Posted by on Saturday, 22 December 2012

Ho ho ho-peful

Artoo and I began our little adventure just over a year ago. It has been as steep a learning curve as anyone ever suggested it might be. At times it has felt like I was newly diagnosed all over again, and despite 20ish years of experience with injections, there were weeks when that knowledge seemed to count for almost nothing.

A year ago I noted that in hindsight, perhaps beginning to completely change insulin delivery method immediately before one of the most challenging and notoriously chaotic times if the year foodwise might seem a little foolhardy. But in the current challenging financial climate it would be a brave man who would turn down the offer of NHS funding for an insulin pump without a very good reason.

Last Christmas was, if I'm honest, a bit of a mess BG-wise. Much as I stand by the general assertion among people living with diabetes that there are two days (Christmas and birthdays) on which and any carbs eaten don't count, the perfectionist in me delights in giving myself a kicking whenever dodgy results appear. Even when (and perhaps especially if) I'm sort of expecting them. I didn't get myself into any serious bother last December, but it was certainly not my finest hour. Since the Summer, and especially since changing the sets I use to Silhouettes (with occasional Quickset), Artoo seems to have really got into his stride. I had a pleasant surprise with an A1c improvement at my annual review, and if anything averages and SD have been slightly better since (with the occasional lapse obviously!).

I'm not naive enough to expect a Christmas entirely without an errant reading (or 10), but my trust in Artoo's judgement and general ability to accurately correct my mistakes has never been higher. As long as I can weather the basal-tweaking turbulence when the lack of gym visits kicks-in I am hopeful that I might be able to enjoy a few treats here and there over the festive period (along with the inevitable selection of wildly non-standard meals) and still keep a relatively decent hold of things. I can but hope.

Thanks to everyone who has visited and commented on our blog this year. It has been an eventful and exciting one in many ways and it has been lovely to share it with you all.

Have a brilliant Christmas and here's to unexpectedly good results this festive season and rock-steady BGs for 2013 all round.

Posted by on Wednesday, 19 December 2012

Unusual suspects : age at diagnosis

A short while ago I was musing about one of the questions which form part of the scope of my little side project. It got me thinking, and in order to have a slim chance of having something to say when the subject eventually comes up for discussion I began to wonder just how old people generally are when they are diagnosed with various types of diabetes.

In the old days, of course, things were much more straightforward - even the conditions themselves were referred in terms of 'juvenile' and 'maturity' onset. But I'm forever coming across folks in forums who were diagnosed with 'type 1' (which is typically thought of as a condition that develops in childhood) well into their autumn years.

There was an obvious answer to satisfy my curiosity - just ask you lot. So I decided to conduct a quick straw poll and asked around the good people of the DOC for their age at diagnosis. Now of course this was not carried out with much, if any scientific rigour - but I find the results fascinating nonetheless.

First off I was absolutely humbled and amazed as ever by people's generosity of spirit in the DOC. Within hours of tweeting, "I'm just curious..." I'd been inundated by responses from people who had never heard of me before and my little tweet was bouncing all over the twitosphere with RT after RT. Facebookers and forum peeps waded in and before you could say, "well I wasn't expecting that" I had over 220 responses. Two hundred. And twenty. Many of the 'proper' research projects I see and read have sample populations in the 10s. People even continued to respond for a short while after I'd gathered the results in from the various places.

While I recognise that I was asking a particularly skewed demographic, I found it interesting that after logging 70 or 80 anonymised responses into a spreadsheet the proportions of people in the different age groups remained almost entirely unchanged right up until that 221st person chipped in. So while I completely accept the limitations of the survey I do wonder whether it isn't that far off the real picture.

So what did I discover?
The first and perhaps most surprising thing I discovered was that members of the DOC are much more likely to be type 1. I'm not absolutely sure why this is - perhaps because the management of type 2 is often downplayed by healthcare professionals and people are (mistakenly) led to believe that type 2 is somehow 'less serious'. People with type 1 it seems are more likely to feel like they are struggling and to seek help and support online. So while in the UK population type 1's make up only 10% of diabetics, in my survey they represent 72% of responses!

Oldest and youngest
Of the type 1's the age at diagnosis ranged from just a few months old right up to 66. Type 2's were similarly stereotype-defying ranging from 17 up to 66 again. The average age for diagnosis with type 1 was 18, while the average age for type 2 diagnosis was 45. I didn't specifically ask the question, but at least a dozen people volunteered the information that they had first been diagnosed as type 2 and later reclassified as type 1 or LADA. The average age for the first diagnosis in this group was 35. It would seem that if you are diagnosed with diabetes in your 30s then you stand the highest chance of your Dr putting a tick in the wrong box, and if the treatment you are receiving isn't working despite your best efforts it might be worth asking for some more tests!

Just the facts ma'am
For those who fancy poring over the numbers/proportions for themselves here are the basic analysis tables that Excel squirted out:



Type 1 Type 2 Total
Number 158 63 221
Average Dx Age 18 45  
Dx uncertainty/change 12  
Avg Age at initial Dx if changed 35  
By age group Type 1 Type 2 T1 % T2 %
<= 17 90 0 57% 0%
18-34 47 7 30% 15%
35-44 14 24 9% 38%
45-64 5 29 3% 38%
65+ 2 3 1% 5%

So while, as you might expect, over 50% of T1s are diagnosed by the age of 18, almost half of them aren't. Coupled with which the number of people diagnosed with type 2 in their 20s - early 30s is a pretty meagre 15%, with the several of those being later reclassified). One T1 respondent mentioned that at 18 they were told they were 'too old' to be type 1. For another this happened in their mid-20s.

It would seem that getting diagnosed at an unusual age is, well... er... not that unusual.

Posted by on Saturday, 17 November 2012

#teamsmug

One of my favourite diabetes-related hashtags of late has been the coining of #teamsmug (I'm not sure who came up with it, but I suspect it was either Dave or Paul). Part self-congratulation, part self-mockery, membership of #teamsmug can follow as little as a single unexpected good BG result after a tricky meal - even just waking up at a good level is enough. The shiny (and entirely imagined) #teamsmug baton is being passed around between Twitter users who know that a few good levels should be enjoyed, but can't necessarily be expected to last. Oddly enough, pretty much as soon as I had blood taken for my HbA1c I had an unusually prolonged #teamsmug period. Almost as if Artoo was responding to my previous grumpy post with, "Doubting my effectiveness are you... Well we'll see about that!"

It has been a hectic few weeks, and I really meant to post something about my HbA1c results before now. I was delighted (and slightly confused) to get a result of 46mmol/mol (6.4%), pretty much back to the last A1c I had pre pump, but with all the hypo reductions and general quality-of-life improvements that the pump has brought. It was a bit of a surprise to be honest. I'm not quite sure how I got that sort of result, as it certainly doesn't seem to fit with the weekly averages I'd been having in the weeks running up to my appointment. It just goes to underline the imperfect nature of HbA1c as a marker.

You'll be reassured to hear that my #teamsmug membership has been revoked since. Nice while it lasted, but the goalposts have moved again, and I'm still chasing after them with a few basal tests.

Posted by on Wednesday, 24 October 2012

Seeing red: Food labelling, traffic lights and missed opportunities

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

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

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

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

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

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

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

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

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

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

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

Posted by on Saturday, 20 October 2012

A1c apprehension and feeling a little deflated

I have an appointment on Monday to have bloods taken for my annual review a week or so later. As is often the case the mere hint of an A1c on the horizon has been enough to play havoc with my blood glucose levels over the past few weeks. Coming down with a cold hasn't helped either.

This time last year I was at a bit of a turning point. I had tried as hard as I could to improve my levels on MDI, and still felt there was improvement to be made. That review was undertaken at the hospital, and having discussed the ongoing challenges I was trying to tackle, the Registrar agreed that an insulin pump was a good option. I recognise that I am extremely fortunate to attend such a pro-pump clinic and after a few more appointments and a bit more prep, I was pumping before Christmas.

Regular readers (your gritty determination astounds me) will know that my journey towards an insulin pump was not entirely straightforward. I spent a great many years resisting the idea each time it was mentioned. Approaching a year into my pump experience I have just done a d-geek 'compare and contrast' exercise that convinces me more than ever of my position on the OCD spectrum - partly because it annoys me so much to have a key period of MDI results missing due to an *ahem* administrative error (I deleted them from one place before checking the place where I thought I'd copied them). I put together seven months worth of BG results side by side, matching 'tricky' periods like Christmas and holidays. I then examined them for a range of markers - BG average, SD, FBG in range, numbers of highs, numbers of lows and so on.

Without going into the minutiae (I appreciate I have to at least make a gesture towards allowing you to retain your will to live) the truth is I'm a bit deflated by the results. Since moving to the pump they are, in some ways, better than on MDI - but not really by very much. And if I'm honest I was hoping for the same transformations to my results that I'd seen in other people. People whose MDI skills I hugely respect, whose lives are busy and full of nice varied (and occasionally eyebrow raising) meal choices. People whose A1c's fell by a significant margin after a short time on insulin pump.

The trouble is I should be perfectly happy. My meter averages suggest that my A1c will be somewhere in the high 6's. To be disappointed by that seems ridiculous, but my last MDI result was 6.3. It is true that I'm having slightly fewer 'waffy' moments these days (thanks Dave!) but I've also had more readings in the 20s than I can remember thanks to multiple set failures which at one stage seemed to be happening fortnightly.

I still believe the pump is working for me - and having changed to Silhouettes a few weeks back I've not had a failure since - but by now I was hoping to have this whole thing sorted and be cruising along with more stability and less goalpost chasing.

I'll let you know what the result is when the A1c jury comes back in.


UPDATE: #teamsmug

Posted by on Monday, 1 October 2012

No D Day : True colours

Today has been declared 'No D Day' by the original Diabetes Ninja, George Simmons. It's a chance... actually it's a downright order *not* to blog about anything diabetes-related today. To write something else. To share something about who we are and what we like to do. There's more to each of us than just a broken pancreas, pitted fingertips and endless mealtime shenanigans right?

I've read some great posts today so thanks to everyone who has shown me more of who they really are.

Last year I mentioned that I like watching films. This year, well... I've started painting again. I used to paint years ago, but when the kids came along things got busy and it just sort of slipped by the wayside. Last year I was experimenting with a spray-stencil for a poster I was doing and had so much fun that I later experimented with using spray-stencil and watercolour together to make an image. I quite liked the feeling of not entirely being in control of the outcome (*struggles to resist drawing a d-related comparison*).

If you'd like to see what they look like you can find some examples under 'paintings' here:
www.stripedpebble.com


Posted by on Sunday, 30 September 2012

Set changes

Since I started with Artoo, infusion sets have been the weakest link in my pump experience. Around the time of the summer holiday I had noticed that I was getting some sort of set-based upheaval around once every 4-6 weeks, occasionally as much as fortnightly. This was clearly not right, and another 'no delivery' alert with attendant BGs in the 20s (360s) spurred me to contacting my pump DSN to investigate the options. Some of the failures I was getting were clearer than others, involving cannulas kinked at 90 degrees and 'no delivery' alarms. Others were less obvious - rampaging BGs which began to resolve after a set change despite there being no apparent problem with the old one. Still others involved multiple changes of reservoir and/or set in a single evening. Partly I am sure this is down to my own nervousness over the whole set business. One apparent failure, followed by a change which gives a 'no delivery' followed by another change can leave you feeling very unsure until you actually see your numbers begin to drop. Annoyingly, for me this can often take more than an hour - plenty of time to decide to do another full change 'just in case'.

In short I was very keen to experiment with alternative sets and see if I could find one which worked, change after change, for months rather than weeks at a stretch.

My DSN was able to give me several each of the shortest cannula length versions of Silhouette (angled Teflon), Sure-T (straight metal) and Mio (straight Teflon with self-serter).

Having spent most of September experimenting, on Friday I received my first order of Silhouettes which seem to work best for me.

I wasn't keen on the 'double sticky' extra loop business with Sure-Ts and while they were almost pain free to insert I found the 2 day changeover came around very quickly. I didn't get on well with the flimsy feeling Mio serter (though I know many love that feature). The first two Mios I pushed in manually, I actually dropped one which fell apart and deposited the 'sterile' needle part onto the floor (which would not have been ideal if I'd been changing on the run and had only taken one with me). The final nail in the coffin for Mios though was the last one which suffered a 'no delivery' cannula kink.

Silhouettes performed very reliably for the few I had to try, so I'll be interested to see what a whole box brings. I was impressed by the relatively compact box size. I'm undecided about the Silhouette kerplunker and may well try a few manual insertions which I suspect may be a bit more comfortable than spring-loaded ones. I did find that the mark on removal seems to be a little more noticeable than others, which might be to do with the angled nature of the cannula.

Fingers crossed I have a few months of clear space before I have to battle my next set-fail shuffle.

Posted by on Saturday, 8 September 2012

Glooko going spare

I was kindly offered the chance of trialling the Glooko meter sync cable and app early in August. Holiday madness rather overtook our household so it wasn't until last week that I was able to give it a go. the Glooko cable and app allow you to import data from one (or several) popular BG meters directly into your iPhone/iPod Touch. Once imported entries can have additional details (such as carbs, insulin dose, meal marker, comments) added. Subsequently nicely formatted data tables can be exported out as an email for printing or sharing with your healthcare team.

Unfortunately I can't really offer a 'proper' review or opinion because as it turns out the old blue Accu-Chek Aviva that I had intended to use for the trial is not compatible with the cable (though newer black ones would be).

What I saw of the app was straightforward enough. Unusually this logging app includes carb-lookup information which might allow you to have a better 'stab in the dark' guess at a meal than usual. This information (including nutritional breakdown) can be logged against your meal. From what I can see the app doesn't appear to offer graphing of your data, averages, SD or other analysis tools, opting instead for a simple table format with pre/post meal markers. Notes and comments are available either from a predefined list or can be typed in a box.

I would suggest that the Glooko cable would suit more occasional loggers, especially for users of Accu-Chek meters. The majority of meters it works with plug in via 3.5mm jack, but the optional Infra Red adapter (sold separately) requires you to line up the iPhone quite carefully, put the meter into IR transmit mode and then press 'sync' on the Glooko app. This is all very well if you want to import a day's or a week's worth of readings, but would take significantly longer than typing X.X into a box while hurrying so that your dinner doesn't get cold. Since the app is free, and the meter cable is what you buy, there is no way of adding BG values manually.

If you would like to try the iPhone BG meter sync cable for yourself the lovely folks at Glooko have suggested that I offer it to any of our readers who would like it (check Glooko.com for a list of compatible meters, and you would need an iPhone/iPod Touch, obviously). If you are interested, leave a comment below.

Posted by on Saturday, 1 September 2012

C8 MediSensors - A bright future for CGMs?

Some months ago I was made aware of a new piece of diabetes techno-gubbins in the pipeline which sounded really interesting. Any poor souls who have read these ramblings before will probably already know my interest in continuous glucose monitors (CGMs). So I was delighted to be invited by the lovely Andrew to a little round-table chinwag with various other diabetes bloggers, campaigners, movers and shakers along with a couple of people from C8 MediSensors who have developed an entirely new approach to CGM which has the potential to be a complete game-changer. A non-invasive, optical CGM. It is currently classed as an 'investigational device', so it's available for use in clinical trials, but not yet available for sale anywhere in the world.

In proper 'disclosure' style I'll mention at this point that my train fare was covered, they laid on some tasty sandwiches and I was offered a modest amount to cover attending the day. I wasn't asked or paid to write anything about it, but I wasn't forbidden from doing so either and as I say - this is already a proposition that interests me (and I suspect, some of you) very much.

What C8 MediSensors hoped to gain, I think, was some end-user input for the potential UK market. The device is not yet available anywhere (they hope to have European CE mark approval by the end of the year and plan to launch in the UK and Europe first). This wasn't a marketing push, or a sales pitch, not yet anyway - this was much more of a two-way dialogue. Picking our collective brains about what we thought would be important to UK punters, how well understood we thought the concept of CGM was in the UK. What potential attributes of app and interface we felt would be welcome and/or irrelevant.

What on earth are you talking about?
The device being developed is one of those rare things. A real first. It's a non-invasive continuous glucose monitor (nCGM). It measures glucose concentration not with an inserted sensor beneath the skin, but with a small beam of light. Let me say that again. No sensors. No sensor stabbiness every 3-7 days. No sensor cost. No consumables at all of any note. As someone who has looked into the challenging financial implications of self-funding a CGM in the UK you can see why this would attract my attention.

Essentially the nCGM is the world's smallest Raman spectrometer. Apparently the initial 'proof of concept' device was about the size of a sideboard, but you'll be pleased to hear that they have managed some ingenious Wayne Szalinski style miniaturisation since then and the current device and rechargeable battery are each roughly matchbox-sized and together weigh a little more than an iPhone. Not exactly nano-technology, but certainly viable. If you are interested in a bit more nitty gritty on the device itself we were shown a short video which shows the CGM in use.

There are still some wrinkles to consider of course. The 'belt' that holds the device against you is not the most beautiful fashion accessory you could imagine. You can't immerse the device in water. You can't really use it while running, leaping and turning somersaults (the light sensor needs gentle but consistent contact with the skin to take its readings every 6 minutes and might complain if it gets jiggled about a lot). There are even 'light screen'/dark shirt precautions that might need to be made if travelling alternately from bright sunshine to deep shadow since light can 'leak' horizontally under the skin. Currently the device is intended/tested for over 18s only, though young people and other user groups are certainly being considered for the future when research data/regulatory approval permits. Data display is currently only available via an Android smartphone, though an iPhone version is on the cards.

Crucially, with this CGM you just put it on and it begins collecting data within minutes. If you want a break, even for just a few hours, you can just take the whole thing off for a short while. It's still a CGM of course, so it's more 'trend' information than definitive BG levels and occasional fingersticks will still be part of the picture, but if you've looked into CGM before you'll know that already. Interestingly, the plan is to launch with a 30-day money back scheme allowing users to try it for themselves before they commit to permanent ownership.

I came away from the meeting very excited. After 8 years of development, and many clinical trials they have data that shows the C8 MediSensors Monitor to give results comparable in accuracy to 'traditional' CGMs, but without the ongoing sensor cost. In fact the suggested price point of the device ($4,000 or roughly £2,500 at the time of writing) is somewhat cheaper than one year's worth of full-time sensors, theoretically putting it within reach of many more people than can currently self-fund. In a clinic environment I would imagine this is a device that makes perfect sense. How many CGMs stay on clinic shelves, I wonder, for want of sensors to offer patients?

Encouragingly C8 MediSensors also seemed keen to build a relationship with users, foster something of a user community. Founded by a parent of a T1 child and his two college room-mates, they seem to have something of a patient's eye-view mentality. Essentially wanting to engage not just with Healthcare Professionals, but with the Diabetes Online Community. With us as end-users.

It will be very interesting to see what happens next. Whether CE approval is forthcoming, and quite how the launched device performs in the wild.

Hold on to you hats. This could completely change the landscape.

EDIT: C8 Medisensors announced that they had received CE Mark approval on 25th October 2012. Things seem to be getting a little more interesting!

UPDATE: Has the light gone out on C8 Medisensors optical CGM?

Posted by on Monday, 13 August 2012

Nice new project

Just back from a short break in Cornwall. Lots of sea, sand and set changes (more on that later).

While away I had some slightly surprising and quite exciting news. A few weeks ago I caught sight of a thread on one of the forums I frequent that NICE (the National Institute for Clinical Excellence) were seeking patient/lay members to join the Guideline Development Groups for some of the diabetes guidelines, including Clinical Guideline CG15, Type 1 Diabetes in Adults.

Now I have good reason to like NICE very much. Because of the way the current guidelines are set out and worded I qualified for an insulin pump despite having a pretty decent A1c (because keeping it that way meant I lived my life constantly a little on edge about the possibility of a hypo). NICE guidelines lay down what is currently thought to be the best (and/or most cost-effective) approach in diabetes treatment. At the very least they give you an 'official' version of the sort of care you should expect that you can wave in front of any healthcare professional who still wants you to mash up bits of dead animals and drink your own wee to test for sweetness.

Back when I had my soapbox moment about the lack of carb counting education experienced by some people I reflected that the NICE guidelines were good, but perhaps a left just a little too much room for manoevre and were not up for review for some years. Here was my chance to put my money where my mouth was and get involved in the review process myself. It's a 2 year project with meetings approximately every 6-10 weeks. It involves quite a bit of reading and sifting of research papers in preparation for the meetings. There's a small payment to cover the cost of attending the meetings and travel expenses are paid.

So I filled in the application form, sent it off and waited. The week before last I took a conference call for the briefest of informal interviews and a few days ago I had an email to say that I had been appointed to the Guideline Development Group as one of two patient members. Yay!

Over the past few years I have hugely enjoyed getting to know lots of people with diabetes through this blog, various forums, Twitter, Facebook and all that. People whose experiences I hope to be able to feed into the review process along with my own.

I won't be able to share the details of any of the discussions before the guideline is published, but may ask you, dear reader, for your input/experiences in advance of some of the meetings to be able to bring wider view to the table.

Exciting times!

Posted by on Tuesday, 17 July 2012

UK Food labelling consultation - have your say

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


Dear Sir or Madam

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

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

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

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

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

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

Kind regards...

Posted by on Thursday, 12 July 2012

How's it hanging?

A few weeks back I had my first ever 'Pump Clinic'. I've been in for a few individual appointments, but this was the first (presumably annual) review of how things were going. I had a 'spare' HbA1c that I'd been given at my last 'Annual Review' and decided that this was a pretty good time to play my A1c joker.

I was fairly pleased to get a result of 49 (6.6%), though my meter averages suggested it might have been a little lower than that. I am beginning to think that the Contour Link's habit of reading slightly lower than my old Expert means that the conversion I used to use to estimate an HbA1c from meter averages is now a little off.

I also had a full lipid panel done (my GP review in March had mistakenly only ordered a total chol figure which is not much use in my book). I was happy to see that my total figure had fallen slightly to 4.7 and the splits remain reassuringly promising (for cholesterol nerds: Total chol 4.7, 1.9HDL/2.5LDL, Trigs 0.6). Fingers crossed my old ticker has a few more years in it yet.

I'm not sure if the folks at the pump clinic had just had a particularly challenging morning, but it was lovely to have my Pump DSN and the Consultant who heads the clinic saying such nice things. It may have helped that the basal tests I'd been asked to do in the weeks running up to the appointment (and had been in the process of doing anyway) had fairly spectacularly improved my levels. Artoo and I have been plodding along for 8 or 9 months now, and we seem to have hit a bit of a purple patch. The weeks running up to my appointment were pretty good, and while I've needed to do a little more tweaking since (darned basal goalpoasts on the move again) I've had another few weeks of really good results.

I think I'm beginning to see what all the pump fuss is about.

During the appointment there were slightly raised eyebrows when my sites were being checked, because of the way I was wearing Artoo. In the first few weeks of having a pump I got increasingly annoyed that the clip on the back only allows the pump to hang vertically on a belt. This meant that Artoo was sitting really high and frequently made his presence felt by digging me in the ribs. He went so far as to draw blood on one occasion when I was getting in and out of a car.

Almost all of the 'how do you wear your pump' comments I see on blogs and forums seem to be from women who smugly say how marvellous it is to be able to hang it from their bra. All very well for you lot with your copious cleavages and fancy undergarments, but not much use for me. For blokes it seems to be belts or pockets only. Like some sort of inviolable test of pumping man-dom. Since I have no room for anything else in my pockets I looked around for alternative clips. Medtronic do one described as a 'holster' (which appealed to my 8-year-old-Magnificent-Seven-loving self). I duly filled the irritating VAT/account creation paperwork, paid the exorbitant price and waited. Within an hour of eagerly sliding Artoo into it for the first time I knew that it was going to be hopeless. While yes, strictly speaking it does allow the pump to hang horizontally, it only does so with a sort of plastic 'back board' with the clip on which hangs vertically and is exactly the same size as the pump. Not only that, but the twisty mechanism is fairly loose so it's very easy to knock your pump into a wonky angle. Short period of tutting and grumbling. Original clip back on.

My solution (and the reason for the raised eyebrow) is pictured on the right of the lamentable 'holster'. It was a £1 scrunchie from Asda (other reasonably priced hair accessory retailers are available). Essentially a long loop of elastic with a cotton cover. Looped three or four times around my belt I can get Artoo to hang perfectly level by passing the clip through the loops. Because it's elasticated I can easily slide him left or right between belt loops, either more on the hip or more toward the front, to suit a seatbelt or whatever. Additionally the little bit of 'give' in the elastic means that I can tilt the screen toward me and read the display right-way-up without any 'having to get out of bag' complexities. Result!

I don't know if it is only me who had this struggle finding a the perfect method of positioning their robot counterpart, but if you are still struggling (and getting bruises around the waistline) I'd recommend a £1 scrunchie every time.

Where do you put yours?

Posted by on Wednesday, 27 June 2012

Face to face

Not so very long ago I would have run an absolute mile if someone had suggested getting together with other people with diabetes.

Biscuits and smalltalk among a group whose only common factor is a condition we all wish we didn't have? Er, no thanks. Death by PowerPoint covering "What food I think you shouldn't be eating" by someone who hasn't been living with my diabetes for 20 odd years. Hmmmm.

But the times, as Mr Zimmerman is keen to point out, are apt to change.

Yesterday I spent a very pleasant evening at the Bristol County Sports Club with a dozen or so others considering whether it might be quite nice to have a support group in the centre of Bristol. The fine folks in the regional office of DUK South West have people whose job it is to see if they can't get us all together once in a while and a new group in the city centre is being considered.

Having spent nearly 20 years flying solo as a diabetic, this blog pretty much covers the period during which I have begun to compare notes with others, both here, on a variety of forums and by extension, at occasional get togethers in real actual living and breathing life. The very thing that I would have run from for all those years has become a very real source of support, encouragement and information - both online and in person.

Earlier this month I wrote a guest post for Diabetes UK as part of Diabetes Week in the UK about the huge value (and frustration) of making very different sorts of diabetic connections. If you are still flying solo I encourage you to seek out some diabetic connections of your own - either online or in person.

What I found interesting last night was that although there were, I think, rather fewer there than the organisers had hoped for, we pretty much managed to cover all the bases diabetically-speaking: Two healthcare professionals, several type 1s, several type 2s, a couple of representatives of Diabetes UK, some newly diagnosed, some with decades of diabetic living, representatives of both 'Team Pump' and 'Team MDI' (including a woman who must surely be one of the first pump users in the UK with more than 13 years under her belt). Even more interesting was that people seemed more interested in just comparing notes and having 'a bit of a chat' than in necessarily having any kind of formal presentation/speaker. And as always seems to happen - once you put a bunch of people with diabetes in a room you just can't shut them up!

If you live or work in or around Bristol and would like to be kept informed about any future developments/meetings for this group please leave a comment below or contact Emily or Musetta from the South West office of Diabetes UK. They'd love to hear from you.

Posted by on Tuesday, 19 June 2012

Dear Medtronic...

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

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

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

For a period of a few days.

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

It gets worse.

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

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

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

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

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

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

Tch! Some people are just never happy :)

Posted by on Friday, 15 June 2012

Scapegoats, Lobbyists and the Perfect Storm

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

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

I was not disappointed.

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

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

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

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

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

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

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

Posted by on Thursday, 14 June 2012

Are you 'Type 1 Aware'?

As part of Diabetes Week in the UK, D charity heavyweights Diabetes UK and JDRF have launched a brilliant video which asks the question 'Are you Type 1 Aware'? It focusses mainly on those who develop type 1 diabetes in childhood and clearly explains the very obvious symptoms which are all too easy to ignore and/or be dismissed by busy GPs as parent paranoia. Having been diagnosed in early adult hood I know myself that it was several months of feeling really rotten before I finally decided I should go and get myself checked out by a GP.

Alarmingly some of the parents in the video share how close to death their children were before they were finally properly diagnosed.

Please share this video with your family, friends, parents, teachers and anyone you know who works with children or young people. You could save a life.

Watch the video on You Tube: www.youtube.com/watch?v=tYlQTylh_0M

More information on the symptoms of type 1 diabetes: www.jdrf.org.uk/type1aware

Family support for T2s

Way back when this blog was just beginning Jane wrote about the lack of support offered to families and partners of adult diabetics. Quite rightly there seems to be support available for parents of children with diabetes, but for those diagnosed in adulthood there seems little in place in terms of help and education unless partners, spouses or carers are able to push their way into appointments with the patient.

It seems that bastion of high street chemistry Boots is trying to change that, at least for the families of people living with type 2 diabetes. Research undertaken by Boots and supported by, among others, Dr Katharine Barnard, Health Psychologist and Senior Research Fellow at the University of Southampton suggests that families could be pivotal in supporting and motivating someone with type 2 diabetes, who at the very least should have access to good information about how their diabetes is treated and what sort of checks they should be receiving.

With 80% of the NHS’s 9.8 billion annual UK diabetes bill being spent on treating complications*, mobilising the wealth of latent support represented by these willing family members could prove a powerful weapon in better management of Type 2 Diabetes and in improving lives. Eight in 10 (81%) family members say they’d use extra support if it were available which is why Boots UK has launched a new Diabetes Information Service that not only provides support for people living with the condition, but also valuable advice and guidance for their families to help them start having better conversations.
* largely preventable

I get a bit nervous when these kinds of organisations start wanting to dish out advice to people with type 2 diabetes. Partly because I see so many people on internet forums who have a terrible time coping with their type 2 based on some of the questionable advice they get from their healthcare professionals! There was also a fairly disastrous campaign by Lloyds recently which provoked quite a lot of disquiet among diabetics by failing (as is often the case) to properly differentiate between types of diabetes.

I really hope this initiative goes well. A family which understands the crucial role carbohydrates play in the management of type 2 diabetes is less likely to say, "Oh surely that won't matter?". A family that understands how difficult type 2 can be to control is less likely to think, "It's only diabetes, just take a tablet and carry on as before". A family which all eats the same diet together make it easier for the person with diabetes to stay on the wagon. A family that understands the potential consequences of poor control will be better at motivating their loved through the dark days.

I haven't had a chance to see the Diabetes Information Pack, and have only briefly looked at the the information on the Boots WebMD website. Thankfully I didn't see much evidence of the usual "people with type 2 diabetes must eat lots of starchy carbs" nonsense, but I can't guarantee it isn't there lurking in the shadows so be wary. Encouragingly they also suggested that self-testing is important in the management of everyone with diabetes (well they do sell the equipment after all). If only we could get GPs around the country to feel the same way.

If you have a family member with type 2 diabetes how able do you feel to offer support? Comments please!

Disclosure: I was sent 'press release' information about Boots new Diabetes Information Service, but was not paid to write this post (I wish!)

Posted by on Monday, 11 June 2012

Making Connections - Diabetes Week guest post on DUK Blog

I was delighted to be asked to write a guest post for the Diabetes UK blog as part of Diabetes Week 2012. Diabetes UK’s theme this year is ‘Make a Connection’ – here are two takes on that:

1. Making connections is the worst thing about diabetes

Diabetes is, for want of a better word, *incredibly* annoying.

I can’t really comment on the vagaries of type 2 – though I have read enough comments from people trying to wrestle their type 2 control into submission to realise that it is at least as contrary and inconsistent as type 1. Let’s be honest, there are days when type 1 diabetes can seem to be deliberately out to get you. Some days it just seems to get it into its head to ‘go off on one’ and there is simply no reasoning with it. Confusion and contradiction abound.

It doesn’t help that on other days, weeks even, it can seem to be entirely reliable and meekly obedient. Behaving the way the doctors say it should. Ratios and factors all present and correct.

It doesn’t even help that of all the chronic conditions, diabetes is one of the most livable-with. If I was going to have to have a chronic condition, diabetes would be pretty high up the list of ones I’d choose.

I can remember comments I got from friends and colleagues in the years soon after diagnosis, “Oooh, I could NEVER inject myself! I don’t know how you can...” – as if that were the hard part! The injections, the testing, the clinic appointments… These are all minor inconveniences. Even carb counting is easy enough and becomes second nature after a short while.

The really tricky thing about living with diabetes is the number of variables involved in the day-to-day running of things – and all the inter-related connections between them. Whenever my levels go all over the place there always seem to be 101 possible causes, lots of head scratching and false-starts before things settle again. Only to go out of kilter a few weeks later.

The body is amazingly good at controlling blood glucose levels. Really, spectacularly good. Most ordinary people wandering about have NO idea of the complex goings-on inside them. The ebb and flow of hormones keeping blood glucose levels within a tiny range no matter what they eat or what they do. It’s only when you suddenly have to start playing at being your own pancreas that you realise how amazing the body is.

The difficulty for us, of course, is that the body is SO good, that it’s a pretty tough act to follow. If the body usually kept blood glucose levels somewhere between 2-20mmol/L we’d all be laughing . But there’s a lot to juggle when you are trying to ‘do it yourself’ and live up to the body’s high standards. The grams of carb eaten... The dose of insulin for those carbs... The likely speed of absorption of the carbs... Likewise the likely absorption profile of the insulin. Not to mention the background insulin required to cover output from the liver, or for that matter, the liver suddenly deciding that this hour, or day, or week needs far more (or less) glucose than normal. Activity? Illness? Stress? Ambient temperature? It’s a wonder we ever get a decent level.

It’s worth remembering that when you are having a bad week. Playing at being your own pancreas is a big ask. We won’t always have all the information. What worked brilliantly last month won’t necessarily work as well this week (because this week is, of course, slightly different in a million seemingly inconsequential ways).

There is never going to be a ‘right’, only ever a ‘right for now’. The best we can do is keep on testing, writing things down, looking for patterns and chasing the moving goalposts.

2. Making connections is the best thing about diabetes


Diabetes is, for want of a better word, *incredibly* annoying.

It can also feel like quite a lonely place to be. For perhaps 18 years I lived my diabetic life supported by friends and family, but without really knowing anyone else with diabetes. I’d met only a handful of people with type 1 in my life, and stumbled across a few more with type 2, but none of their experiences seemed to relate to a diabetes that was anything like mine.

After a while the suggestions and comments from my clinic team were all very well, but they didn’t seem to fit with what I was experiencing – or worse still, were things I’d already tried and knew didn’t work for me. I was having a few too many highs, a few too many lows (but then doesn’t everyone?). My HbA1c was OK-ish. I didn’t seem to be frying my eyes too rapidly. I supposed I convinced myself that this was as good as could be expected.

But then a few years back I had an unusually nasty hypo (long story, short trip to A&E). Suddenly my understanding changed. Good enough was no longer good enough. We began to write this blog as a family, to begin to think about diabetes in a slightly more ‘front of mind’ way.

I began testing far more frequently, writing everything down, looking for patterns. I began to look around for other people to compare notes with. Found and read some amazing blogs written by people with diabetes from all over the world. Joined forums where I could ask questions, read experiences, or just generally rant and moan about the silliness of it all.

There is nothing like making connections with other people who instantly ‘get it’.

There is no question you can ask that will be considered too silly or too obvious.

There is nothing like reading a post written by someone on the other side of the world who is able to express exactly how you feel about a shared experience.

There is nothing like sharing one of your experiences, only to give someone else a ‘lightbulb moment’ over something they have been struggling with for years.

There is nothing like sitting around a table at a social event and having everyone pull out a BG meter before eating.

Making connections gives you access to the latest thinking and approaches from clinics all around the country (or all over the world).

Making connections makes you feel less alone.

Making connections makes diabetes easier to live with.

There are hundreds of people all over the world (and just around the corner) who know what it’s like to face what you are facing every day. Who can encourage you and support you. Who can make your diabetes easier to manage.

Go and make some connections of your own.

Posted by on Sunday, 20 May 2012

DBlog Week Day 7 : My hero(es) - too many to mention

For the final day of Diabetes Blog Week the prompt is to write about your Diabetic Hero, "anyone you’d like to recognize or admire...".

OK, so I've changed my mind *lots* of times about who I should write about. First I thought about some of those stand-out members of the Diabetes Online Community whose blogs, posts, insight, brutal honesty, encouragement and downright laugh-out-loud hilarity that have made such a difference to my experience of living with diabetes - even the ones I have only 'met' this week.
[Apologies to the (many) people not linked there - that sentence was getting stupidly long. You know who you are.]


Next I felt that I should acknowledge the members of the diabetes forums which have become my immediate go-to whenever I have a problem that is grinding me down, a pattern I can't spot or just need to rant and rage about the overwhelming stupidity and inconsistency of D sometimes. The folks here and here are without question the first place I go whenever I have something that needs fixing, discussing or could do with some ideas bounced around with my control. I find fascinating research papers linked. Thorny issues debated and discussed. New tactics and approaches for improving BG control. For upwards of 15 years I barely spoke to another person with diabetes, aside from maybe one or two 'friends of friends' I bumped into, whose experience of D seemed to be nothing like mine. Before I joined those forums I had almost no understanding of type 2 diabetes. I am so glad that that has changed.

I considered acknowledging *everyone* who follows @everydayupsdwns on Twitter. I have lost count of the times my day has been turned around after I've posted a "Blaaaaaaaah! Diabetes is rubbish..." tweet only to receive an instant 140 characters of encouragement from folks in all corners of the globe, day or night.

Too many options. Too many people that I would miss out, whoever I chose.

In the end, the answer was so blindingly obvious I wonder why I didn't think of it immediately. I've thought it often enough! In the end it has little to do with me and my experience. In the end it is a group of people who are often overlooked in the whole diabetes equation. And yet they are some of the most powerful advocates. Some of the most brilliant managers of this trickiest of conditions. It is simply this:

Parents of Children with Diabetes. All of them.

I was diagnosed in early adulthood (aged 21), but I know some of the psychological impact it had on my parents. My Mum still blames herself and wonders what she did wrong (nothing Mum, really, honestly, truly - nothing). She also still worries which of the grandchildren "might get it now". From the start my family were a huge support and encouragement in coming to terms with my diagnosis. By and large though, I was responsible for my own care.

I am now privileged to have two beautiful, inspiring, ferociously clever, teenage daughters. I have watched them grow and blossom. Become amazing people. I know the nagging parental worries connected with anything they ever do. Wanting the very best for them, all the time. I know the emotional wrench of any illness and discomfort they experience. The agony and ecstasy considering of what their future may hold.

I know how hard it is to play at being your own pancreas. I know how much of the time the 'rules' make little sense. How hard to have to be on yourself to keep things in control. How some days the weight of possible complications can feel like an unbearable weight to carry. How darned difficult the day to day can be - even when you have your own body senses giving you little tiny clues about levels all the time.

I cannot imagine what it takes to play pancreas for your child. All of the difficulty. None of the warning-sign sensory feedback. And all the parental concern about being too harsh/not harsh enough/future health and well-being into the bargain.

No doubt. All you guys are complete and utter heroes.

You take my breath away.

Posted by on Saturday, 19 May 2012

DBlog Week Day 6 : Compare and contrast

Saturday snapshot for day 6 of Diabetes Blog Week makes me think about the photo I posted this time last year.

At that stage I was still unsure how I felt about the prospect of an insulin pump - Would it help? What would it be like? How would it feel to live something attached 24 hours a day? This morning I was due a set change for Artoo. A year is a long time.

Posted by on Friday, 18 May 2012

DBlog Week Day 5 : Setting the record straight

Today's DBlog Week topic asks "What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?". Fortunately Karen seems to know how much we love the sound of our own typing: "Have more than one thing you wish people knew? Go ahead and tell us everything.". Well, since you asked...

Journalists
There is more than one type of diabetes. Actually there are *lots* of different sorts, and some of the 'types' are really just umbrella terms for a multitude of different, but fairly closely related conditions. This next bit probably bears saying slowly, because it seems that you have difficulty grasping it: Diabetes. Is. Not. Caused. By. Eating. Sweets. There, that wasn't so hard was it? In general terms you probably only really need to think about type 1 (around 10% of the diabetic population) which is an auto-immune condition where the body destroys it's own insulin-producing beta cells. Nobody knows what causes type 1 diabetes to develop. No-one. On the other hand there is type 2 diabetes, where the proper metabolism of carbohydrate begins to fail. Type 2 Diabetes makes up nearly 90% of the diabetic population and last time I looked *nobody really knows* what triggers its development either. Nobody. There does seem to be a genetic link (so you are more likely to develop it if a close family member already has it). It is also more common in certain ethnic groups. Additionally people who carry more weight seem to be more at risk of developing type 2. Let me say that again - AT RISK. This is not the same as cause. Perhaps 15% of people diagnosed with type 2 are normal weight or under weight at diagnosis. And bear in mind that perhaps 90% of the obese and overweight population do NOT have diabetes. Let's go over what we learned earlier - eating sweets does *not* cause diabetes. If a person is overweight it would be wise for them to consult their doctor to assess their risk of diabetes. The extra weight may be an indication that their metabolism is struggling to efficiently metabolise carbs - but please, please, please stop repeating that diabetes is a 'lifestyle' disease 'caused' by eating sweets.

Scriptwriters
This is getting silly. Please. For the love glittery cupcake-eating unicorns, will you PLEASE just have a two minute conversation with a person with diabetes the next time you have a Brilliant Idea about using insulin-dependent diabetes as a way to spice up your flagging movie/action adventure/medical drama. It really is Not. That. Hard! Time after time you get it wrong at the most basic level. The problem is you get things so messed up so often that 'normal' people will be beginning to think you have it right. You know there's this time-critical thing (a hypo) where the person can be minutes from oblivion. And you know that diabetes has to do with insulin, which is hard to come by on a jet plane struggling to make a landing, while Denzel Washington and Bruce Willis swap oily vests and wisecracks as they wrestle the deranged and inexplicably English-accented baddie into submission. It all looks ideal... How will our rosy-cheeked cherubic child make it through as she plunges into a hypo when the only insulin on board was smashed under the nasty Brit's suspiciously shiny shoe. STOP! Insulin will KILL her. If she is mid-hypo what she need is a little something from the kitchen. Hypo is *low* blood glucose. All she needs is a swig or two of Coke. We are very sorry that this is rather inconvenient in dramatic terms, but there you are. If she misses an insulin shot? Well unless she's on a pump (let's not go there right now) the chances are she has got *hours* - especially if she doesn't stuff her face. She might get a bit grumpy. Not very Hollywood, but I'm afraid it's all you've got.

GPs and NHS beancounters
There are all sorts of people. Tall ones, short ones, loud ones, quiet ones. Some are really clever, others not so much. A mixture of all of these people will be unfortunate enough to develop type 2 diabetes. Now given this bewildering variety, don't you think it is perhaps likely that one identical approach will not work perfectly for everyone. Diabetes, perhaps more than any other chronic condition will be affected by the behaviours of the patient. Some people will be happy to take your advice on what foods they should be eating to keep their blood glucose levels under control. You will give them advice based on your knowledge and understanding. What you believe happens 'on average'. The problem is, we are not talking about 'average'. We are talking about individuals. When a patient comes to you with a desire to test their blood glucose levels using an effective framework, and to use those test results to establish a varied and nutritious diet which does not spike their BGs please consider their future health. 80% of the NHS budget for diabetes care goes on treating preventable complications. Once a patient has spent a few months building up a picture of BG friendly foods, testing can drop back to a much lower maintenance level. There is no 'one size fits all'. Don't mistakenly jump to a conclusion of 'non-compliance'. If you are advocating a diet with lots of 'healthy' carbs for t2 patients, their problem might be *too much* compliance. The only way for a person to discover what foods, and quantities they can eat (and at what time of day) is with a meter. Not everyone will want to put the work in, but don't just automatically deny the means for people to control their diabetes.

80% of costs on preventable complications are absolutely appalling stats. Perhaps the time has come, at last, to rethink the high-carb/no-test approach if these are the results you are getting. I'll put it more simply for the hard of thinking: Give. Type. Two. Diabetics. Test. Strips. And. A. Copy. Of. Jennifers. Advice. Then. Support. Them. In. Keeping. Their. Diet. Balanced. And. BG. Friendly.

Posted by on Thursday, 17 May 2012

DBlog Week Day 4 : Things we'd like to see

Today's DBlog Week topic is all about fantasy future D gadgetry. If we could have any dream diabetes device, what would it be?

I had a crazy notion to write a post about a futuristic BG meter that was actually accurate to within 5% of a lab reading 100% of the time. Or maybe a CGM that was actually affordable for anyone that wanted one. I even considered writing about a pump that was constructed with such inexplicable ingenuity that it *didn't* have to bleep and warble about a temporary basal rate Every. Single. Hour. Which might be useful for anyone that ever needed to set a TBR to run overnight and values their sleep. But no. Let's at least keep this within the bounds of the possible.

I'm not even going to write about the cure. That's only a mere ten years away after all (well it always has been, ever since I was diagnosed in 1991, so I don't see why we should start changing that now).

What I would like to see (and I suspect some white-coated boffin in a gleaming laboratory is already working on this very thing) is an intelligent insulin. I can remember having conversations with people when I was first diagnosed who would say things like, 'Ooooh, I could never inject myself!'.

Like that was the hard part.

Let's face it after the first three or four hundred - the injections are a doddle. All the other stuff. The adjustment. The guessing games. The carb counting. The unexpected 'helping hand' given by the liver. The moving goalposts. The messy, confusing, illogical variability of it all. That's what I want rid of. Heck, I don't even mind carrying on with a fingerstick BG test every so often just to make sure things are toddling along OK.

So in my dream-world of the future, I just need to inject a whack of IntelligentInsulinTM pending every day (it could be every few days, but I don't want to push it).

Once absorbed the IntelligentInsulin just sloshes around in my bloodstream bound-up and inert. Ready and waiting. I chance upon a sweet and sickly cupcake. As soon as I start eating it, and my BG begins to rise the IntelligentInsulin senses the change in my levels and immediately begins to work (none of this '4 hour profile' nonsense). Once the carbs are dealt with, IntelligentInsulin stops and waits again. Very tiny amounts of it working every so often to counter glucose released from my liver keeping my levels rock steady. If my BG falls below 4.5 (81), IntelligentInsulin stops working entirely and allows my liver a little room to top things up into a safe zone. When I eat a massive fat-laden uber-carb pizza-with-extra-dough-balls-and-garlic-bread IntelligentInsulin effortlessly matches the stop-start absorption of the food. Even when I have an entire cream-filled Pavlova meringue for dessert. Which is a neat trick since I have a horrendous cold at the time. And have not been to the gym for 2 weeks.

All I have to do to manage my diabetes is keep my level of circulating IntelligentInsulin topped up with an occasional injection, and take an occasional BG test to check things are OK. And that is all.

Welcome to the future ladies and gentlemen.