Libre-ating?

No, you haven’t clicked on an old link, or got here in a TARDIS, this is really a FreeStyle Libre review written in 2016.

I’ve finished my first 14 day stint with a sensor and I’m thinking about what I’ve got from having it.  This is old hat to a lot of people so you can skip the TL;DR stuff if you want – I won’t be offended.

The general reaction from anyone in the Diabetes Online Community regarding the Libre is “Oh how are you finding it?” – a fair question to ask, but not necessarily an easy one to answer.  Before I plugged myself in for the first time, I wrote about why I’d waited so long and what I was really hoping to get out of using the almost-CGM system.

So how did I find it?

Well putting the sensor on in the first place took a while.  I don’t think I’ve ever seen a more intimidating set of packaging in my life so it took a fair amount of courage/encouragement/mocking before I pushed the thing in.  Yes OK it didn’t hurt, but it look like it would so I stand by my reticence.    I’d plugged it in a little before bed so I’d have an overnight set of info to look at in the morning.

I’d set the boundaries on the reader to be between 4.8 and 7.8mmol.  I’ve no idea what other people do, but it seemed like a sensible enough range to me as that’s where I’d like most of my readings to be.

I think my overall experiences of the Libre in the first and second weeks were quite contrasting.   The first week felt positive – I had more information that I could understand and act on.  I don’t think the benefit of the directional information can be understated but it is equally important to fully understand what that information means, and how accurate it is (compared to a finger-prick test).  I was wary of effectively chucking all my old testing kit in a cupboard and solely relying on something new.  I tested almost as much as normal for the first 3 or 4 days before I got comfortable with it.

About as close as you're likely to get

The second week wasn’t as encouraging.  I got to a point where no matter what I did, the Libre was showing me as “Lo”, or under 3mmol when my finger-prick tests showed something entirely different.   The thing with diabetes is that more often than not, you can feel if your BG is too high or too low and often you test to see how high or low it is so you can treat accordingly.  Suddenly seeing “Lo” on a reader (BG < 2.2mmol) when you feel fine is quite disconcerting.  One of the biggest discrepancies I saw was the Libre reading 3.5mmol and my BG meter showing 8.9mmol.  I know there’s an inherent lag of around 10-15 minutes, but even that didn’t explain the constant low readings.

The arrow is deceiving, as you can see from the constant flat red line...

After about 10 days, I’d pretty much given up on relying on the Libre readings in any way (though I carried on scanning it to see how it was behaving).  A day or so before the sensor died, it had got itself back in order to a degree – constantly reading about 1.5mmol lower than a finger-prick test at any given time.  (It’s worth noting that this point that when I phoned Abbott, they agreed to ship me a replacement sensor as obviously those sorts of deviations aren’t good).

So what did I learn from this first foray into 24/7 data?

Well firstly, considering the three things I wanted to understand more about, I definitely noticed a dip mid-morning and having observed it for a few days, I tweaked my basal settings slightly and noticed the effect of that lessen somewhat.

Mid morning dip at about 10am

Regarding exercise, the Libre confirmed pretty much what I suspected, in that the approach I have at the moment (temp basal, few jelly babies etc) seems to work really well for me, with no noticeable spikes or dips.  Being able to keep that stable BG over distances up to around 10 miles is encouraging.  

Short spike before running, in range (and rising) at the end

Finally the occasional evening/overnight spike… it’s definitely there!  Work to reduce its frequency is ongoing.

Blerg

Secondly, I was amazed at how much having the sensor can influence your behaviour – whether you want it to or not.  I’ve read blogs over the last 12 months likening having a Libre to being like a game (think Flappy Bird) where up and downs within the blue band are OK, but do what you can to keep it within those boundaries.  Even after about 24 hours use, I can see how it gets that addictive and I was modifying my approach to self-management to try and keep a flatter line.  I’m more likely to bolus 5-10 minutes before eating now as a result of the Libre.  I’m also more likely to try and ‘nudge’ my BG in the right direction if I see it falling or rising quickly.

Cured.  Sort of.

The flip side of that is that diabetes with a Libre is a full time job.  More information seems to breed more action, which in turn breeds even more information.  If moving from pens to a pump is more of a constant reminder of living with diabetes, then throwing a Libre into the mix is basically signing your entire existence over to it.  I also think that the abundance of information is meaningless if you aren’t understanding and reacting to it properly.  Stories of people treating high BG with temp basals, or constantly fiddling with those basal settings every few hours of every day to try maintain a flat line isn’t (in my humble opinion) helping.  I think if you’ve got access to the information you need to be able to look at it objectively and make longer term changes.  I think information overload can easily be a contributing factor to diabetes burnout.

Obviously, the readings from the Libre are great when you can trust it.  Once you can’t, it becomes meaningless.  I don’t know how often other people finger prick test alongside scanning, but I felt like I needed that reassurance that the daily graph was worth looking at.  Towards the end of the sensor, I felt very demoralised by the whole process if I’m honest.  I felt like I was suddenly second guessing my every move, faced with a lot of information and decisions that I couldn’t make sense of.  I’ve had type 1 diabetes for 13 years and I haven’t been in a position where mentally, I felt like I did last week in about 10 years.

Finger-prick results never read below 4mmol...

Finally (you’ll be relieved to read), I was surprised by the little differences the Libre made.  I was really conscious of not laying on the sensor while I was sleeping.  I was very conscious of knocking it while I was walking or showering, and even getting dressed became quite a cautious activity.  I’ve no doubt that’s my own personal risk aversion, and not the experience of the majority, but it was definitely a noticeable behaviour change.

So where do I go from here?  Well I’ve got one more sensor at home, and a replacement on the way, so the experiment will continue.  I’m going to wait a week or so before going again (so it coincides with being away for a week, where I think the convenience will be most beneficial).  I definitely think an accurate sensor could play a very positive role in my life with diabetes, and probably lead to improved HbA1c results.  

From the first week, where it worked properly

I suspect that more frequent use would mean those behavioural changes become more normal (or at least less noticeable).   I don’t want my life to be 50 scans a day, along with constant small insulin doses or 5g carb snacks.  That’s not living to me, that’s just existing.  I want the ability to test at convenient times, get information I can trust, and learn how I can make simple adjustments, to remove the variability in my BG as much as is reasonably possible.

So is the Libre for you?  I can’t tell you (and neither can anyone else).  Like a pump, it’s a personal decision that you have to investigate for yourself.  I think it’s worth investing £130 (if you can spare it), to get a reader and two sensors so you’ve got enough time to make an informed decision.  If you’ve made it this far through the post, hopefully you’ve got some things to consider for yourself, but what works for me might not work for you (and vice versa).  However you choose to manage your diabetes is an entirely personal thing, and don’t let that change.

Libre Intentions

This will be quick - I've got to get a munchkin ready for a party in 30 minutes...

My first Freestyle Libre arrived in the post on Friday.  It's currently sat in its partially opened boxes on my sofa.  I'll probably take the plunge this evening - but right now, I'm filled with a sense of apprehension.

Not just because of the intimidating packaging (and thanks to those of you who've reassured me), but more because I'm not sure why I've got one.

There's no doubt it's popular among the online community - I've seen plenty of tweets and blogs about the virtues of it's quasi-CGM ability, and I've met a few people in real life who are incredibly complimentary about it too.

But I know my control is actually pretty good overall.  And I know I have the moderately addictive personality that could mean I can't just use two sensors and revert to conventional testing.  I've held off for so long because I want to make sure I'm going to use if for the right reasons for me.

Regardless of all the basal testing I've done, I know that at some point between 10 and 11am, my BG takes a dip.  Not always a huge one, but something strange happens around then and I'm hoping I can start to visualise what that is.

I also do a lot of exercise, and whilst I've worked hard to be able to manage my diabetes and run as much as I do, I've got a genuine curiosity about what happens to my BG whilst I exercise.  Again, the Libre should help me out there.

Lastly, I'll have some evenings where I eat late, and things don't behave in the way the usually do.  Last night was a prime example, where, despite meticulous carb counting and appropriate insulin delivery, I woke up around 16.5.  Not much cop is it?  Hopefully I can understand how that happens, so I can learn what to do about it in the future.

What I don't want to do is become someone who chases flat lines on a graph with temporary basal rates and huge doses of insulin.  I know from DAFNE that a more patient and informed approach is more likely to give better results and understanding in the longer term.

As you may know, I got to listen in on a few sessions at the Association of Children's Diabetes Clinicians conference on Friday, and two talks there really captured my attention.

Firstly, Dr Peter Adolfsson talk about how, in his native Sweden, patients (particularly paediatric patients) are introduced to continuous glucose monitoring before they start pump therapy.  Indeed it turns out, not all patients want or need pump therapy once they've understood how the glucose reacts to different situations.  This gave me hope I was making the right decision with a Libre.

The second talk was from Prof. Kath Barnard, who spoke brilliantly (and candidly) about the lack of psychosocial support for people using diabetes technology like CGM, and how many that self fund, do so and ignore a lot of the information they receive (e.g. cancelling/ignoring alarms from devices).  This made me feel more cautious with the Libre.

Am I getting myself into something I fully understand that will give me the information I want, without changing my existing attitude and approach to managing diabetes?  In short, I don't know.  But there's probably only one way to find out...

Oppo Ice Cream - REVIEW

(Disclaimer - Oppo sent me three vouchers, each for a free 500ml tub of their ice cream.  I've not been paid to write this and Oppo have had no editorial rights over the content.  All views expressed are my own.)

I think ice cream is one of those almost universally loved treats.  Whether you're a kid at the seaside or you've ended up with a scoop of something decadent on the side of a restaurant dessert, ice cream is essentially awesome.

Before Christmas, Oppo got in touch and asked me if I fancied reviewing their three new low calorie, low carb ice creams.  Given my almost constant state of dieting, that's a hard thing to pass up.  During some initial conversations I was told the Oppo flavours were 'diabetes friendly' too.

Normally I'd be wary of such a claim.  Many of us (rightly) associate 'diabetic ice cream' with the addition of a bunch of polyols that have unpleasant laxative effects if consumed in any great quantity.  You'll be pleased to hear that Oppo has none of those unpleasant things added to it.   The lower carb/calorie content comes from switching out cream and cane sugar for whole milk, Stevia and coconut oil.

The premise is that Oppo have taken 3 flavours and boosted them with an added touch to each one.  There's Vanilla & Baobab, Salted Caramel & Lucuma and Mint Choc swirl with Spirulina.

Mint Choc

Vanilla

Salted Caramel

And here's the nutritional info from the back of each tub.  I've tried to get as much of the ingredients in as possible too:

Salted Caramel

Mint Choc

Vanilla

As you can hopefully see, each two-scoop portion for each flavour is around 85 calories each, with around 9g of carbs per portion too.  Pretty good in my opinion.

Now reviewing ice cream is a tricky business as flavour is an incredibly subjective thing but here we go:

I'll admit I was a little sceptical of the Mint Choc Swirl with Spirulina when I saw the three flavours that were available.  Mint Chocolate is one of my all time faves, and I've had mixed experiences with Spirulina when using it in juices/shakes.

I'm relieved to be able to tell you that this is my favourite of the three and that the addition of Spirulina hasn't been at the expense of the mint-chocolatey goodness.  The Mint Choc is also the softest of the three in my experience and there's no trouble scooping straight from the freezer

Mint Choc yum!

Next up - Salted Caramel.  I think this is the sweetest of the three and the salted caramel flavour comes through well.  I'll confess now that I'm not sure what lucuma tastes like and it's presence in this ice cream must be subtle as I can't detect the taste of something unfamiliar.  It's definitely nice though!

Salted Caramel

Lastly, the Vanilla.  Good old vanilla right?  Well that's what I think anyway.  It's a dependable friend is vanilla - not necessarily going to rock your world, but you always know what you're getting.  What I especially liked about this was the abundance of vanilla flecks as soon as you lifted the lid on the tub.  Again, I'm not sure what baobab tastes like, but you can detect something beyond the vanilla in this one and I think the two complement each other nicely.

Vanilla - hopefully the flecks come through!

One observation I've got about the latter two is that they're solid ice creams - literally.  If you've ever experienced trying to eat something like Ben & Jerry's Cookie Dough straight from the freezer, you'll know what I mean.  Whilst the Mint Choc is soft enough to scoop straight from the freezer, I found better results with both Vanilla and Salted Caramel if I got them out a few minutes before I wanted to eat them.  That's not a criticism (in my experience, those 'harder' ice creams tend to be better), but just a public service announcement.

In the interests of fairness, I opened up the review process to both my wife and (five year old) daughter.  Whilst kids need no encouragement to tuck into ice cream, Mrs Hoverboards is a little less easy to please (particularly when it comes to added ingredients like baobab, lucuma and spirulina) so I thought the opinions of both of them might add some context.

My daughter's views can be accurately summed up with the sentence "can I have some more?!" - nothing too unexpected there I suppose.

Mrs Hoverboards was equally complementary too.  "It tastes like actual ice cream" was her immediate feedback.  And she's right.  That doesn't sound like a big deal, but I think if you're making a new product in a market where everyone has a lot of preconceptions about what ice cream is, to have something that ticks the boxes on flavour and texture is a good thing.

So, the conclusion - would I go out and buy it?  That's a tough one I think.  Oppo is branded as luxury ice cream, and it definitely comes with a luxury price tag (around £5.49 per 500ml tub).  It's not necessarily easy to get hold of either.  I had to visit 2 stores to pick up all three flavours, and when you live a 25 minute drive from one of them, you certainly feel like you're working for your luxury.  (You can find your nearest stockists via the "Stockists" link on the Oppo website).

I think if you're a regular purchaser of other luxury brands like Haagen Dazs or Ben & Jerry's, you should definitely give this a look in.  Per 100ml Oppo has about 80 calories, compared with 225 cals in Haagen Dazs Vanilla (and even 150 in WeightWatchers Vanilla).  It has significantly less fat that the Haagen Dazs alternative (and about 10% less fat than the WeightWatchers Vanilla too).

Let's be honest, spending over a fiver on a tub of ice cream is an extravagance - there's no other way to say it.  But if you're prepared to spend the cash, you could definitely do a lot worse than spend it here.

I rarely have ice cream in because I know I'm easily tempted to eat a lot of it and I know it'll make a big dent in my daily calorie allowance.  With Oppo I've been able to eat it without compromising what else I'm eating, and I've done that as part of a reduced calorie diet.  That ticks the boxes for me personally speaking.

At the time of writing, a £1 off coupon was available from Oppo's website if you hit the homepage.  If there's a stockist near you - give it a go and see what you think.  It's a lot to do with personal taste at the end of the day

Ultimately, for me,  I think it tastes good, one serving has fewer calories than a slice of bread and it's low fat.  Would I spend a fiver on it?  Occasionally, I think I would (that Mint Choc is very nice).  But I'd probably struggle to justify the cost if I went through it at any great rate.

Dario Smart Meter - REVIEW

Disclaimer - I received a free Dario Smart Meter (along with 50 test strips) to use and review.  Dario have not paid me for my opinion, nor have they had editorial rights over any of  the content below.  All views expressed here are my own.

A couple of weeks ago, Dario got in touch and asked me if I'd be interested in reviewing their new Smart Meter.  It's a device that effectively turns your smart phone into a blood glucose tester.

Now if you're anything like me, you rarely go anywhere without your phone and BG testing kit so the idea of being able to combine the two (to a large extent) sounds appealing.  Plus I think we're all allowed to get a little excited about new diabetes tech right?  It's one of the few perks of putting up with Type 1 in my opinion.

So just over a week ago, I got my hands on the kit and here's how I think it performs...

The first thing to say is that it comes very well presented, as you can see below.

Dario Smart Meter box

I may have been a bit heavy handed opening the box, but I have a tendency to be like a kid at Christmas sometimes.

I think the meter is supposed to be in the orange section below - my bad

Test strips.  The box contains 2 x 25 strip cartridges 

The meter itself feels chunky, though I mean that in a good way.  It feels like it can stand up to being carried around in your pocket or bag without falling apart.  Mine has been carted pretty much everywhere with me over the last 10 days, and apart from being covered in fingerprints, it still looks brand new.

Out of the box

The device is split into 3 main components.  The orange section to the left houses the lancet.  You pull back on the black slider to prime it, then hit the orange button on top to inflict the pain that we're all familiar with.  The orange cap is secure without being too difficult to remove and there's a slider inside to allow you to vary the needle depth as is common to every lancet device I've ever seen.  I left mine on the default lowest setting and it's performed well even on my hardened fingertips.

The white section to the right houses a test strip cartridge.  Slotting the cartridges in is pretty straight forward and each one contains 25 strips.  It can be a little fiddly to get an individual strip out at first but once you've used a few it does get easier.

Meter with the cartridge cap removed

The final section is underneath and this is where the actual meter is hidden.  It's accessed by moving the orange slider.  The meter appears with a satisfying click and is easily removed.

As if by magic, the meter appears!

This surprisingly small component attaches to your phones via the headphone port - pretty nifty so far!

The Smart Meter device

At this point I should apologise for the rest of the photos as it becomes somewhat difficult to take a picture of your smartphone with your smartphone...

All put together

Now the only other thing you need to get going is the Dario app.  You can download it from the App Store for iPhones and it's available on Google Play for Android devices.  There's a QR code included in the box that you can scan to get a link to the app directly.

The app is free (as you might expect) but it's worth calling out at this point that one of the terms and conditions grants Dario the right to use your (anonymised) BG data for commercial purposes as well as for the usual things about improving the product.  That's personally not a huge deal for me, but I know a lot of other people differ from me so it's worth adding this in here.

The app walks you through what you need to do to get a result.  Once you've clicked the meter in, it prompts you to add a test strip, and then for a drop of blood (though I suspect many of us are way too familiar with the process already!)  You can see the app calculating the result which is pleasing - I find it reassuring to be able to see it working.

When you get a result, you get the option to add any additional info to the reading (carbs, insulin, activity) before you save it.  It also date/time stamps the info and there's location tagging if you have this switched on on your phone.  The results are colour-coded for at-a-glance reassurance (though those with red/green colour blindness may not benefit from this).  It's worth noting at this point that I didn't use those features so I can't comment on them, though I think if you keep track of that information in general, this is a useful addition.

Add carbs, insulin doses, activity or even tags

So how accurate is it?  Well Dario say it's compliant with the upcoming rules that all meters will have to adhere to from May 2016.  You can read a copy of that report in this link (opens in new tab/window).  I compare it to my own Bayer Contour Next a few times to get some sense of what it was doing.  I think the key thing with any meter is to feel like you trust it and that when you're acting on the info (treating a hypo or correcting a higher reading), you're doing so in confidence.  (again, apologies for the dodgy quality - real world examples and all that)...

Dario 4.1, Bayer 4.4

Dario 3.5, Bayer 3.7

Dario 3.5, Bayer 4.0

Overall I was pretty happy with how it performed and it was close enough to let me feel comfortable without having to constantly check on my regular meter.  I was happy to go out for the day and leave my Bayer behind and felt that I knew whatever I saw would be a fair reflection.

Two other features of the app are that it easily gives you an at a glance view of your recent history and the standard deviation of those results.

It also shows hypos and hypers so you can get an indication if the average is skewed by a lot of high or low readings.  I know other meters/software offer this too (my Bayer shows number in range, above and below after a few clicks), but I do like that it's all available immediately.

The last feature I wanted to mention is the estimated HbA1c reading:

You can see here from 30 measurements over the time I'd had the device, it estimated my HbA1c as 6% (which I'd be pleased with if it was true!)  I'm not sure how accurate that is but I like the dashboard feature so I can see how I've been doing overall.  I'm not sure if you can edit the "ranges" as I think it's reasonable that these may need to be personalised for individual targets.  There may be more infor on how to do that, but it wasn't immediately apparent to me after playing about in the menus for a little bit.  I'm sure someone will be able to tell me how that's done.

So... how does it fair in the real world?

Overall, I think it has a lot going for it.  It's definitely portable, and fits easily in my pocket alongside my phone and my pump.  I'm happy that it's accurate and I think the information presented in the dashboards in the app is really helpful.  You can use the Dario app without the meter and if you're interested in having that information at your fingertips, you might want to get the app anyway.  I think the design is pretty ingenious, and fitting a meter, lancet and test strips into something relatively small (about the size of the Bayer meter itself) is a feat of engineering.

On the other hand, only having 25 strips at a time may put people off.  I'm used to carrying 50 and I know roughly how long they last me.  It'd be an adjustment to carry half as many and I'd possibly worry about running out when I wasn't expecting it.  I'd be interested to see how the lancet part of the device stands up to prolonged use.  At the moment it does very well but I'd be concerned that the mechanism could end up being compromised by lint and general bits and pieces that are in people's pockets.

Whilst I also definitely do love the portability factor of it all, I do also wonder about how well people may be able to 'construct' it in the midst of a hypo.  It's not overly fiddly by any means, but compare having to get the constituent pieces, unlock you phone and get a reading to using a conventional meter then it's fair to say it does take longer and is a bit more involved.

Finally, from a purely personal point of view, in the testing case with my Bayer meter, I carry around a spare pump battery, some paracetamol and I use the spare pouch to bin the used test strips.   Adjusting that kind of behaviour for me has been interesting, and I've ended up with used strips in my pocket on more than one occasion.  I also don't believe it links to Diasend in the same way my existing meter does.

So - would I have one full time?  I think I could be persuaded but I'd want to run it alongside my existing Bayer device.  The Dario doesn't talk to my insulin pump and on more than one occasion I tried to use the Bolus Wizard and found I had to enter the info manually.  You can't test if you have headphones in (I spend a lot of time on conference calls using headphones) so there's that practicality to consider too.

But I do really like the fact that it's portable and a little more discrete than my existing meter.  I think having the choice when I go out to slip something in my pocket, or bring the bigger kit in a bag (or my wife's bag...) would be good.  I've really enjoyed having it around and when you consider the whole package is pretty small, and the info from the app is really useful in my opinion.  I don't think it could replace what I use today, but I think it does an excellent job of complimenting it, and makes living with diabetes a bit easier which is certainly no bad thing in my opinion.

If you're interested in finding out more about the Dario Smart Meter, you can head over to the Dario website where you can also see if your device is supported.  This link is for the Dario shop if you're interested in buying one for yourself.  Check with your diabetes team/GP/local CCG to see if any of it is available on prescription in your area first though.  The meter is £19.95 (inc 25 strips) and then it's £14.95 for 50 strips after that.  If you're self funding, it could start to add up so do take that into account.

Diabetes and Resilience - a child's explanation

As part of the fundraising and awareness work I do for the Sheffield Group of Diabetes UK I asked my daughter's primary school whether they'd be interested in getting all the kids to wear blue and make a donation for World Diabetes Day last month.

Each term the school has a "mindset" which they use to promote positive behaviour to children through a variety of different ways.  This term's mindset is resilience.   So whilst they'd already got Children in Need plans on that Friday, they asked me if I'd like to come in to an assembly and talk about how resilience is important when you have diabetes.

Now over the years, I've become pretty handy at talking about diabetes within my peer group, and especially when talking to other people with diabetes.  But talking to 200 odd children is a different proposition.  Most of the time, I'm using words and phrases like 'bolus', 'carb counting', 'peer support', 'care outcomes', 'HbA1c' and many others.  These are things you say when you've become used to the diabetes lingo that is common place for many of us.  

So how do you talk about diabetes to a large group with no prior understanding, and an age range of 4 to 11...  The answer is probably "I don't know", but that makes for a short blog.  So here's (roughly) what I said - you'll note some scientific license has been applied to a few parts.  That's not ignorance on my part, but a necessary modification for my audience.

Hopefully they found it useful in some way...

I'm going to talk about three things this morning.  Firstly I'm going to tell you a bit about what diabetes is.  Then I'll tell you what I think of when I hear the word 'resilience' and lastly, I'll talk about why resilience is important to diabetes.

So what is diabetes?  Well it's a special kind of illness that you have all the time, but you can't see.  And once you've got it, you have it forever, because there isn't a cure for it.  But it's not something you can catch off another person, so there's no need to worry about that.

When you all have something to eat, your bodies produce something called insulin inside.  That helps all the energy from your food get out of your blood and into your muscles so you can play at lunch time, and do your school work.

If you have Type 1 diabetes like me, then your body doesn't produce any insulin at all and so you have to inject it yourself.  And that's what I have to do.  Normally, you'd give yourself an injection every time you eat something, plus an extra one in the morning, and an extra one before bed.  So you could have to give yourself 5 or 6 injections each day.

You also have to give yourself little blood tests each day.  You get a little drop of blood from your finger and test it with a special machine that tells you if you've had the right amount of insulin.

There's also a different kind of diabetes called Type 2 diabetes.  People with Type 2 diabetes don't have to inject themselves, but usually do have to take a different kind of medicine every day in some little tablets.

When you have diabetes, it's really important to eat healthily.  It's OK to have treats like cake or chocolate sometimes, but it's important to make sure you have lots of fruit and vegetables every day.

Now I'd like to tell you what I think of when I hear the word 'resilience'.  I often think it's about how you cope with change.  Being resilient means that you have to learn to do things differently, keep going and not give up.  It can also mean having to do things when you don't think you can.  And that's why when you have diabetes, being resilient is really important.

When you get diabetes, you have to learn to do things differently.  Before, you might have gone out and have something to eat with your friends.  But when you have diabetes you have to remember to take your insulin with you, and your special machine  you use for your blood tests.  You also have to think more carefully about what you eat and how much insulin you have to inject.

You have to keep going and not give up.  Even if you're finding it difficult to keep injecting yourself, you have to be resilient and keep going.  If you don't inject yourself, you could get very poorly very quickly, and so that mindset of resilience in important.

And you have to do things even when you think you can't.  Sometimes, you don't want to get a drop of blood from your finger because you know it's going to hurt.  But you do it anyway because it's important you do the test to know how much insulin to have.

It isn't always easy having diabetes, but being resilient helps a lot.

Pain

A very rare post from me on my own blog.

 

I keep a lot of plates spinning most of the time, and sadly that means some fall to the ground from time to time.  I maintain a monthly blog over on the Diabetes UK website, but rarely seem to find time to come back here.

 

At the weekend, I finished my last competitive run for 2015.  That took my yearly mileage to 1066 (just short of 151 hours in total).  I’ve been tired for a while and the last couple of miles on Sunday felt like a real struggle.  Having finished, I feel like I’ve shifted some pressure off myself which is a much bigger sense of relief than I’d expected.

 

Switching off that area of my brain (for the most part at least) has been nice.  I’d lost the sense of why I enjoyed running and it felt like a job I had to do, rather than something I wanted to do.  Hopefully a few weeks off will allow me to regain some perspective.

 

The problem with switching your attention off something is that it doesn’t really allow you time to actually relax – that fleeting spare capacity is merely taken over by something else.  Last night as I was finding it somewhat difficult to fall asleep, I became reacquainted with pain, and suddenly became conscious of every small niggle and ache that I’d ignored for the last few months.

 

I’m quite lucky with my diabetes that (touch wood), it doesn’t really cause me much direct pain.  There’s the occasional time I’ll half press the button on the needle before doing a finger-prick test because I know it’s going to be more ‘uncomfortable’ than usual.  There’s also the extra deep breath and moment of hesitation before I insert a new cannula because I can’t see the hidden bruises beneath the skin.  Sticking a needle (even a short one) into a bruise you can’t see is extraordinarily unpleasant. 

 

After 13 years, I’m pretty much prepared for these daily pangs, though I’m not beyond muttering the odd expletive under my breath from time to time.  But I’m lucky.  I’ve got a chronic illness and it doesn’t cause me constant pain or discomfort and I can mostly live my life without giving it much thought.  (As I type that, I realise my cannula is currently in at a non-work friendly height as I bash it against the desk…)

 

But laid in bed last night I just felt pain everywhere.  Laying perfectly still, I could feel throbbing in my foot, a sharp pain in my ankle, an ache across my neck and shoulder... not constant, unbearable pain, just a dull sense of something not being right – a reminder that whilst I might occasionally live like I’m 20 years old, I’m definitely not.  And despite thinking that I’ve managed diabetes into a place where it plays a supporting role in my life as opposed to being the leading light, that’s really not true.  As much as I’d rather not admit it, diabetes deserves respect.  But only enough to keep it in line, not so much as it takes over my life.

 

I’m trying to allow myself to take it easy for the next couple of weeks.  Not switching off from everything, but reducing the amount of time I give over to certain things.  I’ve got fewer early morning runs to accommodate and my charity commitments for the year will mostly be over in a couple of weeks.  Christmas is around the corner and it’s the one certain time I can spend with family and friends without the distractions that the other 50 weeks of the year often bring.

 

Stay happy.

A little information can be a dangerous thing

Yesterday CrossFit caused what modern media would call a "Twitter storm".  Other people would call it a disagreement, a difference of opinion or simply a mistake.  Modern media loves hyperbole - me, not so much.

It started with this:

It's reasonable to say that this was certainly offensive to many people.  It's equally fair to say that what it's insinuating (Coca Cola causes diabetes) is also untrue.

I saw this shared a few times on Twitter and did so myself, highlighting to friends how inappropriate it was.  All the responses to that tweet were pointing out why the message was wrong, how insulting it could be and how people personally affected by diabetes had taken offence.

You'd expect CrossFit to realise the error of their ways, apologise and everyone could move on.  What they did instead was post a link to an article about how sugar was linked to diabetes.

At this stage it's worth pointing out a few facts, specifically that there are two types of diabetes.  Type 1 diabetes is an auto-immune condition and the cause isn't clearly known.  It typically presents in younger people but can do so in adults.  Type 2 diabetes is generally (but not always) brought on by being overweight and partaking in limited physical activity.  Gender, age, ethnicity and genetics also play a big part in determining if someone is more likely to get Type 2 diabetes.  

As you'd expect, a few people challenged Cross Fit about their link and as you can probably guess, CrossFit didn't really stop to think about what they were saying or how it was perceived.  Their next tweet said:

That's not true.  You can only have Type 1 diabetes or Type 2 diabetes.  You can't have both.  You can become more resistant to insulin over time if you have Type 1, but that doesn't mean you have Type 2 diabetes.

As you can imagine by now, this cycle of posting inaccurate information, only for it to be challenged by the knowledgeable diabetes online community continued.  One such tweet (since deleted by the CrossFit team) said this:

"and yet our point that diabetics shouldn't be drinking liquid sugar remains perfectly valid"

That's an incredibly dangerous and inaccurate thing to say.  It's also fairly irresponsible when you consider that over 293,000 people follow the CrossFit account (and some who aren't as well informed about diabetes are likely to believe it to be true).

For someone like me who has Type 1 diabetes, actually following that "advice" is potentially life threatening.  If I was having an episode of low blood sugar (hypoglycemia), something like Coca Cola would be absolutely necessary to stop me losing consciousness (and possibly my life).

It's easy to jump on the back of CrossFit (or at least whoever was in charge of their Twitter account yesterday) but I think the problem is more wide ranging than one errant social media account.  

The wider media perception of diabetes is that it's not necessarily all that serious, that everyone who has it does so through their own fault, and that by eating less sugar it's all entirely preventable.  For people living with the condition, it's both insulting and intimidating.  Attaching that level of stigma to a chronic illness is very irresponsible and can lead to people withdrawing, being scared to talk about their condition and not managing it correctly.

There's also some sort of implication that diabetes is fair game for jokes.  You don't see the same sort of things for other conditions like cancer (and rightly so I should add) because it's incredibly serious, life threatening and no-one's fault that they have it.  What people don't realise about diabetes is that all these things can apply equally.

At the start of 2015, Jamie Oliver apologised when being pictured next to a giant coke can with "Diabetes" written on the side in the Coca Cola font, stating that he was actually trying to highlight the lack of water in some American schools, where children were picking up sugar laden soft drinks  as there was no other choice.

As someone with diabetes, I don't expect everyone to know as much about it as I do or to understand how difficult it can be to live with.  Before I got diagnosed, I barely knew anything about it, but equally I didn't claim to know anything about it either.

As a person (diabetes or otherwise), I do expect those in a position to influence others (be it newspapers like the Daily Mail, or CrossFit twitter accounts) to report or comment on something serious after they've properly researched the full facts.  Passing off ill-informed opinions can have serious implications for millions of people and ultimately it's irresponsible to do anything other than be crystal clear with the truth.

The irony is that an active lifestyle is one of the best things you can do to help manage diabetes of either kind, and to help prevent Type 2 diabetes.  CrossFit seemed to be in the perfect position to use the facts to highlight how what they offer can benefit a lot of people.  Instead they chose to try and pull off something smug and fortunately it seemed to backfire.

Overnight (in the UK, during the day across the pond), it continued to rumble on.  There's something quite unsettling about watching an organisation who are clearly in the wrong continue to try and justify and defend their behaviour:

Firstly, as you can see above, "offending the sensitive" is apparently a small price to pay to ill-inform people.  For the record, I personally don't believe drinking excess amounts of anything is particularly good for you, not least Coca Cola.  But I also know that obesity is the link to Type 2 diabetes.  Excessive sugar consumption will most likely lead to obesity, in the same way that excessive consumption of anything calorific will do.  Eating sugar does not directly cause diabetes of any type.   Eating (or drinking) 'treat' foods (those higher in fat and sugar) should be done so in moderation.  Eating fresh fruit, vegetables, lean meat and some carbs is a balanced healthy diet.  But I say again, you can't get diabetes from eating sugar.

Next up, (just cut off at the top - sorry) is a triple whammy.  Firstly stating that any apology would be insincere, followed by a confirmation that making jokes about chronic illness is OK, and finished off, perhaps most staggeringly of all, by a tweet expressing disappointment about the "misinformation about diabetes and the role sugar plays in causing it".

If you've made it this far, the irony that CrossFit are the ones presenting misinformation is probably not lost on you.  Also EATING SUGAR DOESN'T GIVE YOU DIABETES.

CrossFit kept on pulling the trigger stating that if they have to insult "the sensitive" they will.  Well they don't have to insult anyone, 'sensitive' or otherwise.  They could just listen, understand and be more accurate in what they say.  Finally, they return to the scene of an earlier crime, stating that people with Type 1 diabetes can develop Type 2 diabetes.  No they can't.  Type 2 diabetes (as discussed way back at the beginning) essentially means your pancreas produces some insulin, even the tiniest amount.  Type 1 diabetes means your pancreas has no functioning beta cells (that produce insulin).  These two conditions are at odds - you can have one or the other, but not both.

At the time of writing this, I've not seen an actual apology from CrossFit for the way they misrepresented the facts.  They did post a few (subsequently deleted) tweets saying it should have been clear  they were only talking about Type 2 diabetes.  It wasn't clear, and it certainly wouldn't really have been any more accurate anyway.

They also posted this on Facebook:

When they say "the link between sugar and Type 2 diabetes is undeniable", they really should be talking about the link between obesity and Type 2 diabetes.

The also posted this on Twitter (highlighting that they absolutely haven't apologised):

I don't need an apology to make me feel better.  I know enough about diabetes to not need their validation or permission to do what I want.  I do want them to apologise for being lazy and irresponsible with their language that perpetuates the stigma of diabetes.

There's a reasonable chance you're reading this because you know me in some way, so you've probably read a lot of the science that distinguishes between Type 1 and Type 2 and nodded along.  Other people with a lot less experience of diabetes (like me 15 years ago!) simply do not know (and we shouldn't necessarily expect them to know) the difference, and are likely to be guided by the 'facts' that companies like CrossFit have misrepresented over the last 24 hours or so.

If you want facts about diabetes in this country, visit the Diabetes UK "Guide to Diabetes" page where you'll get accurate information.  Don't rely on companies with gimmicks to tell you the truth about something complicated.

There's a daily struggle to change that stigma that many people are subjected to that says having diabetes is your fault and you're to blame.  Some diabetes is preventable, but a lot of it (including all Type 1 diabetes) simply is not.  CrossFit haven't helped do anything to change that stigma and stereotyping and I think that's a real shame.

Apologies this has been long winded, but highlighting and disproving 'claims' like the ones CrossFit made today is really the only way that the perception will gradually begin to change and people with diabetes will stop being bullied, stigmatised, stereotyped and blamed about their condition.  We wouldn't put up with it for other long term illnesses, why should we stand by and accept it for diabetes?

CrossFit - #ImNotYourHomie