Information About Diabetes

The amazing amazing D-OC

As 2010 draws to a close I find myself looking back over the last 12 months and in particular the changes to my experience of diabetes. Emotionally sensitive readers, or those who find gushing saccharine-sweet outpourings a little cloying may want to look away now.

As the year began I was just doing what I always did to keep my diabetes under control. It worked, more or less, most of the time. There were a few too many highs, a few too many lows, the constant contradictory feeling that things could be better and that things were as good as could be expected while retaining any semblance of a normal life. I think this feeling plagues many diabetics. The suspicion that if you had more self control or were willing to give up treats/flexibility/various major food groups and could commit to live an identical gram-perfect life every day your control would finally be sorted. Except that you can't. And let's face it even if you did you'd be pretty miserable, or at the very least pretty difficult to be around.

So I pottered along happily enough, thinking that things were OK. In a way I suppose they were. Then in February I had my unfortunate event (apologies to Kermode and Mayo's podcast) which, without boring you with details involved at various points: a massive hypo, loss of speech function, a suspected stroke and a trip to A&E. Suddenly the goalposts shifted and control which was 'good enough' was no longer good enough.

At about that time we began looking around online for people writing about their life with diabetes. There were a few European blogs, seemed to be almost nothing in the UK and quite a large number in the US. So we decided to begin our own blog - somewhere to share our experiences, rant, weep and post questions. Mostly writing for ourselves, but with some small hope that our shared experiences might offer support to others living with or affected by diabetes.

Life, like drawing is often a case of 'the more you look, the more you see'. Almost as soon as we had started writing about our own experiences we began to get feedback, comments and contact from a huge network of online diabetics. We began to have contact with well-established blogs, busy forums and frantic tweeterers from all over the globe. Before long I came across the term D-OC (the Diabetic Online Community), or to give it it's official US-style title the Awesome D-OC.

Steady now. Here's where it's going to get mushy.

You guys are amazing. Absolutely, completely and staggeringly amazing. Helpful, supportive, full of empathy, encouragment and very, very funny. Wise without being pushy. Full of advice but empty of 'rules and regulations'. I learned more tips, tricks, approaches and strategies in 6 months' contact with diabetics online than I have in maybe 15 years of appointments with Consultants, Registrars, Diabetes Specialist Nurses and Dieticians. I have been supported by diabetics of every type and have finally began to understand a little about life with type 2. Crucially all information is always suggested from the basis that everyone is different, there is no one-size-fits-all approach which will work. No overtones of judgement. A recognition that everyone will manage in their own way, with their own targets. Their own truimphs, failures and weaknesses. That we are all struggling against this common enemy on our own unique body-shaped battleground.

It struck me earlier in the year when the kids were listening to the Glee soundtrack (don't ask me which one), that the D-OC should have Bill Withers' 'Lean on Me' as its anthem (a power-chord laden reworking by Blunt Lancet, naturally)...

Sometimes in our lives we all have pain
We all have sorrow
But if we are wise
We know that there's always tomorrow

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

If there is a load you have to bear
That you can't carry
I'm right up the road
I'll share your load
If you just call me

So just call on me brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you'd understand
We all need somebody to lean on

I still have ups and downs, hypos and hypers, but these seem fewer and further between. Thanks to the advice and support I have been given from people I have never met (nor in many cases am I ever likely to) I can honestly say that I have never felt so in control of my diabetes in all the years since diagnosis. I am not due to have an HbA1c until around April but my monthly averages for the last five months hover around 6.9mmol/l which, if the conversion formula is to be believed, equates to an HbA1c of around 5.9%. That's a full 1% drop since my last one.

So thank you all. Here's to a happy, healthy and spectacularly well controlled 2011 for everyone.

The consistency conundrum

Christmas is an interesting time of year to play at being your own pancreas.

The main Christmas Day meal itself is usually *ahem* relatively easy (especially since I adopt the traditional standpoint of 'no carbs count' for Christmas and birthdays). As meals go, it is big... it is rich... and it will probably involve a pudding the size of a bowling ball... But it is basically just a roast dinner and it is only one day - and you can't expect perfection all the time right?

However, on an alarming number of occasions either side of the 'big day' I find myself faced with my own particular food nemesis - a creaking table full of buffet nibbles. Each little carb-laden, high-fat morsel smiling sweetly up at me daring me to have a go. A festive tipple or two to blur my judgement and weaken my self control and you can see that these meals fall firmly into the 'high risk' category.

Which is quite an odd way to look at food really... But I've been doing it so long that I hardly realise I am doing it.

Over the years it has seemed logical to me that consistency in terms of food intake is likely to be a good strategy for Blood Glucose results. It makes sense surely? Eating similar quantities of similar foods should allow me to try out a number of dose and timing variations until I find one that works. Then I can eat that same meal any time, and get perfect results. Tried. Tested. Predictable. Easy! Other meals are much harder to calculate (read: wildly guess) and almost come with an inbuilt expectation of BG chaos. If you are going to enjoy these... you do so knowing that levels are likely to be less than perfect.

Except that it doesn't actually work like that. At least not for me, or perhaps just not all the time. And when it doesn't work like that... When an 'old faithful' lets you down catastrophically, while in the same week a 'wild stab-in-the-dark' guessfest comes out not too bad, you begin to wonder why you are bothering to make those careful choices in the first place.

When it comes to playing the BG boardgame (not so much Snakes and Ladders as Spikes and Hypos perhaps?), my diabetes, like some cantankerous elderly maiden aunt who hit the sherry early on is a big ole cheat. Not averse to completely changing the rules when it suits, or simply behaving in a completely baffling way. Even *if* I were to eat exactly the same items of food, in exactly the same quantities every single day. Even then, I still could not expect 'perfect' BG levels (whatever that means) to last for long. The consistency conundrum is simply that carbs, doses and timings are only a small part of the picture. There are a lot of other factors in play that can combine (or conflict) to significantly alter the outcomes for the most self-disciplined diet.

Douglas Adams summed up living with type 1 diabetes pretty well:

“The nearest approach the Guide makes to this matter is on page seven-thousand-and-twenty-three, which includes the words “expect the unexpected.” This advice has annoyed many Hitch-Hikers in that it is ‘A’ - glib, and ‘B’ - a contradiction in terms. In fact, the very best advice it has to offer in these situations is to be found on the cover. Where it says, in those now notoriously large and famously friendly letters, 'DON’T PANIC'.”
Douglas Adams, The Hitch-Hiker's Guide to the Galaxy.

In my heart I know that trying to reduce the number of variables involved in juggling my BGs is the 'percentage approach'. After a few days of winging it I usually have had enough misses for the illusion of SWAG invincibility to have worn off.

So I'm reeling my choices back in again, and aiming to lose some of the wilder swings I've seen over the past week or two. It will always be a balancing act. Along the line between complete dietary freedom at one end and monk-like self control at the other there is a place where each person with Type 1 Diabetes will feel comfortable, both with the food they are enjoying, the effort they are putting in and the results they are seeing.

Good luck in finding your own balance.

A rough start with the Accu-Chek Expert

When I look back in a few months time I suspect I will think to myself that this was just a bit of bad timing. That of course this was going to be a struggle at this time of year with the variety of 'unusual' seasonal meals adding a lot of confusion to the early days.

My first few days with the Accu-Chek Expert have not been easy. So much so that I was tempted to give the whole thing up on day 3. But the funny thing is I can feel myself wanting it to work so much. To be able to abdicate this responsibility of constantly holding all those threads in my mind. What has been injected, how long ago, what has been eaten, likely absorption curve. Level of activity, current BG level, factors which pull this way and that when trying to calculate the correct insulin dose for a meal. Wanting just enough insulin to pull sugars back from being a little high, without going too far and ending up dipping into a hypo. The relentless daily balancing act.

And this is just what the Expert promises to help with. But of course it's only as good as the information it has got to go on, and at the start, unsurprisingly, this has not been quite right. To begin with, perhaps to err on the side of caution, it was suggested by the DSN to try a ratio of 1u:15g (one unit of insulin to 15g of carbs). This was based on a quick '500 rule' calculation based on my total daily dose. I suppose I wasn't expecting it to work, having worked hard for a year to tighten things up if I'd been out by 50% I suppose I would have noticed. Nevertheless I gave it a go. The following day I dropped it back a little during most of the Expert's time blocks (you can set different ratios at different times of the day). But it was still disastrous, perhaps due in part to inaccuracies in some of the other settings (expected insulin duration, expected amount of BG change per unit etc).

One of the things which surprised me is how vulnerable I was to doubting my own experience. Seeing a bolus dose suggested and thinking, "That doesn't sound right...", but then worrying that the figure I had in mind might not have been right either. Kicking myself when I soared high or crashed low thinking, "Bah! I knew that was going to happen." when in fact I could have stuck to my guns and overridden the suggestion each time.

So from a daily BG average of 5.4 (97) and 5.9 (106) which are arguably slightly on the low side in the 2 days before the Expert, I had an average of 10 (180) ouch! Then 8.2 (148), 8.7 (156), 7.2 (130) and 7.1 (128). To make sense of those numbers... if I stayed completely in the recommended range and tested before and after each meal I would get an average of 6.5 (117).

Like many diabetes things, this will take care, attention and more than a little experimentation to get right. My hope though is that I might have Colin (E decided he needed a name) as a little digital assistant every time I eat, to offer a half-decent suggestion of a bolus for whatever carbs are on my plate.

Here's hoping anyway.

Merry Christmas everyone!

Update: Accu-Chek Expert Review - one month in

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.

New gadget - the Accu-Chek Aviva Expert

I have a meeting with a DSN tomorrow (Diabetes Specialist Nurse). A few months back they offered me a trial of the Accu-Chek Expert handset, and while that didn't quite work out, they do now have a few from the manufacturer that they are able to let people have.

From what I've been told the Expert is essentially the same as the 'brain' of the Roche insulin pumps. More than just a BG meter it allows you to input your carbs, level of activity and insulin ratios and will offer a suggested insulin dose based on the information you provide, plus an allowance for level of activity, stress etc.

It all sounds very promising and I'll be interested to see how fiddly it is to use in practice.

For the last 5 months or so I've been logging all of this information in the excellent DiabetesDiary for iPod/iPhone. It has really helped me spot patterns and thanks to its incredibly easy data entry and some nifty data views (monthly and 7 day graphs, monthly average and 7 day average graphs, min max and mean for any time of day flag etc) the Expert handset now has quite a lot to live up to in terms of usabillity and ease of use.

I'll let you know how I'm getting on when I've had a few days to play with it.

Update: Accu-Chek Expert Review - one month in

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.

Diabetes bashing on Channel 4 News

UK diabetes forums erupted in indignation yesterday following a report on Channel 4 news.

Channel 4 News - Diabetes: the insulin investigation
While on the subject of health, I should mention that later in the programme we have a completely sensational film about diabetes and the high cost of a new form of insulin.
Diabetes already costs the NHS £9bn a year - our investigation has discovered that these new insulins - now used by millions in the UK - only offer minor benefits compared to older versions. Meanwhile they are costing us tens of millions extra annually.

The film exposes what some see as an attempt by big pharmaceuticals to transfer the world's diabetes sufferers onto an insulin which has only modest advantages for most patients - but is very profitable for the companies who make it.

I didn't see the report when it aired but thanks to the wonder of the interweb I was able to watch it today. This put me in the strange position of beginning to work out what I felt about it before I'd seen it.

Initially I wasn't sure what everyone was so upset about. But then I watched it.

The real shame is that the actual story is quite interesting. I didn't realise, for example, that there were more type 2's using insulin than type 1's (at least this is what was inferred in the report). I suppose it is possible since the number of type 2's is so much higher that even the relatively small percentage of those who use insulin therapy do indeed outnumber the total number of type 1's (who all use insulin), but it was still a surprise.

For type 2's using insulin the report suggests that many (most?) patients would get very similar results using older human insulin formulations as they do with the newer (and significantly more expensive) analogues. It was not made clear how this had been researched. If you watched very carefully, and if you already know a great deal about the subject matter you might just about have been able to glean that none of this is the fault, or choice of the patients. That it is the Big Pharma reps who stroll around hopitals wooing DSNs and diabetes clinics so that analogues become the default choice. That those specialist nurses are often far less familiar with the older formulations and do not feel confident in putting patients on them. There's no point in keeping patients, particularly diabetics, on older ineffective therapies because the short-term savings will be far outweighed by the cost in treating the diabetic complications that will follow. Similarly there is no need to prescribe insulins which cost 2 or 3 times as much if a more cost effective medicine provides the same therapeutic benefit. Which variety of insulin a patient uses should be a decided by clinical need, not some lazy default choice and certainly not purely on the encouragement of a Big Pharma rep!

Sadly, I suspect almost no one understood this from the report. Especially if they have heard or read pretty much anything else about diabetes in the last few years in the media. Because there is a very real, very big problem with the way matters concerning diabetes is reported in this country. In my experience the thrust of pretty much every article is in one of two directions.

Diabetes is very, very expensive to treat and it is costing the NHS (and that means you dear reader) an absolute arm and a leg in taxes.
Diabetes is caused by eating too much sugar and/or fat. People who get it are fat, lazy and only have themselves to blame. Now see point 1.

Occasionally the journos might throw in some other snippet about it being 'cured' by eating your own earwax or something similarly ludicrous, but by and large it seems to be either 1 or 2 or a combination of the two. And the more exaggerated and terrible they can make the story the better.

So it is into this terribly mis-informed world that yesterday's news report lands. Did they take the opportunity to explain some of the complexities of the condition? No. Did they carefully explain which of the many types of diabetes were affected? Not really. The focus was unnecessary cost and unless you know different already you would assume that the problem lies with every diabetic. Indeed many outraged comments from diabetics suggest that even those 'in the know' were mightily confused.

It didn't help that they began with a headline figure of the £9 billion. That is a whole lot of NHS money, and it goes on treating diabetes in the UK. Having got the really juicy, scarily big number out there they then threw about lots of other costs and figures. £300 million a year on insulin, and later £250 million potential saving. What? You could save almost the entire cost? Ah no! Sorry, you weren't listening carefully... the £250 million was over 5 years. So that's £50 million a year. Still not to be sniffed at, but sensationalist journalism and quite misleading.

Part of the problem, of course is that nothing about diabetes is easy.

The media don't understand it. They don't feel the need to understand it. It's a Big Problem and rather than take the trouble to research it properly they can stick with what they know (see points 1 and 2 above).

It seems to me that diabetes is an umbrella term for perhaps dozens of different disorders - Type 1, LADA, MODY, Gestational, Double and of course Type 2 the media's favourite Big Target. Some types quite are closely related, others very, very different and I've read that Type 2 is really just another umbrella term for a very large number of sub-types. The reporting, though, only ever talks about 'diabetes' as if it were some sort of indivisible whole. There was a passing mention of type 2 last night (about halfway through) but no explanation as to what that meant, or how and when a person with type 2 might be put on insulin. There was no clear explanation given about when the more expensive insulins are particularly effective and well worth the extra cost. Again and again different talking heads just repeated that 'the old stuff is just as good, and it's so much cheaper!'. Particularly misleading was the repeated blurry white-room shot (sourced from an image library by the look of it) with several young twentysomethings injecting into their abdomens. A group of people who seemed pretty much your archetypal type 1's to me, illustrating a report about insulin therapy in type 2.

The tragedy is that, from my type 1 perspective there seems to be a significant problem with the way type 2 diabetes is treated in the UK. Many of the type 2's in question will now be using insulin because their diabetes has progressed through treatment by diet and exercise, then oral medications and finally to insulin. They will probably have been refused prescriptions for blood glucose strips by their GP (even though the NICE guidelines mentioned in the report support SMBG - Self Monitoring of Blood Glucose in motivated individuals). Many will have been told they don't need to test, an annual HbA1c is enough. Without the ability to monitor what happens to their blood glucose levels when they follow the dietary advice they are given they will not have known how catastrophic it can be. In it's most extreme form "eat lots of starchy carbs with every meal" I have heard accounts from type 2's who actually began to eat more carbohydrate after diagnosis believing it will keep them healthy. More carbohydrate = higher blood glucose = more damage and excess glucose stored as fat.

Now if the £50 million a year saving was reinvested in test strips for type 2's. And proper education was put in place to help individuals establish the level and types of carbohydrate that their bodies can tolerate (because every diabetic is different), perhaps the 'inevitable' progression towards insulin, for some at least would be slowed. Maybe for others it would be reversed. I have heard of many type 2 diabetics who have moderated their carbohydrate intake by self-funded SMBG and have been able to reduce and then stop oral meds altogether. And at least one who appears to have recovered normal pancreatic function almost entirely.

Now that really would save the NHS some cash.

Curious? You can watch the report here.

Christmas Wishes - Guest post for Diabetes UK

Sometimes diabetes feels more like an uphill struggle than others. I'm in one of those periods at the moment. The months are rolling by with a constant sense of dissatisfaction with my BG levels. Strategies are being tried, seeming to succeed then seeming not to again. Then the situation turns on a sixpence and I'm having to reverse all the dose changes I have been carefully making - chasing lows not highs, vice-versa, or more usually both at the same time. It's relentless.

I'm not quite sure where I read it but I saw something online a little while ago that talked about why it is that you are more likely to be made unhappy by the little niggly things than really big important events. It seems our brain deals with life with a degree of caution and because all of the mental and physiological engines that kick in when Something Big happens are hard work and take up valuable resources it does not dish out these responses easily. So that if you were involved in some sort of nasty accident you might be able to think coolly and rationally about what to do, and be flooded with hormone responses so that you can work through the process of fight or flight; of escape, manage, repair or recovery with your happiness relatively intact. The small things, however, just slide under the radar and you don't get that helping hand.

Living with a long-term illness is often in the 'under the radar' territory. Sometimes for me, living with type 1 diabetes seems to offer little more than a gentle, relentless sense of failure. Occasionally this is not exactly helped at clinic appointments. How often have you been told to "Just keep doing exactly what you are doing - your levels are perfect!". No, me neither.

Living with type 1 diabetes is an ebb and a flow. Sometimes you discover a new technique, or make a big change like switching insulins or moving onto a pump and there will be a period of readjustment and relearning where you feel you are actively working toward something. It might be that you decide to tackle a long-standing challenge: exercise... overnight levels... restarting regular testing. These can provide short-term goals which allow you to measure progress, focus on achieving whatever it is. Even if you don't succeed straight away there can be a sense of positive feedback. Struggling through and getting it done.

But then there are the ebb tides.

I'm now starting my fourth year on an insulin pump. In the first year I quickly discovered I had no idea what I was doing. I managed to get the basics in place relatively quickly, but I think it was the best part of a whole year before I really felt I was making progress. The second year was more polishing and refining. Working out dual/combo and extended/square bolus options for 'tricky' meals (and them working out again, and then again). Improving results around exercise, and beer (all the important things you understand). In the summer of 2013 I had a run of absolutely extraordinary months of BG results. The best I have ever seen.

Then things got a bit wobblier. But I didn't worry - only to be expected after all. Then wobblier still. Ah well - maybe next month... And so it has gone on.

I wish I could have those levels back. But as much as I have tried to replicate the techniques, food choices, dose adjustments, basal pattern resets and everything else in the months since, certainly over the last 6 months it has just been one set of slightly disappointing results after another. Part of me wishes I had never had that glimpse of what was possible at all. Not had them to compare against. I have had brief periods of decent results since (notably with the Abbott Freestyle Libre), but all too quickly things have strayed again.

So here's the thing. If you are struggling a bit at the moment, and feel like it's all gone to pot - it is NOT your fault.

Keep chipping away at it. Keep doing what you can. You are doing an amazing job, and if the tried and trusted techniques you have been using are not working so well right now it is not YOU that moved the goalposts. You are doing your bit. It's your diabetes that needs to pull its finger out and start behaving again. If all else fails go back to basics and start again, but keep going.

So I wish you all more 'flow' this Christmas, and a lot less 'ebb'. All through the festive period and into the New Year I wish for you (and me!) to be happier with the results we are achieving. To lose any sense of disappointment or self-judgement where things go a little off-track and unlimited patience to gently steer things back toward the middle ground again.

Patterns, pitfalls and playing the game

Sometimes diabetes seems understandable, logical, reliable almost. But not today.

The times I find diabetes hardest to deal with are the times when it just doesn't seem to be playing the game. When it takes it into its head to change the rules every day that week. When you never know what you are supposed to be doing because what happened yesterday isn't happening today.

I'm fortunate in that I don't seem to get ill very often, but I'm just coming out of a cough/cold thing which, unusually for me has pushed my blood glucose levels right up. Suddenly my total daily dose of insulin rose by about 50%. I kept things in check, more or less, for the few days it lasted - but knew that when things began to return to normal I'd have to back-off the extra insulin sharpish or I'd end up running low most of the day. That day, it seems was yesterday. I felt hypo much of the morning. I ate lots of extra carbs. Today I tried normal doses and went to the gym. Felt a little low mid-morning and had a couple of fruit pastilles. At lunchtime I was 12.0 (216). WHAT?! But I've not eaten anything like the extra I did yesterday (when I continued to putter along on the edge of hypoland despite all the sweets and biscuits I scoffed) AND I've only had half my standard 'gym day' extra carbs AND I tested after the gym and was fine AND AND AND...

So I stomped around and got all cross. And Jane had to bear the brunt of it. And I'm sorry.

These are the times when diabetes gets me down. These are the times when I know I am a nightmare to be around. These are the times I wish I could control myself. These are the times when I am most grateful for the love and support of my family. Especially Jane. I could not do this without you.

M x

World Diabetes Day 2013 - a late update

As you may or may not know, it was World Diabetes Day on 14th November - Thursday last week. It doesn't always get a huge amount of attention here in the UK, but early on Thursday morning I saw a tweet from someone who said that while they usually spare their Facebook friends and family any boring diabetes-related shenanigans they had decided to post something to Facebook every time they interacted with their diabetes care. That sounded like a brilliant and very simple way to help raise awareness so I shamelessly stole the idea and did just the same on my personal Facebook account. I was absolutely overwhelmed by the reaction from people, pretty much all of whom know I have diabetes (I've never hidden the fact) but who had not perhaps realised the amount of day-to-day faffing about that T1D management involves.

Better late than never - here's what I posted:

10.20 14 November 2013
Today is World Diabetes Day, so I've decided to bore you all senseless with some of the diabetes-based nonsense I have to do every day.
Before breakfast I checked my blood glucose level by taking a tiny blood sample from my finger and applying it to a test trip in my meter. The result at 7.10 this morning was 5.8mmol/L. That's pretty much spot-on. So I took some insulin, waited 30-40 minutes for it to get going, then ate some toast.

It's now a few hours later and I just felt unexpectedly hungry so checked again in case that meant my breakfast dose had been a little out and my blood glucose level was now running a little low. Nope. it was 7.8mmol/L.

That's a smallish rise after breakfast but within acceptable limits. I will need to check again at lunchtime.

12.32 14 November 2013
OK. So it's Diabetes time again. I need to get ready for lunch. At breakfast and lunchtime taking my insulin about 30-40 minutes before eating helps to keep my levels in check after those meals (bizarrely I don’t usually seem to need to do this for evening meals). I've tested at 5.8mmol/L again - this means my breakfast dose worked perfectly, bringing me back to my pre-breakfast level after the 4 hour duration of the insulin has passed.

I have not eaten anything since breakfast because, to be quite honest, juggling multiple overlapping doses of insulin in a short space of time to allow for the carbohydrate in a snack is such a hassle and provides such added complexity to my day that I find I'm better off just not bothering. It’s not that I can’t eat biscuits or cake if I want to... it’s just that the pleasure of those things is offset by the guesswork and calculations involved in trying to achieve good levels day to day.

I've estimated my lunch at 45g of carbs. I need to know pretty much exactly how many carbs are in *everything* I eat so that I can calculate insulin doses correctly. Fortunately I have a helping hand as my insulin pump does the maths for me. At 12.29pm I took 4.05u of insulin. I will have to keep an eye on the time now and aim to eat around 1pm otherwise the insulin will kick-in before my food and I risk my blood glucose level dropping too low.

Today is World Diabetes Day - this is what it's like living with Type 1 diabetes.

15.32 14 November 2013
More diabetes goings-on documented as part of World Diabetes Day. Just checked my BG (now you're used to the idea I'll slip into jargon) and it was 9.9. Not a disaster, but not ideal either. I should aim to be below 9.0 after meals to avoid future 'fun and games' like blindness, heart attack, kidney failure, amputation and so on (cheery!).

I had exactly the same lunch as yesterday (this makes things easier for me as it reduces the number of variables involved in my day to day decision making). But... I also made small changes to my 'background' insulin pattern yesterday to prevent some lower levels I’ve been having recently and it seems I've overcooked it a little.

I've added an extra unit to correct the high level and have re-tweaked my afternoon pattern again for tomorrow. This is one of the main advantages to an insulin pump (which I now use instead of multiple daily injections). The degree to which you can fine tune doses offers potentially amazing accuracy of doses and delivery. The drawback, of course, is that you have to be physically attached to a small pager-sized medical device 24 hours a day... But the benefits soon far outweigh any concerns you have over 24/7 attachment.

18.11 14 November 2013
World Diabetes Day again. Evening meal is pasta. And I'm still 9.1 despite the earlier correction which is well under way. Adding extra correction to meal dose.

18.50 14 November 2013
I’ve not just tested, but I am still thinking (worrying) about how this meal dose will work out. The carbohydrate in pasta usually digests fairly slowly for me, so sometimes I use options on the pump to 'spread' the insulin delivery over a longer period. This time however I have taken all the insulin up front as I'm high to start with and the insulin will probably struggle to keep pace with the food. Of course this means I will have to keep a closer eye on things this evening, just in case my guesswork as to what might happen between the food and insulin turns out to be completely wrong and I end up worryingly high or dangerously low. Today is World Diabetes Day - this is what it's like to live with T1 diabetes.

19.40 14 November 2013
Another update (are you all bored yet?) Tested an hour and a half after eating and BG was 10.3 Now even though this is *still* too high, it is actually encouraging because it suggests only a very small rise in BG level while the initial burst of glucose from food would be expected and insulin should be active. This means there is unlikely to be any issue with the cannula (the small tube under the skin through which the insulin is delivered) and/or the pump itself. If I had not eaten anything I would probably be well on the way back down now - possibly too quickly! Another check in an hour or two should provide a better picture.

Posted as part of World Diabetes Day. Millions of people all over the world - parents, children, teenagers and pensioners - are making similar judgements today and every day.

20.27 14 November 2013
More World Diabetes Day fun and games. Well, another test reveals my BG has now risen to 12.3mmol/L. Disappointing. I'm lucky in that occasional short-lived forays into double figures/teens don't make me feel awful like they do for some people, but it does mean that I don't necessarily feel it when my BG is rising and I'm expecting it to be falling. I have to find out by testing. I still have over a unit 'active' from my meal dose, but by now I should be approaching normal levels. I've corrected again, but this time I've dosed more than I should need in order to reduce my BG more quickly and will top up with some carbs later if I need to. Yesterday's adjustment which was intended to prevent low levels seems have been a little over enthusiastic for the afternoon and evening. I will be tweaking again it seems.

21.20 14 November 2013
Another hour further on... Another test. Still up at 11.9. Sometimes 'rapid acting' insulin can seem anything but. It would be tempting to add a little more insulin into the mix, but according to my pump I still have at least 1.8u still active. Of course, the pasta I ate earlier is probably still pushing BG upward to some extent, but it's often tricky to work out quite how much of a food's BG raising potential will already have passed. Today is World Diabetes Day, and I much preferred how stable my BG levels were this morning.

22.40 14 November 2013
Today is World Diabetes Day and I've decided to post something here every time I do something diabetes-related today. I haven't given you the full picture of course... These are just the edited highlights. I've not mentioned each time I've looked to check how long it was since I did ‘x’ or ‘y’, to see whether or not I now need to consider doing something else. Since about 3.30pm my blood glucose levels have been higher than I would like. When this happens I can use insulin to bring them down into a healthy range, but I can't overdo it as the body needs a minimum amount of glucose to function properly and if I overcorrect I could easily end up hypoglycaemic (where the brain is starved of glucose and begins to malfunction).
My efforts to correct my high levels so far this evening have been less than successful. I am currently cruising at 10.5mmol/L whereas by now I was expecting to need to be eating some top up carbs. It is difficult to work out exactly what has gone wrong and where all that extra insulin has wandered off to, but having waited and tested and waited and tested all evening I've decided it's time for one last gentle nudge. I still have around 0.5 of a unit circulating from earlier but I've overridden the pump's cautious suggestion and added another 1.25u to make 1.75u in total. I would expect 1u to reduce my blood glucose level by a smidge over 3mmol/L in about 4 hours which *ought* to bring me to the mid-5s by around 2am. That's the theory anyway - if you've been sticking with this from the start you'll know it's not quite been working out as expected so far this evening for one of several hundred possible reasons. I now have to decide whether to set an overnight alarm for 2-3am to check again. Or just hope for the best and see how things are in the morning. As a halfway house I'll probably wait up another hour or so to see what happens. Fun fun fun!

23.57 14 November 2013
My last post for the day - you will doubtless be very glad of that. Just tested again and I've dropped down to 8.4 with 0.7u or so still active. That's much more promising. Not quite sure what happened, but it could simply have been a slight error in dishing out the pasta earlier. Even though the amount of pasta we cooked was carefully measured a spoonful or two too many on my plate could have easily caused that sort of havoc from a highish starting point. On the other hand it may be nothing to do with that.

Today was not a particularly tricky one - I've eaten only tried and tested foods that I seem to be able to manage more often than not... I didn't do anything particularly strenuous or energetic that might have dropped my BG... I wasn't under undue stress or illness, both of which can cause BG upheaval... But I still managed to make a bit of a hash of it levels-wise nonetheless. Even relatively ‘normal’ days can involve a mind-bending number of conflicting and combining variables to navigate around.

On the plus side at least I didn't crash from too high down to too low and back again, but it has been a fairly frustrating 'wait and see' evening.

It won't be World Diabetes Day tomorrow, but I'll still be weighing food, calculating doses and trying to work out how to keep things in some sort of balance. There are around 3 million people living with diabetes in the UK, and something like 10% of them, around 300,000 have type 1. Thanks for reading, and congratulations on all having fully functioning pancreases you lucky lot!