The amazing amazing DOC

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 who live with diabetes. 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 Wittertaining 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 PWD (people with diabetes). 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 DOC (the Diabetic Online Community), or to give it it's official US-style title the Awesome DOC.

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 this online community than I have in maybe 15 years of appointments with Consultants, Registrars, Diabetes Specialist Nurses and Dieticians. I have been supported by people living with all different types of diabetes 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 DOC 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.

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

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

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.

1. 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.
2. 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.

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

6th Annual D-Blog Day - 6 things

No, I'd not heard of it either.

But today I saw lots of Twitterchatter from members of the D-OC (that's the Diabetes Online Community dontcha know) about D-Blog Day. Apparently this November 9th is the 6th annual D-Blog Day part of Diabetes Awareness Month (November) which includes World Diabetes Day (November 14th). It's a chance for the wide variety of people across the world who write about their experience of living with diabetes to post thoughts on a shared theme.

Thanks to Holly (Arnold and Me) whose post/tweet explained the background and inspired me to post something myself. The topic for this year's D-blog day is "6 things you want people to know about diabetes". Here goes:

1. Yes I can eat that.
   
   
2. Despite what you have seen in the movies, in TV medical or cop dramas and/or read in the papers, a diabetic who is trapped in a burning building/runaway train/hostage situation does NOT need Bruce Willis to abseil through the plate glass ceiling to deliver a life saving insulin shot in the next 30 minutes. Insulin is important. Yes. And I'll grant that lack of insulin is lots trickier for pumpers, but for anyone on old school MDI the missed insulin shot would more likely result in the slightly less dramatic 'getting a bit grumpy' or possibly 'needing a wee' if it went on for a bit. Life threatening it ain't. Not for a good while anyway.
   
   I understand it is rather frustrating that insulin which is all glamorous and full of dramatic potential should let you scriptwriters and journalists down in this way. Missed insulin doses for a diabetic will lead to hyperglycaemia (high blood glucose) and long-term this increases the risk of all sorts of nasty complications. The time-critical one that you are thinking about would be hypoglycaemia (low blood glucose). That's the ole 'diabetic coma' you'd read about on Wikipedia. Unfortunately though, abseiling in to deliver a small carton of orange juice just doesn't have the same ring, does it? Especially since the hostages are confined to the canteen full of cakes and sugar sachets. Sarcasm aside, it concerns me that on at least two separate occasions this year I have heard news stories that a diabetic fell ill because life-saving insulin was not administered while they were hypo. So COMPLETELY wrong! Really people it is not that hard! Insulin sends BG levels down. Carbohydrate (eg sugar) pushes them up. In an emergency down = bad, up = much safer.
   
   
3. Nothing about diabetes is straightforward.
   
   
4. There is more than one type of diabetes. And people develop all types of diabetes for all types of reasons. Despite the headlines, the causal link between being overweight and developing type 2 diabetes is far from clear. There are thousands of clinically obese people in the UK, but only a smallish proportion of them develop any type of diabetes. And some who develop type 2 are normal weight or underweight. Weight can be seen as a risk factor, but whether the developing t2 diabetes triggers the weight gain, or the weight gain and other genetic predispositions trigger the t2 diabetes is still not really understood. For the last time: You can't 'catch it' from eating too many sweets.
   
   
5. Structured education about carb counting is essential for anyone taking insulin. No really.
   
   
6. Everyone's diabetes is different. This is the real kicker. What works for one will get another in all sorts of bother. Different foods affect each diabetic slightly differently. An average daily carb intake that one would find perfectly acceptable would be impossible for another to manage. The insulin activity profile on the company website is only an average and your bodies response to it may well be measurably different. Some people will suffer from strange reactions and differences in the way their metabolism works for all sorts of reasons. Dawn phenomenon, somogyi, circadian rhythms, changes in temperature, stress, menstrual cycle (not me obviously)... Any or all of these things can wreak havoc with your BG levels, basal requirements, bolus ratios. See no. 3
   
   It's no wonder we diabetics sometimes give our care teams a hard time for the slightly woolly advice or suggestions they offer. If you've ever had really good, spot-on, tailored advice from your clinic, DSN or consultant you should congratulate them. They've taken all the thousands of possibilities (including errors and omissions in the information you have given them) and somehow managed to navigate through that maze of confusion to give you some advice you can actually use. Hurrah for them! Give them a hug at your next appointment. They deserve it.
   

A little consistency would be nice

Here's a thing... And for once I'm not whining about trying to keep my blood glucose levels in range while attemping some semblance of a normal life.

There are quite a few insulin pens on the market, I think it's fair to say that some are nicer that others. Some offer half unit doses, others permit particularly large single doses. There are even those (actually just one in the UK right now until the NovoPen Echo is released) that automatically record recent timings and doses. There are prefilled disposable ones and more luxurious-feeling metal cased ones. Brightly coloured ones and grown up serious ones. You would think we diabetics would be happy.

However, aside from the fact that many of the pens are actually quite nasty (flimsy, plasticky affairs that feel rather less than reliable), there is something about their design that frustrates me intently. Because there is no consistency in the design of the pen cartridges, different insulins are only compatible with a tiny fraction of a pretty meagre range. There is, of course, no reason for this. Readers of a certain age will remember the development of Betamax and VHS video. After the early excitement of both formats, it became clear to the industry that all the electronics brands would need to produce players compatible with a single format. For many MDI users the paltry choice of available pens is little more than a minor irritation, but I read a forum thread recently where a doctor was looking for an pen device which was easy to use with one hand. Someone suggested a pen which had a spring-loaded delivery via a sliding switch (the Autopen 24), but because of the current limitations such a choice will limit the patient to particular insulins. On the other hand if you are on Lantus glargine and would benefit from half-unit doses there are simply no compatible pens on the market. There are half-unit pens available, but none that fit Lantus cartridges.

There is, as I say, no reason for this. Where formats are common (audio CD, DVD, USB) competition still exists, brands are still able to assert their own identities and strengths. It feels as though development of the pens is seen by the pharmaceutical giants as a bit of a bind. But these companies are investing (probably considerable) R&D budgets into the development of these devices. Wouldn't it make sense then to see the pens themselves as an opportunity in their own right. To make each pen compatible with all insulins on the market. To produce better/more solid/more stylish/more advanced/more [insert your own wish here] delivery devices to build relationships with insulin users. After all these are things we are using day in, day out.

So come on Big Pharma, how about a little consistency in insulin cartridge design. Then patients could match the best insulin for them with the injection pen that best suits their needs. Not too much to ask, surely?

The carb counting black hole

A few weeks ago I wrote an open letter to Diabetes UK raising concerns about the advice given to diabetics when prescribed insulin. There are something like 6,000 newly diagnosed type 1 diabetics every year in the UK. If you add the number of type 2 diabetics put on insulin the figure would rise substantially. I'm not 100% sure when DSNs stopped giving carb-counting advice as standard in the UK, but at a guess it would be 10 years ago. If only half the newly diagnosed T1s are affected that's still 30,000 people being given insulin doses to take every day and no information to manage them effectively.

I am so outraged at the current situation that I copied the letter to my MP, the Minister of State for Health (with responsibility for long-term conditions) and NICE (the National Institute for Clinical Excellence). I'm pleased to say that I have now had responses from everyone. The content of some of those responses saddens me greatly.

The first reply I had was from my MP, who said she had written to the Department of Health and would let me know when she received a response. So far so good.

10 days later I had a reply directly from a Department of Health 'customer service centre' minion. The basic thrust of the letter was that the value of patient education was recognised and that luckily they have already put guidelines in place that make it all fine. DAFNE... local NHS... local PCT... allocation of budget... maximum benefit of local patients...

The reply from NICE went into detail about how carefully they sort out and their guidelines. Guidelines which, in the case of T1 diabetes in the UK, are not up for review until 2013.

And here's what is depressing about these responses. The NICE guidelines themselves are not that bad. But they don't actually say anything. They only cover broad principles, and it would be foolish to suggest that they could do anything else. If you have been told (by your trained DSN and/or dietician) that you can take your fixed dose and then eat whatever you like, whenever you like as long as you wear odd socks, this advice meets NICE guidelines. If your local PCT has decided that this advice constitutes a 'structured education programme' anything goes.

What the NICE guidelines do say is that proper education for T1s is crucial. They state that everyone should have access to a DAFNE course, or equivalent. They make the point that typically, a properly educated carb-counting diabetic reduces HbA1c by 0.9-1.1%. This correlates to something like a 30-40% reduction in development of diabetic complications. Even at DAFNE's fairly hefty £545 per person/per course pricetag it is still expected that the reduction in complications (and their attendant cost) will put PCTs that run the course in profit. Some PCTs however are taking a rather shorter view of things. Some patients are paying the cost.

By far and away the most encouraging, proactive and positive response I had was from Diabetes UK. Zoe Harrison, a DUK clinical advisor and DSN, took the trouble of telephoning to talk things through with me. She agreed with me that there is a black hole in diabetes education in the UK. She and Diabetes UK recognise that thousands of diabetics are being badly let down by their clinics. Not taught to carb count. Not taught the relationship between carbs on the plate and units of insulin injected (even when those doses are fixed).

DUK have added a comment to the earlier post which talks about patient education materials which they have developed and successfully trialled, and other materials being developed to educate the Healthcare Professionals themselves. Budgets permitting...

Speaking of budgets, it's a sobering thought that just one trip to A&E by a diabetic who gets into hypoglycaemic trouble because they have never been taught to count, measure or monitor their carbs costs the NHS £88 £1,034. The cost to the NHS of three afternoons of training in a local Diabetes Clinic? £66.

I sincerely hope DUK's efforts pay off. Money is found. Diabetes clinics start telling people what they did about carbs 20 years ago. The alternative? Here are some anonymised experiences under the current guidelines:

"Well you will not believe it but if you are not taught the basics of carb counting then guess what, the advice is zero, zilch, nada, nuffink" ('A' type 1)

"I was diagnosed as T1 6 years ago. The basic introduction I was given was just that. Basic. I was instructed in MDI during one very traumatic diagnosis day.We touched on carb counting and DAFNE, but only to say that they existed and that I might one day be taught." ('M' type 1)

"I was told what dose to take and sent on my way, I had to report what my pre-lunch figures were on the phone to the nurse every day for 10 days and she kept on telling me to increase the morning dose by 2u. What I didn't realise, was that I was unwittingly reporting the pre-lunch figures which were high as a result of over-treating the regular 11.30 am hypo. After some months I was fed up with the swinging BGs, regular hypos etc and weight gain that came from heeding the dietitian's advice to eat starchy carbs with every meal. So I got online and met a group of people who helped me. I fought tooth and nail to get onto MDI which I did. I asked the DSN (yes, I've seen a real one twice) about Carb counting and she said "We don't offer that service" ('PE' LADA)

"I don't get this carb counting malarky, I have asked my DSN but she says, 'It's complicated and we'll look at it in the future.' In fact I don't even know what carbs are..." ('P' type1)

"...spoken as one who has been refused carb counting education and was put onto 4 units novorapid with evening meal" (V type 2)

"A basic introduction would suffice, but if DAFNE is available, take it as it gives you a much better understanding of all aspects of the condition. Personally it turned my diabetes around." ('NR' type 1)

"My HBA1C about 7 months ago was 9.2, I started carb counting in September 2010 and my HBA1C in October was 8.3. Yesterday my HBA1C was 7.8!! really pleased with that, especially as I've not had many hypos to give a better 'false HBA1C'.

I'm not after any pats on the back but I do feel annoyed that I have had Type 1 Diabetes for 14 years before anyone had even told me about carb counting!! It makes me wonder how many other type 1's are out there in the same position?" ('P' type 1)

If you are interested, you can read the original letter to Diabetes UK here: Not counting, the cost.

Watching 'Bucket List' on No D Day

Well known diabetic ninja George Simmons (@ninjabetic) has declared today No D Day. Not that we get a day off from 'it' but an encouragement for blogs like ours to write about something else for a change. Something unrelated to the condition we wrestle with every day. In fact I didn't think I'd get round to posting anything today. But here we are.

I love watching films.

Right now, I find myself sitting tapping away while half-watching the film 'Bucket List' quite by chance. Something I recorded a while ago and hadn't got round to. I didn't choose it with any real thought, but somehow there's something very fitting about it given today's theme.

For those that don't know, it's a film that stars Jack Nicholson and Morgan Freeman as cancer patients thrown together and both given very little time to live. They embark on an adventure, attempting to tick off a 'to do' list before they die. So far it's about as silly as you'd expect from that summary (they are currently watching the sun set over majestic pyramids). There is though, something quite No D Day about the 'sieze the day' and 'you only have one life, make it count' themes they are subtly weaving in (with a trowel).

It's all too easy to get swept along in the chaos of daily life and miss the little moments of beauty. It's all too easy to feel squashed under the everyday and to forget to make space for the extraordinary.

Life moves pretty fast. If you don't stop to look around once in a while...

Oh no hang on, that's another movie.

Advice for new diabetics in one sentence

A few days ago Tim on Shoot up or Put Up posted a thread which asked, 'If you were presented with a newly diagnosed diabetic and had to give them your advice in one sentence, what would it be?'.

It was an interesting question to be asked. Diabetes can feel very complex and difficult to understand at times. In all the months, weeks and years since diagnosis I don't think I've ever got to the point of feeling I really understand it completely. There's always something new to learn. A new explanation for those confusing 'out of the blue' results. A new approach. Another lightbulb moment. So to try to distil everything you've picked up into one handy phrase is quite tricky.

There were some interesting and inspiring responses. Things about living life to the full. Being able to take control of the condition. Never letting it stop you from doing anything. Mine, by contrast seems rather dull, but it contains 5 little nuggets that I'm very glad I was told, or really wish I had been told at the beginning of my diabetic life:

Sometimes it won’t feel like it but this is something you can control - just count carbs, test lots, carry sweets and keep asking questions.

For starters, I know that sometimes however hard I try, my control seems to go all over the place. It's no fun battling relentless highs, persistent lows or perhaps worse, the zig-zag rollercoaster of overcorrection from one to the other. Aside from the physical grottiness of it, there is the emotional upheaval and the dark looming cloud of complications to add to the fun.

But...

It might be hard work, it takes a lot of effort, a little willpower and just a smattering of gut-instinct but diabetes is something you can control. Well most of the time anyway. As a type 1 it is a matter of matching the insulin I take with carefully counted (or more usually wildly guestimated) carbohydrates. A little systematic testing after meals can help to identify different and/or unexpected absorption patterns of different foods, pizza... Weetabix... you know the sort of thing. Then I have to decide whether I'll just avoid those choices entirely or work ways around the problem with timing/dose-adjustment. More testing helps me understand the effects of exercise on my blood glucose levels and combat those with altered doses and/or fast-acting carbohydrate for the rest of the day.

Writing everything down, not just BG (blood glucose) levels, but insulin doses, carbohydrate eaten at meals, exercise etc has helped me spot patterns this year that I'd struggled with for years.

If you have not been offered carb counting yet and you are injecting insulin I would urge you to ask your team about it. If for any reason it is not available in your area (and I'm not sure how this can be the case!) the online BDEC course might help. To be honest, even if you are type 2 and not on insulin, it seems to me that carb counting and using a meter to see what happens when you eat different amounts (and different types) of carbohydrate can only help you see how your body reacts and tweak your diet accordingly to aim for the challenging target BG levels we are set.

One of the most significant changes for me this year though has been to compare notes with other diabetics. I've never sought out the voluntary-group-tea-and-biscuits(!) sort of arrangements, but there are several thriving online forums (including one supported by Diabetes UK) where you can share experiences, rant, ask questions and generally converse with other people who are facing the same challenges as you every day. A trouble shared and all that.

Life with diabetes can feel hard at times, or impossible, or unfair. But all we can do is just keep on digging in and working to get the best control we can one day at a time.

I wonder what your advice to the newly diagnosed would be?

Diabetic Once Removed.

I've been otherwise engaged for a while, (summer holidays and change of school for Beth), but Mike's most recent blog, and the response he has had to it, has stirred me into action.

When Mike first mentioned to me, that he'd been coming across more and more people who had not been taught the relationship between what they inject and what they eat, I really believed that there must be a medical reason, some sort of logic wherein that extra bit of effort was now, thankfully, no longer necessary. Our instinct is to trust our doctors.

I said,"But surely they get refered to a dietician." And Mike said, "They do, but they don't all do carb counting." So what do they do? Presumably say, stay off the sweets, eat a low fat high fibre diet. I want to scream.

This diabetic business is a scary one. It is scary for Mike and it is scary for me, Ellen and Beth. It is scary for Mike's Mum and Dad and everyone who supports us. Ignorance makes it even scarier. When incidents like the one which made us begin this blog occur, we need to know why. We need to know what caused it, is it likely to happen again, and what to do if it does, we would like to be prepared. With diabetes, ignorance is not bliss.

Mike read a blog recently, where the writer refered to his immediate family as type 3's. He quite liked that description, though I think of us more as diabetic once removed. We need including in the education that has to happen. Not every diabetic that goes to see a dietician cooks at home, there is often someone else doing that job. I remember very early in our relationship, Mike showing me a glucose injection, and saying that if his blood sugar went really low I may need to use it. He said, "Practise on a grapefruit." I probably looked quite calm and said ok at the time, but it terrified me, and I remember thinking 'I'll just call 999.' I guess as a parent with a child with diabetes, you get some sort of training, but being diagnosed as an adult leaves you very much alone.

The important thing is to know how much carbohydrate is in your meal, we aim for 60grams, because it's easier for me to know what to aim for, and easier for Mike to know automatically what's likely to be in his meal without having to ask every time. It could be whatever suits your appetite I suppose, and can vary from meal to meal.

A quick guide if you're interested: 60grams of carbohydrate in a meal equates to:
75gr rice
100gr pasta
One and a half rafts of noodles
Half of a deep pan pizza, three quarters of a thin based pizza.
Naan breads vary, but often around 70gr carbohydrate each.

Actually all of these things vary, and you have to check the packs, but we find it useful to have a rough idea.

Potatoes are the hardest thing to estimate, we were initially told that a potato the size of an egg is approximately 10gr of carbs. That's useful for roasties, but useless for mash, and new potatoes are an entirely different problem. It's experience that helps with things like that.

You also have to take into account flour added, tinned tomatoes in a sauce adds a small amount, pulses add quite a lot, root veg if that is a large part of your meal can change the calculation, and of course look at the information of any jar or packet that adds to the meal.

If you're cooking for one, the job is then done, if you're cooking for a family, it's only just begun. You have to work out how much of what you've just measured out carefully, needs to be dished up for the diabetic in the house, to ensure that he/she is getting approximately 60gr of carbohydrate on his/her plate. Bear in mind not everyone around the table will have the same size appetite. Again, it's actually pretty easy with experience, but mind boggling to begin with.

I cook pretty much everything from scratch, but it is probably easier to make those calculations if you eat mostly from packets, which is ironic. It can still be healthy if you add lots of fresh veg, which mostly doesn't count at all. Mike can eat strawberries and melon without extra insulin, but all other fruit, including fruit juice, he has to allow for.

Mike mentioned the other day that when he first was diagnosed, he wondered whether he was allowed to replace sugar with honey. All sweet things have their price, we know that now, so we rarely eat puds, but allow ourselves a treat now and then. If it's shop bought Mike goes by the info on the pack, and invariably gets it about right. If I make a pie I use eating apples rather than cookers, so that I don't need to add sugar, if we're being good; but to be honest, so long as it's a treat and not the norm, it's nice to spoil ourselves now and again, and it's enjoyed all the more for it's rarity.

A good diabetic cook book helped me to get the hang of things, I had a small book produced by Sainsbury's, which was simple and clear with pictures, (a must for any cook book) not too many recipes to get overwhelmed by, just a few which looked appetising and manageable for a weekly supper. The same one is no longer available, but there must be similar things around.

I have an overwhelming desire to put my arm around anyone just starting out and say, 'It's going to be fine, you do get used to it, I'll show you what to do.' I suppose that, ultimately, is what we hope happens to anyone who is first diagnosed.

Jane

Not counting - the cost. An open letter to Diabetes UK.

Dear Diabetes UK

I was diagnosed with type 1 Diabetes in 1991 and joined the then British Diabetic Association almost immediately. Over the years I have come to value the support, research-funding, campaigning and much of the information that the organisation provides. However I am writing this letter because I feel there is a significant and quite dangerous problem with the advice being given to newly diagnosed type 1 and newly insulin-using type 2 diabetics in the UK. I am appealing to Diabetes UK to work with the NHS and healthcare professionals to implement new guidelines which provide essential information to new insulin users.

The problem is this: People are being prescribed basal-bolus insulin regimes without sufficient information about carbohydrate counting.

The problem does not appear to be universal. Some HCPs still do things the 'old way' and provide information about measuring the quantity of carbohydrate to match insulin doses but in a few weeks' research I have come across dozens of people, diagnosed over the last 10 or 15 years who were told little or nothing about the relationship between carbohydrate and insulin when they started a basal-bolus regime.

Some patients have muddled through, working things out for themselves, others have sought help and advice from peers or online forums. Even more worryingly, some patients report that they have asked their clinic or surgery for more detailed information only to be told that, "We don't offer carb counting here...".

This is insane. This is quite frankly, not good enough.

People are being instructed on what doses of insulin to take, and only being told to eat a diet which is low in fat, high in fibre and contains 'some' starchy carbohydrate at every meal.

When you inject a bolus dose of rapid-acting insulin the clock begins to tick. If you have not eaten enough carbohydrate within something like 30-60 minutes then your blood glucose level will begin to fall. If your level was within guidelines before the meal then the risk of hypoglycaemia becomes almost a certainty. On the other hand, of course, if your meal contains too much carbohydrate then your blood glucose level will rise steeply above and beyond the recommended limits putting you at greater risk of developing diabetic complications.

However, and this is the nub of the problem, 'not enough' and 'too much' become meaningless if the diabetic has never been instructed to measure the amount of carbohydrate they are eating. The problems are all too real, and the solution all too simple.

Every diabetic put on basal-bolus MDI (multiple daily injections) therapy must be given instruction on estimating, measuring and monitoring the amount of carbohydrate in their diet.

When I was diagnosed 20 odd years ago this was the case. I was introduced to a simplified 'exchanges' system, where fixed doses of insulin were matched with specified numbers of 10g 'exchanges' of carbohydrate at every meal. Even with that basic framework in place retaining good diabetic control is far from easy. Without, it is all but impossible. Consider this example:

Mr X, a newly diagnosed type 1 diabetic is told to administer 5 units of rapid-acting insulin to cover his evening meal and to eat low fat, high fibre diet which includes starchy carbohydrate. On Monday he has gammon, vegetables and new potatoes. On Tuesday he has soup and a wholewheat roll. Wednesday's meal is a wholewheat pasta bake. His meals, while in line with his dietary guidelines, contain approximately 50g, 35g and 70g of carbohydrate respectively, and yet he takes the same 5 units of insulin each time. One evening he is fine, another he goes hypo, another he ends up high. In 6 weeks he sees his DSN (diabetes specialist nurse) who tells him that his HbA1c is worryingly high and that he is having too many hypos. If his DSN looks at his blood glucose diary there will be a scattered pattern of highs and lows because, though the insulin doses are fixed, the carbs being eaten vary significantly and are not being measured or monitored. The amount of carbohydrate Mr X needs to match his fixed doses may be different to Mr Y. It may change over time, or if Mr X is more or less active than usual. But unless he is monitoring what he eats, he and his DSN will have no information on which to base informed changes to his regimen.

Some diabetics for whom 'MDI has failed' are put on insulin pump therapy. At which point they are automatically given instruction on carbohydrate counting, and rightly so. For many this is a lightbulb moment. But in all honesty there is little real difference in a 5 unit bolus given by pump and another by injection. Both will require a measured response in terms of carbohydrate eaten to avoid hypo- or hyperglycaemia.

I have no idea why it was thought better to give people less information to help them manage their diabetes. If you go back 15 years or so it seems everyone on insulin was taught the importance of counting carbs. When I was told by my own DSN that "we don't really do exchanges any more" I wondered what had replaced it. It horrifies me to think that what replaced a simple understandable framework was, in some cases, nothing. This can only have lead to poorer control, worsening HbA1c results and, by extension, more hospitalisations due to hypoglycaemia and a higher likelihood of patients developing costly (in all senses of the word) diabetic complications.

To advise people to take insulin without educating them about measuring the carbohydrate they need to eat in response is madness bordering on the negligent.

I urge Diabetes UK to work with the NHS and the government to ensure that every diabetic treated with insulin is given a simple framework of education, perhaps as little as a 10 minute consultation, that will help them understand the fundamental relationship between insulin doses, grams of carbohydrate and blood glucose levels.

Yours sincerely
Mike K

cc Dawn Primarolo MP Bristol South; Paul Burstow MP Minister of State for Care Services (inc Diabetes); The Editor, Balance Magazine

Update: If you reading this post has made you interested in carb counting yourself and your care team do not offer it, you might want to look at the Bournemouth (BDEC) online carb-counting course.

Update: The carb counting black hole

My pump problem and CGMS envy

I've been considering writing a post about this for weeks, well months really if I'm honest. I've kept putting it off partly because I keep finding out new things which change how I feel; and partly because what I want to write doesn't feel very current, very 'now'. It's not a view I read other people expressing. But I can put it off no longer - I just have to put something down, and if I change my view tomorrow, well you can all have a good laugh.

I don't want an insulin pump. There. I said it.

Now don't get me wrong, I don't think MDI (multiple daily injections) is a perfect system, far from it - it's just that I don't think pumping is perfect either. Swapping a set of difficulties I have come to know and understand for a completely different set that I see pumpers experiencing (or not mentioning) doesn't entirely feel like the brave new world the pump-evangelists keep telling me it is.

I do know that pumping has demonstrable benefits for many people with diabetes. I do know that pumping is the current 'new and exciting' insulin therapy. Pumping is cool. But that's not enough for me. Not yet anyway.

For those who have no idea what I'm talking about, an insulin pump is a smallish electronic device, similar in size to a mobile phone but around twice as thick. Within it there is a reservoir of insulin attached to an 'infusion set' - a length of plastic tubing (cannula) connected to a longish needle (by MDI standards) surrounded by a big sticky pad. The pump itself often has some electronic wizardry built into it to help you work out how much insulin you might need for a meal. You fill the reservoir, prime the set, insert the needle and away you go. No more troublesome injections. Insulin at the push of a button. And no more need for different types of insulin either. The 'basal' delivery is taken care of by a programmable trickle of insulin. One type of insulin is all you need.

The ability to trickle is, I think, the pump's big win. In terms of insulin delivery they are incredibly subtle devices. Injection pens tend to come in 2 unit, 1 unit or half unit increments. With a pump you can specify increments of 1/40th of a unit, depending on the model. The onboard electronics also allow you to set up very finely-tuned basal (background) insulin delivery profiles. A little more here, a little less there. Carefully balanced to match what your body needs during a 24 hour period. By contrast one or two injections of long-acting insulin a day with an allegedly (though not genuinely) flat activity profile seems preposterously crude, even to me. Going to be a little more active tomorrow? Just reduce your pump's basal profile by 5-10%, or set up a temporary basal rate. Boluses for meals are similarly flexible. The onboard calculator will suggest a dose based on your estimate of carbs in the meal against whatever insulin ratio you have set for that time of day and however much 'active' insulin you have on board already. More in the mornings... less in the evenings... fractional adjustments 1.275u:10g rather than the generous rounding up and down that I go for to make the maths easy.

Alison from diabetes blog 'Shoot Up or Put Up' makes a very good case. Her HbA1c (a test to indicate overall control) has never looked better.

So, you say, this all sounds very marvellous. Why am I not banging the table demanding one? Why, when pumps were first suggested to me by a consultant something like 5 years ago did I start down my pump-averse road? Why am I being so bloomin stubborn?

Well I'm not sure I absolutely know myself to be honest. But,

I hear of pumpers who say they would never go back to MDI.
I hear of pumpers who go back to MDI.
I hear of pumpers whose HbA1c levels are utterly transformed
I hear of pumpers whose HbA1c's stay pretty much the same
I hear people on MDI who swing crazily from high to hypo being recommended pumps
I hear people on pumps who swing crazily from high to hypo

and
I hear of pumpers whose kinked infusion set sends their levels through the roof (one teenage boy hospitalised overnight with borderline DKA, many others seeing levels I have never reached on MDI)
I hear of pumpers complain of infected infusion sites seeping yellow pus (sorry about that)
I hear of pumpers dropping their pumps and/or snagging their cannulas on door handles (ouch)
I hear of pumpers who find the sticky pads intended to hold the infusion set in position keep falling off

and
As a pumper I'd still have to estimate the carbs in each meal (and I'd get it wrong just as often)
I'd still have to make a guess as to how much I'd been more (or less) active than usual in tweaking bolus doses
I'd still be affected (or not) by heat
I'd still have changes in my basal requirements that need to be evaluated and adjusted for
I'd still have to work out if my liver was up to any fun and games, dropping in a little surprise blood sugar to keep me on my toes

In addition to all this I'd have to be attached to it. All the time. 24 hours a day.

On MDI I can leave my diabetic gubbins on the table between doses. Walk around like a normal person, well almost. Not so on a pump. The trickle of insulin needs to keep coming. And if you temporarily take it off to nip into the shower, or whatever, then you need to put in an estimated correction dose when you reconnect. With a pump all your eggs are in one basket. And you need to keep that basket with you. Which brings me to...

You have to carry it somewhere. I only ever have things in the front pockets of jeans, can't abide sitting, or leaning on anything in a back pocket. Women pumpers clip to their bras (apparently), but for me I suppose it would have to be clipped to the waist band like an 80s style pager. I have visions of a pump yoyoing around my knees as I break into a run, late for another appointment.

Night time would be even worse I suspect. I'm what you might call an 'active' sleeper, in that I roll around quite a bit (steady on there). Ellen seems to have taken after me in this respect and has been known to tie a duvet in a knot inside the cover. Quite a skill I'm sure you'd agree, but all my rolling around is not really pump-friendly. I'm not sure what I'd do with a pump overnight... gaffer-tape it to my chest maybe?

Not dropping it when you are getting changed.... Trips to the gym and getting all hot and sweaty... Swimming... Attempting to squeeze into a wetsuit for some holiday surfing... Crawling about in awkward spaces for DIY purposes... Bedroom antics...

I am told that these things are not a problem. That after a week or so you don't even think about it, but they weigh surprisingly heavily on me whenever I consider the potentially life transforming benefits of a pump. They also seem to get mentioned when people explain their return to MDI.

And then there are CGMSs.

Many, but not all pumps come with an added box of tricks. A CGMS (Continuous Glucose Monitoring System). Without one I suspect my overall control might get a little better, but not much. But I am absolutely convinced that a CGMS would make an enormous difference to my control. The system involves placing a small sensor under the skin which communicates wirelessly with a monitor (sometimes integrated into the pump itself, sometimes a separate unit). The CGMS records glucose levels every 15 minutes or so. Rather than the blood plasma used in fingerstick tests, CGMS systems are measuring the glucose level in interstitial fluid, so the results lag 10 or 15 minutes behind 'actual' blood glucose levels. Users tend to continue to use traditional meters to calibrate the CGMS and check results a few times a day. Crucially though, because the monitoring is constant, you get not only an indicative one-off level, but almost as important, you get information about whether you are stable, or rising, or falling and at what rate. You can be alerted when you hit a predefined level and make a decision on what measures to take based on how quickly things are moving and in what direction.

No more correcting for hypos that never were. No more suddenly discovering you've massively spiked after a meal and have been in the teens for hours. Alarms that alert you if your levels drop at night. More information. All the time.

And because a CGMS is wireless, you can keep the device itself wherever is convenient. Bedside table, coat pocket. There's no piece of string joining you to it and getting tangled up on things.

Both pumps and CGMS are expensive therapies. The devices themselves and their durables (infusion sets, wireless sensors) are both costly. But so is any treatment for diabetic complications you could mention. I know of a number of pumpers in the UK who benefit from a CGMS as part of their pump but no one, NO ONE, who has a CGMS as part of MDI therapy. If you are lucky you might be able to borrow one for a few days. Probably one of the old skool ones which store the results and have to be 'downloaded' at the end of your allotted time for your Diabetic team to pore over. And this is despite the fact that 2003 research suggests that a CGMS is as effective in reducing HbA1c and numbers of hypos for MDI users as for pumpers:

We found no difference in low subcutaneous glucose frequency between the 2 treatment arms, nor between MDI and continuous subcutaneous insulin infusion users.

And more recently from a 2008 study:

People of all ages - adults, teenagers, and children - who use CGM devices regularly (at least 6 days per week) can see positive results in managing their diabetes... Even people who already have their diabetes in control - meeting the recommended standards for long-term blood sugar tests - see improvements by using CGM devices

I don't know why it is that you can have 2 expensive treatment options (pump and CGMS combo) on the NHS, or just a pump, but not a CGMS on its own.

But I'm going to ask.

Going on holiday

We've just returned from a great two weeks away. This year we gave the kids the choice of three different holidays. Options included a fortnight by a beach, a short break in Switzerland, but the winner was a combo of a week in Ironbridge in Shropshire, followed by a week in the Lake District.

Holidays are always a bit of a juggling act diabetes-wise. You are completely out of routine, you eat out far more often, wine flows, ice creams and treats beckon.

Thankfully Lantus continued to behave itself back in its morning slot. Staying in the UK meant there were no pesky time-zone issues, though I did have to gradually shift my injection time to suit our more relaxed holiday breakfast timing. Thankfully my first blood test of the day was pretty much spot-on most days. I even managed a little experimentation with post-breakfast spikes. I've settled on a new slightly higher insulin:carb ratio taken 20-30 minutes before breakfast, depending on my fbg (pre-breakfast) level. An hour or two after breakfast was mostly in the 8-10mmol/l region which compared to some recent disastrous readings felt pretty good.

The other thing about holidays is all that great wandering about you can do. Ironbridge is absolutely packed with things to look around, and it's almost impossible to visit the Lakes without doing some kind of walking about. The benefit of this, of course, is that you can sneak an occasional ice cream or cake to keep your levels up, without having to worry about injecting. Either that or I just gradually worked my way through a pocketed packet of Fruit Pastilles during the day. At Blist's Hill (the Victorian Town museum close to Ironbridge) I even managed to win a Sherbert Fountain by knocking it off a shelf with a pop-gun at the Victorian funfair. Initially I was a bit disappointed that these now come in a plastic tube, rather than wrapped in yellow paper, but the benefit was it lasted in my pocket until a wander around Ambleside and Skelwith Force.

I'd forgotten all about Sherbert Fountains... Hypo prevention has rarely been so much fun. It was like being 8 again.

Lantus problems and going round in circles

And on and on and on...

When we began writing about our experiences of living with Diabetes it was, at least in part, in response to a nasty overnight hypo brought on (I suspect) by the action of Lantus glargine. From some reading I have done since it appears I am not alone in this. That there are other people with diabetes using Lantus and injecting their dose at night time (recommended by the manufacturer and for most people the best option) who find they sometimes go low overnight, or wake up low in the morning.

One of the difficulties in managing diabetes with MDI (multiple daily injection) basal-bolus is that if you don't get your basal (background) dose correct then everything else becomes incredibly difficult to manage. You have no firm footing on which to start your day.

I think the late-at-night injection timing is suggested because it puts Lantus's onset period (perhaps an hour two until full strength) at a time when you have finished eating for the day and are usually if not actually asleep, then pretty much at rest. When I moved my injection to the morning, though my overnight levels were suddenly very steady and reliable, I had problems with high blood glucose spikes after breakfast. In response I began to split the dose, morning and evening, having a little just before bed, and the rest at breakfast. My hope was that this would spread the activity more evenly over the day. Sadly though, after a few months I can see that this has caused more problems, and not really solved anything. I found I was waking up low again, or waking slightly clammy having gone hypo overnight. On several occasions my liver then took matters into its own hands and began dumping glucagon into my bloodstream as it's own emergency measure. I would wake high, inject rapid-acting insulin and wait until my levels dropped before eating breakfast. After 2 hours or so I would give in, my levels still stubbornly high, eat a fraction of my usual breakfast and wait to see how things were going at lunch. Not only that but if the smaller Lantus dose didn't send me hypo overnight, then it had run out of steam by breakfast anyway and I was heading for spike central again after breakfast. Smaller doses you see, tend to act over a shorter time. With no Lantus hanging around, and anything from 15-45 minutes for Humalog to get going even a fairly low GI breakfast was going to cause problems. What my neice might describe as an #epicfail.

So I've gone back to Lantus in the morning. Suppertime and pre-breakfast readings are more constant. The post-breakfast problem still exists, of course, but at least I've lost the overnight hypo and liver-dump double whammy. Last time I didn't spend much time experimenting with the timing of my breakfast bolus (rapid-acting) doses. My hope is that with enough time between injecting and eating I might be able to stay out of the teens between breakfast and lunch.

Maybe.

Walking the line (or why I don't like Mondays)

The other day I was reading on a forum where a fellow type 1 diabetic was struggling with a GP who was unhappy that they were testing too often.

Testing too often...

Someone else's GP had made a suggestion that anything more than two or three times a day was really a bit much. Actually I think they had talked their GP up from a prescription of 50 strips for 2 months. That's not much more than once a day. And certainly doesn't seem to acknowledge the DVLA guidelines for testing before (and every two hours during) any driven journey.

Sometimes it seems GPs just don't understand what it's like to live with diabetes day to day. Here's how it feels:

In the southwest of the UK there is the busy 'North Devon Link Road', for much of its length overtaking is forbidden by a pair of white lines down the middle just a few inches apart. Being a diabetic is like being asked to walk along that line. Blindfold. And backwards. As it twists and turns you'll have to avoid straying into the surging hypo-traffic rushing up on you from behind, or the thundering diabetic-complication lorries bearing down on you from ahead. A few times a day you are allowed to peep out from under the blindfold to see where you are and make a correction. Though if you look more than 6 or 7 times a day your GP may well say that you are looking a bit too often, and they have read a report that said it makes your walk more difficult. You just need to try a bit harder. Or you are trying a bit too hard. You should try walking a bit more towards the lorry side for a while. In fact what you really want to be able to do is to cut some little holes in the blindfold. But unfortunately those CGMS scissors are far too expensive. If you are lucky you might get one for a week, but if it's an old pair the doctor would look though the holes at the end of the week, then sew them up again.

Sometimes for all of us the road is wigglier than others. The traffic is especially heavy. The strategies and methods you usually rely on don't seem to work at all. Or work way too much. The road-walking equivalent of a dizzy spell.

The current cloud on my weekly horizon is Mondays. I seem to need a different set of insulin:carb ratios to avoid drifting teen-wards all day. Especially bad in the mornings, by evening meal while trying to correct I can overdo it and then drift low. Monday is the day furthest from a usual gym session, which might have something to do with it - exercise has a knock on effect for me for quite some time. I'm still having a tricky time of things working out what the current Monday ratio needs to be. I could tell you what it was a few months ago, but that doesn't work at the moment.

And that dear GPs is why we need to test so often. Very sorry if that is slightly financially inconvenient for you.

Canine CGMS - dogs trained to detect hypoglycaemia

No really. I'm not making this up.

I saw fascinating snippet on BBC Breakfast today featuring a mum and her young type 1 daughter. They are one of the first families in the UK to benefit from a specially trained 'assistance dog' which can detect hypo- and hyperglycaemia by changes in the scent of the diabetic.

Yup that's right! Amazingly the dog can sense when the girl's blood glucose levels are either too high or too low and alert her. In one instance at a family disco where the girl had been dancing away with her brother, on returning to the table the dog began licking and nuzzling her before rummaging under the table and fetching her blood glucose meter. Her bg level had dropped to 2.5mmol/l. The dog sleeps in the girl's bedroom and will go to fetch her parents if her blood glucose levels drop too low overnight.

There are currently 10 dogs in the UK, trained by small charity 'Cancer and Bio-detection Dogs'. The dogs have been placed with type 1 diabetics with poor hypo-awareness. The work still seems to be in its early stages, but it is hoped that the trained dogs will be allowed to register with Assistance Dogs UK and granted the same status as guide dogs for the blind.

Dorcasdog - I will be expecting great things from you next time you come to stay...

Dishing Up

I've been trying to concentrate much more on Mike's needs, when it comes to meal times, over the last few months. We are lucky enough as a family, to be able to all sit down together for both breakfast and tea. When the children were younger, sitting together did not mean eating the same food, Mike and I enjoy spicy food, and our kids (like most kids) like to separate out ingredients and have both gone through a variety of picky phases, which drives me mad. Friends round to tea, adds another interesting dimension to what I can or can't present at meal times, forward planning is impossible when you may get a vegetarian home on a spaghetti bolognaise day. Even so, I've always enjoyed cooking for the family because it feels like such a worthwhile thing to do well, much more essential than cleaning (which I only do when we're about to have visitors); and it's a good job I enjoy it because when the kids were small I would end up cooking all afternoon to be able to cater for everyone's needs.

The hardest thing is dividing carbohydrate in a measured way. We all eat a similar quantity of food now, but when the kids ate less, dividing the pasta to ensure that Mike had approximately 60grams of carbs for his meal was tricky. In the baby/toddler phase, I just cooked two completely separate meals, one for us and one for the kids. When they were a little older, I cooked simple food, enough for three portions, and divided one of those portions between the kids, then I'd cook an extra veg dish which I could spice up to make the meal more interesting for me and Mike. The next stage got harder, and the measuring less accurate, and with appetites varying, we would often find ourselves finishing the things off which are hard to resist, (like fish fingers) but it can play havoc with your levels. It is a relief now to know that the kids have good appetites and I can just divide everything equally between the four of us.

It does mean that we all have a calorie controlled diet, as a neccessity. I'm sure the kids aren't really aware of that yet. It can make for a rather odd looking meal. The portion of pasta we allow ourselves looks pitiful, but I add a lot of veg to everything to boost the quantity of stuff on the plate. New potatoes present a whole other problem, delicious though they are, to ensure Mike has enough carbs he has to pretty much fill his plate with them, though Mike will allow for that and use less insulin, he doesn't have to have exactly 60grams of carbohydrate at every meal of course, but it's the way we've always done it and it seems to work. You get used to all the measurements, 3oograms of rice is enough for the four of us, 400grams of pasta etc. it makes life easy. I've managed to get back to buying only wholewheat pasta, and there have been no complaints, and I have gone back to trying to vary the type of carbs much more, which was something I read in a Balance magazine years ago. It makes sense to me, if only because too much of anything can be bad for you.

I am aware that I have spent quite alot of the past thirteen years preparing and cooking food, and that not everyone has the time available to do that, (or would want to). To me it has been a luxury I'm grateful to have been afforded, though it is extremely nice when someone else offers to cook for a change. Maybe one of these days I'll be all cooked out and hopefully I'll be able to hand the baton to someone else and then and only then will I offer to do the washing up.

Jane

Basal driving me bonkers

This is ridiculous.

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

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

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

The technique I've come across goes like this:

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

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

I'll let you know how it goes.

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

Update: Lantus problems and going round in circles

Living on the edge

My control has been, in recent weeks, really pretty good I think. Certainly it feels significantly better than it has been for several years, and it was never really bad even then. A change of insulin, adjustments my approach to my basal (Lantus) delivery and a slightly more focussed attention on carb:insulin ratios are all paying off. All those peaks and troughs are being evened out.

I'd tightened up quite a bit before the switch from NovoRapid to Humalog, but even so I think the change (and the time/date dose memory of the Memoir pen) have been hugely helpful to me. In a quick, thoroughly unscientific compare-and-contrast of a fortnight's figures on each insulin here's what I've found:

I am now having
30% fewer low-level hypos (my warning signs are significantly improved as a result)
28% fewer results outside my target range of 3.9-9.0mmol/l
80% fewer fbg (pre-breakfast) results outside target range

So it feels very much like the effort is paying off, and while I do catch myself smiling an occasional smug smile these days I also recognise that these closer-to-normal figures bring with them their own set of peculiar problems.

If you are happily spiking away into the teens after every meal you have a degree of slack while your insulin chugs away before you might dip into hypoland. With my new tighter range I'm spending far more time at or near 5.5mmol/l - which, while good, is also just on the edge of going hypo. A few weeks ago I'd miscalculated breakfast and was 10.0mmol/l before lunch. Slightly annoyed, I decided not to eat straight away, but to stroll to the supermarket to pick up 4 pints of milk. The walk is level and takes about 6 or 7 minutes each way at a fairly easy pace. When I returned with the milk I tested again to find I was 4.0mmol/l. This was just what I'd hoped for, but at the time I was struck by the size of the drop, over the short space of time, with the very little effort expended. To drop from 5.5mmol/l to 3.5mmol/l is all too easy.

Living life at or around 5.5 basically means, for me, that I need to take a little short-acting carbohydrate whenever I walk anywhere or do anything, in order that I don't dip low. There are some days when you overdo it slightly, which is a bit annoying. And days when you don't allow quite enough - I slightly underdid the compensation yesterday for a late evening walk. Went to bed at 6.2, but fbg was 3.5 this morning so I was obviously trending downwards last night.

Much as I'm still fairly pump-averse it makes me envy pumpers with a CGM (continuous glucose monitor). Now that would be a life changing bit of kit.

There's Mike, and then there's the diabetes.

Blimey, it really is one long maths lesson isn't it!

Since we started this back in February, there have been a lot of changes in the way that Mike manages his diabetes, which you will know all about if you have been following this blog. We always knew there were a lot of variables, we've always known that it is practically impossible to get it right all of the time; but add in changing the way you use your background insulin and you have yourself a mathematical equation capable of turning your brain inside out every morning.

It is a long process, which has already improved our family life, though it is not yet completed. Maybe it never will be, because as soon as you think you've got it right, something happens to make everything change. I think the thing that has made life better, is our attitude towards Mike's diabetes. We acknowledge it and we talk about it and learn about it. We don't ignore it, and assume that's just the way it is and that things could not improve. Mike is more willing to look for help and try new things, and we are all interested in seeing what works and how it works and what we can do to help.

It is a little bit like having a new family member, because without the regular morning hypos which did affect Mike quite badly, we rarely see Mike and the diabetes together, we see Mike, and he looks after the diabetes and tells us all about it and how it's getting on. Like having a friend that can be a bit annoying sometimes.

Jane

Every day ups & downs on Twitter

For those that like the world of tweets and twittering (and who doesn't?) we have set up a twitterfeed of the blog as @everydayupsdwns.

We will also posting any little updates and/or interesting bits of Diabetes-related stuff that we come across online. How could you resist?

You can follow us here: http://twitter.com/everydayupsdwns

And there was evening, and there was morning...

Just a quick update on the ongoing Lantus experiment... If you've popped by before you may have read that I recently changed the timing of my Lantus injection to combat fairly frequent, low-level morning hypos.

After the initial euphoria of my new-found pre-breakfast bg stability had worn off, I began to notice an unfortunate side effect of the new system. True, I was no longer waking up hypo 3 times a week, but I began to find that after breakfast my blood glucose levels would 'spike' - rising steeply and peaking way higher than I'd like.

When I'd suggested shifting my Lantus dose to the mornings to the DSN at the hospital, she had said that in her experience it merely 'moved the problem'. While this wasn't exactly true in my case (as I wasn't having consistent late afternoon hypos) it did appear that I'd simply swapped one problem for another.

My overall control has always been pretty good. A few swings here and there, but on the whole, fairly respectable HbA1c's (the test that reveals how 'normal' your blood glucose levels have been over the previous 12 weeks or so - below 7% is the guideline). One of the things I'm noticing about my renewed focus on tighter control is that you quickly move your own goalposts. I know for sure that one of the ways I've kept my HbA1c's in check is by having rather too many low-level hypos to counteract the high readings over the same period. Good control is not about constantly swinging from high to hypo, but as with all average-based assessments the HbA1c can hide the true picture.

In short, I was not happy to constantly spike after breakfast especially since I was now missing all those pesky morning hypos that would have kept up the illusion of good control in my HbA1c.

So for the last week or so I've been splitting my Lantus dose, half at about 10pm and the rest at around 7am the following morning. My reasoning was this... Lantus takes a good 3-5 hours to get going (this is why it is often recommended that you take the dose last thing at night). It also lasts around 18-26 hours, depending on the person - I think it's around 20-22 hours for me. What I think was happening with my breakfast time dose was that yesterday's had run out, and today's wasn't kicking in until mid-morning at the earliest. This meant that my breakfast bolus was having to cover basal requirements as well as whatever I was eating. By injecting half and half I now have two activity curves running out of phase so that the onset of one is covered by the activity of the other.

I have to confess that the timings of the doses are based more on convenience and the likelihood that I'll remember them than any complicated graph-based calculation of perfect timings, but for the last week or so both fbg (pre-breakfast blood glucose level) and post breakfast readings have been pretty much bang on target.

Well apart from the day I forgot to inject that is... but that's another story.

Update: Basal driving me bonkers

Worrying

Other ways in which diabetes affects our lives: I worry.

I do worry about stuff, all the usual sort of stuff, the kids, money, pet care while we're on holiday etc.; though I don't think I'm an excessive worrier, but I do worry about Mike.

Maybe all wives worry about their husbands, maybe this is totally normal and nothing to do with diabetes, to be honest I have no idea, because this is all I've ever known.

I worry when he goes away without me. I worry when he goes out for an evening with friends. Basically, I worry when I'm not there to look out for him. Don't get me wrong, I know I'm not needed, he can look after himself. That doesn't stop me worrying. I suppose it's because there have been times when he has needed help and I know that not everyone would know how to spot the signs, why they are happening and what to do. Mike is an adult, and I am not his parent, but I think I probably worry in the same way a parent does. I worry that people may think he's drunk when he's actually hypo. I worry if he's away and wakes up low, that people will just think he's overslept. If he starts talking nonsense, will people realise something is wrong, or just change the subject out of embarrassment? Who will be there to spot it and help him?

My worries are, so far, unfounded. If I could stop worrying I would. I try not to show it, I don't really feel that I have the right to worry in the way a parent does, I have to respect Mike's right to independence, he is my equal.

But I do worry, because I love him.

Jane

Where's your pencil case?

Apart from the odd hypo, and a fairly considered diet, there are a couple of other ways in which diabetes affects our day to day lives as a family. The main one of course, is having to know in advance whether there is food provided at a party, or we are likely to be out long enough to need to remind Mike to take his insulin with him. Mike keeps all his stuff in a pencil case, so "Where's your pencil case?" is the question we ask to ascertain whether or not we will be able to eat while we are out.

These days he's pretty good at remembering, the pencil case is kept in a good place to make it a visual reminder, but there have been plenty of occasions in the past when we have had to turn the car round and come back to collect it, and once or twice Mike has had to manage without by either being very restrained and not eating, or choosing carefully. It does affect us all, not only when we have to wait until we get home, but also if we don't. There is nothing joyful about eating party food in front of someone who can't join in.

It's all about being prepared really, and part of that preparation is communication. It isn't the easiest thing in the world to ask the kind person who has offered the party invitation as to whether or not they will be feeding us, it feels a little cheeky. Mike does not like to be so bold. I find it easier, though maybe that's because I'm finding out on someone else's behalf, it's not really me that's 'making all the fuss', not that it is a fuss, but I think that is how Mike sometimes feels. He's not one to draw attention to himself.

It's easier now the girls are older, they are more able to wait, even if they are hungry. I never went anywhere without snacks to keep them going when they were little, again, all about the preparation. Hungry children don't make life worth living, and I'm just as bad. Mike doesn't tend to get hungry, unless he's hypo, it's a useful signal. But it also means that being out with three hungry women, who can't have lunch until we get home because he hasn't brought his kit, does put him in a quite dangerous position which he doesn't necessarily recognise or understand.

On the whole, it's a good idea to keep asking the question: "Where's your pencil case?"

Jane

Timing is everything

Injecting Lantus first thing in the morning... Just a quick follow up to my recent post about switching my Lantus dose to first thing in the morning. It works!

I've just looked back over some old bg readings for the last few years and they suggest I've been waking up to a low level hypo perhaps 2 or 3 times a week. Since switching the timing of the dose 10 days ago my levels have pretty much all been in the 3.9 - 7.5 mmol/l range with the majority between 4.4 and 6.7 mmol/l.

I got into an email conversation with Matt Jones who said he used to have a similar experience and had pretty much solved it overnight by injecting Lantus in the morning. I'd tried slightly altered doses (having got hold of a 1-unit Autopen) and having a small amount of slow-release carbs last thing at night to beat the morning lows but neither had been particularly effective.

I seems it wouldn't work for everyone - I mentioned switching the dose timing when speaking to my DSN and she had said that in her experience it just 'moved the problem', but for me the difference has been amazing.

Thanks Matt. I owe you one :)

Update: Morning and Evening

Diabetes Blog Week (Day 4) : To carb or not to carb

I came across the Bitter-Sweet Diabetes Blog the other day, written by Karen in Conneticut, US. When we began writing this family blog of living with diabetes we did a bit of looking around and while there were a bunch of active bloggers in the states, and some in Europe, those in the UK were a little harder to find. It would seem that Karen is part of a fairly wide-reaching network of diabetic bloggers both in the US and further afield (the Diabetic Online Community or DOC). Last week, Karen had a moment of inspiration and decided to set up Diabetes Blog Week (May 10-16) to inspire anyone writing about their experience of diabetes with a week's worth of topics. Today is Day 4, and the topic is 'To Carb or Not to Carb'.

Sometimes you look back on your life and think, well that was lucky. And that's just how I feel about my diagnosis. I know that's a slightly odd thing to say, but of all the long-term conditions one could get I think diabetes is a pretty good option. Yes you have to change aspects of your life. Yes sometimes it's incredibly frustrating and gets in the way. Occasionally it's quite scary both for you and those around you. On the whole though it is fairly easy to get along with (or even pretty much ignore for very short periods).

Another reason why I feel lucky is that when I was diagnosed I was introduced to the concept of 'exchanges' so I've been estimating carbs and adjusting doses almost from the beginning. The idea that people have been advised by medical professionals to eat great platefuls of carbs without any measurement of the load and just bung in a standard dose is quite frightening. I can't imagine what my control would have been like if I'd been given that as an approach. The first DSN I saw, way back in 1991, asked me about my general diet and from our conversation suggested a base level of carbohydrate to aim for which would make the whole dose thing easier to begin with. When introduced to basal-bolus, one of the main benefits, it seemed to me, was the ability to change the dose to match your meal. There was no longer any reason to stick to x grams of carbohydrate. My fortuitous timing then gave me this outlook:

• Eat normally
• Eat healthily
• Wholefoods will be easier on the bg
• Watch the fat intake but let's not be silly about it (I'm lucky never to have had a problem with my weight)
• Drink in moderation (and be very careful when you don't)
• Have an occasional treat/pudding/blowout - you're not a monk

Only quite recently I have come into contact with several people (both T1s and T2s) who manage their diabetes with a very low carb diet, some with spectacularly good effects. I don't go very low carb myself, tending towards 150g/day, sometimes much higher. In fact the more I read of the experiences of T2s the luckier I feel with T1. At least if I've got a big celebration blowout I can split a whopping insulin dose into several phased deliveries so that it gets gradually absorbed as my digestive system chugs through it all.

The secret to a happy, healthy diabetic diet I think is best summed up by this: Eat to your meter. Testing just before meals is not enough for me. I also need to check what happens in the hours afterwards. That way I can identify which foods cause spikes (or crashes) in my blood sugars, and then I can either avoid that food, or work around the problem with altered doses, splits and timings. Once the patterns have been spotted I've more chance of knowing what to do. Everyone is different. What works for me may not work for you. If you eat low carb and it works, brilliant. If you eat carbs and you can manage it, great!

The bottom line is keeping your control tight. That way we'll all keep well.