Monday, 14 April 2014 | by Mike K

Diabetes Speed Dating Clinic Type Thing

Some months ago I found myself looking back over the past few years.

If you've read our blog before (congratulations on your uncommon stick-ability) you may remember that we began writing about my diabetes as a family as a result of an unusually nasty hypo. One which made me question whether I was quite as competent at managing my diabetes as I liked to think I was. Posts from others in the household have dwindled rather, and you've ended up stuck with me. Sorry about that. But I look back over the past few years and realise that I have been on a full-on misty-eyed X-Factor-Strictly-Voice-finallist 'journey'.

I was reminded about this yesterday while reading a blog post by The Grumpy Pumper about his own story of venturing into the Diabetes Online Community (DOC). I have had similar conversations with Dave (@SowerBee) previously too.

It seems to go something like this...

  1. Get diagnosed
  2. Learn to muddle along in your own way, with varying degrees of success
  3. Never, or almost never, meet or speak to another actual real-life person with diabetes
  4. Feel slightly isolated and faintly dissatisfied with how you are doing but don't know what to do about it
  5. Lose a bit of faith in suggestions made by various healthcare professionals/clinics/consultants/registrars/DSNs (what do *they* know - they don't live with this day-to-day, harrumph etc)
  6. Carry on for 5/10/15/20 years
  7. *Something* happens
  8. Look for support online and/or meet other PWD face-to-face (eg on DAFNE)
  9. Lightbulb moments ensue
  10. Engage, share, try new strategies, feel empowered
  11. Understanding and management of condition is transformed

Now here's the thing.

This is a pattern I see repeating, time and time again in the experiences of others just as it did with me.

But there are still so many people at point 5 or 6. People for whom the standard structure of clinic appointments just isn't quite working, but who either don't realise that 'peer support' like the DOC exists, or who would run a mile from the very idea of it, believing that it is 'not for them'. I know the second group well. I was a fully paid-up member for all the years that deep-down in my heart I knew I was struggling a little, but made myself believe that 'this was as good as could be expected' and 'nothing works'. Of the 300,000 people living with Type 1 in the UK how many are connected with others? 3,000? 10,000? That still leaves the vast majority 'soldiering on' on their own with only an Annual Review for company.

So what can we do for them?

Don't get me wrong. I'm not saying that peer support could fully replace 'proper' consultations with qualified and well-trained healthcare professionals. I am aware that dark, weird and scary corners of the internet exist, where all sorts of odd ideas are bandied about as fact (though these are hard to maintain in well-populated, mixed groups and in my experience the DOC doesn't stand for nonsense). But I'm also aware that there is nothing quite like hearing experiences of someone in your position, who does live with the same condition as you every day. Who faces the same struggles and has tried strategies that you might consider.

I've also spotted another phenomenon. If you attend a 'meet up' of forum posters, bloggers, tweeters or others who live with diabetes you will not be able to get them to shut up. In fact, you will struggle to get a word in edgeways. Questions will be asked, approaches and strategies compared, support offered, understanding and empathy for the sheer relentlessness of it all given freely.

I'm also aware that every day, up and down the land, dozens of people sit side-by-side with other people with diabetes in stony silence.

And this strikes me as odd. Or at the very least a massive missed opportunity.

I've been meaning to write this post for months, but kept putting it off because I could never quite get my head around the details. To be honest I couldn't even work out a proper title for the post (this you will have noticed). But the time has come to just 'put it out there' to see if some brave Consultant or Clinical Lead can do something with it. Someone like Partha perhaps?

Here it is: Wouldn't it be great if there was a way to harness all those wasted minutes in the waiting rooms at diabetes clinics. If there was some way of facilitating peer discussion and support while we are all sat there waiting for our number to come up. At the very least it might prompt some actual questions to ask in the appointment itself, rather than everyone just sullenly descending into smile-grunt-nod territory.

Something a bit like speed-dating. Sit opposite a person or two for 5 minutes, ask them how they are getting on. How long they have had diabetes. Is there anything they particularly struggle with. Do they have the same problem I do with this or that? What do they do about it? Ring a bell, everyone moves around... 'You'll never guess what that last bloke said...' 'Really? Oh I get that too...'

Of course there would have to be some sort of 'opt out' for people who simply can't face the idea. But I'd love it if we could break the unwritten rule in diabetes clinic waiting rooms that 'thou shalt not say anything to anyone'. For people to be actively encouraged to compare experiences and support each other. So that each clinic appointment would combine the very best of both D-meetups and HCP input.

If that was on offer - would you join in?

Friday, 4 April 2014 | by Mike K

Getting animated

I was remembering back to my heady art college days recently, particularly some early experiments with animation. Animators at the Disney studios developed 12 principles of diabetes animation in the 1930s, including anticipation, follow through, slow in/slow out and, of course, squash and stretch. All these seem to have an uncanny resemblence to how my blood glucose levels have been behaving.

From time to time (read more or less constantly) I seem to go through periods of change where I need tweak various doses, ratios and settings in order to get them to behave normally*, so that the dose and timing of insulin for a meal which worked perfectly last week might be expected to work again for the same meal this week - in the SAME way (craziness!).

* I realise, of course that this has no actual meaning in day-to-day diabetes management terms. But it is, nevertheless, a nice idea.

An obvious one might be during a period of illness. You expect your insulin requirements to increase at some point, to some unknown level... but it's very difficult to actually anticipate with any certainty what the change might be and when it might happen. Even with illness, some coughs and colds behave completely differently to others BG-wise. Some are all up front. And it's only later when the sore throat appears that you understand why you've been fighting double figures (200s for US readers) for days. Other times you can have all the symptoms of a stinking cold, but BG just potters along entirely unaffected. Then if you have needed to up all your basals and/or doses, you know that at some (again unknown) point in the future you will need to rein them all back in again or you'll be landed squarely in hypo-central.

Another favourite is a fall-off of gym visits during a school holidays. I'm just coming into that now - the girls break up for Easter today. As the rhythm of the house changes I find it all but impossible to get up and out early enough to get to the gym and still be able to start work on time. For the first week things often toddle along as normal, but then one day in week two BAM! It's as if my insulin has turned to water. So I try to make sensible, small changes to basals. Enough to have an effect, but not so much as to go too far the other way. The constant balancing act. This usually involves a frustrating few days of doing battle with double-digit readings, however careful I am being with food and carb counts.

More recently I have also noticed an unusual phenomenon which I will be watching with interest this time. In animation 'slow in/slow out', 'squash and stretch' and 'follow through' refer to a more realistic way of handling movement. Movement tends to begin gradually, then accelerate, then slow again into changes of direction. You can almost feel it in yourself as you move about. Squash and stretch and follow through relate to the way animated objects often appear more satisfying if there is a little elasticity added. Rather than just stopping hard at the end-point there's a little extra movement beyond it and then a bounce-back to rest.

This seems to be exactly what happens with my dose tweaks too. I battle with highs for days struggling to find the right level of increase. Then I find it and I get perhaps a day or two of good numbers. But then I seem to get a little 'bounce back' and have a day of low readings where I have to dial the adjustments back down again to counter. And then things settle. At least for a while... before we're off again.

I think it's important for Healthcare Professionals to understand the relentlessness of these daily adjustments when they peer rather disparagingly at a printout of ropey numbers. There is no 'right' set of ratios and correction factors, only 'right for now'. This darned condition doesn't stand still for a minute and all the time you are playing catchup you are logging results that are outside of what you'd like to see, not because you are not trying hard or putting the effort in, but just because the rules have changed. Again. If I get a settled week or two I count myself lucky. But I know that membership of #teamsmug is usually very short lived.

That's all folks!

Friday, 14 March 2014 | by Mike K

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?

Friday, 7 February 2014 | by Mike K

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.

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!

Friday, 10 January 2014 | by Mike K

The Big EDUAD Timesulin Giveaway!

I know... I know... You wait weeks for a post then three come along all at once!

Those of you with memories as bad as mine will doubtless have forgotten that I wrote some time ago about Timesulin, an ingenious replacement insulin pen cap. While not a fully equipped dose memory device the Timesulin is brilliant in that it does solve the main challenge of "Did I take my insulin just now or not?".

There are different versions to fit the pens for most popular UK insulins and the device works by displaying how long it has been since the last dose was taken. A quick glance will tell you whether it was 5 minutes or 4 hours and Hey Presto! No more missed-dose vs double-dose conundrums.

Cleverly the device does not need to you interact with it in order to register the injection, it 'knows' when you take the lid off the pen. And even more clever, it allows you to take a quick peek at how much insulin is still in the cartridge without registering that as a dose. Which is a great touch and kinda lets you know that at least some of the people who developed it have T1 themselves.

The lovely folks at Timesulin have offered us three, yes THREE! Timesulin caps to you, dear readers. If you would like a chance of winning one, please just send your name by the end of January to mike[at]everydayupsanddowns.co.uk or leave a comment below. I'll put all the names in a hat and draw the three lucky winners on 1st February 2014, then Timesulin will send you whichever cap suits your insulin free of charge.

Good eh!

So drop me an email and good luck :)