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

Diabetes And Me

A blog on here is sadly a rare thing these days.  It’s not that there’s nothing to say, it’s that there’s less and less time available to write any of it down (though I still have my regular post over on the Diabetes UK Blog site)!  That said, I felt inspired to pen something, however brief for Diabetes Week.

This year’s theme is “Diabetes & Me” and having already read so many wonderful posts I thought I’d throw my own opinion into the mix.

Put simply, I truly believe that since the start of 2013 I’ve been able to control and understand my (type 1) diabetes more successfully than I had in the previous 10 or 11 years and that the reason for that is threefold:

1.       Finally running out of excuses and actually attending a DAFNE course – a complete step change for the better
2.       Having regular opportunities to speak to people with diabetes face-to-face at local group meetings and other events
3.       Being involved in part of the wider diabetes online community through Twitter in particular

I’m sure I’m banging the same drum as many other people, certainly with respect to that last point, but the effect that talking about your own experiences of diabetes with others who completely understand everything you’re saying is unquantifiable.  We’re all members of a club we wouldn’t have joined by choice, but those things that unite us are the same things that we can use to support each other when things aren’t going to plan.

At the end of the day, those ‘every day’ experiences like hypos, carb counting, finger prick tests, hypers, tiredness like no other – they’re all things that people who aren’t in the club can’t understand in the way we do.

I recently spoke at an event in Sheffield where GPs had come to learn more about diabetes and I made the point that over 99.9% of the time someone has diabetes, they’re managing it all by themselves.  It’s down to us to become experts in our own right and education and peer support are the foundations that we build on.

I went over 10 years without speaking to another person who was the same as me.  Ten years of never speaking to another person who knew how sickening it can be to have a hypo.  Ten years of not really understanding how fattier food can affect my BG levels.  Ten years without feeling like anyone else understood what I was going through.

It’s incredible to look back on that today and feel so much more secure in how to deal with whatever diabetes throws at me.  It can be incredibly nerve wracking to open up to people about your diabetes, but I can promise you the benefits you’ll get will be incredible.

If you’re on Twitter, you can look me up @BroomOwl and if you’re in the Sheffield area, I chair the Sheffield Group of Diabetes UK who meet monthly.  More details about what we do and how we can support you are on our website

Happy Diabetes Week