction doses I have administered today have had absolutely no effect, even though all of those doses have now finished working (approx 4 hours). I am beginning to feel the sluggishness of high BGs emerge. Lunch is a 2 slice Burgen bread sandwich and an apple*. 25g carbs for the sarnie and allow 20g carbs for the apple, so 45g total. My lunch ratio is 1 unit of insulin for 11g carbs. Thankfully my pump can do the maths for me, along with calculating a correction based on 1u lowering my BG by 3.5mmol/L and the difference between my current BG and my ideal mid-range target. Confused yet? Dose for lunch is 4u, plus another 1.5u correction for the high BG. I will wait rather longer to eat this time, with the intention of being more in range before adding more carbs. A tricky timing challenge as the longer I leave it the more steeply dipping my BGs will be when I eat, and the food will take a while to get going itself. It can feel like trying to hit a perfectly weighted long-ball pass to a sprinting striker... in the rain... into a headwind. 

* I tend to eat the same things for breakfast and lunch week in, week out. Partly habit, but mostly to reduce the number of variables by sticking to things that have been 'fairly reliable' (Ha!) in the past. That way if results are not as expected I can discount carb-estimation and food-absorption-speed errors, and it becomes more likely that my insulin needs have changed again.

12:46
How long has that been? Ah. OK, my instinctive 30 minute recheck. Will leave it a while and BG check again.

Via comments
It must be exhausting being you: The thing is... I recognise how amazingly lucky I am to *only* have T1D to live with. And to live with it in the UK with access to insulin, tech and the unbelievably amazing NHS. If I'd been given a list of LTCs to pick from aged 21, it would have been a pretty good option.

13:12
Just checked again. #BGnow of 9.3 after a full hour. Not perfect, but it will have to do. If I don't eat now I'm likely to get too absorbed in what I'm doing and forget.

15:42
This is getting a bit annoying now. Walked to Coop without TBR as things have been running high and I'm still too high on return. If things were working I would already be back in range. Correcting with a further 2.5u. Pump recommended 0.7u as I still have 0.7u 'insulin on board' from lunchtime. Initially thought about 1.5u, but have added another unit. Essentially I am now dosing what I think is 'slightly too much' because 'enough' isn't doing anything. I will need to keep an eye on it towards eve meal time. Starting to feel a bit crabby/irritable.

Via comments
Could raised BGs be an issue with the infusion site? Good thought, Not sure though... Would expect a much more dramatic rise with a cannula fail rather than being held steady through subsequent meals. This just feels like walking the wrong way on a travelator. Have been expecting my basals/ratios to shift soon. Looks like this could be it?

Could it be degraded insulin, having got too warm?  No it's quite a fresh one. I will take a look at tomorrow's results and see whether it's a pattern or 'one of those days'

17:43
Yay! My first in-range result of the day. Must remember to change my insulin pump battery before I go out for the evening. Last thing I need is Threepio wailing away when I'm trying to play guitar.

17:56
Just prepping for evening meal. Here's my insulin pump working up the mathematics for the dose. Feel very lucky to have access to tech which can fine tune doses like this. And if I decide I want to up my insulin intake by 10% tomorrow I can adjust the settings and let it work out the new ones. My diabetes may not behave reliably/predictably, but at least I can wrestle it with some precision on one side of the equation!

19:54
Typical, just when you can't watch what is going on and just when you really don't want to dip low. Several handfuls of Skittles to the rescue. Don't want to repeat the brain-fog for the next lot of songs.

Via comments
Regarding hypo warning signs: The ones that sneak up on me at that level really scare me. I tend to get good signals at least between 3.5 and 3, this time I had lack of coordination and slight sweating as clues. Didn't get my more usual anxiety/hunger until on the way back up.

21:42
That's the thing about T1 diabetes. You really can't rely on it to behave consistently. Just when you have been running high all day, and without rage-bolusing for a meal you get an unexpected dip. I suspect a slight mis-estimate of carbs for my evening meal, and not quite enough of an insulin delay for noodles (some carbs take longer to hit my system and an insulin pump allows me to deliver the dose either fully or partially spread over a number of hours). Still surprised the handful of extra fast carbs I ate as a 'safety cushion' disappeared so completely. 

22:02
Another check, and as I half expected I slightly over-did the hypo correction. Always tricky treating a hypo when you have insulin active, and when you don't want to risk a double-dip. I added a 30 minute 0% temporary basal rate just in case. Looks like a few Skittles too many. Another correction delivered. Not my best day of BG control. But not my worst either!

23:36
This is the last of my posts as part of World Diabetes Day. I waited up to allow that last correction to settle in. 

In Sesame Street style, today has been brought to you by 9 blood glucose checks, 110g of carbs, 29.475 units of insulin (40% background, 60% meal/correction). Just an average day with T1D (with above average BG levels). 

Now wake up tomorrow and do it all over again. And the next day. And the next. And the next...

 

6.5% A1c target - A reply to a comment that got out of hand

I've had a couple of comments on my post about the proposed new HbA1c to aim for in the draft NICE guideline that is currently out for consultation. I was rattling in a 'quick' reply, when I thought - this is *ridiculous*. I can't even see this any more in this tiny box - so I've decided to post it here instead :)

Here are the comments:

Tamer Hassan said...
how do you achieve these numbers?

thanks

Tim said...
These numbers are impossible to reach...
Or at least give me some suggestions on how to reach these levels. Thanks.
Tim

'How to reach these numbers' is a question for your healthcare provider really. Don't just ask some random nutter on the Internet! However (and desperately trying to avoid sounding like Mr Smug of No 22 Smug Gardens, Bigheadshire) I have had a sub 6.5% HbA1c for over 3 years now, so I know that it *is* possible if only perhaps for the lucky few. Plus I've never had fewer hypos in my life with diabetes either - so it's not that I am 'paying' for A1c improvements with the hefty cost of Severe Hypoglycaemia.

I cannot really tell why some people seem to put in so much effort and get such scant rewards, and that is why I think individualised targets are SO important.

But it does seem pretty clear to me that the closer you can get to those standard-issue BG targets (5-7mmol/L waking, 4-7mmol/L pre meals and <9mmol/L by 2 hours after meals) for as many days in the week as you can manage, the closer you will get to these kind of tough, aspirational, borderline non-diabetic A1c targets. My own HbA1c has fallen by around 1.5% in recent years, and I think only around 0.5% of that is attributable to the pump - though Artoo has gone a LONG way to reduce my number of irritating low-level hypoglycaemia dips. When I look back over the changes that I have made in recent years I can see a few things that I think were important. I don't offer these as any kind of guide or advice - it's just what I did.

1. Education. Get access to proper structured education regarding diabetes management. In the UK we have DAFNE which is highly thought of, but other options are available. Things that should be included (in my opinion) are:
   
   1. carbohydrate counting, working out how to check and change insulin:carb ratios for different times of the day
   2. SMBG technique - when to test and what to do with the results *including* basal testing to PROPERLY adjust basal on an ongoing basis
   3. correction factors - when and how to correct (with insulin or fast-acting carbs) to aim bring you back into range without jumping aboard the gluco-coaster
   4. exercise and alcohol
   5. dealing with illness
   If structured education courses are not available in your country/area you can do a lot worse than buying 'Think like a pancreas' (Scheiner), 'Type 1 Diabetes' (Hanas) or 'Pumping Insulin' (Walsh/Roberts) which cover much the same ground. Though the benefit of peer support in group sessions should not be underestimated. Alternatively look at the free BERTIE online course.




2. Test more often AND RECORD THE RESULTS. Find some way of keeping notes daily as you go along. What you are eating, units and timing of doses (how long before... split doses...), exercise, mood, everything! Without a fairly detailed set of records I find it impossible to see what is going on. Personally I still love mySugr for this.




3. Gadgets - seek out new tech that can help you manage your diabetes more easily. It might be a 0.5u pen; a smartphone tracking app, or copy of 'Carbs and Cals'; or it might be a BG meter with a bolus wizard so that you can have properly fine-tuned ratios without having to worry about keeping the maths easy. Additionally, ask your clinic about access to Insulin Pump therapy and CGM.




4. Seek peer support - join a forum or two, join Twitter, read some blogs (thanks!) or even *crazy!* join a local group and meet face to face. Living with diabetes is tough, but it's even harder if you are battling on your own. For everyone there's a little corner of the internet that can provide support, encouragement and shared experiences.

At the end of the day we each have to find our own balance between living a life and managing our diabetes. Somewhere in the middle you'll find your perfect A1c and it won't drain all the joy out of life to reach it.

Good luck :)

Uncertainty Tennis

I found myself playing 'uncertainty tennis' again earlier this week. Perhaps you don't call it that... 'paranoia ping-pong' maybe? Or possibly 'confusion Kerplunk'. On the other hand - perhaps it's just me... And no one else ever catches themselves doing this?

The game begins some time before it starts, usually at least a day before, often more. You make a treatment decision based on what we long-term pancreas impersonators hilariously think of as 'what normally works', except that, on that day, it doesn't. Undaunted, you take some more insulin and/or carbs that 'should sort this out'. Except that it doesn't either. Or the next thing. Or the next.

Now that the groundwork is in place, the game can begin in earnest. Evenings are my favourite time to play, since that is the time of day when I eat the widest variety of meals often with the highest carb load.

Play.

First serve the other day was a carefully carb counted plate of pasta. A meal I have often eaten without suffering undue BG chaos for many years (yes I know... odd isn't it). Bolus delivered and food eaten. 15 all.

An hour an a half later, since things have been a bit unreliable over the last couple of days I decide I should check post-meal just to see how things are going. BG well into double figures. Darn. And pasta has a reputation for being very slowly absorbed too! And I didn't even muck about with extended bolus, blah blah blah. 15-30.

Now I know that the meal dose is still chugging away. But I also know that I really shouldn't have shot up this much by now. Artoo thinks there is plenty of IOB (insulin on board), but from experience it seems that would only be the case if I'm 8 or 9 at this point, rather than 12-point-annoying. Override the advice and whack in another unit. 30 all.

Another hour passes and I come over all hungry. Hmmm. Best be on the safe side. Low 10's. Well OK. Not low then. Still quite a lot of IOB though. And I *did* override. Sit tight or do something else? Pasta will still be going strong right now, won't it? Will it? 40-30.

Then a stunning approach shot... 20 minutes later and for reasons I can never fully explain I pop in another .7u - Deuce.

The crowd gasp! I've stopped testing now and I'm playing on instinct...

Too much IOB now surely? 2 Fruit Pastilles.

Then a minute later another one.

Still don't want to test. Too many out of range numbers today and I just don't want to see another in either direction... It's like whatever action I've just taken immediately feels wrong so I have to counteract it before it has a chance to take any effect.

Third of a unit.

Swig of lucozade.

Biscuit.

Too much surely?! Half a unit. The crowd are in their feet... (I'm milking it for comic effect now).

Finally after several hours, I can resist it no longer. I check again. 5.whatever with umpty units IOB, plus the last few lots of feverish carb corrections and whatever pasta remains still ticking away. Not only that, but (based on which part of the last two day's numbers I consider to still be applying tonight) I could quite possibly expect to rise, or fall, OR stay perfectly level overnight.

So bedtime looms and I have to decide whether to take it to the tiebreaker and wait up for some (most?) of the IOB and/or onboard carbs to work their way out along with whatever I decide to guess at to mop up the remaining IOB.

Or I simply munch a little something, retire, and hope for the best!

I am fully aware that my evenings of 'uncertainty tennis' are largely my own doing. Without a CGM, and when things have shifted such that I have little confidence in what I think ought to happen with a dose or correction I find it all too easy to slip into a rapid rally of insulin and carb corrections.

It would be easier to resist if I hadn't had so many evenings when 'just leaving well alone' meant I spent 4 hours in double figures only to eventually correct with what I had thought of doing in the first place. That and the fact that I've played some amazing games in the past where I've aced a high or low BG into flatline submission with some audacious... erm... 'shots' (sorry!).

Strawberries and cream anyone?

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!

Cook & Count Carbs - App Review

I was really happy to be asked to take a look at a new app for iPhone (an Android version is coming soon) which immediately sounded like a Very Good Idea.

More and more these days we are reminded that heavily processed foods, while convenient, are generally poor food choices. Even without the revelations regarding the 'so hungry I could eat a horse' frozen-microwaveable-lasagne-for-one fiasco, most of us realise that food genuinely tastes better and is much better for us when it isn't jam-packed full of chemicals from the darkest corners of the periodic table in order to give it a half-life on the shelves, or permit a 'low fat' (don't get me started) label on the front.

Real food, made from real ingredients. Lovely.

For those of us juggling busy lives and diabetes though there is the added complication that those nasty chemical-laden packaged foods tend to come with a very handy grid of information providing the all important carb count. Cooking from scratch is great, but trying to get an even vaguely accurate carb-count for what ends up on the plate can be a bit of a bind. Well not any more!

Cook & Count Carbs focusses on doing one thing well. It doesn't fuss about with calories or offer nutritional info about fats, proteins or other micronutrients*, but allows you to very quickly look up individual ingredients or build complete recipes and then work out carbs-per-portion for however many people you are dividing it between. (*Update: The app has since been upgraded/updated to allow you to track calories/fats/proteins/fibre and other details if you would like to, or just stick to carbs-only)

I have fallen foul of the promise of carb-lookup functionality a few times before. Some apps use lists which are based largely on foods and brands only available in the US, others require an active network-connection to access the data. My favourite waste of time so far was an app that allowed you look up a huge range of ingredients but only allowed you to indicate quantity by 'serving'. So you could choose one, two or nine 'servings' of wholemeal pasta and get a carb count, but absolutely nowhere did it specify how much pasta one should cook for an individual 'serving'. Utterly useless.

Thankfully C&CC is a lot better thought-through than that. There is a pretty comprehensive list of ready-made choices for both raw and cooked foods, all available by weight (grams or ounces depending on user preference). Brilliantly the app also allows you to define your own 'custom' ingredients from the food-labels on the stuff that you actually buy if that turns out to be missing, or significantly different from the predefined list. And you can use it anywhere... fully networked city centre apartment or a farmhouse in the back of beyond.

You carry on adding as many ingredients as you want to and then flick to the 'total' screen which allows you to divide the whole recipe into as many servings as you are expecting. This number isn't fixed, so if you decide to divide into more or fewer portions later on, or the next time you prepare the meal, you can easily get an updated count.

You then have the option of saving your recipe to refer back to in your 'My recipes' section. You can add a photo of what it should look like and even add detailed notes on how to prepare the recipe if you wish. One slight quirk is that you can only edit a recipe you have previously saved if you have added at least one 'Method' entry. Once you have done that (even if it only says 'Method' ) an edit icon appears below the recipe and you are able to amend and update any quantities, add or remove ingredients and then save a new version if desired. For keen social media types there is also the option of sharing via Twitter.

Also inbuilt into the app are a collection of existing recipes from starters, mains and puds to low carb & gluten free, as well as an 'info' page with articles, tips and additional information.

The interface is quick and intuitive and I have found it equally handy for a quick 'ready-reckoner' look-up of an individual ingredients as well as calculating more complex and complete meals. It is hard to imagine how the app could be improved - and that is a very rare thing for me to say. At the current price of £3.99 it is not the cheapest, but if you like the idea of cooking from scratch without the mathematical acrobatics it is well worth considering for the price of a couple of coffees.

Final score: 5/5

Disclosure: Deborah Wilder and Health Apps Ltd very kindly offered me a free copy of the app for review, which I was allowed to keep. I was not asked or paid to write this post, and only did so because I thought the app was bloomin' marvellous!

The consistency conundrum

Christmas is an interesting time of year to play at being your own pancreas.

The main Christmas Day meal itself is usually *ahem* relatively easy (especially since I adopt the traditional standpoint of 'no carbs count' for Christmas and birthdays). As meals go, it is big... it is rich... and it will probably involve a pudding the size of a bowling ball... But it is basically just a roast dinner and it is only one day - and you can't expect perfection all the time right?

However, on an alarming number of occasions either side of the 'big day' I find myself faced with my own particular food nemesis - a creaking table full of buffet nibbles. Each little carb-laden, high-fat morsel smiling sweetly up at me daring me to have a go. A festive tipple or two to blur my judgement and weaken my self control and you can see that these meals fall firmly into the 'high risk' category.

Which is quite an odd way to look at food really... But I've been doing it so long that I hardly realise I am doing it.

Over the years it has seemed logical to me that consistency in terms of food intake is likely to be a good strategy for Blood Glucose results. It makes sense surely? Eating similar quantities of similar foods should allow me to try out a number of dose and timing variations until I find one that works. Then I can eat that same meal any time, and get perfect results. Tried. Tested. Predictable. Easy! Other meals are much harder to calculate (read: wildly guess) and almost come with an inbuilt expectation of BG chaos. If you are going to enjoy these... you do so knowing that levels are likely to be less than perfect.

Except that it doesn't actually work like that. At least not for me, or perhaps just not all the time. And when it doesn't work like that... When an 'old faithful' lets you down catastrophically, while in the same week a 'wild stab-in-the-dark' guessfest comes out not too bad, you begin to wonder why you are bothering to make those careful choices in the first place.

When it comes to playing the BG boardgame (not so much Snakes and Ladders as Spikes and Hypos perhaps?), my diabetes, like some cantankerous elderly maiden aunt who hit the sherry early on is a big ole cheat. Not averse to completely changing the rules when it suits, or simply behaving in a completely baffling way. Even *if* I were to eat exactly the same items of food, in exactly the same quantities every single day. Even then, I still could not expect 'perfect' BG levels (whatever that means) to last for long. The consistency conundrum is simply that carbs, doses and timings are only a small part of the picture. There are a lot of other factors in play that can combine (or conflict) to significantly alter the outcomes for the most self-disciplined diet.

Douglas Adams summed up living with type 1 diabetes pretty well:

“The nearest approach the Guide makes to this matter is on page seven-thousand-and-twenty-three, which includes the words “expect the unexpected.” This advice has annoyed many Hitch-Hikers in that it is ‘A’ - glib, and ‘B’ - a contradiction in terms. In fact, the very best advice it has to offer in these situations is to be found on the cover. Where it says, in those now notoriously large and famously friendly letters, 'DON’T PANIC'.”
Douglas Adams, The Hitch-Hiker's Guide to the Galaxy.

In my heart I know that trying to reduce the number of variables involved in juggling my BGs is the 'percentage approach'. After a few days of winging it I usually have had enough misses for the illusion of SWAG invincibility to have worn off.

So I'm reeling my choices back in again, and aiming to lose some of the wilder swings I've seen over the past week or two. It will always be a balancing act. Along the line between complete dietary freedom at one end and monk-like self control at the other there is a place where each person with Type 1 Diabetes will feel comfortable, both with the food they are enjoying, the effort they are putting in and the results they are seeing.

Good luck in finding your own balance.

Seeing red: Food labelling, traffic lights and missed opportunities

My heart rate was significantly raised this morning while at the gym. Not because of my less than challenging treadmill pace, but because of a news item that came onto breakfast TV about the new food labelling system that is expected to be in place by the Summer of 2013.

I wrote about the public consultation on the subject that took place in July 2012. At that stage I was full of giddy optimism that my eloquently worded appeal would result in a Marvellous New World of clearly labelled, impeccably helpful packaging that assisted the entire UK in making better food choices, but in particular supported the millions of people living with (or at risk of developing) diabetes of one form or another - something upward of 5% of the population by 2010's numbers. The people for whom this stuff really matters.

The precise details of the new front of pack splodges are still being worked out, but from what I've read my life is about to get just a little bit more difficult and I'm going to be very grateful that my phone has a calculator on it.

I don't really have a particular problem with the traffic light system as an infographic device, my concern is based mostly on the information that the current systems display, and in particular the obsession with listing 'of which sugars'.

Let's just get this straight, 'of which sugars' is an almost entirely useless piece of information. Well, not quite. If you were comparing two products side by side that were virtually identical in all other respects, then perhaps 'of which sugars' might be worth casting an eye over.

The Really Big Problem is that most people *think* they know what 'of which sugars' means. People will believe (because they have always been told that this is the case) that all food with lots of sugar in it will zoom straight into the bloodstream, while food with no added sugar will be absorbed more slowly. Like most of the best misconceptions this opinion persists because it is almost true. Food with a large amount of added sugar is likely to hit your bloodstream fast. But there are many many foods which are broken down significantly faster than sucrose. And the REALLY Really Big Problem is that many of the foods that break down in the gut faster than sucrose (table sugar) are the very same ones that people think of as being 'healthy'. Brown or wholemeal bread, for example... Pretty much any breakfast cereal you can think of... Mashed or baked potato...

The Glycemic Index (or more helpfully the Glycemic Load which takes portion size into account) is a measure of how disruptive a food is likely to be to blood glucose levels. To measure GI a smallish number of test subjects are usually given 50g in carbohydrate of a particular food and then their blood glucose levels are measured to establish how fast the energy in the food hits the bloodstream. Simplistically, all carbohydrate is made up of units of monosaccharides (glucose) joined up in chains. The easier it is to break down the chains into glucose, the faster it will be absorbed. On the GI scale, pure glucose scores 100. Sucrose, table sugar scores a 'moderate' 60. Despite it's 'starchy' reputation the carbohydrate in wheat is very readily broken down and there is far less difference between white and brown versions than we might hope for - exact values will vary, but wholemeal bread is likely to be between 68 and 78. Yes, that's right... gram for gram of carbohydrate it's faster than sugar. When you begin to look at breakfast cereals things get even more bizarre as far as the 'of which sugars' is concerned. Cornflakes weigh in at a blistering 77-93, while Crunchy Nut drop a little at 72 and Frosties score a mere 55. These breakfast cereals will be slowed a little when eaten with milk, but completely counter-intuitively the ones with added sugar are *slower* than those without, presumably because the corn itself is so darned fast.

That's not to say that any of the foods I mentioned are necessarily 'off limits' for a person with (or without!) diabetes - but I really think we need to get over our obsession with sugar in this country and especially where food labelling is concerned. A low 'of which sugars' does not make something OK. It cannot be relied upon as a marker of how quickly the carbohydrate in a food will pass into your bloodstream at all. And for a T1 person playing at being their own pancreas, or a T2 attempting to eat in a way which helps their wonky metabolism this stuff really matters.

From a carb-counting type 1 perspective the proposed changes are also incredibly inconvenient. This fatuous obsession with the display of 'sugar content' means that prepackaged foods will, most likely, no longer display total carbohydrate content per portion, certainly not on the front of the packs. Sainsbury's made this change some time ago adopting a 'traffic light' system and it bugs me every time I need to eat something of theirs. I find myself scrabbling around on the back of the pack for the 3.5pt 'per 100g' details then have to fish out a calculator and endure some mathematic acrobatics to evaluate what my portion of a 326g pack will end up being in terms of carbohydrate. And it used to be just written there in big letters 'per serving'.

Of all the groups of people in the UK with a borderline obsessive interest in what food contains, the ones who stand with furrowed brow in supermarkets poring over pack labelling smallprint more often than perhaps any others are those living with diabetes. This initiative *could* have made our lives easier, it could have included GI indications as standard, and scored total carbohydrate as a proportion of Guideline Daily Amounts so that people went easier on carbs generally. Who knows - that could have saved 1000s of people from developing T2D in the first place if their metabolisms are already beginning to struggle. Instead we are stuck in the same old rut of sugar=bad, fat=bad, carbs=good which just isn't helping anyone.

I await next summer's pack designs with a heavy heart.

UK Food labelling consultation - have your say

Thanks to Dave (The Tangerine Diabetic) for his excellent writeup of Diabetes UK's Big Event (and also on Shoot Up or Put Up. Following his 'call to arms' I urge you to get involved with the public consultation on food labelling. The consultation ends on 6th August 2012. Have your say here right NOW!


Dear Sir or Madam

I have only today been made aware of the public consultation on the front of pack labelling as detailed here: www.dh.gov.uk/health/2012/05/food-labelling-consultation-launched/

Along with approximately 2.5 million other people in the UK I live with diabetes. I am one of the 250,000 or so people with 'type 1', the autoimmune version of the condition. As you may know food plays a pivotal role in the control of both type one and type 2 diabetes and in some senses knowledge about food eaten is as important as any medication taken - even injected insulin. I can't live without insulin, but I can't live without food either! Injected insulin needs to be balanced against the carbohydrate in food (that's all carbohydrate, not just sugar). Getting the 'sums' wrong in either direction can lead to unconsciousness/coma/death on one hand or blindness/kidney failure/amputation etc on the other. Food and diabetes represents a balancing act with both short term and long term perils waiting in the wings.

You have to to a LOT of back-of-pack squinting as a person with diabetes. I've been living with Type 1 diabetes for over 20 years and in all that time I can truthfully say that not a morsel of food has passed my lips without first being considered and evaluated in terms of its likely effect on my blood glucose level.

I would urge the committee to add more meaningful information to the front or packs by including CARBOHYDRATE rather than just 'sugar'. Even better would be a Glycaemic Index/Glycaemic Load indication (an average figure relating to how fast a food converts to glucose in the bloodstream). Both for people with diabetes and for those without *all* carbohydrate converts to glucose in the blood. What is not well known is that sugar, though it is energy dense, does not convert particularly quickly. Many foodstuffs sold as being 'healthy' and 'slow release energy' are in fact substantially faster to convert to glucose in the blood than sucrose (table sugar). Most 'healthy' breakfast cereals, for example are particularly poor in this regard. While this is of acute interest to those of us who are 'playing at being our own pancreas' it is also very important to everyone. Foods which convert rapidly to glucose cause a burst of insulin release and contribute to weight gain and cholesterol imbalance whether or not one has diabetes.

Adding 'Carbohydrate' to pack fronts, and indicating how disruptive a food is in blood glucose terms could be crucial in slowing and/or preventing many hundreds of thousands of people's slide into Type 2 diabetes, and would enormously help the blood glucose control of people already diagnosed.

80% of the NHS budget for diabetes is spent on treating preventable complications - helping people with diabetes make better food choices, and helping others avoid developing diabetes in the first place offers a significant opportunity to save millions and millions of pounds for the NHS at almost no cost.

Kind regards...

Rediscovering porridge

Someone I 'met' on a forum who started on an insulin pump a year or so before me said that in some ways she had to relearn much of what she thought she knew about her diabetes. Many tried and tested observations, and theories as to what was happening seemed no longer to apply. Switching to a pump so fundamentally 'changed the rules' that almost everything had to be evaluated from scratch.

I've had a glimpse of what she meant recently when I decided to retry porridge (oatmeal for US readers) as a breakfast choice.

I've always quite liked it in the winter and it has a reputation for being helpful cholesterol-wise. Mostly though it has a reputation for releasing its carbohydrate slowly and steadily which is very useful if you are trying to keep BG (blood glucose) levels after meals under control. For many years I ate cereals for breakfast, basing my choices on what I had been told - this is low GI, that is slow absorption, blah blah blah...

For many, many diabetic years I tested primarily before meals with ad-hoc other tests if I 'felt funny' or needed to drive. This was OK in its way, but never really let me see or evaluate what was happening after eating different foods. I didn't look at those choices critically enough for them to make any real sense. It was only really after 'meeting' folks with Type 2 Diabetes online who have food choices as their primary weapon in the struggle to control BGs that I realised how little I knew from testing about what to expect from different foods.

GI values are all very well, but they are only an average from a pretty meagre sample. And averages (as anyone with a BG meter can tell you) can hide a multitude of sins.

Having embarked on some after-breakfast testing a few years ago I quickly determined that all cereal is evil. There was just none that I found I could eat and remain in single figures (below 10.0mmol/L 180mg/dl) at 1-2 hours after eating. Porridge seemed a particularly bad example. I may as well have been eating jam.

So I concluded that for me porridge was not slow release at all, and stuck to Burgen soya and linseed toast with much better results.

I knew that at least part of the problem was a 'gap' in basal coverage that made breakfast particularly tricky time for me. I took my Lantus at breakfast time and while the last dose had faded and the next dose was still dragging its heels in 'onset' I had perhaps an hour with less basal insulin than I needed.

The pump of course, has fixed this. Continuous almost infinitely tweakable rolling patterns of basal insulin trickles can allow for the most challenging of basal requirements.

Once I had a basic basal pattern working OK I began to wonder whether I might be able to cope with a little porridge every now and then. The first few results are very encouraging. This morning I rose from 4.7 (85) before breakfast to 6.9 (124) an hour and a half later.

Porridge it seems is back on the menu. Score 1 for teampump.

Pumping for two months - A little bit of everything

Artoo and I have been pottering along for almost two months now, and what with the New Year and everything it feels like about time for a bit of a catch-up. 

Anyone reading who has watched my transition from pump-averse to pumper might be interested in how I have found it in practice. If you have wondered whether pumping might be right for you,  but don't really like the idea, I suspect this might be doubly so. 

Before Artoo and I hooked up I had read a lot of accounts of people who almost immediately felt 'at one' with their new robot pancreas. People who almost forgot it was there pretty much from day one and while most report that it takes a bit of work to get a pump set up and working well the physical 'attachedness' side of things seems to evaporate. I wish I could say that I felt just this way, but I don't. Not quite anyway. *Almost* all the time attachedness is of little or no importance. I've had nights of uninterrupted sleep. No-one around me has batted an eyelid whenever I've  disconnected or reconnected in public (at the gym for example). Now that I've worked a way of hanging Artoo horizontally on my belt I no longer get dug/pinched in the side every so often. But in spite of all that there are still a few times every day when being attached by a short string to a lump of plastic is a tiny bit annoying. Most regularly i feel this while getting changed, but also occasionally just getting tubing caught on things. I even managed to pull a set out while hoiking up my trousers one day. Almost nothing, but I certainly couldn't say that I 'completely forgot it was there after a week'. 

On the other hand, of course, I have already realised that the 24-hour attachment also offers distinct advantages. I arrived at a meeting not long after a meal only to find that some tasty nibbles had been provided. On MDI I would have had to politely decline, but because Artoo goes everywhere with me I was able to guess the carbs, bolus, and get stuck in! And lie-ins... Aaaaaah! Lie-ins. Since moving my basal injection to the mornings I had needed to keep regular morning hours whether work day or weekend, within an hour or so. But now that my basal is automatically following a predetermined pattern I can sleep in as long as I fancy. 

One thing I hadn't quite expected was how quickly the set-changes would come around. Every two to three days sounded like almost never compared to 4-5 times every single day. In reality though they are quite a bit more of a faff than a single pen-injection. The sets hurt a bit more going in. You have to be quite careful and methodical to make sure you avoid bubbles and so on when setting up the reservoir. Added to that every single set change carries with it a 2-hour period of uncertainty, anxiety almost. Has it worked OK? Is the insulin being delivered? As advised, I make the changes before meals to ensure a proper 'test' but this also means that any slight miscalculation in the meal bolus can look like a potential dodgy insertion. I'm getting better at sensing whether sets 'feel' right in the first few minutes and I've only had one or two that I've replaced within the first hour or two, but it's not something that applies on MDI. 

One peculiar observation from the first few weeks. I know two others who started pumping at almost exactly the same time as me and all of us had the same, rather odd phenomenon in the first few weeks. People often need quite a lot less insulin when pumping, so it's usual for your team to suggest a new total daily dose, basal and bolus ratios. In the first week these new levels behaved pretty well for each of us, but then, quite suddenly at around 7-10 days we found our BG results creeping upward and each of us had to significantly change what had worked fine the week before to establish a new 'normal'. Not sure of it's just coincidence, but if you are about to start pumping it might be one to watch out for. 

And what about levels? After all that's the whole point of the exercise... During these two months I've had a bit of everything. Normality, illness, gym, no gym and of course, every diabetic's favourite mental obstacle-course... Christmas. Even in these early weeks I can see improvements. Fewer hypos and fewer and lower highs. And I have to remind myself that I am comparing with MDI results gained while using the Accu-Chek  Expert, which (once I had it set up right) provided a general 'smoothing out' from the levels I achieved before that. 

I've had some spectacular successes, and a few (largely self-inflicted) disasters too. The subtlety of delivery options is a fantastic addition to the arsenal. I still need to do a little more experimentation, but already the potential is plain to see. Most obviously, almost none of the doses I give these days are in whole units. It's always a decimal point here or there, and while my carb guestimates may be no more accurate, at least the doses are more precise so it's one error rather than two. 

I had expected dual and square waves to be useful for 'tricky' meals, but I hadn't realised how handy they would be at other times. If I'm at the lower end of my range before eating I can just ease the dose in (or just a part of it) over 30 minutes to take the edge off. I'm getting better at remembering TBRs (temporary basal rates) too. I always knew these would be brilliant, but as my experience grows I've seen afternoons playing in the band (with a heady mix of physical effort followed a while later by bursts of stress and adrenaline) that I know from experience would have meant a hypo/high shuffle on MDI pass with bewilderingly serene BGs. Only a couple of days ago we ventured to Bristol's new 'all you can eat' world food market for a leisurely, and not insubstantial, slap-up food fest. Duals and squares (and a few good guesses) left me scratching my head when the awaited BG carnage failed to arrive. 

I've had disasters along the way. For every success there have been wrong guesses and hasty corrections needed. I think it's quite funny, given that it looks like Artoo may well give me my best year of control for a very long time in 2012 that my very first test of the year (at 0.58 this morning) was 17.8 (320). 

Ah well... What's life without a few ups and downs. 

Owning your targets

I replied to a forum thread today, and only as I was posting did it strike me that I've completely changed the way I view my blood glucose target range in the last year or so. A mother with a teenage type 1 diabetic daughter was expressing concern about the extra fingerstick blood glucose tests, basal testing etc that would be part and parcel of her move to pump therapy. She then said she had to text to remind her daughter to do a test, and text back the results. It made me wonder how that felt for a young person. Whether they would feel that the tests were for them at all.

And then I realised that was exactly how I had felt about these things too.

The recommended levels for adults with type 1 diabetes in the UK are 4-7 mmol/L (72-126mg/dl) before meals and less than 9mmol/L (162mg/dl) by two hours after meals. This is, frankly, a tiny target to try to hit. To be honest the permitted percentage of inaccuracy on a BG meter is 10%. So the meter itself is only accurate to one sixth of the target range some of the time. I've had 20-odd years of consultants telling me that I was 'doing fine', but 'should try to have not quite so many highs and avoid those lows'. I've always just smiled through gritted teeth at such comments. "There speaks a person" I would say to myself, "who has never tried to guestimate the carb load and absorption rate of a meal, and tried to match it precisely with the activity profile of an insulin injection, taking into account any abnormal activity level during the day." If they wanted me to hit their stupid target, they should have made the darned thing a bit bigger.

In a small, but incredibly crucial way though, my mindset has changed. The shift was so slight I only noticed it when trying to look at the same issue from someone else's point of view. The range, is still as tiny, but it is now my range. Whereas before I would grumpily think, "well that's just impossible... I'll aim for 4-12, but for you to ask me to do any more than that is just unreasonable" I now see 4-9 as my target for me.

I've never tested so much in all my 20 years with diabetes as I have over the last 14 months. I've never voluntarily gone without so many meals to check on my basal insulin's activity. In all likelihood I would not be doing so without meeting other diabetics online. Diabetics who hit their own tiny target ranges. Not every day, but often enough to prove that it is at least possible.

Once you understand that the target (whatever you decide that it is) is your own, all the effort required to aim for it, and let's not pretend that is isn't a LOT of effort, somehow becomes much easier.



Edit: Just re-visiting this post after several years and I have realised that in the time in between I have altered and changed my targets on more than one occasion. And this is fine too. Currently I'm finding 4-10 gives me less opportunity to berate myself over high readings with an additional soft lower limit of 5 which I will treat as if low to give myself a little more wiggle room. What's important is that I feel these are what I have decided to do for me. Not some impossible nonsense handed down from on high.

My DOC-iversary - 12 months that changed my life

You have changed my life.

It doesn't matter if this is the first blog post you've read or the thousandth. Whether you comment on diabetes forums the world over or lurk in the background of just one. The Diabetes Online Community is so much greater than the sum of its parts, and by reading this, whether you are diabetic yourself or just know someone who is (and frankly these days that is pretty much certain) you can now count yourself an official member of the D-OC. I'll pop a badge in the post to you. Get yourself a 'Blunt Lancet *' tee and wear it with pride.

As Jane wrote on Friday, this weekend is the anniversary of the unfortunate incident that triggered the birth of this blog and my discovery of the support, wisdom and hilarity to be found among online diabetics.

You have helped me to turn a corner with my diabetes. And I didn't even know I needed to turn it.

If you have lived with diabetes for some time and have just got used to 'the way things are', knowing really that this or that is not quite right, but unable to find any way forward. If your doctor seems happy enough with what you are doing, though suggests you should probably 'improve your control a bit', without ever seeming to be able to suggest any practical way to go about that (or at least none that you believe would have any effect). If this is you, as it was me, then take a look around. There are thousands of diabetic lives out there and someone will be going through what you are. Someone will have tried something that might work for you. Someone will post and answer to your forum question that will get you thinking. Someone will be there simply to offer support and understanding for the unfairness and frustration of it all.

In some sense the changes I have made are tiny. The improvements only marginal and fractional. But they have made all the difference to the way I feel about diabetes. Here are my top 5 discoveries from 2010:

1. Get your basal right
You can test this systematically, and until your basal is right everything else will be all over the shop. Your basal profile is not as flat as you have been told, and there are a number of timings and splits of dose that will work for different people. For pumpers, basal profiles are almost infinitely tweakable.
2. Count your carbs
Not something I learned this year, but something I was horrified to discover that others were not being taught. Utter madness.
3. Love your pancreas but watch out for your liver
Don't be too hard on your pancreas for rather letting you down on the whole insulin production front. It's still doing all sort of useful things digestion-wise. Your liver on the other hand probably needs a good talking to. Mine has a habit of gleefully dumping glucose into my bloodstream at the most in-opportune moments (dawn phenomenon or Somogyi effect anyone?). This can make test results seem chaotic and confusing.
4. Don't believe the hype
You might have been told which carbs release slowly by a dietician. You might be eating high fibre and low fat with 'heart-healthy' starchy carbs. Unfortunately though there is no way to tell what will happen to your blood glucose levels after eating something without testing on a BG meter. And there is nothing heart-healthy about constant post-meal BG spikes. The difficulty is that everyone is different. What is fine for one person will be a BG diaster for another. There are a lot of things I had believed to be 'safe' which I have dropped from my menu this year following 1 hour and 2 hour post-meal tests. Additionally diets high in carbs seem to lead to high cholesterol levels whether they are low fat or not. Moderation, as with so many things in life, seems to be the key.
5. One test at a time
Jane tells me I'm still learning this one. If you get a rubbish day/week/month of BG levels try not to beat yourself up about it. Write everything down, look for patterns, ask questions. Look online for others who have had a similar experience. Don't make changes too quickly, take your time and see if results are repeatable before you decide what you think is causing what. This is the hardest lesson of all. But I'll keep working at it.

I have an annual review coming up in a few months time. I'll be very interested to see if the improvement I feel in my day-to-day diabetic experience is shown in my HbA1c level.

Here's to the next 12 months of D-OC discovery.

Mike


* Blunt Lancet, 90's diabetic rock supremos created by US blogger Kim. Despite being more than a bit 'made up' you really can get a t-shirt (profits in support of the Diabetes Hands Foundation): www.cafepress.com/BluntLancetMerch