Diabetes, emotions, resilience and mental health - DBlog Week Day 4

Today's Diabetes Blog Week topic recognises that living with type 1 diabetes is not just about looking after our physical health,  "What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?". Read how others have responded to this topic by visiting the Day 4 link list.

Today is also described as 'Throwback Thursday' in that this topic was also covered a few years ago, in 2014, which coincidentally, was the last time I took part in DBlog Week. You can read my previous post here, and to be honest I think I feel pretty much the same today.

It's important for us to recognise that living with a long term condition, particularly one as fickle, irritating and contrary as Type 1 Diabetes makes each of us more vulnerable to depression.

It is OK not to be OK. And it is very much OK to talk to your clinic, Doctor or care team about it. You need to do that. It won't be easy. It will take courage, but if you are struggling emotionally you deserve to be supported and to receive the help you need.

Many of us are familiar with the ebb and flow of emotions from gently pottering along with diabetes just being part of the background noise of our lives and with a general sense of well-being set against feelings of despair, hopelessness and that diabetes is a weight that simply cannot be carried. Many of us too, will know that the dividing line between those two states is sometimes precariously fragile. Your mental health is just that, health. We need to look after ourselves as whole people, and that means looking after our minds, and paying attention to them, just as much as we put effort in to blood glucose management, eating well and exercising.

I think part of the challenge for healthcare professionals is that it is much easier for them to focus on the numbers. The hard facts that can suggest how 'well' a person with diabetes is managing their condition. From the outset we begin to be surrounded by a cloud of numbers, targets and measurements. Each supposedly able to predict our long-term future health. And it is almost impossible in that context not to see those checks and data as some sort of reflection on whether you are 'succeeding' or 'failing' as a person. Whether you are 'trying hard enough', 'doing well enough'.

It's a toxic environment.

And much has been written about the language we use in relation to these pieces of information. Test. Target. Control. Compliance. Adherence. So many opportunities for self-judgement.

And it's important to remember that fluctuating glucose levels have a profound effect on the brain and on the emotions. So at the very point we see those frustrating numbers, where we know we did everything we knew to try to avoid them, our minds are less able to cope with the situation.

If we are not careful we put ourselves in an impossible position where every day is filled with opportunities for perceived 'failure'. Where we see our best efforts as never 'enough'. Where we feel that we are failing before we begin.

But this is absolutely not the case.

You need to recognise how well you are doing. How resilient you are. How you are able to live your life and simultaneously perform the function of a major bodily organ every single day.

Some times it works well and you are happy with how your BG behaved, other days... not so much. But you battle on, you brilliant, tenacious, feisty, beautiful piece of humanity. And tomorrow you will do it all again.

And make no mistake, the juggling of all those complicated factors that go into every single one of your self-management decisions would fry the most genius of minds. And the out of range results you see are so often not even down to you at all. Well, OK, that one was. But hey, we knew that before we did it eh? And life is for living, right? But for the most part, if managing type 1 was simply a matter of eating the right foods and taking the right doses and everything always worked out all the time and never changed we would have had this licked a long, long time ago.

The variables in your life will overlap and interact. Some cancelling each other out, others magnifying. And your diabetes itself will not have the good grace to sit still and behave predictably.

Perfection really is not possible. You are doing your best - even on the days when you can barely manage to do anything. You can do that. You can keep yourself going. And tomorrow you can go again.

Never neglect your state of mind. Get the right professional support if you need it, and reach out to people in the #doc to share the burden. Commit to being careful with your own inner voice and taking time to affirm yourself and acknowledge that despite the difficulties type 1 diabetes brings, you are winning small victories every day. You are able to achieve more than you can imagine.

“To achieve greatness, start where you are, use what you have, do what you can.”
Arthur Ashe

Normal service will be resumed as soon as possible

Apologies for the interruption - the fluffy four-footed addition to our household has made finding time for blogging very difficult in recent months. Which is unfortunate really, because I have at least three or four posts waiting in the wings that I would really like to put together!

We picked up our young Clumberdoodle pup at the beginning of April and time has absolutely flown by since. For a couple of months before Marvin's arrival we were busily DIYing and generally attempting to puppy-proof (ha!) the house and garden a little. It's all been a bit of a blur to be honest and reminded Jane and I of a heady combination of those weeks with a newborn babe, mixed in with a good dollop of toddler mischief and a hint of teenage experimentation and boundary-pushing. Fortunately Marvin is a dog who likes a nap, and can be persuaded to do pretty much anything for the promise of a bit of chicken or nibble of Schmacko.

Around the middle of March I was chuffed to be invited by the wonderful Dr May Ng to speak at the North West Children and Young People's Network Education Day - if you'd like to get a glimpse of what went on I put together a Storify of the tweets. Alternatively, everyone's favourite Diabetes Dad, Kev Winchcombe wrote a great, but altogether far too modest blog post about the day. His talk was far more packed with laughs and interesting detail about diagnosis, transition, DIY APS and Nightscout than my blathering about spurious similarities between daily management of type 1 diabetes and Scalextric!

In the coming months I am really hoping to post a follow up to my reflections on DPC2016 detailing what I picked up from Iain Cranston's fantastic presentation on interpreting CGM data and Ambulatory Glucose Profile reports.

Additionally I have seen a number of conflicting reports/research about cholesterol and Statins in recent weeks and I'd really like to post something about that - if only to be able to process it a little myself.

Thirdly, I am honoured to have been invited by Abbott to attend an event in Stockholm in June called 'Dx' which looks to be really very interesting indeed.

Lastly I have been quietly working with a few other DOC legends (quite how I managed to scrape into their hallowed company is beyond me) on something I am only half-jokingly calling "Project Enormous". We hope that soon - perhaps in the next month or two - it will reach the point where we can release it into the wild and see if it has any 'legs', and lives up to the promise of the idea.

Exciting times.

Hope your BGs play fair in the meantime and thanks, as ever, for reading.

Disclaimer. For my attendance at the North West Diabetes Network Education Day my travel and accommodation expenses were generously paid, but no speaker's fees were offered or received.

The "I can..." of insulin pumps - Diabetes Week 2014

The theme of this year's Diabetes Week is 'I can...'. Here's a guest post I was invited to write for the Diabetes UK blog.

When I was thinking about this year's theme of 'I can' I was reminded of a conversation I had with someone last week about insulin pumps. It was something that they were being encouraged to consider, but like pretty much everyone else (myself included) their initial reaction was uncertainty. Uncertainty over being connected to something 24 hours a day. Uncertainty about relying on a fragile piece of technology to keep them alive. Uncertainty about how it would make them feel and how others might view them. Uncertainty over whether it would actually improve anything at all. In short, they didn't really think it was for them.

I know those feelings well. I had them all, and many more besides. I was 'pump averse' for many years. My clinic suggested that it might help with my recurrent hypoglycaemia, but could never really articulate how that might happen. All I could see was a big bunch of (what I thought were) downsides.

In the end, for me, it was reading the experiences of pump users online that convinced me to give it a go. The day to day nitty gritty of how it helped them. Now I'm not saying that insulin pumps are for everyone. Some people wouldn't want to touch one with a barge pole, others do just fine on Multiple Daily Injections and are completely happy as they are. But if it is something you are considering, here are a few 'I can's that an insulin pump has given me to add to your thinking:

If I want to go to bed at 5.0mmol/L, I can.
Ahhhhh basal! I have been through quite a few basal insulins in my 25 years of pancreas-impersonation. In the old days we were always advised to have a snack before bed. Why? Well because in all likelihood your basal-du-jour was going to be a bit over-enthusiastic in the early hours and could well plunge you into an overnight hypo. It was many years before I discovered 'basal testing' (systematically adjusting your basal insulin by fasting tests so that it just holds you steady) but try as I might, even with fancy schmancy analogues I could only ever get my basal 'near enough' on MDI. A bit too much here, not quite enough there... make up the differences with meal doses and guesswork. With a pump, the flexibility of multiple basal patterns which can be tweaked and changed with almost infinite precision mean that I can adjust things so that I am actually starting from a level playing field. To my mind, basal is the bedrock of my BG levels. If my basal is out, even by just a little bit, my meal doses and corrections just do not play fair. So I no longer have to worry about stocking up on carbs before bed, because my basal insulin should hold me level and when I need less insulin overnight I get less. Where I need more just before breakfast, I get more.

If I want to give a really accurate dose, I can.
My doses on MDI were often a bit 'ballpark' to be honest. I have always counted carbs and altered my doses based on what I am eating, but I usually rounded up or rounded down to make things easy. Plus I would use insulin:carbohydrate ratios that meant I didn't have to get a calculator out all the time. The Accu-chek Expert was a great tool on MDI for tweaking doses, but I was still using a 'whole unit' pen so there was a degree of rounding even then. Now I can bolus in decimal places. And those tiny tweaks of insulin here or there do seem to make a difference. True enough my carb estimates are still often done by eye, but at least one part of the puzzle is now being calculated and delivered precisely.

If I want to stop here for lunch, I can.
This was the biggest surprise for me. Rediscovering spontaneity. I began pumping with an fairly entrenched anxiety about being hooked up to something 24/7. I know almost no one who has not had that when considering an insulin pump. Many people say that within a few weeks (days for some people) they become completely at one with their new robot pancreas and never give it a second thought. I can't say that it was quite so quick for me, but certainly in less than six months I had stopped noticing being attached at all and my emerging 'unthought' behaviours (like automatically hooking it to a t-shirt when getting changed) meant I never really gave Artoo another thought. If you are newly on an insulin pump and it still feels a bit of a nuisance or 'in the way' hang in there. Where was I? Oh yes... Spontaneity. So I was well prepared to dislike being attached, but I really hadn't expected that attachment would turn out to be such a bonus. Out on a wander on holiday... get a bit distracted and it takes rather longer than anticipated... Oh this pub looks nice, shall we stop for lunch? What would have always previously been "No we can't, I didn't bring my pens with me" has simply become "Yes!". Wherever we are now I always have my 'kit' with me, and while I used to like the idea of being able to leave all this stuff on a table and just walk around 'like a normal person', personally I have come to realise that I feel much more 'normal' if I can eat whatever I fancy whenever I want to, without having to remember to bring a case full of gubbins with me everywhere.

If I want to have 20 boluses/corrections/snacks in a day, I can.
Well strictly speaking I always could have, of course. But in reality I never did. There is something so easy and effortless about push-button dosing that I am far more likely to add in a fraction of a unit here or there during a day when I recognise that I probably wouldn't have bothered to get a pen out, airshot, dial up and inject. This has increased freedom around snacks too. Where I previously found them just to be too much of a hassle on MDI, almost always resulting is a BG wobble in one direction or other (depending on whether I had bothered to bolus or not) I've had much more success with the effortless mini-doses a pump offers. It's easier, so I bother to do it.

If I want to run a marathon (or just vacuum the stairs), I can.
Again, this was something I more or less tamed with MDI, but the additional options available on a pump, like the ability to set a 'temporary basal rate' for several hours, have added considerable 'polish' to many of those day-to-day conundrums of physical activity. I am far less likely to see my BG levels dip below my target range when exercising these days and I'm buying far less Lucozade!


Just a few things of the top of my head. I'm sure most people on pumps could write their own list. Of course diabetes is still annoying and frustrating quite a lot of the time. A pump is not a magic bullet and it still involves a fair bit of faffing about. But for me having a pump has made a tighter set of BG levels more possible, with less effort and far, far fewer nasty lows.

If you are struggling with wrestling your diabetes into some sort of submission and have been offered a pump as a possible way forward I'd suggest giving it a go.

If I can do it... You can.

Why I decided to stop being ‘a diabetic’ - Guest post for DiabetesUK

Words are powerful things.

I had a very interesting conversation with the very lovely Lesley Jordan of INPUT in October last year which made me focus on something I had been mulling over for some time.

It’s odd, because I’ve seen it discussed online and in social media before, often with a level of passion and sometimes outrage that has made me think, ‘Why are you letting yourself get so wound up about that?’

I think it began to make more sense to me when I considered the subject in the light of the way I think about my own diabetes, rather than the words or terms other people might use in conversation or in the media. I think to get too stressed or riled up about what other people say is counterproductive, but I have come to see that it is very important for me to choose my words carefully for the little voice in my head.

I know, I know. Many of you are rolling your eyes, and someone almost certainly just said ‘Oh good GRIEF!’. But bear with me here...

Living with a long term condition like diabetes is hard work. There will be days when you might just breeze along quite happily, barely giving it a second thought, but there will almost certainly be other times when it is a lonely, grim and gruelling marathon – and everything is up hill. It is well established that diabetes and depression often go hand in hand and it is important that we protect ourselves and our sometimes fragile senses of self-esteem. One of the most successful ways of doing this seems to be ‘cognitive behaviour therapy’ (CBT) and an important CBT technique is to adjust your inner voice to help you see situations more clearly and more positively.

I think in words. Conversations with myself. In all the countless interactions I have every day with my diabetes I hear my inner voice commenting on what I am doing. If I am not careful, the background to my every day can become a relentless tide of negativity and judgement.

“I have to test my blood...”
“My control is *terrible* at the moment, my BGs have been really bad...”
“Well I really messed up that carb count there. I should have weighed it, I bet I go hypo later...”

And all of this spills over into any conversations I have with other people too.

So I have been trying to make tiny changes to the language I use with myself and with others when I talk about my diabetes. These seem so tiny and insignificant that it is hard to believe that they could matter at all, but we have a rich and subtle language and every word we choose conveys complex messages to those around us and to our own subconscious.

So now I am no longer saying I am ‘a diabetic’ – a label which defines me, instead I am a ‘person with diabetes’ – person first, diabetes second.

I am trying not to think about ‘good’ or ‘bad’ blood glucose or HbA1c results. Instead I think of them as being ‘in range’ or a ‘work in progress’.

If you ‘test’ your blood glucose then you can pass or fail that test, so it is better to ‘check’ or ‘measure’ your blood glucose. Check your blood glucose level to give you information about what to do next. Check, respond, move on.

Don’t try to ‘control’ your diabetes, ‘manage’ it instead – there are often factors that affect your blood glucose levels that are outside of your direct control (an unexpected liver dump or some other diabetes randomness), but you can use your skills and knowledge to manage those changing circumstances as best you can.

Even terms like ‘should do’ or ‘should have’ can imply some sort of personal failure if something doesn’t quite go to plan. ‘Can do’ and ‘will do’ are more positive alternatives.

There are also changes you can make in the way you think about food, and talk about it with other people. ‘I can’t eat that’ implies that I am being prevented from doing something and that I’m not in control of the decision. ‘I am not going to eat that, because reducing my carb intake makes my diabetes easier to manage’ or even simply ‘I don’t eat that’ puts me back in control – I am making a choice at that moment and I know why I am making it. Next time I can choose again, perhaps differently, but it is always my choice.

As I say, these changes are tiny. It is hard to believe that they would have any effect at all, but little by little they are helping me engage with my diabetes in a more positive way.

What helps you stay positive?

Cook & Count Carbs - App Review

I was really happy to be asked to take a look at a new app for iPhone (an Android version is coming soon) which immediately sounded like a Very Good Idea.

More and more these days we are reminded that heavily processed foods, while convenient, are generally poor food choices. Even without the revelations regarding the 'so hungry I could eat a horse' frozen-microwaveable-lasagne-for-one fiasco, most of us realise that food genuinely tastes better and is much better for us when it isn't jam-packed full of chemicals from the darkest corners of the periodic table in order to give it a half-life on the shelves, or permit a 'low fat' (don't get me started) label on the front.

Real food, made from real ingredients. Lovely.

For those of us juggling busy lives and diabetes though there is the added complication that those nasty chemical-laden packaged foods tend to come with a very handy grid of information providing the all important carb count. Cooking from scratch is great, but trying to get an even vaguely accurate carb-count for what ends up on the plate can be a bit of a bind. Well not any more!

Cook & Count Carbs focusses on doing one thing well. It doesn't fuss about with calories or offer nutritional info about fats, proteins or other micronutrients*, but allows you to very quickly look up individual ingredients or build complete recipes and then work out carbs-per-portion for however many people you are dividing it between. (*Update: The app has since been upgraded/updated to allow you to track calories/fats/proteins/fibre and other details if you would like to, or just stick to carbs-only)

I have fallen foul of the promise of carb-lookup functionality a few times before. Some apps use lists which are based largely on foods and brands only available in the US, others require an active network-connection to access the data. My favourite waste of time so far was an app that allowed you look up a huge range of ingredients but only allowed you to indicate quantity by 'serving'. So you could choose one, two or nine 'servings' of wholemeal pasta and get a carb count, but absolutely nowhere did it specify how much pasta one should cook for an individual 'serving'. Utterly useless.

Thankfully C&CC is a lot better thought-through than that. There is a pretty comprehensive list of ready-made choices for both raw and cooked foods, all available by weight (grams or ounces depending on user preference). Brilliantly the app also allows you to define your own 'custom' ingredients from the food-labels on the stuff that you actually buy if that turns out to be missing, or significantly different from the predefined list. And you can use it anywhere... fully networked city centre apartment or a farmhouse in the back of beyond.

You carry on adding as many ingredients as you want to and then flick to the 'total' screen which allows you to divide the whole recipe into as many servings as you are expecting. This number isn't fixed, so if you decide to divide into more or fewer portions later on, or the next time you prepare the meal, you can easily get an updated count.

You then have the option of saving your recipe to refer back to in your 'My recipes' section. You can add a photo of what it should look like and even add detailed notes on how to prepare the recipe if you wish. One slight quirk is that you can only edit a recipe you have previously saved if you have added at least one 'Method' entry. Once you have done that (even if it only says 'Method' ) an edit icon appears below the recipe and you are able to amend and update any quantities, add or remove ingredients and then save a new version if desired. For keen social media types there is also the option of sharing via Twitter.

Also inbuilt into the app are a collection of existing recipes from starters, mains and puds to low carb & gluten free, as well as an 'info' page with articles, tips and additional information.

The interface is quick and intuitive and I have found it equally handy for a quick 'ready-reckoner' look-up of an individual ingredients as well as calculating more complex and complete meals. It is hard to imagine how the app could be improved - and that is a very rare thing for me to say. At the current price of £3.99 it is not the cheapest, but if you like the idea of cooking from scratch without the mathematical acrobatics it is well worth considering for the price of a couple of coffees.

Final score: 5/5

Disclosure: Deborah Wilder and Health Apps Ltd very kindly offered me a free copy of the app for review, which I was allowed to keep. I was not asked or paid to write this post, and only did so because I thought the app was bloomin' marvellous!

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.

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!

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.

No D Day : True colours

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

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

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

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

Face-off: MDI vs Pump

If you've not seen this film before, you should! Face/Off [DVD] [1997]

A couple of people who are considering going on an insulin pump were asking how I was getting on, how I was finding it and whether I thought it had made any difference.

An interesting question a little over 6 months into the experience.

Pump win(?): Fear of attachment
The first thing to say is that the nagging worries I still had about attachment when I wrote a few weeks after starting on a pump have long gone. I know some people feel at one with their robot pancreas almost immediately, but it took me a good few months before I reached the stage where I rarely thought about being hooked up to Artoo, and even when I did, it didn't worry me. Things like getting changed, where the sense of inconvenience lingered, no longer strike me as irritating. If you have just started on a pump, and the attachment still frustrates you, hang in there. Not everyone gets used to it in a few days. Allow yourself time to adapt to the new 'normal'. Wearing and using Artoo is now second nature. No problem with sleeping either.

Hugely unexpected pump win: Attachment
I think this bears repeating from my '2 month' post, partly because it was something I really didn't see coming. There have been many times since starting on a pump that being attached to Artoo 24/7 has given me back a feeling of spontaneity. Do you remember spontaneity? I'd pretty much forgotten about it myself too. That ability to just stop and have lunch there because you fancy it, rather than having to go back home because you weren't expecting to be out that long and didn't bring your kit. There have also been *no* times since November when we've had to stop the car at the end of the street, and run back to fetch my pencil case.

Pump win: Basal patterns
A properly flexible basal pattern was one of my main motivations to switch to a pump. Looking back, while on MDI my early morning 'fasting' reading of the day was more erratic than I realised at the time. Sometimes too high, sometimes too low. Only in a decent range say, between 3.9mmol/L (70mg/dl) and 7.5 (135), less than half the time (45% to be exact). Truth be known it's still wobblier than I'd like, but these days I get a decent first reading on two out of three days. That's a much cheerier start to the day for everyone at the breakfast table.

Pump win: Delivery options
I was invited to an evening arranged by Medtronic in March where pumps and pump therapy were discussed. It surprised me how many people had been on a pump for years but had never tried out different bolus patterns or temporary basal rates. If you are new to a pump I'd encourage you to get stuck in straight away. TBRs, dual and square wave boluses have more than lived up to my expectations. Many situations, like gardening and vacuuming which refused to play nicely for me on MDI have been more or less tamed by Artoo. I don't get it right all the time, but have a little 'cheat sheet' of notes for what seemed to work before to use as a basis for whatever I'm doing and I have avoided many many spikes and/or hypos since November.

MDI win: Infusion site failures
On the plus side set changes have become much easier and more automatic. They are a little more time consuming than a simple injection, but you do know roughly when they are due and can bring that forward/push that back slightly if it would come at an inconvenient time. The whole push-button dosing thing is so much quicker and easier than faffing about with a pen that my feeling is that I have a net gain of time spent/inconvenience endured dealing with diabetic rigmarole.

But. (and it's a biggie)...

I have had sites go wrong already. I still watch every set change carefully to make sure they have 'taken' properly. I had almost stopped being so paranoid, but two or three failures in quick succession have put me on my guard again. At least two cannulas have kinked on or after insertion so that insulin wasn't being infused properly. Not serious enough to get a 'low delivery' warning, but enough to cause a rise in BG levels. I had another site seemed to 'go off' at about 1.5 days. It had been fine, but suddenly stopped working as expected. I am putting these down to site issues because corrections did not behave properly, but as soon as the site was changed I was back on an even keel. I've also caught a big fat bubble in the tubing on at least two occasions when I've put Artoo back on after a shower/gym session - which makes me wonder if some odd but short lived rises in BG might be down to Artoo delivering 'bubble' rather than basal for an hour or two on other days. I check carefully every time I fill a reservoir and flick and fiddle until I am as sure as I can be that I have got all the bubbles out, but nevertheless I can still sometimes see a bubble in the reservoir at the next set change. These are not problems that you ever have with MDI. Even if you hit a dodgy site that is only going to be one out of the day's several injections. With Artoo all my eggs are in one basket. And sometimes the handle falls off the basket. I have had one-off levels on a pump higher than I've had for years on MDI, perhaps the highest since I was first diagnosed. And I've also tested positive for ketones since November - again not something I am used to. In all I've probably had to swap out maybe six sites since November. As a percentage of the total number of insertions it's not disastrous. but it's not ideal either.

MDI win: Injection site availability
Another part of this is the available site locations. I was never very adventurous on MDI, but I had far more area to play with in terms of a quick injection than is suitable to have something fixed to it for several days. I'm currently using sides and back for sites to give my abdomen a rest but have to be careful to find a spot with enough 'flesh' and some places end up being slightly uncomfortable when you lean on them/sit on them/risk getting them knocked out by waistband. In theory I could use my thighs, but there's not a lot of 'spare covering' there and most of the usable area seems to be right underneath my jeans pockets which I'm forever fishing stuff out of. I worry I'd just pull the site out when trying to get hold of my my keys.

But what of the results so far?
It's never very easy for me to spot how things are going from day to day. A couple of good (or bad) days on the trot and it can feel like I'm some sort of perpetual Diabetes Superhero/Catastrophe. Sometimes it feels like I've been having a problem for months, but looking back just a week or two and it becomes clear that it has only been a matter of days.

So I dug back through my records and picked some results to compare from three periods. Some old paper records from around the time we started writing this blog, some records towards the end of my time with the Accu-Chek Expert and some more recent ones with Artoo. I pulled 60 days of results to try to reduce the impact of a dodgy few weeks. I avoided holidays/Christmas or other challenging times of year and tried to pick a couple of 'normal' months for each. I knew things have been getting better for me in recent years, but I've not really compared and contrasted in this way before.

Testing frequency was roughly even in each case (between 7 and 8 times a day) and are made up of a mixture of waking, pre meal, post meal and bedtime tests.

The first thing that surprised me was how much improvement I had been able to make on my own with MDI, even before the help of the Expert. Due to an, ahem, administrative/back-up error I don't have a full 60 days immediately pre-Expert to compare, but even so, before Artoo the number of highs and lows were substantially improved.

Hypos - below 3.9 (70)
Old MDI was the worst with 20% of readings, the Expert reduced this to 10% of readings and Artoo has made a small improvement taking this down to 8.7% - clearly Artoo and I still have work to do here.

Hypos - below 3 (54)
The old MDI records really don't do well here, with almost half of all hypos coming in below the 3 (54) mark. Compared to what I'm used to in recent years it made uncomfortable viewing. Both the Expert and Artoo fare much better with 2.4% and 2% of all readings coming in at that level. Both with the Expert and with Artoo, none of these hypos have been 'nasties'. I can't remember the last time I had a really bad one it was so many years ago. I've been functioning, spotted them and able to treat them all myself. That may not have been the case with the old MDI records.

Highs - above 10 (180)
The same pattern of worse, slightly better, better again repeats here. Old MDI shows 19% of readings over 10, with the Expert that falls to 16% and reduces to 13% with Artoos assistance.

Highs - above 13 (234)
This is where Artoo really shines at the moment. Despite having subjected me to an occasional stratospheric BG with a dodgy set, in the 60 days of data Artoo only allowed 0.04% of readings to stray over 13. The Expert does surprisingly badly here with 6% while even old chaotic-style MDI scrapes in with 5%.

Averages and SD
While averages can hide a multitude of unpleasant detail, I think that here they do seem to suggest positive progression. The old MDI average was 6.8 (122) with an SD of 3.3 (59), the Expert improves this with a slightly higher average 7.2 (130) but reduced SD of 3.0 (54). Artoo though trumps them all with the joint lowest average 6.8 (122) and a significantly lower SD of 2.4 (43).

So is it worth it?
YES! Absolutely. The ways in which Artoo has made my diabetic life easier to control, more spontaneous and simpler to get along with far outweigh the remaining niggles I have about infusion sites. Is it like being non-diabetic? No of course not. Actually I have to watch myself not to feel downhearted if I don't have perfect levels all the time because some mad part of my brain thinks that in theory this ought to be possible now. Well unfortunately Diabetes is still incredibly annoying and has lost none of its ability to throw out the rulebook and move the goalposts for weeks at a time. I don't suppose it ever will.

I have an HbA1c coming up in the next few months. It will be interesting to see if there is an improvement - my first post-pump A1c showed an 0.5% increase and I'm hoping I might be able to match my previous MDI result but with fewer highs and lows into the bargain.

We shall see.

UPDATE: Regarding set failures - I wrote this some months later. Set changes

The diabetic half hour

Just having to rattle this one down. I've got several other 'proper' posts jostling in my head, but this one has just emerged and rudely pushed its way to the front...

Is it just me or do many other diabetics seem to spend an interminable amout of time just waiting around? I'm not talking those charming hours spent in the cosy nooks of a doctor's surgery or the peace and tranquility of a clinic waiting room - I just mean the day to day business of pretending to be a pancreas. The waits I am talking about always seem to last about 'another half an hour'.

Wake up, test BG, bolus, pour coffee. Look at watch and think, "Better wait about half an hour for that insulin to realise it's meant to be doing something useful before I take the rash action of eating something."

Lunchtime, test BG, bolus, see above...

48 minutes after lunch. Hmmmm I wonder if I guessed that dollop of whatever right. Bit early yet, better wait about half an hour before testing to allow for the dose/food to get going.

Oops, got that wrong. 9.something... If I walk to the shops that'll sort that out. Back from the shops. Wonder if that worked. Better leave it about half an hour for that sort of low-level exercise to have any effect I suppose.

Evening meal (inexplicably spared the need for a pre-meal half hour wait). Look at watch, 56 minutes since finishing. Bit early yet. Better leave it about half an hour before seeing how things are going.

Bedtime. Dual wave finished some time ago but there are still a fair few units (and some takeaway) doing their thing. Better leave it a while before turning in. There... was that long enough? Ah no... that was only 27 minutes, better leave it about another half an hour.

I'm sure if I had all those back and added them together I'd have about twice as many hours in the day! And half an hour is not quite enough time to do any one thing, but slightly too long to do nothing. It's a time period where it's easy to get distracted and forget what you were supposed to be doing (waiting to eat after bolusing is a nightmare for this).

And a lot can happen in half an hour, diabetically speaking. You can be waiting to give it long enough to check and all the while your BGs can be rocketing skyward. 30 minutes of rapid climb meaning it'll take even longer to resolve.

Case in point yesterday: I had tested to find a couple of low level dips in the morning where I'd underestimated the level of activity and not sufficiently reduced basal. In the afternoon I feared the same was happening again, but rather than testing I just topped up here and there with a sip of Lucozade or a fruit pastille. Before evening meal I was an entirely self-inflicted 12.2 (220). Not ideal. In an attempt to speed the return to better levels I left Jane washing up (sorry about that) and went for a brisk 40 minute walk. Once back I waited for things to settle (about half an hour, of course) but then found that rather than improving things I was up to a wince-inducing 24.8 (446). Frustratingly I rarely feel any symptoms with quick rises into kidney-frying territory so I had waited none-the-wiser while my liver had decided that my BG was far too high to be walking about and what I really needed was an additional surge of glucose. Great. Thanks for that.

On the other hand I had changed set just before evening meal so maybe it was nothing to do with the walk and it was just a set failure?

A full 5 unit correction administered there was nothing to do but wait and see if thigs got better or worse. Ready yet? Nope, not long enough. Another half hour should do it... (I always seem at least twice as eager for a correction to start working as it is able to start reducing BGs).

Thankfully I did come down overnight, and very smoothly too. Artoo earning back my trust with a 6.5 (117) at 2am, followed by another 6.5 (117) on waking this morning.

Yet another day when I would *love* the immediacy of feedback that a Continuous Glucose Monitor offers. Ah well, without a lottery-win (unlikely as we don't do it) that isn't going to happen with the current pricing structure.

Playing golf on a blustery day

I was reminded this morning of something which struck me during a conversation with my parents last year. Some time ago they took up golf, and as with many sporting endeavours they have embarked on before they plunged into it headlong, devoting a huge amount of time and effort into improving their game. Taking lessons, trying new kit and clubs in the hope of finding some new 'magic ingredient'. And they got better. Much, much better - but never seem quite satisfied with how things are. Always want to improve a little more.

In this respect it resembles diabetes almost exactly.

Now I don't play golf, but from what I can see it appears to have been deliberately designed to be almost unimaginably frustrating on almost every level. For starters the equipment involved and physical practicalities of hitting a tiny ball long distances by whacking it with an unevenly-shaped weight on the end of a long stick almost guarantee that no two attempted shots are likely to yield the same results.

In this respect it resembles diabetes almost exactly.

And even if you could somehow miraculously steel your sinews to perform each swing with robot-like precision it would still not be enough. The nature of the playing field itself, with gusty inconsistencies of wind and constantly variable grassiness/sogginess/bounciness/sandiness of the ground (apologies for the use of highly technical golfer's terms there) could still turn yesterday's perfect delivery into today's disappearance into the lake.

In this respect it resembles diabetes almost exactly.

And then of course, there are those brave souls who venture far afield. Just sticking to the same course day-in, day-out is OK for a while, but soon there is a temptation to reach for a little variety. So rather than restricting themselves to a familiar course where their previous experience might at least count for something, they voluntarily put themselves in unfamiliar surroundings. Each shot becomes a wild stab in the dark based on little more than gut instinct and a laughable attempt calculate (hah!) the interaction of a myriad of contradictory variables.

In this respect it resembles diabetes almost exactly.

On Friday I woke to a BG of 7.3 (131). I ate two slices of toast and because I was going to the gym I reduced my bolus by 80% and set a TBR (temporary basal rate). At the gym I did my usual routine for the usual length of time. I had a measured small amount of fact acting carbs before and after. I tested when I got back and was 10.0 (180).

This morning I woke to 7.6 (136). I ate exactly the same breakfast. Exactly the same bolus and basal tweaks were made. I did the same set of exercises over the same length of time. Ate the same number of fruit pastilles. Got back to 6.4 (115).

Now I'm fairly happy with either to be honest, but the difference in the two days amounts to almost the entire 'range' that people living with diabetes are supposed to aim at. And I didn't change anything.

With Artoo I have a cracking set of clubs, it's just that I'm trying to play golf on a blustery day.

What if?

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

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

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

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

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

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

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

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

New big meal strategy: thirds

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

This is, of course, blindingly obvious.

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

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

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

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

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

Learning to love my Aviva Accu-chek Expert

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

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

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

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

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

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

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

Summertime Blues

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

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

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

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

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

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

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

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

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

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

At the risk of sounding like Grandma Walton

I haven't added to this blog since June and wow, what a year we have had. We have all changed. Tomorrow is the anniversary of the birth of the idea of this blog. I can't believe it's only a year, so much has happened.

Ellen has become a teenager, Beth has grabbed the challenge of secondary school between the teeth and is giving it a good shake, stand back the rest of year seven, Mike has learned so much he could write a PHD, and me, well I, apparently, am allowed to be me.

The children grow up and begin to take responsibility for themselves, and at the risk of sounding like Grandma Walton, I am very proud of the people they are growing in to. I don't always find it easy to stand back and let them get on with life without my valuable input; but I try very hard, and hope it will get easier the more I practice (and get told off). I have had a whole lot more time free to work and build up a career since we said goodbye to primary school and all the extra responsibilities that went with it. It will take a while to get back the confident cockiness I had before kids, about the same length of time it takes to earn an income I expect, and I am frustrated at having to be patient (not my strong point) and wait for both. It will happen.

Mike, however, is the icing on my cake. I cannot emphasise enough what an important process Mike has gone through this year, and if you are in Mike's position, if you are around forty years old, have a partner, possibly a family, if you haven't already taken responsibility for your control, then do it now. Mike thought he had. He would have denied it a year ago if I had suggested otherwise, and maybe he would have been right to do so, because his control was pretty good, and certainly no one had suggested that he was doing it all wrong, or even made any particularly useful suggestions as to how he could improve; all I know is that a year ago I was a wife and a carer, and now I am just a wife.

I haven't had to fight Mike to bring him round from a hypo since, maybe last April. This was something I was used to doing at least once a month and sometimes several times a week, for the fifteen years of our marriage; it never felt like I was fighting Mike, I was fighting the diabetes, but it was my fight, Mike wasn't really there, it was a responsibility I had no choice but to take on as part of our marriage. I don't like fighting.

If you are about forty... however much you think it doesn't matter and that you won't go through a mid life crisis, I think you do. I will be a happy pensioner, I'm looking forward to slightly furry cheeks; but at forty, I did take a close look at my life, and what it could look like in another twenty years, and although most of what went through my head made me smile, the fighting made me feel exhausted. I know Mike has to cope with his diabetes all day everyday, and I am happy to take on some of that responsibility for him if I can, but I needed a rest, and the work Mike has done towards understanding and controlling his diabetes, has enabled him to take full responsibility for it for nearly a year now and I know that he feels better for it too.

I think Mike is beginning to tame his diabetes, we all live with it, but we're not scared of it - and most of the time it's pretty well behaved.

Jane

Diabetes is enough to drive you nuts

I came across this description from DiabetesDaily (a largely US-based diabetes community/forum/collection of blogs) today:

Diabetes is a complicated and unforgiving disease. To manage successfully, it requires knowledge, problem-solving skills, and a reservoir of patience. Even then, life happens and throws everything into chaos.

It pretty much sums up my day yesterday.

Diabetes hasn't made me smile in a long time, but some results yesterday were so crazy, so illogical, so utterly ridiculous that I found myself grinning all over my face this morning.

I've been having a pretty good run of results in the last few days - now that the craziness and unpredictability of Christmas eating has passed. I began yesterday morning with a bg of 8.0mmol/l (144 for US readers). A bit on the high side, but not too bad. I had a pretty standard low GI breakfast (two slices of Burgen toast) one that I know usually behaves itself and left my usual 45 minutes between bolus and eating. By mid-morning I had spiked way up to 14mmol/l (252). Took a correction and was nicely back in range with a 7.2 (130) before lunch. I put the spike down to a little liver-dump tomfoolery and left it at that.

For lunch I had two slices of Burgen again, low fat mayo and some leftover chicken. Plus a smallish Clementine to finish. Left 15 minutes between bolus and eating (which is usually enough at lunchtime for the Humalog to get going). Carbs-wise that makes around 35g so I bolused at my usual ratio (4u). 30 minutes later I'd only risen by a tiny 0.2mmol/L (meter inaccuracy notwithstanding). BUT two hours after lunch I checked again and had shot up to 15 (270).

So let's get this straight... I ate completely familiar foods, counted the carbs, took usual doses and in both cases ended up spiking to the sort of level I'd usually like to avoid.

At this point, our evening meal looked like a scary prospect. The girls were given horse-riding lessons from grandparents at Christmas so they were going to be back late and hungry. We'd decided to pick up food from the chip shop to make things easy. So this meal is massively high in carbs AND high in fat AND on a day when the usual rules seem not to apply. Hmmmm tricky! But what could I do except use my usual (and often fairly successful) approach of a stab-in-the-dark at the carbs and a 60:40 split dose 60% before eating and the rest an hour or so later.

Pie and chips. Carbs were estimated at 140g (I know... I know...). 10u up front with a pre-meal reading of 4.3 (78). An hour later I was up to 7.5 (135) and took the second half of the split - 3u to allow for being slightly close to the edge before the meal. At three hours after eating I had dropped back to 5.2 (94) still had a fair amount of insulin on board so had a couple of leftover Christmas chocolates to play safe. Went to bed at 11pm at 5.9 (106) with a reported 1.5u of active insulin according to Colin (my Accu-Chek Expert). I figured that at least some of the evening meal was still chugging through my system, delayed by the amount of fat involved so left it at that, trusting the chips to see me through the night.

I woke at 5am. This is very unusual for me, and I immediately assumed that my BG must have dipped into hypo during the night. A blood test revealed 5.7 (103) so I just went back to sleep.

Woke this morning to a reading before breakfast of 5.5mmol/L (99) and it was then I started grinning. Both my low fat, lowish carb, low GI meals in the day had ended badly, but a pie & chips blowout followed by chocolate and a glass or two of wine had resulted in spectacularly good levels. This is the mystery of diabetes. This is why it drives us crazy.

Now I'm not suggesting we all eat pie & chips constantly from now on, but after yesterday it is quite tempting :)

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.