The 'busy bar staff' tip - DBlog Week Day 5

Today's topic for Diabetes Blog Week is all about hint and tips - Share the (non-medical) tricks that help you in the day-to-day management of diabetes.  Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only! (Thank you Rachel of Probably Rachel and Kelley of Below Seven for this topic suggestion.)

Busy bar staff. Bustling restaurants. "Diet coke please" I shout over the ruckus at the bar and hope that the person taking the order heard properly and is being careful to put their thumb on the right button on the nozzle. But then, some time later a BG test reveals that it was the regular, full-on, carb-laden version instead. Never a happy moment. And the uncertainty of it *always* crosses my mind when I order a diet drink in a bar or restaurant.

Many people seem able to taste the difference between the two, but I've never been able to be sure. I knew for years that you can use urine glucose testing strips to check, but I never quite got around to going and getting any. But the solution is actually far simpler than that. In the unlikely event that anyone reading hasn't had this idea themselves already, here's a tip I picked up a year or two ago from a forum which I have used ever since:

Whenever I get my diet drink order, I just dip my finger in the top of my drink. Within a few moments the liquid will begin to dry. A full-sugar drink will make your fingers go sticky whereas a diet drink won't (the gaps between my fingers seem particularly good at sensing the stickiness).

Simple, effective and no equipment needed.

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?

Type 1 Diabetes - a 30 second guide for busy journalists and scriptwriters

Too busy even for the introduction? Click here!

OK. Enough really is enough.

Over the past 24 hours I have seen a *lot* of comment about a piece published in a major online newspaper site yesterday. It is a site that often seems to struggle to get the basics of diabetes the right way around - and it is not the only media resource to struggle, not only that, but TV and movie scriptwriters usually get it just as wrong too. I guess it's understandable... before diagnosis I knew *nothing* about T1 Diabetes either. But if you are going to write about it, it would mean an awful lot to all the people living with the condition if you could just spare 30 seconds to get your head around the basics first.

The story concerned a woman who was forced to leave a popular high street fast food outlet because staff mistook her insulin injections for drug abuse. Thankfully it was rapidly corrected by the site in question following a slew of complaints from PWD. The following snippets have been quoted elsewhere from the original version:

"Sarah P, 36, ordered a Big Mac from the fast-food chain last Friday and used her EpiPen to inject herself with insulin to increase her blood sugar level before tucking into her meal."

Type 1 diabetes accounts for ten to 15 per cent of all people with the condition and if they do not inject enough insulin through the day it can lead to a state called hypoglycemia."

I've marked the obvious errors in italics. Inaccuracies that might cause fatalities elsewhere if someone decided to be a 'have-a-go First Aid hero' are marked in bold. I am given to believe the full article contained many more.

I realise that journalists are busy people, so I've put together this 30-second guide to Type 1 Diabetes. That's a full five seconds per bullet point and five seconds to rest at the end.

1. Type 1 diabetes is an autoimmune condition unrelated to diet or lifestyle and while commonly diagnosed before the age of 18 can occur at any age of life.

2. Successful management of Type 1 involves avoiding both hypo- (rhymes with LOW) or hyperglycemia (HIGH blood glucose)

3. Insulin drives blood glucose levels down.

4. Carbohydrates (especially sweet/sugary/non-fatty foods) push blood glucose levels up.

5. Almost all 'emergency' situations the public will encounter are likely to involve LOW blood glucose, treated by a sugary drink, glucose tablets, fruit pastilles or jelly babies. Administering insulin under these circumstances is potentially fatal.

So there you go. Not too hard was it? Feel free to pop off and have a celebratory tallskinnycappufrappuwhatnot.

It's all about the balancing act to keep the little green ball in the diagram above centred between the two bars of nastiness. Too much insulin and blood glucose can fall to a level where the brain cannot function properly leading to confusion and sometimes convulsions or unconsciousness. The remedy is simply to raise blood glucose levels with something sweet. Preferably liquid. Hypoglycemia, low blood glucose (if you still don't get it, think hypo-allergenic) is usually swiftly treated by the person themselves, but if you come across a Type 1 behaving very oddly or aggressively, not making sense, slurred speech and sweating profusely - the chances are all they need is a few swigs of Lucozade and in 10 minutes they'll be as right as rain.

Hyperglycemia, high blood glucose (still struggling? think hyper-active) is usually caused by either too much food or not enough insulin. It is annoying, but does not usually present any immediate danger - apart from the fact that the T1 in question is likely to be a bit grumpier and thirstier than normal. Long term though, over several years, it can cause all sorts of nasties... blindness, amptuation, stroke, kidney failure, neuropathy and a host of other 'diabetic complications'.

Of course there's quite a bit more to it than that, and before anyone chips in, yes of course I realise that there are some very urgent medical situations that involve high blood glucose levels leading to DKA, but let's just get the basics in place first and then work from there eh?

If you are hungry for more detail you could always download the Diabetes UK "Reporting on Diabetes: A Guide for Journalists"

Annual reviews and first appointments - A guide for junior Doctors,trainee DSNs and other HCPs

To state the ridiculously obvious - Type 1 diabetes is not always very easy to live with.

The relentless requirement to monitor, juggle and account for a hundred-and-one variables (food, doses, exercise, weather, stress, hormones... you know the drill) while trying to live a relatively normal life day to day can be quite a frustrating business.

It is a great comfort to know then, that we have a number of ferociously clever and wonderfully kindly professionals that we can regularly visit who are dedicated to supporting us in our daily battles with the big D. Most of us will only get a precious few hours a year to receive this input, so it's important that we can make it count.

A month or so ago someone who I consider to be quite a good friend (which is odd really since our contact has only ever been of the remote and electronic variety) shared an experience of an appointment with a young and perky Registrar which, from what I can gather didn't work out too well. I think it's fair to say that my friend has now - some weeks later - just about managed to come down from apoplectic-teeth-grinding rage into the significantly calmer strangers-crossing-the-street-to-avoid-thunderously-angry-expression.

This got me thinking about what it is that we long-term pancreas-impersonators (or newly diagnosed for that matter) might hope for out of our precious appointments. If you've not done many D clinics before (or even if you've been running them for years!), here's what I would hope you would bring to the party:

Hello
First impressions count. I've met a lot of HCPs for first-time appointments and you would be surprised how many don't introduce themselves. It's a busy clinic, I realise I may never see you again, but it would be nice to know who you are.

Please, please, please just take a moment before I come in to skim read my file. If you are checking that information is up to date then be a bit careful of how you ask those questions. "So... you have type 1 diabetes?" might seem innocent enough, but some people you will be seeing might have been living with their condition for longer than you've been alive - so it's not really a question that needs to be asked. T1D isn't really something that's going to go away. Know my type. Know how long ago I was diagnosed. Know what direction (if any) my HbA1cs have been moving recently and what insulin(s) I am using. If you are checking records for accuracy and up-to-dateness, tell me that you are checking. Otherwise I'll think you are an idiot.

It isn't your fault
This is slightly unfair, but I'm afraid there's nothing to be done about that. You have no way of knowing what sort of horrendous appointments I have endured in the past (I haven't actually, but many have). The last thing we both want is for the steel shutters to come down behind my eyes and for me to descend into 'smile-and-nod' grunting, just waiting to leave - that will do neither of us any good. Here are a few of the states-of-mind in which I have arrived at appointments over the years:

• I have identified a problem or issue and I have no idea what to do about it. I'm hoping for suggestions.
• I have identified a problem or issue and I am working on it. Your suggestions might be something I've already tried and found not to work.
• I have identified a problem or issue and I think there's a gadget/change of insulin that might help.
• I know things have been going OK recently and just want my results, thanks.
• I know my results are a mess and hope I'm not going to get some kind of telling off. Don't you understand how impossibly difficult this is to do day to day?
• I'm past caring, nothing I am doing seems to make any difference and previous clinic suggestions have just made it worse - I would ask about psychological support, but what's the point?
• I don't have time for this and want it to be over as soon as possible.

You will need to develop a forensic, interview technique to glean from my merest eyebrow twitch which of those states-of-mind I am in. Alternatively - you could just come right out and ask me at the start - there's a thought. Ask open questions, be interested in the answers. Diabetes is not always textbook, you may know a lot about diabetes that I don't, but I'm the one muddling along with my diabetes 24 hours a day. As we say in the DOC - Your Diabetes May Vary. Most often I'm not expecting you (or even wanting you) to give me definitive answers, but rather to suggest strategies, principles or techniques that I can try out. And be asked about what sort of level of support and follow-up I want.

Not a number
I am not my numbers. I am not my A1c, my high this day, my low that day. These are information, but they don't define me and certainly don't necessarily represent the amount of effort I am putting in. Ask me what I'm aiming for, and why. If you think my A1c is too high or (too low) don't say anything until you've found out what I think about it. Ideally you've already picked up some story-so-far clues from my file (see 'Hello'). There is always ALWAYS something to improve. I want us to work together to make my numbers just a little bit better by the time my next appointment comes around, but I don't need telling off. Ever.

Questions, questions
Questions are your friend - I know you know this already, but it is worth restating nonetheless. Ask me what I am looking for. Find out what I am already doing (or considering starting) to try to reach my goals. That way you'll be in a better position to give me some really helpful pointers. You'll realise, of course that I may have come in with my guard up. You might have to tease the truth out of me, but asking the right questions will make us feel like more of a team - that you are on my side. Be especially careful if I have brought in any information, charts, print-outs and so on - you would be astonished how often these carefully prepared sheets are simply brushed aside. Pay them attention - ask me if there's anything I've spotted that needs looking into. If you spot what you think is a pattern, ask me whether I think it is significant and if not, why not. Sometimes type 1 diabetes is just random and frustrating, but a fresh pair of eyes and a healthy discussion about tactics and options can be just the thing to open up a new line of experimentation. Think of yourself as a top-flight Premiership football coach. Talk to me about strategy, technique and tactics rather than how far to kick the ball.

Never assume I know something
You may be up to speed with all the latest diabetes management techniques and fully immersed in decades of diabetes research. As a long-in-the-tooth patient, you would be forgiven for believing that with all my years of experience I am bound to have come across all this knowledge already. Carb counting... basal testing... dawn phenomenon... difficult foods... correction and insulin:carbohydrate ratios... I may know about these, but ask a carefully phrased question to assess my current approach to challenging day-to-day management situations in order to fill in any blanks I may have in technique and understanding. Once again the questions are crucial - otherwise we are into dangerous chicken-ovulation-inhalation territory.

Never assume I know nothing
Obvious really. But few things will sour our fledgling relationship quicker than you assuming that I have no idea what I'm doing. You never know... I might be one of those people who has read many of the academic research papers that are freely available online these days. I might have spent time keeping up with developments in technology, treatment and even the minutiae of NHS funding options because this stuff really matters to me. I may even have some interesting opinions - it won't hurt to ask.

Never assume. Anything.
That's your 2 second 'lift test' right there. If this is the only bit of this post that you remember, then we'll get along fine.

What about anyone else? Any hints and tips for HCPs for the perfect first appointment? As ever, comments welcome below.

Owning your targets

I replied to a forum thread today, and only as I was posting did it strike me that I've completely changed the way I view my blood glucose target range in the last year or so. A mother with a teenage type 1 diabetic daughter was expressing concern about the extra fingerstick blood glucose tests, basal testing etc that would be part and parcel of her move to pump therapy. She then said she had to text to remind her daughter to do a test, and text back the results. It made me wonder how that felt for a young person. Whether they would feel that the tests were for them at all.

And then I realised that was exactly how I had felt about these things too.

The recommended levels for adults with type 1 diabetes in the UK are 4-7 mmol/L (72-126mg/dl) before meals and less than 9mmol/L (162mg/dl) by two hours after meals. This is, frankly, a tiny target to try to hit. To be honest the permitted percentage of inaccuracy on a BG meter is 10%. So the meter itself is only accurate to one sixth of the target range some of the time. I've had 20-odd years of consultants telling me that I was 'doing fine', but 'should try to have not quite so many highs and avoid those lows'. I've always just smiled through gritted teeth at such comments. "There speaks a person" I would say to myself, "who has never tried to guestimate the carb load and absorption rate of a meal, and tried to match it precisely with the activity profile of an insulin injection, taking into account any abnormal activity level during the day." If they wanted me to hit their stupid target, they should have made the darned thing a bit bigger.

In a small, but incredibly crucial way though, my mindset has changed. The shift was so slight I only noticed it when trying to look at the same issue from someone else's point of view. The range, is still as tiny, but it is now my range. Whereas before I would grumpily think, "well that's just impossible... I'll aim for 4-10, but for you to ask me to do any more than that is just unreasonable" I now see 4-9 as my target for me.

I've never tested so much in all my 20 years with diabetes as I have over the last 14 months. I've never voluntarily gone without so many meals to check on my basal insulin's activity. In all likelihood I would not be doing so without meeting other diabetics online. Diabetics who hit their own tiny target ranges. Not every day, but often enough to prove that it is at least possible.

Once you understand that the target (whatever you decide that it is) is your own, all the effort required to aim for it, and let's not pretend that is isn't a LOT of effort, somehow becomes much easier.



Edit: Just re-visiting this post after several years and I have realised that in the time in between I have altered and changed my targets on more than one occasion. And this is fine too. Currently I'm finding 4-10 gives me less opportunity to berate myself over high readings with an additional soft lower limit of 5 which I will treat as if low to give myself a little more wiggle room. What's important is that I feel these are what I have decided to do for me. Not some impossible nonsense handed down from on high.