Backwards, forwards and off at a tangent

Looking back
Well that's it 2015 - you've pretty much had your lot.

So this is the seemingly inevitable 'round up' type post and also a chance to *finally* get around to writing a post that I had wanted to publish in the weeks before Christmas concerning the latest tomfoolery that my diabetes has decided to subject me to.

In January this year I had my first glimpse of the MiniMed 640G at a Medtronic bloggers and advocates meeting. There was quite a lot more of this particular gizmo later in the year.

February saw me clocking up 25 years of living with type 1 diabetes. More by luck than judgement I still seem to have most body parts in relative working order and nothing to speak of has apparently shrivelled up and dropped off so far.

In March, was honoured to be invited to join a small group of bloggers and advocates at the Diabetes UK Professional Conference in London, spreading news of new research and information via Twitter and Facebook as the conference progressed.

One of the most dramatic changes I have made in my diabetes therapy in years occurred in April when Fruit Pastilles and I abruptly parted company.

Over the summer I had the opportunity of living with the MiniMed 640G with full-time sensor coverage for 9 or 10 weeks and posted my very first video blogs documenting my experience. It was the first time I trialled sensor-augmented pump therapy and the results - for me - were quite simply remarkable.

August saw the publication of new NICE guidelines for Type 1 Diabetes in Adults after years of work. It is something I am very proud to have been involved in as a member of the Guideline Development Group. It would be wonderful to think that the document might make a positive difference in some small way to at least one person living with type 1 in the UK.

In November, I chose to upgrade to the MM640G when my pump warranty ran out, though that decision is tinged with sadness as (not unexpectedly) my clinic were less than optimistic about my chances of securing NHS funding for sensor coverage any time soon.

December saw an invite to speak at the Royal College of Physicians in Edinburgh at their St Andrew's Day Symposium. An amazing experience and I was humbled to be invited. Even more encouraging were the invites that I have subsequently received to speak elsewhere. Looks like 2016 could be really exciting. I'll let you know if and when any of them happen.

Looking forward
It will be interesting to see what else the New Year has in store. I would dearly love to be invited to DPC16, but will have to see whether Diabetes UK would like me to be there. I feel very lucky to continue to be part bloggers and advocates groups for both Medtronic and Abbott and look forward to seeing what snazzy new gadgets they have in store over the next 12 months.

I find myself wondering whether I will be able to self-fund sensors for my new pump for a small part of the year (something I never quite managed on the Veo). I have been using Libre sensors intermittently through 2015 and they have been incredibly helpful - but my experience of living with SmartGuard was really something else. It seemed to be the missing part of the puzzle for me. If the transmitter cost was lower, or transmitter life-expectancy was higher it would be a no-brainer. We shall see.

Expect the unexpected
It seems like my diabetes has decided to go off at a bit of a tangent recently. It will be interesting to see if my new 'surprises' continue to occur during 2016.

About two or three months ago I started noticing something rather odd. Since 2010 I have spent quite a lot of time trying to get to know my diabetes rather better. I had always thought we were reasonably well acquainted, but looking back there were many things that I simply did not realise were happening, or put down to 'diabetes randomness'. To be fair, there are still quite a few of these, but a lot less than there once were. When my basal is set right generlly my corrections and doses can be expected to behave (with an odd wobble here or there) when faced with a number of tried and tested meal scenarios. So when everything seems to be pottering along OK one day and then goes haywire with identical breakfast and lunch choices the following day my brows knit and I begin to wonder what's up.

And I have noticed some rather odd coincidences. Well... odd in some ways, but actually quite expected from others' point of view.

All the while over the years I have been relearning my diabetes and asking questions of others, I discovered a variety of 'things' which seemed pretty common experiences for people living with type 1 diabetes that simply did not seem to happen for me, even when I looked carefully for them. Things like exercise or alcohol having an blood-glucose-lowering effect the day after the event. There are a bunch of other things too. These were things I saw being discussed on forums and social media and was always able to say, "Oh that's interesting... I don't get that at all". Except now I do. At least some times.

The exercise and alcohol ones particularly stand out to me, because they involve every T1D's second-favourite game - the ole "What shall I do now?" bedtime conundrum. Which is double the fun if you seem to have spotted a pattern. But one that only applies some of the time - Ah Diabetes! You sly old minx.

So last night, for example, I went to bed at 8.6mmol/L with 1.3u of insulin on board which *should* have been dealing with carbs I had eaten mid-late-evening. Unsure if I had the count right I had another 5 grams or so to err on the side of caution. Except that we had been out at a family event earlier in the day and I'd had rather more booze than I would normally. Not silly amounts, but *possibly* worth factoring in when living in these new 'will it..? won't it..?' times. So I also set an 80% TBR to run for 8 hours. I was fortunate to be wearing a Libre sensor for the last of its fourteen days, so I had a chance for a quick peek at 2.45am whereupon I discovered than unlike earlier over the festive break I had *not* dipped at all post-alcohol - but had risen pretty steadily into the 10s. I added another 0.8u and cancelled the TBR waking at 7.5mmol/L.

So why had I taken precautions that pushed me into double figures? Why choose 80% for the TBR? Because over the last quarter of the year I have had multiple occasions when that has been exactly the right thing to do, not only overnight, but also through to lunchtime the next day. In fact this was the situation fairly reliably when I first decided to write this post (early Autumn). It's only in more recent weeks that the edges have begun to blur again, and I am now left with uncertainty rather than An Actual Plan.

And I've had occasions over recent months where post-exercise dips a day after the event have needed exactly the same careful handling. And others, more recently, where seemingly similar exertions have needed nothing of the sort.

Not helpful.

It seems as with many things in life, the best approach to living with with type 1 diabetes can be found within the hallowed pages of Douglas Adams' trilogy in five parts:

The nearest approach the Guide makes to this matter is on page seven-thousand-and-twenty-three, which includes the words "expect the unexpected”. This advice has annoyed many Hitch-Hikers in that it is ‘A’ - glib, and ‘B’ - a contradiction in terms. In fact, the very best advice it has to offer in these situations is to be found on the cover. Where it says, in those now notoriously large and famously friendly letters, “Don’t Panic”.

The Hitch-hiker's Guide to the Galaxy (part 10), Douglas Adams

Collecting third pancreas object (C-3PO)

On Monday this week I popped in to see the lovely LJ the DSN at my Pump Clinic to collect my new pump. We had a nice chat and ran through the set up procedure before I pottered back with a little smile on my face.

You may remember that I posted about collecting my first insulin pump on 1st November 2011. Mostly for my own amusement, I began referring to my little robot counterpart as Artoo almost immediately (R2-P2 - replacement to pancreas #2, with MDI having been replacement to pancreas #1). Insulin pumps generally have a warranty period of 4 years, and my hospital were happy to replace my old pump fairly soon after that period had passed.

I could have chosen pretty much any of the currently available insulin pumps I think, and I have been tempted by the Animas Vibe for some time, though of course, that pump is now getting rather long in the tooth. Animas are well down the road of developing their next pump, but their new offering is not supposed to launch until perhaps 2017. I'm not sure exactly what the new Animas pump will bring to the table, though some sort of insulin-adjusting CGM integration seems to be rumoured. For the Vibe though, despite the attractions of the Dexcom tie-in I was wary of some irritating details of the bolus wizard on the Vibe and was very mindful of the absence of SmartGuard and potential alarm fatigue should funds permit some CGM usage for me.

Medtronic have timelined their new 'hybrid closed loop' MM670G for a similar period, perhaps 2017-2018 (which apparently will have a souped-up version of SmartGuard that aims to counteract highs as well as lows). In the end though, given my very positive experience of the MM640G, I decided to opt for that one. After all, those tantalising shiny, new, possibilities may not actually launch until more than half way through my next pump contract.

Given the almost stifling saturation of hype surrounding the UK launch of the new Star Wars film in 7 days time, I have not been able to resist revisiting that old joke again and so 'threepio' has become my new droid companion. Apparently he has a protocol for dodging hypos as well as communicating with moisture vaporators, but unless I have an unexpected windfall of 'galactic credits', sadly that particular function will remain little more than a futuristic fairytale.

In other, and slightly related news. I have already changed the Threepio's setup so that the homescreen displays as if I were using sensors. Partly this is because I prefer the look of the graph on it (even if the graph has almost no information to display) because of the irritating enormity of the '-.-- we have no fingerstick BG information to show you' dashed line. But also because that way I can use the graph data to track down the timing of my most recent bolus. Either as a visual ready-reckoner with the blue dot beneath the otherwise empty graph, or by drilling in to the graph view and scrolling back to see the exact time. Gathering the information this way takes only five clicks from 'standby' whereas getting the same information in the normal way from the 'status bar' takes seven.

Little things and all that.

Edinburgh, encouragement and a call to arms

This week I have been lucky enough to be invited to speak at the 55th St Andrew's Day Symposium, hosted by the Royal College of Physicians in Edinburgh. I was given the topic of 'apps and technology' in relation to managing a long-term condition like diabetes, but obviously - not content with that - I managed to sprinkle in a wafer-thin analogy of what living with type 1 is like, along with all sorts of stuff about the #doc and the transformative potential of online peer support communities.

I tried to cover the infuriatingly fickle nature of type 1 diabetes, mentioned a few 'old favourites' like mySugr and the Accu-Chek Expert which have helped me attempt to tame my own 'diabetes monster' and also just a few of the many other things that I know help others in different ways. Gathering data and then learning to be able to apply it to make small improvements. Not forgetting, of course, the support you can get from those facing the same battles every day, whether in terms of just keeping going when it all falls to pieces (again!), or in people sharing experiences and strategies that work for them that you can consider for your own self-management.

It seemed to go relatively well, and people were very encouraging - but the absolute stand-out for me about the whole experience were the conversations I had with some passionate diabetologists after the session had ended. I had deliberately avoided focussing too much attention on the more obvious technological advances like pumps and CGM, as I had wanted the talk to have as wide a reach as possible, and also perhaps fire the imaginations of clinicians working in other disciplines as to how they might make use of similar apps/peer support resources in their own specialism.

Speaking to those diabetes specialists afterwards was something of a call to arms. Much money is being spent on healthcare in the UK which does *not* have the ongoing quality of life benefit for individuals that sensor augmented pump therapy offers - let alone the extension of life for pump users as shown in recent research. The case was made to me that it is time the diabetes online community stopped being so darned understanding about the lack of funding for sensor-augmented pump therapy. The time for accepting defeat has passed, and as more and more data are made available from increasingly positive trials, we need to start banging the table if we are ever to move pump/CGM into the mainstream in the UK.

I got the distinct feeling that there are many clinicians who feel strongly that this is the way forward for type 1 care, but that patient voices as part of that change are crucial. Certainly the impact of patient support in Scotland's wider adoption of pump therapy in recent years sets an encouraging precedent.

Yes I *know* we go on about it all the time among ourselves (often with a resigned sigh and bit of self-funding) - but perhaps the moment has come to really start ramping up the pressure.

Disclaimer. My travel, and accommodation was paid for, but I was not paid to prepare or deliver my talk. I was also invited to attend a swanky dinner at the end of the Symposium which was lovely.

Tragedy, togetherness #insulin4all and WDD2015

Today is Frederick Banting's birthday and also, not quite by chance, World Diabetes Day.

I was planning to post something on the blog today, but the appalling, tragic events in Paris last night have completely taken the wind out of my sails.

It doesn't really feel the day to be marking or highlighting anything else. My heart goes out to anyone involved, however obliquely. Parisians who now live in fear as they go about their normal, everyday, uneventful lives. And also to the many hundreds of thousands of innocent people who will now live in fear of violent Islamophobic reprisals.

But life, as the say, goes on. Instead of focussing on the division, violence and horror that a tiny minority are so evidently able to inflict, I find myself trying to focus on the exact opposite.

People, on the whole, are nice.

People, generally speaking, look out for one another.

People, more often than not, want to help - even if they may not receive anything in return.

People care about each other.

Yes of course there is selfishness, self-interest and general all-round rubbishness in human experience. Yes *some* people, perhaps even quite a lot of people, are prepared to do absolutely awful things.

But not most.

Not most.

I can see this in the Diabetes Online Community all the time. People wanting to support and encourage. People wanting to help. Wanting to affirm, strengthen, build up. People wanting to understand other people's point of view. People from wildly different social, economic and cultural backgrounds wanting to improve each other's lives. People willing to give of themselves without expecting, or requiring anything back, save to be part of a bigger, wider, more connected whole.

Better together. Better. Together.

T1 International and The Pendsey Trust are an example of this - attempting to co-ordinate and bring together support for #insulin4all - tiny charities raising awareness about the lack of access to essentials (insulin, test strips, education, healthcare) that many people with type 1 diabetes face around the globe.

As difficult as it can sometimes be to manage life with type 1 diabetes in the UK, it is a complete doddle compared to countries in the world where insulin is unavailable or unaffordable. In this day and age no one should die because they cannot access the insulin they need to survive.

Painting the Forth Bridge

The Forth Bridge (CC licensed)

Famously, the painting of the Forth Bridge (an enormous railway bridge across the Firth of Forth in Scotland) took so long that by the time the workers finished painting this spectacularly beautiful collection of girders, steel, bricks and sweat, it needed to be started all over again. Apparently this is no longer the case and the painting has finally stopped, at least temporarily, but bear with me here as I indulge myself in a little cliched allegory.

Painting the Forth Bridge - I wonder what it would be like to be one of those people given that task.

Perhaps a young man, in his early twenties. Suddenly, unexpectedly, given this massive undertaking. A job for life. It must surely have been a daunting prospect. But perhaps there was something of a challenge about it too. Something to get stuck into. Something to work towards. And while the tools were, at first, unfamiliar and clumsy, he was determined to see the work done. To do it the best he could. To protect this beautiful structure.

And the days turn into weeks, and the weeks turn into years. And still it goes on. It is hard work. The schedule is punishing, but it has to be done. He pushes on. The tools are more familiar now - he's actually got pretty good at this painting lark. He has picked up some tips from others who have been painting far longer than him. He can even take some of the difficult corners in his stride, the awkward spots that he could never really manage before. Occasionally a new brush or a fresh pot of paint kindles some excitement and interest. Spurs him on. Improves his technique. And then back to the graft.

And some days... some days it is just beautiful. Way up there at the top of one of the arches, alongside friends and co-workers, with the wind gently cooling his face, as the sun beats down on his shoulders. The view stretching for miles and miles. The distant thrum of locomotives passing below. The faintest call of birdsong from the marshes. When he compares his work to others' he thinks, "You know, it's not that bad." He feels lucky. Yes there is work to be done. Yes he has to be careful to keep himself safe, but in comparison to some other working conditions he knows about - he could have done much worse.

There are scary times too. When storms lash and winds howl. This work is no place for the faint-hearted then. But even then... even then there is something to push against. Something to overcome. A battle to be fought. Something almost heroic about it. Those are not the hardest times for him.

It is the grey days he fears the most. The grey, unending, energy-sapping days. Where the fog rises up and obscures everything else.

The days when his paintbrush seems to weigh even more heavily than his heart. When the neverending nature of the task overwhelms him. No matter how hard he tries, no matter what he does. He will never finish. Stroke after pointless stroke. Hour after pointless hour. And still no nearer the end. There is no end. And if he slows down, he only gets further behind. The task goes on and on. Unrelenting. Inescapable.

He has an annual performance review with the HR department. They seem happy enough with his work, but can only talk about the rust and decay that constantly threaten the bridge. The rust... the rust... always the rust. He must not let up they say. He must keep up his workload. They come down pretty hard about Health and Safety too. Apparently, though he tries to be careful and is pretty diligent with his harness, hardhat and boots, he is not doing enough. He could slip at any moment and that would be it. They don't seem to understand the reality of what it's like up there. Sometimes you have to move from point 'a' to point 'b' and it's not always possible to be fully harnessed-up in between.

He ventures to ask about a new piece of painting equipment. It would make his work much easier, and much safer. He has even tried it and has seen what a difference it makes. Unfortunately 'the management' will not provide it. It is too expensive, and they are not sure they believe the promises in the brochure. The HR department are sympathetic, naturally, but the decision is out of their hands. He knows, of course, that his equipment is pretty expensive already. It's not a surprise that the newest and fanciest stuff is out of reach. But his head and his heart feel differently about it. Part of him aches for what might have been. Part of him wishes he'd never even heard of this new stuff.

And the grey days continue. He blunders on. Barely looking at what he is doing now. So tired. So tired of it all. Sometimes he looks at his brushes with loathing. He wants to throw them over the edge. Cast them into the broiling waters below. Just watch the bridge decay and fall. The rust... the rust... To surrender the bridge to the elements.

To stop.

But he can't. He WON'T stop. He pushes down the melancholy as an act of will. He knows so many people that love this old bridge. Who rely on it. Who need it. He wants it to be there for them.

So he picks up his brush one more time.

Sighs.

And carries on.