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 Medtronic 640G: Ep 8 Fine-Tuning SmartGuard

For all the times when SmartGuard has worked brilliantly for me (and there are - too many to count), there have also been a number of situations in which it seemed to make a bit of a mess of things. Overshooting and leaving my higher than I'd like... kicking in when a hefty carb load was just about to arrive and stopping basal for that 30 minute minimum (during which time I would be having a high glucose alert)... or cancelling various parts of dual and square wave boluses which I then may not spot until slightly too late.

I'm sure each user would have their own list - but these are my own #SmartGuardFails and some of the techniques I have tried to fine-tune the alerts and levels to work around them. It's interesting how irritating these odd occasions can be, and I suspect it is only because, well for me anyway, SmartGuard has worked so *brilliantly* for so much of the time that they really stand out.

If you have any MM640G SmartGuard tips and tricks of your own (or any other comments or questions), please leave a comment below.

64 Days with the Medtronic 640G: Ep 7 Overnight Hypoglycaemia

Those of you who can remember way back when this blog started (if you even exist, you have my undying affection for your extraordinary stickability) may recall that we were prompted to start writing a blog about my diabetes as a family after a particularly nasty overnight hypo. It was the beginning of me realising that I was *nothing* like as good at the whole 'pretending to be my own pancreas' lark as I had managed to convince myself that I was. I began to realise how much I didn't know, and that one event led me to connect with literally thousands of others wrestling their own diabetes into submission every day. My life, and particularly my diabetes management are very much the better for it.

Overnight hypos have been a bit of a recurring theme throughout my 25 years of living with type 1 diabetes. I am lucky in that I have never needed paramedic callouts, but there were many times along the way when Jane had to step in at breakfast time to 'bring me round' in the years before we started writing this blog. I look back at those early posts and am bewildered and ashamed that it took me quite so long to realise how much effect this was having on everybody else in the family. How unfair it was on them. At the time though, I guess I had convinced myself that my management was 'as good as could be expected'. I knew I was having 'A few too many highs... a few too many lows'. But doesn't everyone?

If you are the sort of person who approaches anywhere near 8 hours a night when you live with type 1 diabetes, you are spending fully a third of every day in the land of nod. That is an awful lot of time for things to go wrong - especially if your basal insulin dose is not adjusted correctly* or your requirements have moved since you last checked. You may be lucky enough to get clanging warning signs when you dip below 4.0mmol/L - enough to wake you up and sort yourself out. But you can't rely on them. And the more and longer the periods you spend below 4 during the night, the more of a hammering your hypo awareness will take and the less you will feel them. A classic vicious circle.

I am coming toward the end of my 64 days with the MiniMed 640G now (Medtronic have kindly allowed me to keep hold of their toy for a little while longer as there are a couple more posts I'd like to put together). Today seemed like a good opportunity to gather some of the snippets of video that I've been filming since the beginning and edit them into a 'SmartGuard vs Overnight Hypoglycaemia' post. Has Smartguard made any difference? Has my overnight hypoglycaemia reduced at all?

Watch the video below to find out what has been happening over the last 9 weeks. As always, I'd love to hear your comments or any questions, please leave them below or post on my Youtube channel.



*During the video, I mention how important I have found the concept of basal testing over the last few years, both on MDI (multiple daily injections) and also on a pump. Systematically testing and adjusting my basal insulin on an ongoing basis helps me to keep my meal doses and corrections working more or less as I expect them to (ha!). It was one of the most significant 'new concepts' I discovered when I first started comparing notes with other people with type 1 diabetes online. If you'd like to know more read this post by Gary Scheiner (Think Like a Pancreas) which explains the principle. It is written for pump users, but would be easy to adapt for once- or twice-daily basal insulin injection on MDI.

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.

Running. Battles.

It's been a busy old time recently, and updates on the blog have taken rather a back seat. Sorry about that!

I realised this week (on Monday in fact) that I had not yet even managed to post an update following my Half Marathon shenanigans in Bath exactly two months ago today. Shocking!

Part of the reason for this post is to say an ENORMOUS thank you to everyone who donated so very generously in support of my race charity Diabetes UK, in fact your generosity was so apparent that I was also able to donate to Medical Detection Dogs (the tiny charity that is able to specially train clever pooches to sniff out hypos and hypers). In total you raised the mighty sum of £685.50, you should feel very proud of yourselves, you rock!


Ready for the off at the Bath Half 2013I had a great time on the day itself. It was bitterly cold at the start where everyone stood shivering for about an hour, but the mood was very cheery nevertheless. It was my first distance race of any kind, and I think I had naively underestimated the experience of running among something like 11,000 other people. It took much longer than I'd thought to find space enough to run at my 'own' pace. I was able to finish the 21km (13ish miles) in 1hr 46 mins, which is just about as fast as I ever thought I'd be able to do it.

I think the D fairy must have been having a day off that day, as my levels were bewilderingly good. The race started at 11am, but even so I reduced my breakfast dose to 90% of normal. Thanks to Artoo I was able to set a TBR which took my basal down to 10% an hour before the start and throughout the run. My levels on the day looked a little like this:

3.00am - 7.3
8.00am - 7.5 Breakfast
9.30am - 7.9 waiting to start
1.00pm - 7.0 Finish! I downed a 60g CHO bottle of lucozade on the way round
2.51pm - 6.8 Lunch

To say I was pleased with those is a bit of an understatement! I wondered at the time if perhaps I should run a half marathon every day?

As is the way of things, it has taken me a fair old while to get the last few donations collected, but the cheques are now on their way to the respective charities. Immediately after the race I'd found myself reflecting on the unexpected enjoyment I'd found in the training, but thought I wouldn't hurry to take part in another event. Then a *very* odd thing happened. Last Sunday was the London Marathon, and I actually found myself thinking, "Well... I wonder if I could...". Encouraged by Dave and his tangerine enthusiasm I have unexpectedly put my name forward for the 2014 ballot. The chances of making it into the event are pretty slim - but it would be an interesting challenge!

The rest of March and April have been a bit of a mixed-bag levels wise. March, and Easter in particular involved quite a few family get togethers and celebration meals which are always fraught with guesswork and wild stab-in-the-dark boluses with all the (lack of) success you might expect. April looked to be a little more settled in patches, but by the end of it a few chaotic days had worn me down, wrecked my averages and SD and I ended the month feeling quite grumpy about the whole unrelentingly inconsistent business.

Part of me thinks I am pushing myself too hard and need to learn to be happier with the successes I am seeing rather than contantly reaching for those elusive 'perfect' days. Many people who have lived with Type 1 Diabetes for any length of time will be familiar with that feeling I think.

I've decided it's time to run a few basal tests during the day just to make sure there is nothing obviously wonky on that score. A tiny dip below 4.0 after the gym has put paid to that for today. Ah well.

Enjoy your Bank Holiday everyone!

Unexpected consequences of pumping

Thanks to everyone who has been tweeting to ask how my first few weeks of pumping have been going. Very much appreciated. Sadly I've not really got time to write a post in any kind of detail today (inevitably work has gone crazy because I've got some time off booked before Christmas).

I always knew that the first few weeks would be a bit of a rollercoaster, and so they are proving. I've had a bit of everything really, mostly unexpected highs and one or two lows (a mix of user error, dodgy sites, bubbly tubing and general set-up shenanigans as far as I can tell). I've had ketones* for the first time in I can't remember how many years. I've had absolutely amazing support from my DSN who has been on the phone and emailing regularly to see how things are going. I've also had great support and encouragement from you lovely people in the DOC. It feels a bit odd to have 'friends' that you are never likely to meet face to face, but who nevertheless go out of their way to send positive vibes from hundreds or even thousands of miles away.

My first week on insulin went really quite well. I made a few tentative basal tweaks and generally got used to things. I'd expected to need less insulin on a pump, as this often seems to be the case and for the first week my Total Daily Dose was perhaps 60% of what I'd expect on MDI.

This week has been a little different though. A little unexpected. I've managed to fit in a basal test, but have been fighting high BGs much of the time. It seems that the basal doses and insulin:carb ratios that worked fairly well in week one have failed dramatically. Interestingly I have been exchanging tweets with the mum of a new pumper whose son went through exactly the same thing after about 10 days. My total basal dose is now back to almost exactly what it was on Lantus.

Another unexpected consequence was my first delivery of sets and reservoirs from Medtronic. I'd been advised to get around 3 month's worth and good grief! That's a lot of stuff! I'm going to have to find somewhere different (and significantly more spacious) to keep all my spare diabetic gubbins.

More updates to follow. As fellow newcomer to #teampump Dave would say, keep the faith.

* Ketones are poisons that can build up in the bloodstream when blood glucose levels run high/insulin levels are too low for any length of time. Risk of Diabetic Ketoacidosis is one of the things you need to watch for when pumping since you have no long-acting insulin sloshing around to get you out of a fix.

Changes, uncertainty and what to do next

I had my appointment through for my Annual Review a few days ago (due early April). A change of staff at the clinic has meant that they have got rather behind. A week or so ago I called to see how things were going and I was offered an appointment in a cancellation slot. As a result I guess I'm feeling that this appointment represents my 'chance' to make some changes that I've been mulling over and I want to make the best of it.

For many years I just attended my annual reviews in a smile and nod frame of mind. If I mentioned a problem, whatever response I got was either something I had tried myself and knew didn't work, or seemed to relate to an entirely different set of circumstances. These days I like to go armed with a few thoughts, questions and, sometimes, requests for new things. This is easy enough when you have heard of a thing that seems to solve, very neatly, a problem you are having. When I had a period of time struggling to remember whether I'd injected or not, a pen which recorded doses and timings automatically was an ideal solution.

So ever since my appointment came through I have been wondering what to do next. There have been whole weeks recently where I've been grin-inducingly happy about my levels. Weeks with no hypos at all. Weeks with very tight control and few if any results outside my target range. Periods where I have felt that I'm winning.

But the weeks when it is not like that suggest that it can be even better.

I've been wondering about my basal for almost all of the time we have been writing this blog. If you are a regular reader, you must be sick of it. The problem is that sometimes it works brilliantly. And sometimes it doesn't. There is an alternative analogue basal (Levemir) about which I have heard Very Good Things for a long time. One of the apparent benefits of Levemir is that it is more responsive to change than Lantus, which can take a day or two to settle into a dose change. Another factor is that it can work well split into two doses. I tried this with Lantus but it didn't work for me. A person's basal requirement is unlikely to be exactly uniform throughout the whole 24 hours. The opportunity to have 2 phases of basal insulin, perhaps one with a bit more, one with a bit less, combined with the rise-and-fall activity profile of the insulin itself gives you a few more options. The job of basal insulin is to hold you steady while your liver is deciding whether to trickle a bit more or a bit less glucose out at that time of day.

Of course the most flexible, tweakable and tailorable basal pattern would be achieved with a pump. To be honest the most flexible, tweakable and tailorable delivery of any insulin would be a pump. About a year ago I wrote a post about not wanting one. In the 12 months since, I've changed my mind perhaps 100 times about whether pumping is right for me. That's before we even get to the question of whether or not any funding-application I made would be supported.

In the last few weeks it's been going round and round in my head again. Benefit. Drawback. Benefit. Drawback. I think I'm now prepared to accept that the fear of 'attachedness' would come to nothing. Everyone seems to have it beforehand, and no one seems to care after about a week. At least not enough for it to detract from the positives they are experiencing. But I still do have genuine concerns over delivery failure and finding good spots for an infusion site (one side of my abdomen is a bit dodgy absorption-wise with some lipohypertrophy from years of lazy overuse).

At the end of the day it feels like any change in regimen has a benefit vs hassle balance that needs to be weighed. If I went Levemir I'd be adding an extra basal injection at some point in the evening. Mostly this would be fine, but some nights it could get right in the way. And any change of insulin would require a fair bit of faffing about getting the doses and timings right. I could, unlike Lantus, get access to a 0.5unit delivery device which recent experience suggests could be well worth having.

Switching to pumping, of course would involve faffing of a whole different order of magnitude. But the potential benefits that I've read about so often still shine out from behind the wall of uncertainty and concern in my head.

I just don't know.

Update: D-Art Day : The path of least resistance

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

Basal driving me bonkers

This is ridiculous.

Perhaps I've brought it on myself with a few smug posts about feeling that I'm doing a little better lately, and how I finally seem to have wrestled Lantus into submission, but diabetic readers will be unsurprised to know that it's gone a little pear-shaped over the last few days.

Most annoyingly of all, my recent successes with Lantus have evaporated and I've been waking to early morning test results around 3.5mmol/l again. Starting the day a little low invariably has a knock-on effect for my control for the whole rest of the day for me, and I've been struggling to rediscover my recent run of good form. Diabetes is like walking a tightrope with complications on one side and hypo-induced coma on the other. Tricky enough if your balance is good to start with, but if you start out wobbly you're in for a difficult time.

So I'm basal testing again to see if I can discover the new magic numbers.

The technique I've come across goes like this:

1. Choose a day when you are not doing anything particularly strenuous and your fbg is in range
2. Take basal and any other medication as usual but miss breakfast and don't inject any bolus insulin.
3. Don't eat anything and drink only water until lunchtime and test every hour or two
4. If your basal dose is correct you should remain within 1 or 2 mmol/l of where you started
5. Repeat the test for another 2 days (they don't have to be consecutive)
6. Then move on to missing lunch, then evening meal
7. If you are really hardcore you can also test every hour or two overnight (I confess I've never quite managed this part of the process, and have always been able to convince myself that my dose must be about right, surely?)
8. If you notice a consistent rise or fall in bgs during the tests consider making (or talking to your doctor about) a modest change in your basal dose, perhaps 1 or 2 units up or down
9. Then start the testing process again
   

Not a perfect day to start the test today as fbg was 3.5, but I'm going for it anyway. I also had coffee rather than water which will also muddy the waters a bit (lactose in the milk will push bgs up a bit).

I'll let you know how it goes.

Update: Day 1 test went well despite the wobbly start. Completely solid bgs from mid-morning onwards. Now, do I sloppily move on to lunchtime? Or do it properly and complete the morning test a few more times? Hmmmmmmmmm...

Update: Lantus problems and going round in circles