Posted by on Friday, 18 November 2011

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.

Posted by on Wednesday, 2 November 2011

Going blue for WDD and some pumping firsts

As many of you will know, November has been claimed by many Diabetes organisations as a month to raise awareness of the condition. We are marking World Diabetes Day, November 14th 2011 in our own small way by turning our pages blue for the month. All over the internet there are little blue circles appearing - the international symbol for diabetes. Yesterday I caught wind of a brilliant project being organised by Mike Young who runs the 'Diabetes in Spain' website. We are not the only ones, it seems laying claim to the month of November. A creative initiative called 'One Day on Earth' invites people to document their experience of 11-11-11 (the 11th of November 2011) through video or photography. Mike is encouraging those living with, or affected by Diabetes to share what it is like to live alongside the condition with the world by giving their submissions a diabetes twist. If you fancy taking part you can find details of how to sign up here: www.diabetesinspain.com/diabetes-11-11-11.

In other news...

At the risk of boring you senseless, wittering on about the first few hours of life as an embryonic pumper I can report the following:

First comfy cannula. When I went to see the DSN I was given some 'standard' 9mm Quick-Set cannulas. They seemed comfortable enough, though there was a constant low-level itch. I swapped one for another in case the first had gone in wrong somehow, and it felt pretty much the same. How was I to know how it was supposed to 'feel'? A few forum posts seemed to indicate that being constantly aware of the location of the set was not 'normal'. Last night I swapped the 9mm for a shorter 6mm cannula and bingo! About half an hour after insertion the initial tingly sensation has worn off and I cannot feel anything at all. No tenderness when I poke at the plastic surround on the skin. Nothing. I have not tried other varieties yet, but at least I know I can use these. Great!

First 'free roaming' night. The very first night I popped Artoo in the pocket of my pyjamas. I don't usually wear trousers under the duvet, but instinctively felt some sort of containment was the way to go. It wasn't bad, but my legs got hot and Artoo kept falling out. Last night I initially started with the clip fixed to a loop around my neck (another forum suggestion) but didn't like the sensation of being a bit tangled. Early on in the night I dispensed with the loop/clip and just let Artoo roam free. This was by far the comfiest so far, nestling in the dent in the mattres around waist height. As I turn over from side to side I just locate, grab and shift to the other side in my semi-comatose state.

First public display. I went to the gym for the first time this morning. Something I think every new pumper has to deal with is the attachment thing. How others might perceive you as different, even those you don't know, and whose opinion matters very little to you. I wondered if getting changed in front of others would make me feel a little self-conscious. It's normally fairly empty in the changing rooms when I am there but not today... oh no. The place was packed! Nevertheless when I lifted my shirt and detached Artoo no-one seemed to notice in the slightest. I've decided that since my workouts are usually under an hour I will, at least to begin with, detach Artoo and leave him in the locker while I exercise. I even used the little cannula cap thing this morning. But I'm not sure how long that attention to detail will last. Showered off with no problems... Man! that sticky tape stuff is strong. Buoyed by everyone's complete lack of interest on my way in, I decided to test the waters further as I changed after showering and deliberately struck up a conversation with someone while I primed the tubing and re-connected.

Not even a flicker of an eyebrow.

It seems that pumps, like injections in restaurants are protected by a Douglas Adams 'SEP field'. A cognitive filter which applies almost universally with perhaps the exception of some young children and a handful of adults. Because it is something inexplicable, odd and unexpected most people simply do not see the pump, even when you interact with it, merrily press buttons and make bleepy noises. Their brain edits it out of the visual field because it is Somebody Else's Problem and life is much easier without having to worry about what it is.

So there we go. Artoo and I are off and running. And I can't wait to get cracking with insulin next week.

UPDATE: Pumping for two months - a little bit of everything

Posted by on Tuesday, 1 November 2011

Look sir, droids!

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

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

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

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

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

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

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

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

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

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

UPDATE: WDD 2011 and some pumping firsts

Posted by on Monday, 24 October 2011

The holy grail? HG1-c a CGM without consumables

I had a comment posted over the weekend that drew my attention to a new CGM (continuous glucose monitor) technology. It's so new that it's not even available yet, anywhere in the world, and while I suspect that the commenter ('Bob Slack') may possibly be part of the 'marketing machine' it is, nevertheless, interesting enough for me to want to post about it.

I've been banging on about CGMs for ages. As far as I can see they are perhaps THE most significant step forward in diabetes care in the past 10 years. For my money a full-time CGM would have at least as much benefit to many MDI patients as a pump. The ability to know at any given moment, not just my BG level but also the direction it is heading and the rate of change would be a complete revelation to me. Suddenly you would have three times the amount of information on which to base your decisions. Managing diabetes often feels like steering an ocean liner through a tricky maze of sand bars and reefs. Blood glucose levels can change so rapidly with food or exercise, but the insulin 'steering mechanism' we are using has a frustrating time-lag of a few hours before its effects are truly felt. Dodging highs and lows before they happen is often a case of informed guesswork based on years of experience combined with living as many days as possible the same way to try to reduce the ridiculous number of variables involved. Reducing spikes after meals can involve injecting early to give the insulin 'a bit of a head start', while simultaneously trying not to overdo it and risk a post-meal dip. Sometimes it works, quite often it doesn't.

A CGM takes a reading from 'interstitial fluid' around every 10 minutes and gives an idea of what the BG level was perhaps 10-15 minutes ago. Up till now the readings have been taken via a sensor placed under the skin. Every few days this sensor had to be replaced, and they are not cheap. Running a fulltime CGM in the UK is likely to set you back thousands of pounds a year and currently NICE does not recognise them as a stand-alone treatment method. There are only a handful of people who have managed to secure NHS funding for CGM therapy in the UK, mostly children. Either their clinical circumstances are unusual enough to swing the extra expense, or they are very very skilled and determined negotiators.

The HG1-c by C8 Medisensors is based on what appears to be completely new technology. It uses non-invasive optical measurement so that no expensive under-skin sensor is required. In theory you just strap it to you for as little or as much time as you want. Of course since it is not yet available there is no way of knowing (apart from reading the marketing promises) how well, if at all, it might actually work, how much the unit will cost and even whether it will ever be licensed for use in the EU or UK.

Still... This could be one to watch.

Posted by on Wednesday, 19 October 2011

Beating Diabetes... anyone fancy a cure?

I'm just coming to the point in my life where I've lived longer with diabetes than I lived without it. Ever since diagnosis I have read about, or been told about exciting research which could have profound effects on those living with diabetes. I have witnessed the release and gradual acceptance of amazing new technologies and treatment options which make diabetes more controllable than ever before. Every year I've heard of breakthroughs that bring that elusive prevention or cure one step closer.

But anyone who has more than a passing experience of this condition will know that it can be an infuriatingly complex and difficult business. Most reports of dramatic research developments usually end with caveats about 'very exciting, but early days' and 'further research' being needed. Typically the timeline suggested before things come to fruition is 10 years. I don't know why they pick that number, but they always seem to. Long enough, perhaps, for everyone to have forgotten the promise.

So you might think by now I'd be all cynical and downhearted? Nope.

Before diagnosis I had never really had much to do with the medical profession. I'd not broken any limbs as a child, or needed to go to the doctor much. I had a brief stay in hospital when I was around 8 after being hit by a car crossing a road, but on the whole medics, hospitals and GPs weren't really in my frame of reference. Suddenly, in my early 20s there I was. Right in the middle of multiple appointments and practitioners, a hospital stay, armfuls of blood tests and with an on-going connection to all these people stretching out in front of me. Not only that but I became very aware of others diligently working away in quiet labs prodding and poking at diabetes, turning it over and over with a stick and trying to figure out how to make it easier to live with, and if possible disappear completely.

There has never been a better time in history to be a diabetic (and given the numbers of us around, that's quite a good thing). And tomorrow, or the day after, or the day after that, someone, somewhere will have a thought, or observe some happy accident, then test it and tweak it and suddenly BAM!

No more diabetes. Ever.

That would be great, right? If you live with D, I'm pretty sure you'd like that. Quite a bit. And the fact that there were lots of thoughts and ideas earlier that didn't come to anything will not be important. The dead ends and diversions will be of no consequence because the beast will be slain, or the perfect treatment option to control it will be right there in our hands. If not 'no more diabetes', I'll settle for 'no more diabetic complications'.

If only we could speed the process. If only we could, in our own small way, play a part in that amazing story.

Well we can.

I was contacted a week or so ago by someone who asked if I could raise the profile of a campaign to help beat diabetes. The NHS's National Institute for Health Research 'Diabetes Research Network' has launched the Help Diabeates campaign to encourage people to get involved in the search for a cure or better treatment for diabetes. Because of the nature of the teaching hospital I attend for my diabetes care I have been able to take part in various research projects in the past. But this, I think, is part of the difficulty... Any researcher with a brilliant new idea to try needs to be able to make observations and test things with suitable candidates to develop their knowledge, explore their idea and push it further. If they are attached to a clinic they might be able to ask around and see if there any volunteers, but I suspect they are going to be scratching around with only a handful of people who fit the criteria.

And if they can't get their research done we can't get our cure.

In simple terms the Help Diabeates campaign offers you an easy way of offering to be involved at some point, and only if you want to for any particular project. It's a way of throwing the research net a little wider. You add your name to the database, they ask you a handful of questions. Then if there's a research project that might benefit from your involvement you get contacted and are given the chance to take part. Even if you decide you want to and then change your mind, you can back out at any stage.

What are you waiting for?

Find out more about Help Diabeates here, then sign up to take part here.

And if you dont live in the UK? Well just look around. In a lab somewhere in your country there's a clinical trial with your name on it.

Advertising message

Diabetes explained. Search for diabetes treatments at a private hospital in Nottingham.

Posted by on Friday, 23 September 2011

The shape of things to come?

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

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

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

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

So...

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

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

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

Update: Look Sir, Droids!

Posted by on Thursday, 22 September 2011

BBC: Designer diabetes drugs 'cost NHS millions'

http://www.bbc.co.uk/news/health-14999853

There are many hopelessly inaccurate news stories published about diabetes, too many to count, but this is the first one whose tone was so indefensibly vile that I have been moved to immediately write a letter of complaint. Accurate and impartial this wasn’t. Not even close.

If I try really hard, and because I know a good deal about the subject I can just about glean the real story here - that some people with diabetes are being given different treatment options in the wrong order. If I read through layman’s eyes, I'd see everyone with diabetes as a scandalous leech on the NHS’s purse. A costly and, if I build in information from most other media coverage (including that on the BBC), largely self-inflicted plague on society.

I read a lot about obesity causing diabetes. I read a lot about the ‘lifestyle’ disease. I don’t often read that only around 10% of those classed as overweight or obese in the UK are diagnosed with diabetes. I never read that a significant proportion of people diagnosed with type 2 diabetes are normal weight or underweight at diagnosis, and that those who are overweight have in all likelihood been gaining weight for some time as their body begins to struggle to metabolise carbohydrates. I rarely if ever read a media article that properly distinguishes the metabolic disorder and autoimmune disease. The recent Diabetes UK campaign to highlight the huge number of people with diabetes in the UK who are not receiving the basic checks to ensure their health went largely ignored. It is suggested that 90% of the cases of sight loss in diabetics could have been prevented with earlier identification and treatment.

But those things don’t fit the default media’s diabetes stereotype of “fat, lazy and all their own fault”.

I have been using insulin as a treatment for diabetes for over 20 years and I wish to point out to Helen Briggs that there is no such thing as a ‘designer’ insulin. Insulin is not something I choose to match my summer wardrobe. This is not some flimsy, inconsequential part of my life. All insulins are not the same. Diabetes is a complex condition to manage. Whether type 1 or type 2, every single mouthful one eats has to be considered. For those using insulin, particularly rapid-acting analogues, the timing, dose and activity curve of the insulin needs to be matched as closely as possible with the likely absorption of carbohydrates in food, while factoring in exercise, illness, stress, even ambient temperature.

The target blood glucose range that I am asked to hit is so tiny that the permitted BG meter inaccuracy of 10-20% almost entirely covers it. And if I stray very far outside that target? Blindness. Kidney failure. Nerve damage. Heart attack. Loss of limb. Coma. Death.

The benefits of using the very best treatment options available to me are not ‘modest’. My circumstances are not ‘exceptional’.

The potential consequences of using inappropriate treatment options to save the NHS ‘£625 million over 10 years’ in the short term, could cost the NHS a great deal more in the treatment of unnecessary diabetic complications. I have been diabetic long enough to pre-date analogue insulins. I’ve used the cheaper human formulations and they are not ‘just as effective’. Not for me, and not for many others.

I accept that diabetes is costly to treat. I accept that incidence is increasing and that this raises concerns over the future cost to the NHS of treatment. What we need though is better treatment. Better education. And above all better, more balanced, more informed coverage in the media.

Enough of the diabetes-bashing.

Shame on you BBC, I had thought better of you.

Posted by on Thursday, 15 September 2011

Timesulin - a pretty smart idea

Just came across 'Timesulin', which is a replacement cap for insulin pens which records the amount of time that has passed since the last injection.

As a person who actually changed insulins to get a 'Memoir' pen with a dose memory this simple solution to part of the problem ("Hang on... have I injected or not...") appeals to me. Since having the Memoir I know I often check to confirm the exact timing of doses. Sadly however the Memoir is currently unavailable and Novo Nordisk's Novopen Echo is still not scheduled for release in the UK. So at the moment there is just no MDI device that records the timings of your injections.

Enter 'Timesulin' an ingenious digital timer which can be used as a replacement cap for your existing insulin pen (currently only Kwikpen®, Flexpen®, Solostar® are supported). When you remove the pen cap to inject the timer resets to zero and begins to count up again. So by looking at the pen lid you can tell how many hours (or minutes) have passed since you last injected. Cleverly if you pop the pen lid off to check how much insulin is still in the cartridge (or whatever) the timer keeps counting. It only resets the timer if the cap stays off the pen for more than 8 seconds.

At the time of writing the Timesulin caps themselves are 'in the final phases of production' and are due to be available for purchase from mid-November 2011.

More details here: http://timesulin.com/

Would be very interested to hear from anyone who gets hold of one, and whether they found them useful. Leave us a comment below...

Posted by on Tuesday, 6 September 2011

Reviewing my review

So today was the day. My long awaited (and only slightly delayed) annual review. As far as I can tell most, possibly all of the old clinicians have left the hospital I attend, so there were new faces to meet. 

It was great. My appointment started promptly and my discussions with Dr S were unhurried and thorough. A little too thorough, perhaps. Apologies if you were after me, I think I stayed and chatted for a bit longer than I usually would. 'Smile and nod' this wasn't. It felt more like a fruitful exchange of information. And if Dr S was bored senseless and wished I would get lost, she certainly gave nothing away. 

I was pleased to learn that my HbA1c had dropped from 7.1% to 6.3% (45mmol/mol in new money). Dr S pointed out that that was the sort of level at which they get begin to get concerned about the number of hypos that might be involved, but thankfully I'd taken a sheaf of printouts showing that I'm having far fewer these days. Other results showed an unexpected drop in cholesterol to 4.7 (with an improvement in the lipid panel split of 2.1 HDL, 2.3 LDL and 0.7 Trigs - yes I realise that doesn't add up, calculated values sometimes don't it seems). Blood pressure, while occasionally higher than ideal, is generally low enough at either end of the day to pass muster. 

I should take this opportunity to thank the Diabetes Online Community for their amazing support and encouragement over the last year or two. Forums, blog posts and comments left here have had a major impact on the way I am able to manage my diabetes. Things that I had thought impossibly illogical for years have been made much clearer. You guys rock!

And as for the *big question*? Well as I talked through pretty much all the issues I still have with Dr S, we agreed that all of them would be easier to handle on a pump. I have booked an appointment with a DSN to talk pumps, Levemir and other options. 

Watch this space. 

Posted by on Monday, 5 September 2011

D-Tracker Review - Diabetes UK iPhone App

I was asked a few weeks back if I would take a sneaky-peek preview of the new Diabetes UK iPhone App by Public Zone and write a review of it. In a proper bloggy 'disclosure' type way I should point out at this point that I have not been paid to write this review and although approached to be part of a focus group earlier in the project (I was not able to take part) I have had no part in the development of the app. The app is a free download in the iTunes App Store. What follows is simply my own appraisal having tinkered with the app this weekend. No more, no less. I should probably also point out that I am fairly picky by nature and can almost always find fault with anything. If you want to know my general feeling read the 'overview', if you want a fuller breakdown of what I thought proceed to the nitty gritty.

Overview
D Tracker is an application that allows you to record all sorts of Diabetes-related information on a variety of Apple devices (iPhone, iPad and iPod Touch running IOS 4.2+). I am not sure if the intention is to create versions for other mobile device architectures eg Android, but I guess a successful launch could lead to other versions.

I've had various periods of diligent record-keeping and complete data deserts in my time. But what I do know from experience is that keeping an accurate record of, at the very least, your BG, doses, food intake and level of activity/illness is hugely helpful in trying to spot patterns and improve diabetic control. After a period of recording in notebooks I have in more recent years converted to recording electronically. And the ability to do so quickly and easily with something that is in my pocket anyway makes an app potentially an ideal solution.

I am aware as I write this, that Diabetes UK have had a pretty tricky job on their hands in putting this app together. They represent all different types of people diabetes, from the regular types one and two to other more exotic versions. They also deal with anyone from the newly diagnosed to old hands like me. Parents and carers of diabetic children or relatives. Occasional record keepers and data junkies. 

I have to say, with a few reservations, that I think they've done a great job. There are some great fresh ideas here, and some really useful tools that I've not seen in other recording apps, or at least not all in one place. I think this is part of the challenge in developing a new app. There are plenty of others already available, so the trick is doing everything well and also trying to bring something new.

Data entry and editing is easy enough, and there is a LOT of data that you can enter and track. From the obvious blood glucose and insulin doses to carbs, ketones, calories and weight. You can even record how you are feeling at any entry to track the effect of mood and stress levels. Adding a note (which you can even share with Facebook or Twitter of you are so inclined) allows you to record any other info relating to the entry.

Recorded results can be shown on either daily or per-week graphs on which you can show any or all of the data you have recorded by way of colour coded data points and (in some cases) connecting lines that show the trend. The list view is just that, a vertical scrolling list of the records. It might have been nice to have an option for a tabular format, but I suppose with the number of data entries that can be stored in each record a table was felt impractical.

I particularly liked the way that different records can be flagged as 'talking points'. These are then stored as a list (in folders if you want to organise things still further) for later reference in the 'My Health' section.

Another first, and stroke of genius I felt, was that you can take a photograph as part of a record. I was taught to count carbs at diagnosis, but I realise that this is not the case for everyone, particularly type 2s. If estimating carbs on a plate at 50 yards is not second nature to you, you could simply photograph what you ate, record your BG levels and then have that image to refer back to when trying to analyse the results that follow.

Now this being a Diabetes UK sponsored app (and free to boot) you will not be surprised to hear that here are links and contact details to DUK and the Careline; and yes, even a 'donate now' button to support the Charity's work - but these are very low key and certainly do not get in the way of the app's main functionality. There are also very useful pieces of pop-up explanatory text every so often providing extra information about weight, BMI and so on, with links to the DUK website. 

The 'My Health' section allows you to keep track of all sorts of other bits of info, your latest HbA1c for example, neatly date-stamped when the entry was created or updated. You can also keep track of forthcoming appointments, contact details and so on, keeping all your diabetes stuff in one place for easy reference, and perhaps even 'in case of emergency' use. 

The nitty gritty
So far, so good. But here is where I put on my picky hat. Sorry about that. There are lots of different diabetes and weight-monitoring apps on the market, and I think this app does what it sets out to do. Depending on the level of data analysis you are after, the D Tracker will either suit you, or not. 

One of the strangest things about the app for me is that there are almost no user-definable settings or adjustments that can be made to tailor it to your own preferences. Weight must be entered in stones and pounds. Ketones must be entered in mmol/L. Even the 'How are you feeling' choices are predefined and unchangeable. 

I also have a bit of a problem with the graphs. This always seems to be an aspect of these apps that I struggle with. For a start the graphs only ever show in portrait orientation, and at the scale of the single day graph, each day is so long that if takes fully five screens' width to get from midnight to midnight. Five. Added to this the vertical scale is fixed to the apps max and min values. In BG terms this runs 0-33mmol/L which, combined with that long x-axis made some rather erratic entries I made look reassuringly flat. The problem is exacerbated by the fact that the graphs can carry lots of different data sets, depending on what you elect to track, so there is no information shown about what the y-axis represents. I can't tell whether I was high or hypo, only get a vague sense of whether I was going up or down. Some colour-coded dotted horizontal markers for max/min or target levels which turned on and off with their respective data would have been a great help. On the graphs, some data points are joined by lines, others (insulin doses for example) are shown as data points only. Oddly it was decided to track carbohydrate consumption with a trend line linking different meals in the day. I'm not entirely sure why that was. 

The 'week' view gives a list of days with their data either averaged (eg blood glucose) or shown as totals (eg insulin doses). This data can also be shown on a graph, again without the benefit of a y-axis legend. There  is no apparent data analysis for a wider scope than a calendar week. If you want to see how things shape up over 14, 30, 60 or 90 days you would need to get your calculator out. More detailed number crunching for BG data, to offer Standard Deviation for example, is not available.  

While I love the 'Save as a talking point' feature, I do wish it was not restricted to individual records. More often than not, what I find I want to discuss is a whole day's worth of results, or at very least a sequence of before and after. 

The real disappointment for me as far as this app goes though is this - there is no way of exporting your carefully recorded data at all. The best you can do is to email yourself an image of one of the less than perfect graphs. Different BG recording apps seem to take different approaches to data export. Some link you in to online accounts where your data can be uploaded, others (including my favourite) allow you to simply email yourself a copy of the tabular data and a .csv file that (depending on your level of geekery) you could import into a spreadsheet program and manipulate to your heart's content. The D Tracker offers neither. If I record my data with it I cannot print out my results and take them to my next clinic appointment. If I want to leave the data with my team, I'd need to leave my device. 

Conclusion
I think the D Tracker is a great first effort from Diabetes UK. They, and their developers are to be congratulated on providing a very useful tool for monitoring a very complex condition. There are some great features and functions here, and some very interesting new ideas. I'm sure many will find it a great help, and I look forward to seeing new and improved versions in the future. 

Final score: 3.5/5

Get the Diabetes UK D-Tracker App free here.

Posted by on Thursday, 1 September 2011

D Art Day 2011 : The path of least resistance


September the 1st is Diabetes Art Day, the brainchild of blogger, art therapist and all round good egg Lee Ann Thill. It's an chance for the DOC to get creative and try to say something about living with diabetes in a slightly different way.

I really wasn't expecting to be able to take part, but while watching telly a couple of nights ago I began scribbling something that sort of represents how I've been feeling for a week or two, and so - here it is. As I said in my last post, my Annual Review is coming up, and I've finally decided (I think) that I'm going to ask about pump therapy.

You can probably sense my uncertainty about my decision in the drawing. Essentially I see two ways forward. One way ('Switch to Levemir') might offer a slight improvement to control with the inconvenience of an additional time-fixed basal dose every day. No problem most of the time, but on occasional nights out/parties/holiday travelling possibly slightly 'in the way'. I'd also have the hassle of sorting out my new basal pattern(s), of course. Lots of testing and tweaking for a good few months. So minor improvement, but still a bit of a faff.

The other way forward is to switch to pump therapy. A full explanation of what I'm feeling about this, or expecting from will have to wait until later, but in summary: potentially major benefits, but much more of a faff.

All you dear pumping friends who have been telling me for the past few years how great pumping is and how you'd never go back despite its shortcomings have got me to a point where I at least feel I need to ask the question. You never know they may just say I'm not eligible for funding (HbA1c too good, hypos not bad enough, wrong hat size, moon in jupiter...).

But at least I'm going to ask.

There is a bright light ahead, but I'm feeling a bit lost about it and I don't know (can't know at this point) which the 'best' way forward is. 'The path of least resistance' is to go back the way I came and choose nothing. But I'd rather walk towards the light.

Update: Reviewing my review

Posted by on Monday, 29 August 2011

My last week of FREEDOM!

Yup, its me again! And this time you might actually want to read what I am saying because it is quite interesting. Then again, maybe its not. The summer holidays have been brilliant this year, and I am making the most of my last week of freedom before I'm back to a new term of homework and hassles. Great. Year seven was an interesting year but not one I would want to do again, and I expect that's what I'll say after year eight. Dad's levels have been much better recently, and although they are often ludicrously high, they are better. My most recent craze has been baking, and thats a bit of a problem if you live with a diabetic. Here is the problem in the form of a sum:

Baking sugary treats = Temptation (+ Diabetic Dad + expectant child = giving in to temptation) = bonkerz sugar-levels

Oops!

Oh well. Any way, pushing that aside, what I was going to talk about before I got side tracked with the baking craze crisis was my best friend's problems linked with mine. Every where I go I appear to be a disaster magnet, or that's what it feels like anyway. My best friend has been struggling through the last six months, and the school have been pretty useless at doing anything to help so it has only been me as support for her as no one else knows, cares or understands fully the situation she is in. This links in with Dad because it means that I am really feeling the pressure at school and not quite being able to relax at home because of Dad. As I get older I feel more and more responsible for making sure Dad is ok and is jabbing at the right time etc. so my troubles certainly don't stop at home. It doesn't help that my body is raging with hormones! I am a teenager in distress! And although the holidays have been a bit of a break, and Dad's getting better and my Best Friend is pulling through, neither of them are completely better and my thin layer of calmness is all going to fall to pieces when school starts again. Honestly, school is a menace to society. Life certainly isn't a breeze.

B

PS found out what diabetes is. It's a pain in the neck. Not literally though.

PPS My new favourite saying is 'success, is failure after failure without loss of enthusiasm'! Brilliant!

Posted by on Wednesday, 24 August 2011

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

Posted by on Wednesday, 17 August 2011

Neither one thing nor the other

Well... a few weeks into the holiday period and things haven't completely fallen apart control-wise. Yet. We had some time away in Cornwall and perhaps because I feared the worst I've returned feeling that it worked out pretty well. Oddly I seemed to fall exactly between two possible Lantus doses. A unit down and sugars stayed grump-inducingly high, a unit up and I had to fire-fight hypos with regular medicinal ice creams. You can guess which one I opted for. Oh for a half-unit delivery device for Lantus!

When we returned home I dropped Lantus back down, expecting (with more usual meal choices) that things would settle. But oh no... not a bit of it. Diabetes often seems deliberately contrary, confounding whatever expectations I have of what will probably happen next in the general scheme of things. So I reduced Lantus by the one unit which had meant I was needing to drop meal doses by 20-30% and expected that the hypos would disappear, which they did. And then some. After two days consistently in the teens I put Lantus back up again and waited for the hypos to reappear. They haven't. And neither am I needing to reduce meal doses to avoid them any more. If anything I seem to be running slightly high more often than not.

Maybe it was the sea air? The sand between my toes? We did a bit of wandering about, but certainly not what you'd call 'exercise' in any energetic sense of the word. Whatever it was the hyper-sensitivity I had to insulin in Cornwall has mysteriously evaporated and the same doses are now behaving very differently.

To add to the nagging voice in my head about these recent slightly higher levels, my appointment for annual review has just come through. Ideally I'd like to have a few very tightly controlled weeks in the run up to my HbA1c. After all I've had a few in recent months.

How hard can it be?

Posted by on Monday, 25 July 2011

Waiting for the storm

Things have been going quite well for me control-wise recently. Monthly averages not too shabby, and particularly over the last few weeks where my meter shows an average of around 6.4mmol/L (115 for US types) with hardly any hypos by my standards, and an SD between 2.0 and 2.7. The Accu-Chek Expert is the first meter I've had that shows 'Standard Deviation'. A mathematical concept slightly beyond my meagre adding-up ability, I gather that it demonstrates the variance in a set of numbers above and below the average. Neatly it also reports it in the same units, which means that you can get an idea of the general 'spread' of your BG results. The smaller the SD the more tightly grouped the results (which is a good thing in terms of BG results fact fans). An average of 6.4 and 2.5 SD would mean that almost all of my 14-day results including the post meal ones lie between 3.9 (70) and 9.9 (178). For me that is smile-inducingly good.

But last Friday was the end of term.

I'd been watching its approach like a ink-black cloud on a summer's day horizon. Hoping that it would not mean what I feared it might. Regular readers will know quite how well I've done with holiday periods recently. In short, not very.

So I'm steeling myself for a slightly wobblier period over the next few weeks. Last summer I seemed to manage pretty well, though I think my control has improved since then. At least when the kids are off school over the summer I have a few more weeks to try to find the new rhythm. I'm hoping it will just be a matter of getting some sort of holiday basal working to account for lack of gym visits, and that the new big meal strategy will continue to work its magic. Maybe.

I'll let you know how I get on.

Posted by on Wednesday, 13 July 2011

What if?

I still haven't heard about my 'annual review' (due last April) and the post I have been musing on full of questions about potential treatment changes is still rattling around in my head. In the meantime, and partly because no one has posted anything new here in a good long while, here's a quickie about a conversation we had at the breakfast table yesterday.

Beth asked me what I thought it would be like if I was suddenly cured of diabetes and didn't have it any more. Whether I would find it easy to stop doing all that routine diabetic stuff out of habit.

I don't think there is a diabetic who has not wondered about this, even if only for a moment, after living with diabetes for a while. Behind the question there is almost the feeling of 'Do you think, in a weird and unfathomable way, you would miss it?'

The first thing I said was that I would eat a lot more biscuits. No more having to just grab a handful of nuts if I was peckish for me, oh no. Now I know in theory that I should be able to bolus for a snack and eat pretty much what I want, but the reality is that snacks and doses rarely seem to behave for me. Either 1u is a bit too much or not quite enough, the dose stacks with another, or lags behind whatever I've eaten. Mostly snacks are just too much like hard work, and I just get too grumpy when I get it wrong again to enjoy them. Which is a shame really because I do love a biscuit.

The next thing I said was that I'd start eating properly massive pasta meals again. Jane suggested I'd probably stop going to the gym which I had to agree was fairly likely.

The upshot seems to be that if I got rid of diabetes tomorrow, pretty soon I'd be a lot less healthy than I am at the moment. And I wouldn't be getting all those regular checks to spot potential problems either.

So there you go Mr D, you can hang around for a while longer.

I'd still jump at the chance to get rid though really. Sorry about that.

Posted by on Sunday, 12 June 2011

New big meal strategy: thirds

Following on from my recent moan about errant BG levels during holidays I posted on a forum that sometimes it seems to come down to a choice between food variety and good levels. If I stick to basically the same meals week after week and use tried and tested doses I tend to have far more consistent results.

This is, of course, blindingly obvious.

But it's not really an ideal long-term solution is it? In fact it reminds me a little of a joke by Tommy Cooper: "I went to my doctor the other day and said, It hurts when I do this" [briskly raises left arm above his head] "He said, Well don't do it then". Trouble is I really like food, so the wider variety and range of quantities I can eat the better - not necessarily all the time, but certainly every now and then. But these occasional guilty pleasures are not at all enjoyable if they always result in disastrous BG levels.

Part of the frustration stems from the fact that my insulin:carb ratio which in theory should allow me to eat pretty much whatever I like, seems to be less than predictable in certain circumstances. Almost everyone, I suspect, who adjusts doses this way will be familiar with the experience of counting carbs in an unusual meal carefully, taking the 'right' dose, only for BG chaos to follow. This can be particularly frustrating where I know I can achieve pretty good results for notoriously difficult meals (pizza or fish and chips for example) if I eat the 'usual' amount and take the 'usual' split dose, even if the actual carbs involved are not measured or counted very accurately at all.

A few very interesting comments came out of my forum post. I'm always suspicious of 'rules of thumb', but someone remembered a suggestion from John Walsh's excellent 'Using Insulin': Take your weight in pounds and halve it, then use that figure as grams of carbs - this gives a good indication of the meal size above which your insulin:carb ratio may well break down. It might not work for everyone, but it's pretty much bang-on for me. Someone else suggested that above a certain point they found they needed to add approximately a third to the calculated dose for it to work well.

Last night, we had a mixture of 'heat it and eat it' ready meals from the supermarket, and I ventured a pudding too. Overall mine ran to just over 90g carbs with a fairly high fat content. Not horrendously high carb load, but enough in recent weeks to cause problems. I decided to experiment with the new 'adding a third' approach and split the dose as if I were eating fish and chips. The results were excellent - 4.8mmol/L (86) before the meal, 5.0mmol/L (90) at one hour and 6.2mmol/L (112) at just over two hours. By hour three I was still pottering along at 6.1mmol/L (110) with a mix of the split doses still active. By suppertime I'd dropped back to 4.7mmol/L (85). That's a little low to go to bed on, so I had a small snack to prevent a dip overnight. FBG this morning was 5.0mmol/L (90). Cracking!

It's a bit early to believe that this will solve all my problems for unusual
meals in the future, but it's certainly a system I'll try again.


Posted by on Sunday, 15 May 2011

DBlog Week Day 7 : Looking back

Topic: What have we learned this week?

I guess most of the posts today will share a common theme - a celebration of the online community of diabetics, or to give it it's full title the Awesome DOC

I've discovered a lots of new blogs this week that I will enjoy revisiting. I've been very encouraged by the lovely comments and kind words that people have added to our posts. 

What will stick in my mind most of all I suppose, is the great DBlog Week Blogger Meltdown of 2011. You can learn a lot about an organisation or group by watching what happens when things don't go so smoothly. When Blogger went down during Thursday and Friday it was fantastic to see bloggers on another popular blogging platform offering a helping hand, and others offering sympathy and support. 

In a way this is an illustration of the best in our community - people bound together by a common thread freely offering support and practical help to others. Not just to those exactly like themselves, but across divides of type, approach and level of experience. Not because they would get something out of it - but just to offer a helping hand to someone who needed it.

Who wouldn't want to be part of that?

Posted by on Saturday, 14 May 2011

DBlog Week Day 6 : Saturday Snapshot

Topic: Inspired by the Diabetes 365 project, let’s snap a few d-related pictures and share them

Not long before Diabetes Blog Week started I had emptied out my pencil case of the constantly growing piles of diabetes junk. By my reckoning that makes this just over the 6 day's worth of used strips, used and spare needles and other bits and bobs that get carted about everywhere until I empty them into my sharps bin and the cycle starts again... Diabetics, it seems, need determination, stickability, keen analytical brains... and large pockets.

DBlog Week Day 4 : Ten things

Topic: Ten things I hate about you, diabetes

[Places carefully nurtured positive attitude to one side, rolls up sleeves...]

  1. For all the people who will leave their doctor's surgery today having heard those hateful words
  2. For all the kids (and adults) who have been bullied for "bein' fat and lazy, and havin' eaten too many sweets, ha! ha!" and all the other lies, prejudices and misconceptions you revel in
  3. For all the families who grieve for someone you stole from them
  4. For all the minutes, on all the days, in all of the last 20 years that I've had to waste thinking about you
  5. For hanging over each one of us, our families and loved ones like a fetid black cloud full of the threat of coma and complications
  6. For your inconsistency
  7. For making 'feeling a bit hungry' a possible signal of a life-threatening medical emergency rather than just being a bit peckish and your attempts to suck the joy out of every single mealtime
  8. For the anxiety you caused my parents (and still do) when they blame themselves, worry what they did wrong, and wonder whether any of their grandchildren will 'get it now'
  9. For robbing my life of what little spontaneity I ever possessed
  10. For the sheer spirit-crushing, unrelenting, never-ending, no-days-off-ever grind of it all
[Crumbs! I didn't realise I was so cross ...aaaaaand relax!]

Posted by on Friday, 13 May 2011

DBlog Week Day 5 : Ordinary Awesomeness

Topic: What awesome things have you done because of your diabetes?

Since I signed up to take part in DBlog week I've struggled to think of anything I could post today. And I'm not just talking about struggling to post because of Blogger's technical meltdown yesterday... For starters, can a person at my age and living the UK ever really get away with using the word 'awesome'

Unfortunately I have no acts of supreme courage in the face of extreme adversity to relate. I have not raised thousands for charity by trekking across the Andes on a pogo stick. There are no mighty campaigns of Government-steering advocacy to astound you with. And while there are many things in my life of which I am very proud - my beautiful wife, wonderful children, shelves in our lovely home that are put up almost level - I'm not sure that I think any of them happen 'because' of my diabetes. 

I've read some great posts already today about the genuine awesomeness of the people you meet in the DOC (diabetes online community). The support, wit and wisdom available 24 hours a day, 7 days a week that is truly amazing. 

By contrast, this will probably seem quite small. Ordinary even. Something like 20 years ago my pancreas more or less threw in the towel. Ever since then, every day, I (like many of you) have learned to 'be' my own pancreas. Sometimes I seem to make a pretty good job of it, other times I make a complete mess of things. Some days it feels easy, other days the task seems an impossible weight to carry.

There are no other diabetics in my family. If I'd been diagnosed 100 years earlier I might well have died within months.  

But I'm still here. 

And I guess that in itself is pretty awesome. 

Posted by on Wednesday, 11 May 2011

DBlog Week Day 3 : The trouble with Supermarkets

Today's DBlog Week topic is 'Diabetes Bloopers': Whether you or your loved one are newly diagnosed or have been dealing with diabetes for a while, you probably realize that things can (and will) go wrong. But sometimes the things that go wrong aren’t stressful - instead sometimes they are downright funny! My trouble is that I get so grumpy and down on myself when I mess up that I found it really hard to think of something for today's topic. As with so many things in my life though, Jane came to my rescue. I remembered a post she made almost exactly a year ago. Not sure if it really counts as a blooper, but we still look back on those times and smile:

The Stress Factor
The stress factor. How do you measure that? Any ideas?

We were first aware of the 'stress factor', as new parents, one of the most stressful times in your life I suppose, though at the time you are far too tired to notice. Patterns begin to emerge, hypos with no sensible explanation. There is no way of knowing whether it is stress that caused those hypos, that is just our own theory. I will describe the events that caused us to make this assumption, and you can decide for yourself.

Picture the scene, one exhausted wife, Ellen aged four (talking non stop), Beth aged two (constantly running off, talking to strangers and potty training), one diabetic husband, Saturday morning, Asda. To be honest I could probably leave it there and you would already agree this is not looking good for the stress levels, but I will go on. To let you understand quite how stressful this whole situation was for Mike, I also need to mention that I hate shopping. All shopping. I have a very precise, well planned list to work from to ensure that the deed can be done in the minimum amount of time necessary, and at the time, we were on a pretty tight budget, so any extra purchases had to be applied for and approved by, well, me. No, there is nothing fun and spur of the moment about shopping with me.

Ellen, bless her, did talk incessantly when she was four. It was very sweet, but unbelievably distracting, and after a while you want to say "Shush." Even if you do, when they're four, it doesn't work, so there's not a lot of point. Beth was, shall we say, entertaining, aged two. She ran everywhere in a very determined way, while Ellen walked very slowly, talking. Then there is potty training. When you hear those wonderful words, "I need a wee." you have to drop everything and run to the nearest loo, there is no time for dilly dallying. You have a trolley full of shopping, a four year old with no sense of urgency and time is ticking. An extra pair of hands at a time like that is a godsend, so we went as a family. Within the first five minutes of every shopping trip we attempted, Mike went low. I would be listening to the steady hum of Ellen yabbering away by my side, keeping one eye on Beth's whereabouts and the other eye on the shopping list, and would turn round to realise that Mike had disappeared. We would have to backtrack until we found him, usually standing by a shelf lifting something off and repeatedly replacing it. Then I would open the pack of funsize chocolate bars I'd put in the trolley and start feeding them to Mike, while answering Ellen's questions, saying that yes technically it was stealing but we would be paying for them when we got to the check out, and they would understand because it was a medical emergancy, and no she couldn't have one, Daddy was only eating it because it was his medicine, and even if she wasn't feeling very well it wouldn't be the right sort of medicine to make her better because she wasn't diabetic and yes I did know that for a fact and right about now Beth would say, "I need a wee."

We tried the shopping just enough times to establish this was a repeated pattern, and then gave up. Over the years Mike has recognised a number of activities that seem to have the same effect on his levels. Whatever you may call it, stress, nervous tension, whatever it is, probably causes different reactions in different people depending on how you deal with it. I'd call it an impossible science, but I am seriously chuffed to say that since we've started blogging, and Mike has been chatting to people and researching solutions to some of the problems he was facing, the necessity for me to intervene and sort him out has reduced dramatically. Life is good.

Jane

Posted by on Tuesday, 10 May 2011

DBlog Week Day 2: Letters to my liver

Topic: Letter writing day...

From: Committee for Arranging Levels Manually (CALM)
To: Liver & Associated Metabolic Effects (LAME)
Further to your previous message, we acknowledge receipt of your request. In triplicate. We are unsure why you feel it necessary to release that level of glucose immediately after the Body rises. However in the light of your insistence, and following consultation with the Delivering Insulin Myself team (DIM) to cover this additional load, we can confirm that your request has been granted.
Sincerely Etc


From: Committee for Arranging Levels Manually
To: Liver & Associated Metabolic Effects
It has come to our attention that on Saturday last, despite the agreement currently in place, you failed entirely to deliver the additional glucose into the blood stream that you have been so insistent is necessary. Furthermore, you made no attempt to alert DIM, with the result that the Spotting Hypos Immediately Taskforce! (SH... oh never mind!) had to raise the alarm. We would like to point out that it was at your own insistence that additional DIM procedures had to be put in place. For you to then unilaterally decide to withhold the promised glucose without notice has caused considerable inconvenience to the Body.
Yours etc

From: Committee for Arranging Levels Manually
To: Liver & Associated Metabolic Effects
Following the concerns raised about your recent performance, it is our unfortunate duty to relate that another complaint pertaining to your behaviour has been received. You may recall last year when you were commended for your gallant actions during the dramatic Overnight Overbolused Pizza Situation (OOPS) where your glucose release was instrumental in assisting the Body. Perhaps you were trying to make up for your lapse in delivery last Saturday? Perhaps although yesterday's dip in BG levels was only minor, you thought it had not been spotted? Whatever the reason, it would be extremely helpful if you could consult with other departments before actioning the emergency Dramatic Unexpected Mega-glucose Protocol. The SH..! team already had the situation well in hand with the Consumption of Assorted Really-tasty Bits System. Your unrequested and frankly overenthusiastic intervention, once again without due communication, has caused rather more problems than were strictly necessary. We appreciate that you were trying to help, but once you started your glucose release you really didn't know when to stop did you?

It has been a difficult time for us all since the decline of Pancreas Industries, but really the only way forward is if we all work together. Having a loose canon around who either deposits, or fails to deposit significant quantities of glucose at various times is making the Committee's job significantly harder.  It is unfortunate that you are still unable to clearly identify your glucose releases  (the proposed system of bright blue triangle on the forehead was rejected). Until some sort of communication system can be installed, what we need from you is measured, gentle consistency, not reckless attention-seeking overreaction.  Your prompt attention would be much appreciated.
Kind regards etc

Posted by on Monday, 9 May 2011

DBlog Week Day 1: Diversity, old chestnuts and unison singing

Topic: Admiring our differences.
When I first began reading diabetes blogs, the ones which most resonated were the ones where someone a bit like me was writing about something that felt familiar. Where I felt an immediate connection in experience. Pretty soon though I discovered that some of the most moving, interesting, enlightening or just downright funny posts are from people whose experience is completely unlike mine.

I've a lot I can learn about making good BG friendly food choices from a type 2 who uses only those choices as their treatment.

I'm not a pumper, I'm not sure I want to be... but I love to read about the ups, downs, ins, outs, set changes, square waves and TBRs that they juggle every day.

I have no idea what it would be like if the diabetes was not mine but my child's. I read an incredibly inspiring post by a Mom in the US with not one but three T1 diabetic sons which challenged the reader to give bolus advice based on the son's lunchtime phonecall. The subtlety and complexity of the required calculation was staggering. And this is a woman who is caring for three young men and holding all their ratios, timetables and hormonal ebbs and flows in her mind.

I was brought to tears by posts from Lauren (our first blog follower) for whom diabetes was a minor inconvenience in comparison to her cystic fibrosis. An amazing, strong, creative, feisty young woman who tragically died earlier this year.

Every so often I come across the old chestnut of Type 1 vs Type 2. Whether they should even be called the same thing 'diabetes'. The community turning on itself. The bizzarre suggestion that one type is somehow less 'serious' than another. Here's how I see it. One is metabolic, the other is auto immune. Neither is easy.

People with T1 and people with T2 both need careful dietary control/medication to control BG levels. People with T1 and people with T2 are at risk of heart disease, blindness, kidney failure et al (in fact T2s are more likely to have begun to develop complications even before diagnosis). If you put all the people who take insulin in the UK in one place and divided them by type the T2s on insulin (including basal bolus with all the challenges T1s face every day plus insulin resistance into the bargain) the T2s would massively outnumber T1s.

I understand the frustration of diabetics and especially parents whose kids are taunted about their T1 by ill-informed peers, but for my money we should press for education not a label-change. We should all stand together and work to break down the myths and misconceptions that are repeated in the media so often.

Yesterday I was in the band leading worship in church. We led a song where the first verse was stripped back and spare. All elastic timing and gentle guitar. More voices joined the tune for the second verse, all singing the same melody line. But it was at the chorus, as voices split and began to sing different melodies that the real beauty began to happen.

This is what the DOC is like. The strength of this community is its diversity. We push forward with common the aim of better control for ourselves and support of those around us, longing for a cure for future generations, pushing for others to have a better understanding of this condition. We acknowledge different approaches. No one-size-fits-all. We bring our different experiences to bear and the result is richer. Stronger. Better.

You can't get harmony if everyone is singing the same note.

Posted by on Saturday, 7 May 2011

Learning to love my Aviva Accu-chek Expert

I was given an Aviva Accu-chek Expert handset and have been using it for a little over 4 months now. I wrote a review a month in to the experience with a few reservations, but as time has gone on and settings have been tweaked and refined I've come to love it. It doesn't work perfectly and the bolus advice it provides is not faultless, but when life is relatively steady (and my basal is behaving itself) it has given me whole weeks of astonishingly good BG levels.

Take yesterday as an example: I'd been a bit on the low side the night before, going to bed at 4.1mmol/L (74 for US readers), so I tested at 2.30am to see if my little carb top-up had worked and was pleasantly surprised to read 5.9 (106). I was even happier reading the same 5.9 at breakfast. Left my usual delay between bolus and eating, had some toast and went to the gym. The Expert allows me to adjust breakfast bolus on gym days with a 'health' option, a percentage reduction for 'exercise 1', I've set -25% for the gym and -10% for more general pottering as 'exercise 2'. By lunchtime I was 4.2 (75). Not bad. Now because that's a bit 'near the edge' the Expert automatically deducts a proportion of lunch bolus to attempt to get me to the mid-point of my desired range (4-8mmol/L or 72-144). My pre-dinner test was 6.5 (117). Result! I like to keep an eye on post-meal spikes most days, and tested an hour after eating in the evening to find 6.2 (112). The meal was pretty low GI so I figured it still had a fair amount of carbs to release. Additionally we were meeting some friends for a couple of pints while the kids were out at a club, any rise from the beer ought to be handled by the potential over-enthusiasm of my evening Humalog. My bedtime test was a smile-inducing 5.9 (106).

A whole day and I'd guess I didn't go much above 8 (144) (hard to be sure as I didn't test at the likely peak after lunch). Neither did I hypo, despite a session at the gym. What US CGM wearing pumpers would call 'bolusing a no hitter'.

Now anyone who has read my last post will know that this doesn't happen all the time. When life is a bit more chaotic, when basal-needs change, when overall levels of activity rise or fall those carefully tweaked settings are just a little off. Not much but enough to put you on the glycaemic rollercoaster of guessing, double guessing, highs, lows, chaos and confusion. What US blogger Scott so accurately described last week as low blood sugars, guilt and fear.

After 20 odd years of handling all the calculations and adjustments by myself I'd guess I'd got pretty good at knocking a unit off here, adding one on there to try to match the constant ebb and flow of life and BG levels. Every so often I'd get a day just as good yesterday. What I've noticed since using the Expert though is that these days are no longer a shock. They are not normal by any means, but having been as rare as hen's teeth, I can now find weeks where I get several on the trot.

I'm continuing to experiment with settings for illness, and I clearly need to do a lot more work to handle the wider-scope shifts in routine that caused me so much trouble during April.

There are still a few things I'd change about the Expert, but it's certainly won me round and I'd highly recommend it.

Posted by on Friday, 22 April 2011

Summertime Blues

Well not exactly... More 'Easter Anxiety' really, bit I'm a sucker for a snappy title, and we've been enjoying some fabulous sunshine over the last few weeks.

I've been really struggling with control for the past three or perhaps four weeks. It started getting wobbly for a week or so, at the end of which it became clear that the insulin stored in our increasingly dodgy fridge had not kept too well and had lost a lot of oomph. Almost immediately afterwards I had a sore throat/cold combo which (unusually for me) wreaked a little BG havoc. And around the same time the Easter holidays came along. As invididual events they would probably have passed with little comment, but in succession they have been very hard work.

My diabetes likes order. My diabetes likes stability. My diabetes likes things to stay the same day after day after day.

Holidays in particular are often a bit of a challenge. When the kids are at school their routine sets a rhythm in the house. We wake at a set time and are careful not to do too much on a 'school night'. It's easy to get to the gym three times a week. Evening meals slot into the regular pattern.

When holidays come along though the regular rhythm of the house changes. We begin to wake up later. Gym visits fall away. Beautiful sunny evenings beckon. Friends call to ask if we'd like to join them for a stroll around the docks, perhaps stopping for a pint at The Cottage on the waterfront. While we are there perhaps we'll decide to stop for some food (I'm sure to have brought my insulin pen). Friends come to visit, what a lovely evening! Let's have a barbecue! All of these events are lovely. They all form an important part of my enjoyment of life.

But they do not make it easy to maintain good control.

It's times like this when I can feel trapped between enthusiasm for these lovely events, and facing the consequences of the BG guesswork they inevitably involve. It's times like this when diabetes seems most in the way. When life is fast-moving and unpredictable. When meals are grabbed outside of the normal, 'old faithful', predictable choices. The choices that we rely on week by week to make life, grocery shopping and carb counting easier. It's times like this when diabetes feels like a weight grinding you down. When a pleasant afternoon stroll followed by a meal out makes you think, "Oh great, that's going to be tricky to count right". It's times like this when diabetes seems determined to suck the joy out of life.

Of course it is not really that bad. Usually with a little effort, and some decent guesswork it is possible to get into 'holiday mode' and make a reasonable attempt at guessing your way through the holiday maze. To reset basal for the lack of gym visits. To adapt to the new 'normal'.

What this last few weeks have shown me (again) though, is how easy it is for one week of uncertainty to roll into another. And before long it's easy to lose confidence in your ability to make good judgements. Even if you know there are good reasons for a string of errant readings, a few short weeks of chaotic BGs can really take the wind out of your sails.

Next time we have a holiday I'm going to make sure that the fridge it in tip top working order, and I'm NOT going to get ill!

Posted by on Friday, 1 April 2011

Not cool - insulin storage problem

I'm still waiting to write that post extolling the virtues of Colin, my Accu-Chek Expert, but even his shrewd bolus-calculating savvy was not up to coping with the BG craziness of the last seven days.

Things just went bonkers.

And it made me realise that this is not unusual. Since I started putting a lot more effort into my diabetes a year and a bit ago I've noticed a definite repeating pattern in what I previously thought was just diabetes randomness:

1. Finally work out the rules
2. Good numbers for a few days. Yay!
3. Wow that was an AMAZING day. Woo hoo!
4. Errrrr hang on where did that come from
5. Right something's definitely not right here...
6. So the rules have changed again then. Great, thanks for that.
7. Erm... try this?
8. Nope. That was annoying.
9. What about this?
10. Right OK not that either...
11. OK that's looking a bit better
12. Definitely on to something here...

....aaaaand repeat. Given enough trips around the cycle the doses/ratios/splits/timings begin to repeat themselves and off we go again.

But this one wasn't like that. This one was off the scale.

Looking back over recent records I'd had a spectaculatly good patch. Over a fortnight with 75% of readings between 4 and 8 (including several 1hr/2hr post meals). Anything over 10 was a bit of a surprise. I was also having almost no hypos during this period. In short it felt like I was winning. It felt amazing.

I started having a few hypos to tentatively dropped my Lantus by 1u to see if I'd settle just a notch higher up. I only lasted 2 days first with a prefectly acceptable 6.9 average, the second constantly fighting highs and averaging at 10.8.

The next two days, Lantus back up by 1u were not too bad, but the following few days were a complete disaster. Countless corrections were having little or no apparent effect. One morning despite a 2u correction the previous night (at 14.x) I woke to 16.6. I went for broke decided on double my usual breakfast insulin:carb ratio +20% for 'stress', injected 8u and waited for it to come down. 5 hours passed and I still hadn't eaten anything other than a lump of cheese (hoping to trick my liver into cancelling any DP action). BG stayed above 9.0 right up until lunch. The following day saw me needing 10u for a single slice of breakfast toast (that's 5x my usual amount)!

While waiting for our new fridge to be delivered, I posted a moan on a forum describing recent events, and suggesting that the Diabetes Gremlins had perhaps snuck in at night and replaced the Lantus in my cartridge with water. Someone happened to ask if there might be any problem with the way the insulin had been stored. Hang on a minute... "While waiting for our new fridge to be delivered...".

And then it all fell into place. Our fridge has been a bit flaky for some time, maybe even a year. Mostly keeping things cool, sometimes getting a little enthusiastic and getting really cold, other times appearing to warm things up, but never actually completely broken. The light had stopped coming on a week or so ago and we'd decided that enough was enough and ordered a new one. I was down to the last cartridges in the box of both Lantus and Humalog and it seems that the fridge's repeated misbehaviour had substantially affected the insulin's potency. The box of Lantus was the older of the two, so my guess it that it was pretty much shot. The newer Humalog left to fight the BG battle on its own at half-strength. Another one to add to the 'watch list': Count carbs, consider food absorption properties, check basal level, consider level of activity, rotate sites, make sure fridge is working.

I've ditched the suspect cartridges and with nice new fresh ones things have quickly returned to normal. Well today at least.

Posted by on Tuesday, 29 March 2011

Not always easy

I'm having a slightly difficult time at the moment. Not really, but I've just had a whole load of weeks with almost bewilderingly good control. I have a blog post brewing called something like 'How much I love my Accu-Chek Expert' that I'm hoping to add later this week.

Things never stand still with diabetes though. It's a constant grind of getting it to work OK, then things seeming to change for no readily apparent reason, then working out what these 'new rules' mean while enduring days of chaotic numbers, then getting it to work OK again... and on... and on... and on...

I just read a quotation that someone posted on a forum which so eloquently summed up this feeling that I wanted to share it here:

“And even the constant need for decisions might be tolerable, if only the results were predictable. Few things generate burnout like the awful frustration of having followed instructions and done everything just right and still to be failing to get the diabetes into control. At those times it seems no use to continue to try.

Think how discouraging it is to fail at something you really wanted to do. Then consider what it must feel like to be failing at something you didn't want to do in the first place.”

Joan Williams Hoover

Posted by on Friday, 11 March 2011

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.