The Einstein Principle

Pick your cliché...

"I had it coming"... "Pride comes before a fall"... "Sod's Law"... "I brought it on myself"...

So hands up who thinks they know what has happened just as I posted something about how well things have been going recently. Right. So that's pretty everyone with diabetes reading this, every parent of a child with D, or anyone who lives with someone 'pancreatically challenged' then. Thought so. OK you can put your hands down now. Don't want your arms getting tired.

Yup. As you would all expect, immediately after I allowed myself a little glimmer of diabetic self-satisfaction the other day, things have well and truly gone 'off the rails'. In no small part self inflicted (a family birthday celebration with not quite enough self-control on my part). Partly stupidity - I forgot to press the final 'confirm' to administer a lunchtime bolus, cue stratospheric BG mid afternoon. A suspected big fat tubing bubble overnight (I know!). And also partly a little basal-tweaking needed as my half marathon training has started to kick in. What was looking to be a pretty decent set of figures for the month are suddenly looking decidedly ropey.

It's like that moment when [insert the name of your favourite sports star or team here] has put in all the hard work throughout the [season/game] and looks on course for glorious victory only to throw it all away with an errant putt on the 18th green, a missed double 16, by spinning out on the corner, conceding a sloppy goal in the 89th minute, or double-faulting the set away with a catastrophic loss of concentration.

It hasn't helped that I had a letter today from the fine folks at the mobile eye screening service today to say that they had spotted some 'background changes' in my eyes again. They said that once before a few years back, but I have to confess I far prefer the letters since then where they had been saying, "Nope, nothing to see here matey". No treatment needed, just another 12 month check. But not ideal news in a week where on-target readings have been a bit thin on the ground.

And of course (crassly stupid mistakes aside) those days when the wind is behind me and my pancreas-impersonating-guesses all come together with effortless perfection rarely 'feel' that different to the days when every reading seems determined to skip over that ever-so narrow target range that we all try to aim for. Days when meter and pump are constantly warbling warnings of imminent doom for being too high or too low. This is particularly the case when, like now, my basal profile needs a little tweaking. Tried and tested approaches, ratios and meal choices lose all reliability. Corrections and doses either seem to disappear entirely or hit home like a sledgehammer. And all the time I'm trying to just do the 'normal' things that I know work.

Albert Einstein is often quoted as having said that:

"Insanity is doing the same thing over and over again and expecting different results."

Well I don't know about insanity, but that's a pretty darned good description of living with type 1 diabetes.

Bubble, bubble, tubing trouble

Looking at my stats it seems Artoo has been having a bit of a run of form recently. Not without a wobble here and there obviously (let's not be silly) but certainly a decent punt at things on the whole, and far fewer eye watering levels in the 20s than in any of the months since I started on an insulin pump (which were never really part of my MDI experience). According to the funky monthly reports on my current BG logging app of choice (the excellent mySugr - 'making diabetes suck slightly less') my purple patch seems to date back to October. I even seemed to manage Christmas with fewer Quality Street induced gaffes than I would normally expect. Generally average BG in the high 6's low 7's (108-126), with an SD around the mid 2's (36). This makes me happy.

Aside from me taking a *very* long time to get used to the whole pumping business (Artoo was very patient with me) I believe there are a couple of changes which have helped me, so I'm posting this insufferably smug blog entry just in case there are any frustrated insulin pumpers who stumble upon it that are putting in all the effort but not seeing the results they are hoping for.

Firstly, September was the time that I switched infusion sets. I'd been having a fair few failures for some months, but only in amongst a majority of set changes that worked perfectly. At the time it was less obvious, but looking back, a readings/recoveries from mid 20s almost every month were messing things up for me. If you are getting set failures/site issues more than a couple of times a year it could well be worth asking your clinic/DSN/endo what alternative lengths and types of infusion sets are available to you. I've not had *one* site failure in the past four months - and aside from the lack of eye-frying levels, it also makes me feel a lot better about the whole business of diabetes day to day (as hard as I try not to part of me always takes these out of range disasters as a sort of personal failure).

Secondly, and my initial reason for writing this post, I think I have cracked the 'bubbles in the tubing' problem. Maybe not 100%, but pretty darned close. I'm not sure how common this is, but throughout my first year on a pump I was occasionally victim of a 'phantom bubble of doom'™. I'd fill the reservoir with room-temperature insulin as advised, having first moved the plunger up and down to lubricate the inside of the reservoir. I'd flick and jiggle for all I was worth until I was absolutely sure that there were no bubbles in the insulin. Fit the reservoir to the pump, and prime with the pump vertical, tapping all the while to ensure that any rogue bubble-ettes got expelled in the priming, and then connect everything up happy in the knowledge that I had achieved the perfect bubble-free set change. BUT. The next day, look at the reservoir and BAM, there it was a big, fat, lurking, bubble of doom. Ready and waiting to find its way into the tubing at some inconvenient moment and then effectively deprive me of basal for an hour or two. Or mess up a meal bolus. Or both. I do try to check my tubing a few times a day but these suckers are hard to spot. And just as frustrating as the high BGs they caused - was not knowing where they were coming from! I was as sure as I can be that they were not there when I changed the set. They just seemed to be emerging out of nowhere with an evil glint in their eye overnight.

I did discover a suggestion on You Tube, which I won't link here as it was a complete disaster for me. The technique (described as something like 'degassing the reservoir') involved creating a fairly strong vacuum in the insulin vial by repeatedly drawing air out of it until you could do no more. Do not try this! My experience is that reservoirs are just not designed to operate under that kind of pressure. On more than one occasion (and I only tried it about 3 times!) the o-rings failed and insulin began to leak 'behind' the plunger while the reservoir was in use. Complete BG chaos. But it did get me thinking...

If you too suffer from occasional 'phantom bubbles of doom' - here's what seems to be working for me. When you draw up the insulin into the reservoir it is usual to first inject air into the vial, equivalent to the insulin you are about to withdraw, to equalise the pressure. Instead of this only inject half of the air into the vial. Additionally you should make sure that you inject the air with the vial downward, then invert the whole caboodle to draw up the full insulin amount. Then flick and jiggle any bubbles that have crept in as normal. Disconnect the reservoir first, to allow the air pressure in the vial to normalise again. It seems that the very slight vacuum created is not enough to worry the o-rings, but is sufficient to make the insulin less 'aerated' in the reservoir. Or something. Anyhow, it seems to be working!

Obviously... Disclaimer, disclaimer. Not medical advice. Consult a qualified person. Don't try this at home. Read the documentation supplied with your pump. Simply reading this blog post may void your warranty etc etc.

If you have any top tips that you have discovered for yourself - please share them below :)

New year. New challenges.

Happy New Year all of you. Trust you had a suitable treat-filled festive break and hope that your levels played nicely if you are also one of those people who 'enjoys' a little pancreas-impersonation on the side.

In an unexpected (and possibly quite unwise) move I have decided to take on a little new year challenge and will be running the Bath Half Marathon on Sunday 3rd March 2013. I blame the decision on a good natured after-dinner family conversation fuelled by the dangerous combination of optimism and red wine.

I can still remember the time when this joke made sense

I've always quite liked Marathons. Particularly pre-diagnosis. Which is lucky really, because by the time I got diagnosed they had made that fateful name-change decision, which completely ruins this gag.

On the other hand I've never run any kind of real distance. Ever. I've been going to the gym semi-regularly for a few years, so at least I'm not starting from absolute potato, but I am still quite daunted by the prospect. Fortunately a keen distance-running forum friend has been on hand to offer tips, advice and even a detailed eight week training programme.

Day 1 was today. Thankfully the instruction was to run '30 minutes at easy pace'. The rest of the week looks a little more challenging. I'm not even going to look at next week - I suspect it mentions hills.

I am very grateful to Diabetes UK for the offer of a place at the 'Bath Half', and have committed to raising a minimum of £250 for their worthy cause.

If anyone would like to support my endeavours you can make a donation safely and instantly online via JustGiving here: www.justgiving.com/everydayupsanddowns. And the great news is that all your money will go to the charity and that DUK can reclaim tax to make your money go further.

If you live near Bath feel free to pop down and laugh at me on the Sunday. I'll be the sweaty one at the back, breathing hard and clutching fruit pastilles.

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.

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.