Night-time nonsense. Perfection isn't possible.

The darkest hour, just before dawn, yesterday

I stumbled across this little bit of research again today. And while I know I had clocked it in the past, and was aware of it - this time it came as a huge relief.

I have not been feeling altogether cheery about my diabetes of late. Off and on for something getting on for a year I have been feeling more than usually grumpy and disheartened about it. I have written (mercifully few) ranty grumblings about it every so often. Partly driven by a couple of clinic appointments where I somehow managed to spend the weeks before and afterwards twisting and distorting either real or imaginary conversations into spirals of judgement, impossible requirements and self-destructive behaviours. Quite reasonable and well handled suggestions suddenly becoming a cloud of frustration and rage in my head, and a lead weight in my heart.

Many people would describe this as 'diabetes burnout', but that always sounds a bit too dramatic and significant. Mine is perhaps more of a 'diabetes weariness', with occasional outbursts of 'OH FOR GOODNESS SAKE WHAT ON EARTH IS THE POINT'.

Diabetes is such a mind game. Confidence and self-belief count for a lot for me. I do better when I feel things are going better, and I am much more likely to go off the rails or make (deliberate/knowing) poor choices when my levels are all over the place anyway.

You may recall that one of the changes I had been trying to make related to my remaining overnight hypoglycaemia. Nothing like as bad as it would once regularly have been (I have not had any severe hypos either in the day or overnight for years) but time spent hypo overnight is still something I really want to reduce further. Well after the best part of a year, and having tried a whole bunch of different approaches (some disastrous, others not so bad) I'm not sure I'm very much further forward. Without continuous monitoring it's hard to be 100% sure, but it seems I will still dip below 4.0mmol/L at some point on something like 3 nights in a month. I am now running most of the other nights significantly higher and that has resulted in an increase to my A1c by something like 0.5%-1%. On the plus side though, my number of BG checks below 4.0mmol/L last month was slightly lower than normal (whatever normal pretends to be).

So some things are a bit worse. And other things are a bit better. Well that all sounds familiarly 'life with T1D' to most of you I'm sure.

But here is the thing - if you, like me, struggle with variability in levels overnight. There is a LOT we can do to reduce it. There are strategies that we can put in place to really help. But it will never be perfect.

And we have to find a way to make peace with that.

During the day, you can do your best to reduce variability - to make good food choices, to dose carefully, to make adjustments around activity and exercise. And all the time you can watch and check and see how you are getting on. Check. React. Adjust. Move on.

What this piece of research, published in Diabetes Journals in May this year, demonstrates though - is that overnight insulin requirements are likely to be even more variable than those during the day. Think about that for a minute. In almost 2,000 days and nights that were measured and compared there was more variability in insulin need overnight than during the day. More variation with NONE of the variations in food, activity and all the rest.

That doesn't mean that it is not worth trying, of course. We still need to do the best we can to make up for our errant pancreases letting us down on the whole insulin-production front. Keep checking, reviewing and adjusting. Throwing in the occasional overnight basal test every now and then ("Hooray!", said no one ever). But it is worth bearing in mind, if you are struggling this week, that you are not on a level playing field. What works well most nights might let you down tomorrow, and that is not your fault.

Perfection is not possible. All we can do is our best.

Link: http://care.diabetesjournals.org/content/39/5/830.short

64 Days with the Minimed 640G - A year on

Someone at Medtronic expressed an interest in some of us who video-blogged as part in their '64 days with the MM640G' trial to post a follow-up after a year to say how we were getting on. Well I slightly missed the deadline, but such is life at the moment. I still have a post waiting in the wings that I've been wanting to write since March. Somewhat unexpectedly I have managed to get it put together this week - partly because the battery state on my pump was right for something I wanted to share.

I still really like the MM640G. It's a bit big, it's a bit clunky, and it's a bit of an ugly-duckling in the looks department, but it still works well for me. And if I were choosing this week from the current crop of available devices, I would opt for it again. So much of it does exactly what I want... rock solid dose reliability, great handling of temporary basal rates and basal patterns, handy home screen showing most of what I want instantly. And if I could afford the wizardy of sensors I know from experience that I would love it even more.

Unfortunately, what tends to happen with me, the longer I live with a piece of diabetes technology, is that I find more gripes and niggles with it. So fair warning, this is a bit nit-picky.

So here you go... some moaning about repeat button presses, slightly over-cautious menu-language, that darned screen unlock thing, the flippy-floppy belt clip and, perhaps most importantly the battery check that will reject a battery if it has anything less than absolutely full charge.

Enjoy!

Watch the video

Appointments, priorities and the importance of buy-in

Well this is a bit unexpected - but I have been going through a bit of a weird patch over the last 8 weeks or so, and even though it's not one of the posts I have been struggling to get written for some time - I have decided to leapfrog this post ahead of the others and get it written while I it is still fresh in my mind.

Some ground rules before I start - I will try to keep the moaning to a minimum. Please bear in mind throughout that I really like my clinic, and value the opinion of the DSNs, Consultants and Registrars I see there. However, with something as complex, fickle and infuriating as type 1 diabetes, there will inevitably be some occasional differences in priorities, and sometimes this can lead to what we might call less-than-fun times. I believe it is crucial that any changes suggested in a clinic get genuine buy-in from the person with diabetes. And any previous negative experience of the suggested strategies needs to be given careful consideration.

To summarise 'life with diabetes' so far - I have always preferred to run on the low side than on the high side. Oddly enough the idea of dying with my feet still attached, functioning kidneys and still being able to see, rather appeals to me. Anyone who has read these witterings before will know that I have fought long and hard to reduce my exposure to hypoglycaemia, particularly Severe Hypos, with some success - I have not experienced severe hypoglycaemia for over 5 years now I think. What lows I still have are irritating, generally short lived and in the 3s. With a more serious couple in the 2s each month. But I do have more than I'd like. And I keep tabs on how many I am having each week/month to clamp on them if I start having more. The darkest shadow on my shoulder remains hypoglycaemia at night. Perhaps twice or three times a month I might drift below 4 and (according to Libre sensors) can stay there for several hours. This is a problem for me. It is a problem that the MM640G with sensors had pretty much entirely solved, but sadly that still remains out of my reach as a therapy option.

You may recall I wrote about a less than ideal appointment last Autumn. I confess I did not arrive at that appointment in the best of moods. As you will find, this is becoming something of a regrettable habit. Following that appointment, and full of all the encouragement that 'You are going to die of cardiac arrythmia' predictions will bring, I decided to tackle my lingering hypos more aggresively, particularly the overnight ones. I took more intense precautions in many more situations than I would have 'normally' done. Unfortunately, what I observed in my logs is that those lows are perilously hard to predict. I would take precautions using all my experience and judgement only to see my levels soar up into the teens overnight. Meanwhile I was still caught off-guard by lows when I least expected them. Nights with no obvious precipitating cause saw me wake up in the 3s. I kept it up for a good two or three weeks until I had got frustrated enough to stop. The percentage of lows per month was almost unchanged but my averages and variation went up markedly. I felt worse. I felt less on top of things. I went back to my 'normal' way.

But.

Of course, now I had let the cat out of the bag. In requesting access to sensors I had flagged up my problem to my clinic - and now they were worried about me. So I was called in for a more rapid three month follow-up appointment to see how I was getting on. Delayed by a couple of Junior Doctor strikes I actually went to my follow-up appointment on 13th April. We discussed the issues I had been having and their suggestion was blindingly simple - to take less insulin. I recounted my experience of trying to tackle these very overnight lows and how elusive they had been to tie down. That my attempts had made little difference to my monthly percentage of readings below 4, but had resulted in a significantly raised BG average, greater variation in results and raised HbA1c. Their opinion was that I had plenty of wiggle room in my A1c, which was (at that appointment) 6.7% - My opinion was more that the raised A1c and no significant reduction in the issue itself was less than satisfactory.

I wondered how high my A1c would have to be to prevent hypoglycaemia altogether (which appears to be their preferred scenario). Raising it by 11mmol/mol (1% in 'old' numbers) had done nothing - so how high would I have to go 8%? 9%? Oh no!!! not that high! Nowhere near... And yet I could not get past the thought that on the days when these overnight lows happen, I appear to need very little insulin overnight - to apply that approach to the other 28 or so nights in a month would inevitably result in consistently elevated BG levels.

I was given two options - to leave things as they were, or to try a small reduction overnight to see if it would help. They were persistent. Reluctantly I agreed. I suggested that simply dropping my basal pattern down one 'notch' would do nothing on those troublesome nights - if it was going to do anything it would have to be at least two notches (0.05u/hour).

My intention was to 'do it their way' for the next 6 months, and then go back for my next review.

The first night.

The problem
But herein lies the problem. I was reluctantly agreeing. I had tried this before and it had failed. I was not expecting it to work. In fact part of me was expecting it to fail. Perhaps even wanting it to fail? This was a problem I wanted to fix - but this did not feel like the right way to go about it. And the insistence that it was fine for my levels to be higher and my A1c to go up 'a bit' was not an encouragement - it felt like a separation between our priorities. To be clear, I know why they were suggesting it to me - from the outside it is almost something I can see myself recommending to someone else on a forum. I hate having these overnight lows. I want to be able to prevent them. But not at the cost of 90% of my overnight readings. I guess I felt trapped. Like I was doing something against my better judgement.

It probably didn't help that the first night did not exactly go brilliantly. 5.3mmol/L to 12.7mmol/L, and then a dip below 4 after lunch. A tried and tested lunch that I have eaten literally hundreds of times before. But I had decided to do it their way. So I continued.

And I am glad that I did. Because the second night showed a much lower rise. And two or three days later I *may* have dodged one overnight low because rather than a small (or very significant) rise in BG overnight I actually stayed almost level and woke at 5.5mmol/L.

I wish I could leave it there, with the problem more or less solved. But unfortunately that is not how it worked out.

Owning your own targets
I have talked before about the importance of owning your own targets - whatever you decide them to be. And here I was - trying to run my diabetes someone else's way. For all the right reasons, but following a plan of action that did not feel my own. Resisting my own management instincts to try to do it someone else's way. Watching my daily averages and glucose variation rise. Still experiencing a very similar number of low-level dips under 4.

And the more days that passed, the more the weight of running my diabetes against my instincts pressed down around me. As days turned to weeks any small early victories began to be swallowed by my rising, uncorrected, daily averages.

Type 1 diabetes is a grind. Type 1 diabetes is frustrating. Daily management can involve making hundreds of small interconnected decisions. And my aim is usually to attempt to get my BG levels to approximately mid-range by 3 or 4 hours after eating. Except now, I was aiming to avoid hypoglycaemia at all costs (not actually part of the original decision, but more reflective of multiple conversations over a number of years). So I was letting high BGs run. Sometimes all day. And still the lows peppered my results. Marginally less frequently perhaps... but adding insult to injury. Frustration grew. My mood darkened.

All in the mind?
After three or four weeks I knew I was struggling. But I had decided to run things their way for six months so I gritted my teeth and tried to carry on.

This was a mistake.

Way back in my diabetes dark-ages, there was a time where I would only test a couple of times every few days. It was not unheard of for Jane to ask me to test if I was behaving in an unsually grumpy, frustrated or short-tempered way. More often than not it transpired that I was running high. I find high BGs frustrating anyway, in that they usually suggest some sort of miscalculation on my part - but it seems that there may also be some physiological association for me between high BG levels and low mood, frustration, anger, dispair and feelings of helplessness.

Six weeks after my appointment I had reached the point where I was beginning to behave more erratically in response to my elevated BGs. I was either rage bolusing (significantly over-correcting out of sheer frustration) or rage snacking (eating rapid acting carbs without insulin in response to a moderately high BG - if I was going to be high, I might as well have 'earned' it). I was noticeably more angry and frustrated - it was beginning to impact on the family. I came to a point where I had to regain some balance.

And so I have switched back to doing things 'my way'. I'm not sure how much of this story I will share when I return to clinic in 3 months or so, as I really do not think they did anything particularly wrong. This post is more a question of me facing my own demons really, and how my reluctantly handing-over some of the control I had fought so hard to wrestle back from my diabetes, resulted in a spiral downwards towards disengagement and depression.

What have I learned?

• Owning your targets is crucial. T1D is too frustrating to try to play to someone else's rules.
• Where I recognise there are problems to address - I need to do it with strategies I actually believe have a chance of succeeding.
• That reducing basal insulin such that I get a slight rise overnight is not a disaster and may, very occasionally dodge a period of low BG overnight.
• That there are useful lessons I can learn from the first two weeks of the experiment which I can try to apply to my own self-management framework.
• That agreeing to do something in order to demonstrate that it doesn't work is a very silly idea when it comes to T1 self-management.
• That I need to be careful about my psychological and emotional state during periods of elevated blood glucose.
• It's your diabetes - trust your instincts.

Thanks, as ever, for reading.

Diabetes breakups

I'm sorry. I wish it hadn't come to this, but I'm afraid it's over between us.

I don't know why you are looking so surprised - you must have known this was coming after how things have been between us over the last few weeks.

We've been inseparable for so long now. Hardly a day has gone by in the last 5 years when I've been apart from you. All those times we've shared. All those adventures. All those scrapes we have got through together. And now it's come to this.

I know the polite thing to say is that this is down to me, but we both know that isn't the case here. It's not me, it's you. You've changed - and not in a good way. It's not just me that thinks so. Our friends have noticed the change in you too. And I'm afraid I can't go on living with you like this. You have let me down, when I needed you most. And then when I forgave you and tried to go on as before - you just went and let me down again, and again. And now I hardly even recognise you. I just don't know who you are any more.

Maybe you are looking for someone else? Someone with deeper pockets maybe? I hope you'll find someone for your future, but I know for certain that it isn't me - not while you are behaving like this.

And it breaks my heart, because we have been in this together for so long. Perhaps I came to rely on you too much? There were times when I thought I could accomplish anything as long as you were by my side. But now? Now I'm just waiting to be let down. Waiting to be abandoned. I can't trust you - and I can't be with someone that I can't trust.

I'm not angry I'm disappointed. And angry.

So I'm sorry, but I've found someone else.


For those who have *no* idea what I am going on about... after many years of faithful togetherness it seems that Fruit Pastilles (my pocket-based hypo remedy of choice) have changed their formulation. Over the last fortnight I've had to ditch large parts of several packets which became an unusable gooey mess covered in irremovable tinfoil, occasionally plastered to the inside of my jeans pocket. Nice. The worst discovery was during a training run for my forthcoming 10km road race in support of INPUT. Feeling a bit low and discovering half the remaining pastilles rendered useless 5km from home put me in a pretty tight spot for my run back.

Speed boats and oil tankers - Guest post for Diabetes UK

My ups and downs have been a little more up and down of late (read for most of this year, it's still early Spring, right?). Not exactly disastrous, but I've not really managed to ever get things into any kind of groove for more than a week at a time. A bit wearying to say the least.

Part of me knows the best way to improve things is to go back to basics and do some fasting basal tests and tweak my basal profiles based on actual information rather than the (un)educated guesswork I've been relying on for a while. Another part of me is having enormous difficulty summoning up any enthusiasm, since I know that the summer holidays are coming and I'm likely to stop going to the gym for a couple of months which will have a knock-on effect in itself.

So I'm spending my time grumbling and hurrumphing instead (my family are so lucky!).

On the plus side it does give me a chance to jot down this analogy that I've been meaning to for some time. It's something that usually strikes me when my BG levels are a bit errant, and insulin and food are just not playing nicely.

When it comes to trying to balance the effects of food and insulin on blood glucose levels (well and everything else.. but specifically food and insulin), one thing that makes it very tricky is the difference in the speed of action of carbohydrate and insulin. It's not enough to accurately match the dose of insulin to the amount of carbohydrate you are eating - you have to try to ensure that the two act more or less together to reduce BG wobbliness (technical term).

Almost all carbohydrate is very much in the speedboat class. Fans of glycaemic index tables (GI) might agonise over whether something is high GI, medium GI or low GI, but in my experience the differences equate to something being 'almost instantaneous', 'really very fast indeed' or only 'very fast'. Not a great deal of protection against the ravages of a post-meal spike, either physiologically, or that emotional kick in the guts of seeing your levels rise from a decent pre-meal number well into double figures an hour or so later. From the very first mouthful those big outboards start roaring and the carbs go zipping and zooming about, gleefully spraying glucose in their wake.

Insulin, on the other hand - even the fancy schmancy 'rapid acting' analogues can seem painfully slow to get going. More like one of those behemothic oil tankers or container ships. With a great groaning and clanking, the thrum of the plunger on an insulin pen or pump delivers the dose and then... Nothing. Watch and wait. Is it an illusion? Is it actually moving yet? Nope. Still can't see anything happening.

Vooooom! Swish! The carbs go tearing past again. Running rings around the slumbering giant.

This is particularly the case for me when I am waiting for a correction dose to kick in. I've had to stop myself from checking post-correction BGs before an hour has elapsed. Any less than that and the chances are my BG will be almost unchanged. An hour! Thanks Novo Turgid - not exactly breakneck.

Of course... one of the things about an oil tanker is that once it is moving, there's not a lot you can do about it. All those stories about them needing however many hundred nautical miles to slow down or turn a corner. And so it can feel with rapid insulins.

Nothing... nothing... nothing... Ah good, movement! Good... All good, back into range. Right that's enough now thanks... STOOOOOOOOOP!

But on and on, the dose lumbers forward - an unstoppable force. All-ahead full. The tanker has now run straight over those speedboats crushing them to matchwood and we could very well be steering directly toward Port Hypo.

Corrections can be a tricky course to navigate. Artoo tries to help by offering a suggestion of 'Active insulin' - how much dose is still working away, but there are *many* variables to factor into that equation. Sadly I find Artoo's attempts to be the vaguest of indications at best, and often wildly inappropriate to the particular circumstances of the moment.

Patience is the skill I have to master. I am always trying to remind myself that while the spike in my blood glucose levels may have happened in only 45 minutes or so, the insulin correction will only have stopped after something like 4 or 5 hours. If I get impatient and overcorrect in the meantime I am likely to cause myself another problem (and more wobbles) by overdoing it.

Aye aye, Cap'n.

Type 1 Diabetes - a 30 second guide for busy journalists and scriptwriters

Too busy even for the introduction? Click here!

OK. Enough really is enough.

Over the past 24 hours I have seen a *lot* of comment about a piece published in a major online newspaper site yesterday. It is a site that often seems to struggle to get the basics of diabetes the right way around - and it is not the only media resource to struggle, not only that, but TV and movie scriptwriters usually get it just as wrong too. I guess it's understandable... before diagnosis I knew *nothing* about T1 Diabetes either. But if you are going to write about it, it would mean an awful lot to all the people living with the condition if you could just spare 30 seconds to get your head around the basics first.

The story concerned a woman who was forced to leave a popular high street fast food outlet because staff mistook her insulin injections for drug abuse. Thankfully it was rapidly corrected by the site in question following a slew of complaints from PWD. The following snippets have been quoted elsewhere from the original version:

"Sarah P, 36, ordered a Big Mac from the fast-food chain last Friday and used her EpiPen to inject herself with insulin to increase her blood sugar level before tucking into her meal."

Type 1 diabetes accounts for ten to 15 per cent of all people with the condition and if they do not inject enough insulin through the day it can lead to a state called hypoglycemia."

I've marked the obvious errors in italics. Inaccuracies that might cause fatalities elsewhere if someone decided to be a 'have-a-go First Aid hero' are marked in bold. I am given to believe the full article contained many more.

I realise that journalists are busy people, so I've put together this 30-second guide to Type 1 Diabetes. That's a full five seconds per bullet point and five seconds to rest at the end.

1. Type 1 diabetes is an autoimmune condition unrelated to diet or lifestyle and while commonly diagnosed before the age of 18 can occur at any age of life.

2. Successful management of Type 1 involves avoiding both hypo- (rhymes with LOW) or hyperglycemia (HIGH blood glucose)

3. Insulin drives blood glucose levels down.

4. Carbohydrates (especially sweet/sugary/non-fatty foods) push blood glucose levels up.

5. Almost all 'emergency' situations the public will encounter are likely to involve LOW blood glucose, treated by a sugary drink, glucose tablets, fruit pastilles or jelly babies. Administering insulin under these circumstances is potentially fatal.

So there you go. Not too hard was it? Feel free to pop off and have a celebratory tallskinnycappufrappuwhatnot.

It's all about the balancing act to keep the little green ball in the diagram above centred between the two bars of nastiness. Too much insulin and blood glucose can fall to a level where the brain cannot function properly leading to confusion and sometimes convulsions or unconsciousness. The remedy is simply to raise blood glucose levels with something sweet. Preferably liquid. Hypoglycemia, low blood glucose (if you still don't get it, think hypo-allergenic) is usually swiftly treated by the person themselves, but if you come across a Type 1 behaving very oddly or aggressively, not making sense, slurred speech and sweating profusely - the chances are all they need is a few swigs of Lucozade and in 10 minutes they'll be as right as rain.

Hyperglycemia, high blood glucose (still struggling? think hyper-active) is usually caused by either too much food or not enough insulin. It is annoying, but does not usually present any immediate danger - apart from the fact that the T1 in question is likely to be a bit grumpier and thirstier than normal. Long term though, over several years, it can cause all sorts of nasties... blindness, amptuation, stroke, kidney failure, neuropathy and a host of other 'diabetic complications'.

Of course there's quite a bit more to it than that, and before anyone chips in, yes of course I realise that there are some very urgent medical situations that involve high blood glucose levels leading to DKA, but let's just get the basics in place first and then work from there eh?

If you are hungry for more detail you could always download the Diabetes UK "Reporting on Diabetes: A Guide for Journalists"

Annual reviews and first appointments - A guide for junior Doctors,trainee DSNs and other HCPs

To state the ridiculously obvious - Type 1 diabetes is not always very easy to live with.

The relentless requirement to monitor, juggle and account for a hundred-and-one variables (food, doses, exercise, weather, stress, hormones... you know the drill) while trying to live a relatively normal life day to day can be quite a frustrating business.

It is a great comfort to know then, that we have a number of ferociously clever and wonderfully kindly professionals that we can regularly visit who are dedicated to supporting us in our daily battles with the big D. Most of us will only get a precious few hours a year to receive this input, so it's important that we can make it count.

A month or so ago someone who I consider to be quite a good friend (which is odd really since our contact has only ever been of the remote and electronic variety) shared an experience of an appointment with a young and perky Registrar which, from what I can gather didn't work out too well. I think it's fair to say that my friend has now - some weeks later - just about managed to come down from apoplectic-teeth-grinding rage into the significantly calmer strangers-crossing-the-street-to-avoid-thunderously-angry-expression.

This got me thinking about what it is that we long-term pancreas-impersonators (or newly diagnosed for that matter) might hope for out of our precious appointments. If you've not done many D clinics before (or even if you've been running them for years!), here's what I would hope you would bring to the party:

Hello
First impressions count. I've met a lot of HCPs for first-time appointments and you would be surprised how many don't introduce themselves. It's a busy clinic, I realise I may never see you again, but it would be nice to know who you are.

Please, please, please just take a moment before I come in to skim read my file. If you are checking that information is up to date then be a bit careful of how you ask those questions. "So... you have type 1 diabetes?" might seem innocent enough, but some people you will be seeing might have been living with their condition for longer than you've been alive - so it's not really a question that needs to be asked. T1D isn't really something that's going to go away. Know my type. Know how long ago I was diagnosed. Know what direction (if any) my HbA1cs have been moving recently and what insulin(s) I am using. If you are checking records for accuracy and up-to-dateness, tell me that you are checking. Otherwise I'll think you are an idiot.

It isn't your fault
This is slightly unfair, but I'm afraid there's nothing to be done about that. You have no way of knowing what sort of horrendous appointments I have endured in the past (I haven't actually, but many have). The last thing we both want is for the steel shutters to come down behind my eyes and for me to descend into 'smile-and-nod' grunting, just waiting to leave - that will do neither of us any good. Here are a few of the states-of-mind in which I have arrived at appointments over the years:

• I have identified a problem or issue and I have no idea what to do about it. I'm hoping for suggestions.
• I have identified a problem or issue and I am working on it. Your suggestions might be something I've already tried and found not to work.
• I have identified a problem or issue and I think there's a gadget/change of insulin that might help.
• I know things have been going OK recently and just want my results, thanks.
• I know my results are a mess and hope I'm not going to get some kind of telling off. Don't you understand how impossibly difficult this is to do day to day?
• I'm past caring, nothing I am doing seems to make any difference and previous clinic suggestions have just made it worse - I would ask about psychological support, but what's the point?
• I don't have time for this and want it to be over as soon as possible.

You will need to develop a forensic, interview technique to glean from my merest eyebrow twitch which of those states-of-mind I am in. Alternatively - you could just come right out and ask me at the start - there's a thought. Ask open questions, be interested in the answers. Diabetes is not always textbook, you may know a lot about diabetes that I don't, but I'm the one muddling along with my diabetes 24 hours a day. As we say in the DOC - Your Diabetes May Vary. Most often I'm not expecting you (or even wanting you) to give me definitive answers, but rather to suggest strategies, principles or techniques that I can try out. And be asked about what sort of level of support and follow-up I want.

Not a number
I am not my numbers. I am not my A1c, my high this day, my low that day. These are information, but they don't define me and certainly don't necessarily represent the amount of effort I am putting in. Ask me what I'm aiming for, and why. If you think my A1c is too high or (too low) don't say anything until you've found out what I think about it. Ideally you've already picked up some story-so-far clues from my file (see 'Hello'). There is always ALWAYS something to improve. I want us to work together to make my numbers just a little bit better by the time my next appointment comes around, but I don't need telling off. Ever.

Questions, questions
Questions are your friend - I know you know this already, but it is worth restating nonetheless. Ask me what I am looking for. Find out what I am already doing (or considering starting) to try to reach my goals. That way you'll be in a better position to give me some really helpful pointers. You'll realise, of course that I may have come in with my guard up. You might have to tease the truth out of me, but asking the right questions will make us feel like more of a team - that you are on my side. Be especially careful if I have brought in any information, charts, print-outs and so on - you would be astonished how often these carefully prepared sheets are simply brushed aside. Pay them attention - ask me if there's anything I've spotted that needs looking into. If you spot what you think is a pattern, ask me whether I think it is significant and if not, why not. Sometimes type 1 diabetes is just random and frustrating, but a fresh pair of eyes and a healthy discussion about tactics and options can be just the thing to open up a new line of experimentation. Think of yourself as a top-flight Premiership football coach. Talk to me about strategy, technique and tactics rather than how far to kick the ball.

Never assume I know something
You may be up to speed with all the latest diabetes management techniques and fully immersed in decades of diabetes research. As a long-in-the-tooth patient, you would be forgiven for believing that with all my years of experience I am bound to have come across all this knowledge already. Carb counting... basal testing... dawn phenomenon... difficult foods... correction and insulin:carbohydrate ratios... I may know about these, but ask a carefully phrased question to assess my current approach to challenging day-to-day management situations in order to fill in any blanks I may have in technique and understanding. Once again the questions are crucial - otherwise we are into dangerous chicken-ovulation-inhalation territory.

Never assume I know nothing
Obvious really. But few things will sour our fledgling relationship quicker than you assuming that I have no idea what I'm doing. You never know... I might be one of those people who has read many of the academic research papers that are freely available online these days. I might have spent time keeping up with developments in technology, treatment and even the minutiae of NHS funding options because this stuff really matters to me. I may even have some interesting opinions - it won't hurt to ask.

Never assume. Anything.
That's your 2 second 'lift test' right there. If this is the only bit of this post that you remember, then we'll get along fine.

What about anyone else? Any hints and tips for HCPs for the perfect first appointment? As ever, comments welcome below.

Diabetes is very annoying - a pointless rant

Just wanted to join with all of you who have recently felt

AAAAAAAAAARRRRRRRRRRRGGGGGGHHHHHHH!!!!!!!!

about the ridiculousness of your D.

I've been having a few unexpected low-level 'dips' recently. Not really hypos exactly, just a few readings under 4 where I wouldn't expect them. And the more of those I have, the more highs I seem to have too. Not ideal. Figured it was probably basal/warmer weather related, so thought I would do some basal tests.

First day I tried to do 'lunch - eve meal'. But I had a 3.7 mid morning after a gym visit so scrapped that idea.
Second day I thought I'd do 'breakfast - lunch'. Woke up to a 3.4. Hopeless.

On Monday evening this week I took the bull by the horns and took my entire basal pattern down by '1 notch' just so I could get some basal tests in.

I've spent Tuesday and Wednesday battling relentless highs. I did manage to get a semi-basal test in yesterday afternoon, which was inconclusive. I've gone from 'a bit too low' to 'pretty much continually too high'.

Woke to 10.8 this morning having gone to bed with what Artoo assured me was exactly the right amount of IOB to deal with my 10.6 at bedtime.

So now I'm back to where I started - basal back down again.

The really annoying thing is that I have two basic basal 'patterns' running. One for weekdays, the other for weekends. Initially this was just to account for waking up a bit later on Saturdays/Sundays, but 'weekend weirdness' soon meant that the weekend pattern was tweaked down and is now regularly only 80-90% of the weekday one. Even when activity levels seem identical I just seem to need less basal on weekends.

It's incredibly frustrating to have to fight relentless highs with a basal of 11.8u a day on Tuesday, when 10.6u on (Bank Holiday) Monday didn't result in those stubborn highs at all.

Less insulin = lower levels. More insulin = higher levels. Madness.

I think this is what grinds me down most about living with diabetes. Where on one week you put the effort in, count carbs, make corrections and levels behave themselves really nicely. But then another week you put in exactly the same amount of effort and use exactly the same approaches for the same meals that you know work well (because you experimented for ages to get to that point) - except that this time it just doesn't work.

And I pretty much know that my basal being 'out' causes this. And trying to fix it so that I can actually test basal has given me the high BG grumps.

Deep breath. Try again.

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.

Dear Medtronic...

Apologies in advance for this really very dull, slightly ranty post on the intricacies of the user-interface on the Medtronic Veo.

I've been having a fairly turbulent time with the old 'goalpost chasing' diabetes game recently. For a month or two my BG averages were climbing... then I hit a patch of a few more lows than usual. At the same time I was in the run-up to my first ever Pump Clinic (which is tomorrow, more on that later) so I was preparing with a few basal tests. These confirmed what I knew already. My basal requirements had shifted. Again. Actually it seems they had shifted several times in opposite directions, and I was still playing catch-up.

This is nothing new of course, it happened to me all the time on MDI too. Before I came across the technique of 'basal testing' I would have attributed these chaotic readings as 'diabetes randomness'. These days, when meal doses and corrections start misbehaving for no apparent reason, a basal test is often my first port of call. With Artoo by my side I have the wonderful ability to quickly try a general raising or lowering of basal even before I have the opportunity to run a proper, detailed basal test. Illness is another time when these Temporary Basal Rates (TBRs) really earn their stripes. For a period of a few days, you might need 10%, 20% or 30% more basal than 'normal'.

For a period of a few days.

I'm not sure what the fine folks at Medtronic think people will use a TBR for, but it doesn't seem that they have considered that option. Well some of them clearly have, because you can set a TBR for up to 24 hours on the Veo. But... Inexplicably, someone decided that the pump should 'warble' at you every hour, day and night, that a TBR is set. If you set it to vibrate it makes several long buzzes. If you set it to short bleeps it's a series of three little 'pips'. Day and night. 24 hours a day. To tell me something that I already know. I have taken to wrapping Artoo in bubblewrap overnight to try to save Jane's sleep (I can sleep through anything, Jane is not so lucky).

It gets worse.

That pip-pip-pip is the only warning sound I get. If I glance at the pump screen there is a hollow circle too (I'll come back to that), but after, say 12-48 hours of illness/TBR you phase out the hourly pip-pip-pip during the day. If during that time you got a 'no delivery', 'low reservoir' or other alarm you would not even think to check what it was because your pump is just intermittently bleeping through the day anyway.

Now continuing with illness as an example... during that time you might generally need more basal, so you set a TBR at 120% for 24 hours. Then you do some activity (gardening? alligator wrestling? route march?) which in your experience usually needs a basal reduction. So now you want set a different (lower) temporary rate for a few hours, then return to your 120% TBR for illness (are you still with me at the back?). What you really want, is to be told when the TBR finishes, so that you can take action then and readjust. But your TBR will end with not so much as a bleep or warble. Nothing. The only time I want Artoo to tell me about a TBR (preferably with a different sound to the more 'serious' alerts) and he stays entirely silent.

The TBR chime is SO unhelpful. It contributes absolutely nothing to the pump user, and actually can potentially obscure/conceal a 'real' alert. I have no idea what is it doing there.

To add insult to injury, however loud those TBR warblings seem to be at 3am, they are pitifully quiet during the day. As a back-up notification on the Veo, there is a hollow circle at the top of the screen that tells you that an 'alert' condition exists. If it's very serious (eg the pump is in Suspend and no insulin is being delivered) this circle is filled with black. This means that at a glance you can see if there is any kind of problem with pump delivery. Very useful you would think... Sadly, again the overlap between 'alert' and 'condition' lets Artoo down. I can choose between up to three basal patterns. Currently I have them set for 'weekend' (waking later) and also for roughly 120% of normal which seemed to be where I settled during the holidays when gym visits fell away. When I'm on 'normal' I can check for the end of a TBR (or another alert for that matter) by looking for the cicle. But... the hollow circle is also used to show 'different basal pattern'. So basically during any weekend or holiday period the circle shows all the time on Artoo. And is therefore useless.

Now don't get me wrong. I think the Veo is a brilliant piece of kit. It is very easy to use and superbly intuitive. Oddly that makes these very strange/illogical/unhelpful UI decisions even more irritating.

So please, please, PLEASE! Medtronic, when you revisit the next version of the Veo: No pointless hourly TBR twittering (or at the very least make it optional so users can turn it off overnight). A different alert sound to identify the end of a TBR. A tiny 'A' and 'B' in a corner of the screen to denote alternate basal patterns. Oh, and the option to increase the volume of alerts so that they can be heard outside of a monastery/library setting would be very helpful too.

Tch! Some people are just never happy :)