More than Diabetes, 4 minutes of Marvin - DBlog Week Day 5

Today is the last day of Diabetes Blog Week, and the prompt is an invition to share something non-diabetes related - "an interest, hobby, passion, something that is YOU... because there is more to life than just diabetes!". Huge thanks again to Karen at Bittersweet for organising such an inspiring week.

I read the topic list at the beginning of the week and really had no idea where to go with this one. But as I wandered out this morning, in glorious sunshine with our wonderful, affectionate, friendly, beautiful dog, I could think of nothing better. Huge apologies to anyone whose toes are already curling in that someone-over-sharing-pictures-of-their-children-on-Facebook way. But here it is...

We got Marvin a little over a year ago, and he has had such a massively positive impact on all of our lives. He's a medium sized cross-breed, mixing Clumber Spaniel with Miniature Poodle, to make a 'Clumberdoodle'. He motivates me to get out and about every single day - any time I meet my notional step goal target for the day is down mostly to Marvin. He is playful and affectionate, but not annoyingly so. He likes a snooze and loves people, children, and other dogs. He knows just when to snuggle-in, if you are feeling frustrated or down, and as our youngest pointed out not so long ago, having Marvin ensures that each of us will laugh out loud at least once every, single, day.

It is almost impossible now to remember life without him.

And since a picture is worth a thousand words, and a video is made up of thousands of pictures viewed one after another to create the illusion of movement*, I have chosen to produce a short video to give you 4 minutes of Marvin. Enjoy!

* One for the Wittertainees there.

For other posts on this topic, check out the Day 5 link list.

4 minutes of Marvin

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

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

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

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

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

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

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

It's a toxic environment.

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

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

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

But this is absolutely not the case.

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

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

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

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

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

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

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

The Blame Game - DBlog Week Day 3

Today's topic in Karen at Bitter-Sweet's fabulous festival of Diabetes Blogging is entitled 'The Blame Game' - Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another. And sometimes the way the doctor talks to you can leave you feeling like you’re at fault. Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger... For other posts on this topic, browse the day 3 link list.


While I have been on the receiving end of a handful of less than ideal conversations with clinicians and healthcare professionals over the years, those were not the ones that first came to mind when I read this topic prompt.

There is a person who seems to jump on my back and berate me for lapses in judgement and effort far, far more often than any Dr or nurse ever has. Someone who feeds me with visions of horrendous complications that might be in store. Who raises a cynical eyebrow over my dose estimation of a meal, or timing of a bolus. Who reminds me of eveything I missed, every emerging pattern that I didn't spot until reaching for the hypo treatment. Who rolls their eyes over some of my food choices, making muttering noises about it "really not being a brilliant idea". Someone who is all too quick to tell me that my best isn't good enough, and that I may as well just give up.

And the worst thing about them? The very worst thing is their timing.

They choose the times when I am feeling at my most vulnerable. My weakest. Where my diabetes is behaving erratically, and I am struggling more than usual to aim for the tiny target range that we aspire to. That narrow way that is the best hope we have to protect against long-term complications. They choose the periods when either repeated high or low blood glucose have left me feeling drained, or scared, or angry and irritable. Uncertain as to what to do next, which of the many factors might need tweaking. And it is at those moments - when I could really do with some support, that they choose to get on my case.

I've tried to speak to them about it. We have had long conversations and have agreed that their behaviour really isn't kind and isn't helpful. I felt like they really genuinely were going to try. But all too soon they fell back into their old habits. Next time... next time they promise they will try harder. But will they? Can they?

If they weren't so close to me I would have left them behind. If they weren't so important to me I would have cut ties. Moved on. Freed myself from the negativity that comes when I can least cope with it.

But it's difficult. It's difficult when they are hurting too. When they are struggling.

It's difficult when they are, in fact, me.

So we embrace one another again. We look ourselves in the eye. And commit to being kinder the next time. To support each other, no matter what. To love. To listen. To understand that we are both doing what we can. To know that we will make it through together.

The Cost of a Chronic Illness - DBlog Week Day 2

Today is Day 2 of 2017's Diabetes Blog Week and today's topic is entitled The Cost of a Chronic Illness. For a wider perspective on this topic head over to the Day 2 link list.

I have read a lot of anguish, rage and despair from people living with diabetes in the US in recent months as insulin manufacturers increase prices again and again. The costs involved are simply eye watering - the latest 8% price hike by Eli Lilly earlier this month puts a single vial of Humalog at approximately £213. That's a 290% price increase over the last decade. I mean... really?!?.

Having read some powerful early posts from Aussie bloggers on today's topic (here, here and here) I know that diabetes can be an expensive business 'down under' too.

Not to mention the many, many parts of the world where access to insulin is even more difficult and costly. Where type 1 diabetes is still potentially a death sentence, rather than an irritating, but generally relatively manageable condition. I am so pleased that charities such as T1 International work so tirelessly to support people living with type 1 diabetes anywhere in the world where insulin and test strips are unaffordable, unavailable, or both.

I feel extraordinarily lucky to be living in the UK, where I can receive world-leading diabetes care free at the point of delivery.

Today's topic drew this famous National Health Service (NHS) quotation to mind:

“Illness is neither an indulgence for which people have to pay, nor an offence for which they should be penalised, but a misfortune, the cost of which should be shared by the community”

Aneurin Bevan - founder of the NHS

What an amazing sentiment that is. How far removed from so much of what we see going on in the world today.

And it makes me realise why we in the UK are so proud of the NHS, and why we fight so hard to protect it, with all its frustrations, foibles and oddities.

There are a lot of people who are profoundly worried about the NHS in the UK at the moment. Funding is a real challenge, and has been squeezed and reduced in real terms for years. With an ageing population often with more and complex combinations of illness providing ever-increasing demand. Our current government (who look likely to be elected to a further term in a few weeks) seem perilously likely to be the sort of people who might change the NHS out of all recognition at any moment - breaking it up, selling parts of it off, introducing co-payment and/or insurance-based models under the guise of 'saving it'.

4 out of 5
My experience in helping to put together the NICE Guidelines for adults with type 1 diabetes in the UK gives me much food for thought here too. But unfortunately, not much in the way of answers of brilliant ideas. In the diabetes online community there is often frustration vented about the difficulties in accessing the latest shiny technology - which begins to sound like petulant toddler foot-stamping in comparison to the challenges faces in other places in the world. I am one of a relatively small number of people in the UK who self-fund continuous glucose sensors. I only manage to cover around half of the year, but it helps me enormously. My insulin pump, cannulas, test strips, insulin, appointments, blood tests, eye examinations, toe tickles and all the rest are fully funded by the NHS, either because they just are (imagine that!) or because I meet the NICE criteria which has demonstrated that they will be 'cost effective' for me. They will provide good use of NHS funds. The numbers have been crunched, the research examined, and the right ticks are in the right boxes.

This makes me feel simultaneously extremely lucky and, if I am honest, really quite guilty when I hear about the monetary investment you, dear reader, may be making somewhere else in the world. I know how much I wince when I buy a couple of sensors.

But these ongoing every-day 'maintenance' costs of living with Type 1 to the NHS are only the tip of the iceberg. A mere drop in the storming, swirling financial ocean.

One uncomfortable fact is that of the entire budget spent on diabetes in the UK fully 80% of it goes on the other stuff that we'd rather not think about. The costs of medication, appointments, pump and consumables only make up a trifling £1 out of every £5 the NHS spends on diabetes. The really, REALLY expensive stuff, is when diabetes nasties come knocking at the door. When people develop problems with eyes, nerves, kidneys, feet or heart. Admissions, surgery, follow-up care. And if the financial cost of those things were not bad enough - they also come with a huge human cost too.

And modern medicine is getting so good at treating type 1 diabetes these days that our life expectancy is closing on people with functioning pancreases. Giving us all the more time to potentially develop the long-term complications that cost so much.

So it is down to us, who live with long term condition like diabetes in the UK to honour the investment the NHS so freely makes in us. To do everything in our power to live well with diabetes and avoid complications if we possibly can. To take up the offered (FREE!) education courses to improve our self-management. To attend our annual screening appointments which cost us nothing but a few minutes of our time. To learn as much as we can, and to keep chipping away at our results to try to improve our numbers where we can. To aim to avoid complications if it is within our power to do so.

To live long, healthy lives alongside type 1 diabetes.

Diabetes and the Unexpected - DBlog Week Day 1

This week sees the eighth Diabetes Blog Week - an amazing festival of healthcare blogging organised by the wonderful Karen of Bittersweet Diabetes. Wow! Eight years - that's quite an achievement. I've taken part a few times before, and it is always an inspiring week seeing so many writers coordinated to post on the same topic each day during the week.

Today's topic is 'Diabetes and the Unexpected, so without further ado, here are my top three:

1. Overnight unexpectedness
You know the ones... You've not run a marathon after lights out. You've scrupulously counted your evening meal. You've not had a skinful of booze. Your doses and basal are properly tweaked. Your Insulin on Board is right down at zero. Everything was fine last night. And the night before. But not tonight... Tonight is an unexpectedly-needing-far-far-less-insulin-than-normal night. Whatever 'normal' happens to mean for you right now. But you know what? It's not you. Not this time.

Closed loop studies have shown a big variation in overnight insulin requirement. So keep trying, keep dodging all the lows you can, with all the preventative strategies for lows you know (especially the overnight ones)... But this one? This one is just down to your diabetes being annoying. Don't beat yourself up about it.

2. Unexpectedly nailing it
Mostly diabetes just potters along in the background for most of us. Like irritating lift music. Frustrating, relentless, occasionally intrusive, but for the most part... just there. Absorbed into the everyday rhythm of things. Sometimes it barges right into centre stage of course. Really causing havoc and dominating everything, emotionally and physically. But not for the most part. Not in my experience. So I always find it rather unexpected when this neverending gently annoying part of my life causes me a genuine sudden burst of happiness. Like a golfer sinking a hole in one. A runner smashing a PB after injury or in difficult conditions. A fan watching their team win the cup, or league, or the local derby.

So the next time you take on your food nemesis* SWAG bolus and absolutely nail it give yourself a moment. Celebrate your amazing skill, intuition and ninja-bolusing skills. Look around and enjoy the view from up there. Store it up and remember it the next time your diabetes throws a curve ball with something you have eaten without problems a hundred times before. Smile a big smile and bask in the glory of your magnificence.

* Mine is probably buffet party food, though evenings at an all-you-can-eat restaurant run that a close second. Yours might be pizza, or pasta. To be honest I gave up on breakfast cereal a long time ago, or that would be right up there.

3. Unexpected connections
I was diagnosed with type 1 over 25 years ago. Everything about it was unexpected at the time. I remember knowing absolutely nothing about what diabetes was, and how it would change so many things about my life. Wondering whether I could eat honey, instead of sugar, because... well... honey was natural right? But what I could never have anticipated - the most unexpected thing of all was... well... not to put too fine a point on it - you lot.

The connections that it would bring. The people I would meet in real life and feel an instant bond with. The sense of shared struggle. The feeling of a support network that stretches, quite literally, all around the world. The way it would help me to empathise with others living with long term conditions. The way these connections would help me to grow as a person. To perhaps become more than I would have been without it. Don't get me wrong, I'm not one of those "I love having diabetes, it has been the making of me" people. But if there is a silver lining to living with this infuriating, illogical, relentless, draining, and occasionally debilitating condition, then you guys are certainly it.

And Diabetes Blog Week is a brilliant reminder of that.

Thanks for reading!

There are lots more posts on this on the Diabetes Blog Week link list.

Looking back - DBlog Week Day 7

And so another Diabetes Blog Week draws to a close. It has been great to take part again and I have been really touched by all the encouraging comments and feedback. One of the best things about #DBlogWeek for me is that feeling of connection to a wider global community, the chance to find new faces and voices and also to see how some familiar faces respond to the weekly prompts.

Today's topic: As we wrap up another Diabetes Blog Week, let’s share a few of our favorite things from the week. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or comment left on your blog that made you smile. Anything you liked is worth sharing!

There are so many posts that I loved reading that I can't list them all. Here are just a few off the top of my head:

Day 1 - Change the world. Kev at Circles of Blue gets cross

Day 2 - Poetry Tuesday. Either Grumpy's limerick or Kim's haiku

Day 3 - Scott Strange's amazing post about depression

Day 4 - Could have been any of Pumplette's posts (ably edited by Annie). I loved the dialogue between you two!

Day 5 - Jules embraces change and mentions boobs. What's not to like?

Day 6 - Sara from Moments of Wonderful shares 12 hours of a Saturday.

And there are so many more I could have listed. I know if I wrote this post in another 20 minutes I'd probably write a different list entirely.

As ever, massive thanks go to Karen at Bitter-Sweet for making the whole thing possible.

Them Ole Diabetes Blues - DBlog Week Day 6

Saturday snapshot for day 6 of Diabetes Blog Week.

Guitar. Check. Amp. Check. BG level. Check. Ready to rock diabetes under the table!

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.

When things are going wrong - DBlog Week Day 4

Diabetes Blog Week Day 4 Mantras and More. Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day. Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost? Maybe we've done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)

Living with diabetes can be a very lonely struggle at times. When it's behaving and doing more or less as it's told it's not too bad. But when you are struggling to make sense of it from day to day and when everything you try just results in more chaos and apparent BG randomness it can be very difficult to catch your breath. Erratic blood glucose levels are physically and emotionally draining. Often compounded by a little nagging voice in your head whispering about the possible damage you might be doing, and what troubles these levels may be storing up for the future.

It's not easy to get through those days, but I think for me it's a combination of grim determination, digging deep and just carrying on carrying on.

As for mantras and words of wisdom? I'm afraid I can't offer any of my own. So instead, unashamedly, I am going to cheat. Here are some from other people:

"It's not about how hard you hit. It is about how hard you can get hit and keep moving forward" (Rocky Balboa via Grumpy Pumper).

"Yes, you can." (sorry Mr Obama).

"You play the hand you're dealt, and you play it to the best of your ability. The rest is irrelevant." (or some other variation of it).

And of course... The very first thing that popped into my head when I read the topic. Always remember:

"You can do this" (Thanks Kim - youcandothisproject.com)

Ups and Downs - DBlog Week Day 3

It's day 3 of Diabetes Blog Week 2014 (Thanks Karen!). May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

I'm a bit late posting on today's topic which has given me a chance to browse around a few posts on the link list. One of the strengths of the Diabetes Online Community is the sense of shared experience. Shared struggle. I have read some heartbreaking posts today, but I've also read many that have just made me think, "Yup! Me too." What might have been a difficult topic has actually been hugely encouraging.

The emotional effort of living with a long term condition cannot be underestimated. It is really great to see its importance increasingly recognised in recent years both by clinics, HCPs and by patients themselves.

Like many people I am mostly fine most of the time. But I think everyone who lives with diabetes for any length of time will be familiar with those days when it just seems too much to carry. The weight of it unbearable. The prospect of managing another day with it almost impossible.

So what drags me down? What is my particular trigger?

Well you don't have to read many posts or tweets of mine before I'm moaning about chasing the moving goalposts.

Here's an example. Three consecutive Wednesdays. Each start with a breakfast of 30-35g carbs (2 slices of the same brand of bread, toasted). Then a trip to the gym - 25 minute medium pace run and 10 minutes light weights/core. Lunch is two more slices of the same bread as a sandwich and a medium-sized apple. Evening meal will contain around 50-60g carbs and is likely to be one of 5-10 tried and tested family faves. There is just enough variation to keep me sane, but a clear attempt to reduce the huge number of variables involved so that doses/approaches that have been carefully tweaked *should* give reasonable results. Should being the operative word. Here's what happened:

The eagle-eyed among you may have spotted that the second Wednesday didn't quite go to plan. The first was not too shabby at all, while the third was just bewilderingly level.

And yet did pretty much the same things, in the same way.

I put just the same amount of effort in. I played my part. But for no discernible reason my basal requirement altered dramatically around Wednesday #2. So then it's back to basal tweaking for the next 5-6 days (often much longer) with all the 'out of range' results and uncertainty that entails until yesterday when it began to fall back into place. 

Tomorrow? Who knows!

I've been chasing these changes back and forth for months. For years actually. Some times I get some stability for several weeks on the trot. But not often. And I recognise that I am incredibly lucky to have it so good.

But this is the grind for me. The thing that can wear me down. The actual doing of the routine is not so bad. Some routine, occasional special occasions/treats/holidays, then back to routine. That always seems doable.

But putting in all the effort and getting a BG roller coaster back seems less than fair. Not exactly a reward for any self-control I may have mustered. And every time the goalposts chase off into the distance it's more effort, more tweaking, more testing. And all the while, more out of range results and the spectre of diabetes-related nasties prowling around the edges of my consciousness.

But... And it's a BIG but...

Every time I rant about the frustration of having to fix something I haven't broken - EVERY time - someone will be there, day or night, from one corner of the world or another, to offer support, sympathy, smiles.

This is the beauty of the DOC. We are stronger together.

Poem: Helpful comments - DBlog Week Day 2

Today's DBlog Week challenge is to write a post as a poem. Here goes...

Helpful comments

Was it because
You had too many cakes?
Or ate too many sweets,
Is that what it takes?

My Grandmother had it
And she lost her eyes.
My Uncle's feet fell off
To everyone's surprise.

Can you eat that?
Can you eat that?
Can you really eat that?
Can you eat that?
Should you eat that?
You shouldn't eat that!

Injecting yourself?
I don't think I could
I'd rather die...
(Well actually, you would!)

Increased risk
Of heart attack, stroke,
Kidney failure, blindness,
Body broke.

What was this high from?
And why there that low?
You simply must
Try harder, you know.

Can you eat that?
Can you eat that?
Can you really eat that?
Can you eat that?
Should you eat that?
You shouldn't eat that!

Thanks for your help folks,
But can I suggest
You think before speaking
We're trying our best.

Change the world - DBlog Week Day 1

Thanks to Karen Graffeo this week is the 5th annual Diabetes Blog Week.

Today's topic is 'Change the world'.
Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

Hmmmm... Well I'd usually bang on about the power of peer support and the DOC, but since my last post was about that very thing I've decided to take this topic as more of a fantasy 'what if anything were possible' type thing.

So if it's not a cure and diabetes is continuing and if I could change anything what would I choose..?

I wish there was more honesty and fairness. Specifically when it comes to medical research and product development.

Perhaps I have got this wrong. Maybe I'm just being too jaded and cynical. I am absolutely sure that most people who undertake research are paragons of honesty and integrity, but I'm afraid I do worry about the impartiality of some research studies into new treatments which are (inevitably) funded by the companies who have invested thousands in research and development and now need to turn a profit. Small, commonplace things like studies having a 'run-in' period where carefully screened participants get to try the therapy before the trial actually starts so that people who don't get on with it don't take part. Hey-presto, when the trial data are collected - almost no drop-outs and hardly any side effects reported. Results being extrapolated and amplified with 'mathematically modelled' outcomes. If x changes to y then the model suggests that umpty bazillion people will be 50% better off (rather than simply counting the number of events that did or didn't actually happen in the sample population). Data meta-analysed to within an inch of its life and suddenly the conclusions reached 12 months ago that there was not very much benefit, get republished with a handful of results added to suddenly show something startlingly different.

The problem for me is that it actually takes quite a lot of effort to go into the detail. Part of my work with NICE as a patient representative on the Type 1 Adults Guideline Development Group has involved reading and reviewing many more research papers and results than I would ever have normally. It soon became clear to me that behind the confident assertions of the 'conclusions' by the authors of some papers there's a sort of hollow flimsiness to the whole thing. And in these days of 'evidence based' medicine this gives me more than a little uneasiness. Some major decisions are taken about what is or isn't an appropriate way of treating people are taken on the basis of medical research results some of which - to my inexperienced eye - looks rather less than rock solid. But who does that? NICE are pretty good at trying to filter though the mire most of the time, but so many decision makers, politicians and journalists seem only interested in the headline.

Now I'm not quite in the 'the whole thing is a complete Big Pharma Conspiracy' camp, but I do wish we lived in a world where I didn't have to worry about the motivations and financial background to all this. Where I didn't have to look for the agenda behind the research. Where new treatments and therapies and approaches were developed, adopted or dropped on the basis of what actually worked for people rather than what made the most money for the companies involved.

I realise that I am extaordinarily lucky to live in a country with an organisation as amazing as the NHS to underpin my healthcare, but there is only so much money to go around and I would love it if every single penny of that was being spent in the very best ways on the most effective treatments, interventions and (shock horror!) non-drug based methods like, er, you know, type 2s doing rather better when they eat fewer carbs.

Oh... and if I ruled the world Bakewell Tart would have absolutely no effect on blood glucose levels too.

DBlog Week Day 7 : My hero(es) - too many to mention

For the final day of Diabetes Blog Week the prompt is to write about your Diabetic Hero, "anyone you’d like to recognize or admire...".

OK, so I've changed my mind *lots* of times about who I should write about. First I thought about some of those stand-out members of the Diabetes Online Community whose blogs, posts, insight, brutal honesty, encouragement and downright laugh-out-loud hilarity that have made such a difference to my experience of living with diabetes - even the ones I have only 'met' this week.
[Apologies to the (many) people not linked there - that sentence was getting stupidly long. You know who you are.]

Next I felt that I should acknowledge the members of the diabetes forums which have become my immediate go-to whenever I have a problem that is grinding me down, a pattern I can't spot or just need to rant and rage about the overwhelming stupidity and inconsistency of D sometimes. The folks here and here are without question the first place I go whenever I have something that needs fixing, discussing or could do with some ideas bounced around with my control. I find fascinating research papers linked. Thorny issues debated and discussed. New tactics and approaches for improving BG control. For upwards of 15 years I barely spoke to another person with diabetes, aside from maybe one or two 'friends of friends' I bumped into, whose experience of D seemed to be nothing like mine. Before I joined those forums I had almost no understanding of type 2 diabetes. I am so glad that that has changed.

I considered acknowledging *everyone* who follows @everydayupsdwns on Twitter. I have lost count of the times my day has been turned around after I've posted a "Blaaaaaaaah! Diabetes is rubbish..." tweet only to receive an instant 140 characters of encouragement from folks in all corners of the globe, day or night.

Too many options. Too many people that I would miss out, whoever I chose.

In the end, the answer was so blindingly obvious I wonder why I didn't think of it immediately. I've thought it often enough! In the end it has little to do with me and my experience. In the end it is a group of people who are often overlooked in the whole diabetes equation. And yet they are some of the most powerful advocates. Some of the most brilliant managers of this trickiest of conditions. It is simply this:

Parents of Children with Diabetes. All of them.

I was diagnosed in early adulthood (aged 21), but I know some of the psychological impact it had on my parents. My Mum still blames herself and wonders what she did wrong (nothing Mum, really, honestly, truly - nothing). She also still worries which of the grandchildren "might get it now". From the start my family were a huge support and encouragement in coming to terms with my diagnosis. By and large though, I was responsible for my own care.

I am now privileged to have two beautiful, inspiring, ferociously clever, teenage daughters. I have watched them grow and blossom. Become amazing people. I know the nagging parental worries connected with anything they ever do. Wanting the very best for them, all the time. I know the emotional wrench of any illness and discomfort they experience. The agony and ecstasy considering of what their future may hold.

I know how hard it is to play at being your own pancreas. I know how much of the time the 'rules' make little sense. How hard to have to be on yourself to keep things in control. How some days the weight of possible complications can feel like an unbearable weight to carry. How darned difficult the day to day can be - even when you have your own body senses giving you little tiny clues about levels all the time.

I cannot imagine what it takes to play pancreas for your child. All of the difficulty. None of the warning-sign sensory feedback. And all the parental concern about being too harsh/not harsh enough/future health and well-being into the bargain.

No doubt. All you guys are complete and utter heroes.

You take my breath away.

DBlog Week Day 6 : Compare and contrast

Saturday snapshot for day 6 of Diabetes Blog Week makes me think about the photo I posted this time last year.

At that stage I was still unsure how I felt about the prospect of an insulin pump - Would it help? What would it be like? How would it feel to live something attached 24 hours a day? This morning I was due a set change for Artoo. A year is a long time.

DBlog Week Day 5 : Setting the record straight

Today's DBlog Week topic asks "What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?". Fortunately Karen seems to know how much we love the sound of our own typing: "Have more than one thing you wish people knew? Go ahead and tell us everything.". Well, since you asked...

Journalists
There is more than one type of diabetes. Actually there are *lots* of different sorts, and some of the 'types' are really just umbrella terms for a multitude of different, but fairly closely related conditions. This next bit probably bears saying slowly, because it seems that you have difficulty grasping it: Diabetes. Is. Not. Caused. By. Eating. Sweets. There, that wasn't so hard was it? In general terms you probably only really need to think about type 1 (around 10% of the diabetic population) which is an auto-immune condition where the body destroys it's own insulin-producing beta cells. Nobody knows what causes type 1 diabetes to develop. No-one. On the other hand there is type 2 diabetes, where the proper metabolism of carbohydrate begins to fail. Type 2 Diabetes makes up nearly 90% of the diabetic population and last time I looked *nobody really knows* what triggers its development either. Nobody. There does seem to be a genetic link (so you are more likely to develop it if a close family member already has it). It is also more common in certain ethnic groups. Additionally people who carry more weight seem to be more at risk of developing type 2. Let me say that again - AT RISK. This is not the same as cause. Perhaps 15% of people diagnosed with type 2 are normal weight or under weight at diagnosis. And bear in mind that perhaps 90% of the obese and overweight population do NOT have diabetes. Let's go over what we learned earlier - eating sweets does *not* cause diabetes. If a person is overweight it would be wise for them to consult their doctor to assess their risk of diabetes. The extra weight may be an indication that their metabolism is struggling to efficiently metabolise carbs - but please, please, please stop repeating that diabetes is a 'lifestyle' disease 'caused' by eating sweets.

Scriptwriters
This is getting silly. Please. For the love glittery cupcake-eating unicorns, will you PLEASE just have a two minute conversation with a person with diabetes the next time you have a Brilliant Idea about using insulin-dependent diabetes as a way to spice up your flagging movie/action adventure/medical drama. It really is Not. That. Hard! Time after time you get it wrong at the most basic level. The problem is you get things so messed up so often that 'normal' people will be beginning to think you have it right. You know there's this time-critical thing (a hypo) where the person can be minutes from oblivion. And you know that diabetes has to do with insulin, which is hard to come by on a jet plane struggling to make a landing, while Denzel Washington and Bruce Willis swap oily vests and wisecracks as they wrestle the deranged and inexplicably English-accented baddie into submission. It all looks ideal... How will our rosy-cheeked cherubic child make it through as she plunges into a hypo when the only insulin on board was smashed under the nasty Brit's suspiciously shiny shoe. STOP! Insulin will KILL her. If she is mid-hypo what she need is a little something from the kitchen. Hypo is *low* blood glucose. All she needs is a swig or two of Coke. We are very sorry that this is rather inconvenient in dramatic terms, but there you are. If she misses an insulin shot? Well unless she's on a pump (let's not go there right now) the chances are she has got *hours* - especially if she doesn't stuff her face. She might get a bit grumpy. Not very Hollywood, but I'm afraid it's all you've got.

GPs and NHS beancounters
There are all sorts of people. Tall ones, short ones, loud ones, quiet ones. Some are really clever, others not so much. A mixture of all of these people will be unfortunate enough to develop type 2 diabetes. Now given this bewildering variety, don't you think it is perhaps likely that one identical approach will not work perfectly for everyone. Diabetes, perhaps more than any other chronic condition will be affected by the behaviours of the patient. Some people will be happy to take your advice on what foods they should be eating to keep their blood glucose levels under control. You will give them advice based on your knowledge and understanding. What you believe happens 'on average'. The problem is, we are not talking about 'average'. We are talking about individuals. When a patient comes to you with a desire to test their blood glucose levels using an effective framework, and to use those test results to establish a varied and nutritious diet which does not spike their BGs please consider their future health. 80% of the NHS budget for diabetes care goes on treating preventable complications. Once a patient has spent a few months building up a picture of BG friendly foods, testing can drop back to a much lower maintenance level. There is no 'one size fits all'. Don't mistakenly jump to a conclusion of 'non-compliance'. If you are advocating a diet with lots of 'healthy' carbs for t2 patients, their problem might be *too much* compliance. The only way for a person to discover what foods, and quantities they can eat (and at what time of day) is with a meter. Not everyone will want to put the work in, but don't just automatically deny the means for people to control their diabetes.

80% of costs on preventable complications are absolutely appalling stats. Perhaps the time has come, at last, to rethink the high-carb/no-test approach if these are the results you are getting. I'll put it more simply for the hard of thinking: Give. Type. Two. Diabetics. Test. Strips. And. A. Copy. Of. Jennifers. Advice. Then. Support. Them. In. Keeping. Their. Diet. Balanced. And. BG. Friendly.

DBlog Week Day 4 : Things we'd like to see

Today's DBlog Week topic is all about fantasy future D gadgetry. If we could have any dream diabetes device, what would it be?

I had a crazy notion to write a post about a futuristic BG meter that was actually accurate to within 5% of a lab reading 100% of the time. Or maybe a CGM that was actually affordable for anyone that wanted one. I even considered writing about a pump that was constructed with such inexplicable ingenuity that it *didn't* have to bleep and warble about a temporary basal rate Every. Single. Hour. Which might be useful for anyone that ever needed to set a TBR to run overnight and values their sleep. But no. Let's at least keep this within the bounds of the possible.

I'm not even going to write about the cure. That's only a mere ten years away after all (well it always has been, ever since I was diagnosed in 1991, so I don't see why we should start changing that now).

What I would like to see (and I suspect some white-coated boffin in a gleaming laboratory is already working on this very thing) is an intelligent insulin. I can remember having conversations with people when I was first diagnosed who would say things like, 'Ooooh, I could never inject myself!'.

Like that was the hard part.

Let's face it after the first three or four hundred - the injections are a doddle. All the other stuff. The adjustment. The guessing games. The carb counting. The unexpected 'helping hand' given by the liver. The moving goalposts. The messy, confusing, illogical variability of it all. That's what I want rid of. Heck, I don't even mind carrying on with a fingerstick BG test every so often just to make sure things are toddling along OK.

So in my dream-world of the future, I just need to inject a whack of IntelligentInsulin^{TM pending} every day (it could be every few days, but I don't want to push it).

Once absorbed the IntelligentInsulin just sloshes around in my bloodstream bound-up and inert. Ready and waiting. I chance upon a sweet and sickly cupcake. As soon as I start eating it, and my BG begins to rise the IntelligentInsulin senses the change in my levels and immediately begins to work (none of this '4 hour profile' nonsense). Once the carbs are dealt with, IntelligentInsulin stops and waits again. Very tiny amounts of it working every so often to counter glucose released from my liver keeping my levels rock steady. If my BG falls below 4.5 (81), IntelligentInsulin stops working entirely and allows my liver a little room to top things up into a safe zone. When I eat a massive fat-laden uber-carb pizza-with-extra-dough-balls-and-garlic-bread IntelligentInsulin effortlessly matches the stop-start absorption of the food. Even when I have an entire cream-filled Pavlova meringue for dessert. Which is a neat trick since I have a horrendous cold at the time. And have not been to the gym for 2 weeks.

All I have to do to manage my diabetes is keep my level of circulating IntelligentInsulin topped up with an occasional injection, and take an occasional BG test to check things are OK. And that is all.

Welcome to the future ladies and gentlemen.

DBlog Week Day 3 : A little less of that please

Today's Diabetes Blog Week topic is 'What is the one thing you could do better'. I suspect I'm not the only one to be thinking, 'What... just one?'. Ask us what we do brilliantly and many of us will struggle. Ask us where we need to improve and suddenly a hundred things are jostling for pole position.

For the last two or three years I've been working working working... Trying to improve things. Trying to fix things. Reading and learning and experimenting. I have rarely kept better records. I have never tried so hard in the attempt to keep my BGs in range for as much of the time as I possibly can. But there is an aspect of my diabetes that I have made no progress on whatsoever. None. And it really needs fixing.

I still get too grumpy about out of range results. Every time.

In the old days I would get frustrated with diabetes' randomness. I still like to rage at the randomness every now and then, for old time's sake, but these days I am more likely to blame myself. I suppose this is a genuine downside of putting extra effort into controlling my diabetes. Results that I would not have batted an eye at a few years back now cloud my mind with 'Why's' and What if's'.

I still beat myself up.

All the time.

'Gah! I got the carb count of that meal waaaay off'
or 'I *knew* the fat in that would slow down the carbs'
or 'Stupid, stupid, stupid. I massively overestimated the fat-based carb slowdown and now I'm high'
or 'Low after the gym. Again!'
or 'High after the gym... Shouldn't have had those extra carbs'

These days, with Artoo I have even more ammunition to beat myself up with.

'Not enough of a TBR...'
'Too much of a TBR...'
'Should have/should not have used that square wave/dual wave/duration/split/timing...' (delete as applicable)

Carb counting? Exercise adjustment? Basal profiles? Food choices? Snacking?

In reality it is all of these things and none of these things that need improvement. All the time. I am reminded of a brilliant post by Kim of textingmypancreas entitled 'What we aim for'. We put in all this work. We make all this effort in the hope that nothing will happen. Nothing, as Kim points out, is a pretty lousy reward.

Occasionally I have had brief moments where my meter seemed to have slipped into some parallel universe of BG nirvana and almost refused to give me an out of range result however much I misbehaved. My problem is that once I had glimpsed that I began to want it all the time. Even though I know deep down that is impossible. Diabetes is too fickle, too variable. The goalposts move too often and chasing down the new 'normal' takes time and involves 'out of range' information to base decisions on.

Jane is forever encouraging me to relax a bit and give myself a break. As with so many things in my life I really need to listen to her.

DBlog Week Day 2 : One good thing

When I looked down the list of topics for DBlog Week I knew this one was going to give me some trouble... Something about diabetes that I nearly always do well? Talk about a hypodermic in a haystack. Tomorrow's topic of something I need to improve on is noooooo trouble at all. How many would you like? How long have you got? But something diabetes-related that I do well? Hmmmmm...

I nearly wimped out and posted about how brilliantly supportive and understanding my family is (however grumpy I get). Or how amazing the information, hints and tips are that come flooding from all corners of the DOC at the first keystroke of a 'Bah! Having a rubbish day today' tweet. But then it struck me as I fished a fluffy fruit pastille out of my pocket to counter what might (or might not) have been a slight dip in BGs. There is a little thing that I have done ridiculously well ever since I was diagnosed. Every day! It's so much a part of my life that I no longer even think of it, but occasionally when it is mentioned to non-D types I get met with a raised eyebrow and just a hint of "Well that's a bit weird" behind the eyes.

I am amazing at carrying hypo treatments around. I don't think I've gone anywhere in the last 20-odd years without pockets full of goodies 'just in case'. In sweetie-carrying terms I am way more reliable than a Werthers Grandfather (who only managed a measly 15 years). I have treatments. I have backups. Occasionally I have backups of my backups.

Just after I was diagnosed I was advised that I'd have to carry something sweet on me at all times. I found a little tin in a giftshop that had a nice vintage-label design printed on the lid. Initially I carried dextro-energy tabs in it, but they were vile and I discovered that it was just big enough to carry three of four sachets of sugar - the kind you get in cafés and coffee houses so took to carrying them instead. For many years I siezed hypos as an opportunity to have a funsized chocolate bar (even after I knew that chocolate was nothing like fast-acting enough really). I would have chocolate in my coat pocket and the tin in my jeans. The tin became my 'last line of defence'. If ever I was anywhere and the shops were shut or there was just nothing around I would at least have something that might keep me going. I began to develop heirarchy of treatments based on their suitability to the time of year. Skittles and Jelly Babies come in small bags in some funsize assortments and are virtually indestructible in a jeans pocket during the Summer - even in 80% humidity and scorching temperatures on a brief stay in Singapore.

These days my weapon of choice in tackling hypos is certainly Fruit Pastilles. A whjole pack is just a tiny bit too long until you have had the first two or three but I like to think the extra strain that puts on the tube gives it a lovable 'crumpled' quality. And the hypo-addled T2 came across and helped out a few months back didn't seem to mind. (I was able to give her a spare pack that was acting as the backup to my backup).

And the tin still goes with me. Everywhere. There's not a scrap of paint on it now, of course. It has been polished to a gleaming shine by thousands of hours in my pocket, and is just very slightly dented.

DBlog Week Day 1 : Really? Me too!

Well it's that time of year again! Karen over at Bitter~Sweet has been busy organising the third annual Diabetes Blog Week. Today's topic is 'Find a friend' - a chance to point some of you in the direction of some corners of the DOC that perhaps you haven't yet discovered.

My choice was easy really. It's just not because Dave seems to be an all-round good egg. It's not just because he writes posts that make me smile and think, "Really? Me too!". It's not just because Dave is always to be seen encouraging others on Twitter, offering cheery advice and support. It's a connection which is more specifically a fluke of timing. It's an example of how the DOC works in making you feel less alone. Less isolated. More supported - even by people you have never met face to face.

Dave and I first bumped into each other via mutual Twitter contact and blogger BigPurpleDuck (Hi Emma!). She was enthusiatically recommending insulin pump therapy to me at the time and for a long time I was stubbornly resisting. It transpired that Dave was similarly unsure about the whole pump thing, and it was good (at that stage) to feel like I wasn't the only luddite in town. We'd been for diagnosed roughly the same amount of time, I think, and had many genuinely laugh-out-loud funny exchanges of tweets about the merits (or otherwise) of turning to the "dark side" of TeamPump.

Even though we were not really watching what each other were doing particularly closely, and just following our own clinic appointment timescales at different ends of the country we ended up, through an extraordinary fluke of timing, beginning on insulin pumps within a few days of each other. Which meant we could also compare notes about those first few weeks of the experience.

I'm not even sure Dave is aware of Diabetes Blog Week and don't think he is participating, but pop on over to The Tangerine Diabetic and say 'Hi'.

DBlog Week Day 7 : Looking back

Topic: What have we learned this week?

I guess most of the posts today will share a common theme - a celebration of the online community of diabetics, or to give it it's full title the Awesome DOC. 

I've discovered a lots of new blogs this week that I will enjoy revisiting. I've been very encouraged by the lovely comments and kind words that people have added to our posts. 

What will stick in my mind most of all I suppose, is the great DBlog Week Blogger Meltdown of 2011. You can learn a lot about an organisation or group by watching what happens when things don't go so smoothly. When Blogger went down during Thursday and Friday it was fantastic to see bloggers on another popular blogging platform offering a helping hand, and others offering sympathy and support. 

In a way this is an illustration of the best in our community - people bound together by a common thread freely offering support and practical help to others. Not just to those exactly like themselves, but across divides of type, approach and level of experience. Not because they would get something out of it - but just to offer a helping hand to someone who needed it.

Who wouldn't want to be part of that?