Diabetes and grief

I could have redrawn this, but I copied it from this article.

Rather than hastily cobble together a half-baked 'review of the year' for the past 12 months, I've decided to write something on a topic which is more or less constantly filling all of our minds in this house at the moment. I suspect this is more of a catharsis for me, than of any use to anyone else, but writing often helps me process things, so here it is.

I've often come across the concept of a relationship between diabetes (or any long term condition) and grief. I was born in the year Elizabeth Kubler-Ross first modelled the 5 stages of grief - Denial, Anger, Bargaining, Depression, Acceptance. Anyone who has received a diagnosis of type 1 diabetes is likely to recognise all or some of those phases as you grieve for the loss of your health, perhaps for the loss of the life or career choices you once hoped for. My own experience of grieving over my type 1 diabetes is that it has actually rarely felt like grief at all. And yet I can certainly see those stages coming in unpredictable waves over the years. Not in the neat diagrammatic 'first you get this... then you move on to this...' way sometimes illustrated, but in more of a cyclic ebb and flow. Peaks and valleys. Dark and light. Some stages repeating and recurring, others barely registering.

I've lived with this 'diabetes grieving' for approaching 30 years, and once I'd seen the phases/stages model, I found it quite a helpful way to understand my erratic thinking from time to time. Over the past 12 months I've been very glad that I've had a bit of a practise at this grieving lark.

Jane
Almost exactly 12 months ago, between Christmas and New Year, Jane (my wife of 24 years and occasional co-author of this blog) fell down the stairs. She went to the Doctor's when the pain in her back wasn't seeming to get better and, along with the long queue of people who go-to-the-Dr-with-a-bad-back, went through the standard sequence of stronger painkillers, x-rays, scans, more painkillers etc. A different locum every time (at least initially), and each appointment a few weeks apart.

It never was her back.

One collapsed lung, significant weight loss and a "Hmmmm, that doesn't look right" about her pancreas later and she was diagnosed with an aggressive, terminal, pancreatic cancer in May 2018.

I first met Jane in 1993. She was working part time in a framing shop just down the road from where I was working at the time, while she was simultaneously building a career as an artist, illustrator, dressmaker and doing a little soft-furnishing on the side. She remembered me because the mount I asked for was a peculiar size - I had mis-measured it - and as if heralding our future together she gave me exactly what I asked for, before gently letting me know I’d got it wrong and sorting it out for me.

I kept popping back to the shop hoping to bump into her. Browsing the greetings cards by the door, then losing my bottle. Eventually after buying more cards than anyone could sensibly need, I plucked up enough courage to ask Jane for lunch at Pierre Victoire. We had lamb.

We went to the Odeon and saw, ‘In the Line of Fire’. Clint Eastwood, John Malkovitch and just enough exploding helicopters for a perfect romantic evening. And then we walked and talked all around the city centre and harbourside long into the night. I think I knew right then. Perhaps we both did. About two weeks later we had a faltering conversation in the car about where we thought this might be going. We realised, of course, that any talk of engagement and weddings after so short a time would seem ridiculous to everyone else. So we vowed not to speak of it again and to review how we felt in 6 months.

6 months later we got engaged and were married in November 1994.

The way Jane responded to her diagnosis and coped with the following 6 brutal months was nothing short of extraordinary. She went from "come in to find out the results of the scan" to "palliative care" in the space of about 6 minutes. She amazed me. Heroic, feisty, hilarious, determined, positive and with a level of empathy that I cannot imagine many others on the planet would have possessed. We had an amazing last summer together as a family. We wept, we laughed, we talked, we shared, we planned. We ate lots and lots of cake. We were utterly humbled by the outpouring of love and support from friends, neighbours, family and professionals around us.

Jane died in October 2018, and Christmas day this year marked exactly 2 months to the day since she died.

Jane had always joked that she'd 'go first'. And the irony of her managing to do it with something pancreas-related was not lost on either of us. We laughed. There was a lot of pitch-black humour in those last months.

The immediate aftermath of a death seems to involve an extraordinary amount of admin. Honestly it just keeps rolling in. Quite how some people can navigate through those hoops while also dealing with the immediacy of the loss is beyond me. It does form a half-welcome distraction at times, but really - I cannot believe that this is the best way to handle and process a situation that is affecting hundreds of families today (whichever day you are reading this post). People who might have learning difficulties or other challenges to juggle alongside the need to suddenly make dozens of appointments and complete rafts of paperwork.

And the initial weeks, turn into a month. And actually, we'd all begun our grieving with the terminal diagnosis 6 months earlier.

Almost inevitably, people have been asking me, "How are you doing" quite a bit. It's not unwelcome, but it's also not always an easy question to answer. Not always easy to say, or describe - or even understand yourself. I've come across various metaphors and illustrations of what grief is like that I've found helpful. Grief as a rollercoaster. Life growing around grief. Grief as a box-ball-and-button. And me being me, I've been trying to understand my experiences with an analogy of my own.

Original photo by Sam Howzit. Creative Commons 2.0

The Frozen River
I woke with this picture in my mind very clearly one morning. I'm not sure if it was left over from a dream, or arrived just at the moment of waking. I've thought about it often since. I am standing on the bank of a frozen river. The sun is shining, the river is vast and wide. I step out onto the surface. The sunlight catches the frozen surface glittering and shining. As I cautiously take more steps I am aware that beneath me there is a dark broiling current, swirling and eddying. At any moment I might fall through and be plunged into the inescapable blackness. As I shift weight stepping forward the ice is creaking and giving off little pings and ringing chimes. Utterly beautiful, but they only serve as a reminder of the precariously fragile nature of what separates me from the churning depths below. I cannot go back to the shore I have left - I have to keep going. I cannot clearly make out the far bank ahead of me, though I know it must be there. The ice reaches out into seemingly infinite distance with no way of telling how far I must go. Sometimes the mist blows in and the ice beneath me feels so thin, so fragile that I can barely risk it. Other times it feels more sturdy, the sun cuts through and feels warm on my face, the sparkling chiming surface transcendently beautiful. I must keep going to get to the other side. Keep focussed on taking gentle step after gentle step. Trust that the surface will keep supporting my weight. Somewhere up ahead, even though I cannot see it, will be the far bank, and warmth, and safety. I just have to keep going.

Sadness and sorrow
I've always loved carefully chosen words (not that you could tell that from my barely coherent ramblings here!). Poetry, and especially song lyrics, that express deep truths with beautiful economy and precision. Really good advertising copywriting too. Saying a lot with very little.

I had an 'Ahhhhh! Yes that's it...' moment earlier this month when I realised that what I was feeling was sorrow and not sadness. Sadness has happened too, of course. Sometimes sharply intense. Other times just gently lapping at the edges of my mind. But for me sadness has a more fleeting, temporary quality. It is the stuff that comes in waves. Sorrow is deeper, further down in the geological centre of me. A seam of it running deep, underpinning everything. No matter how enjoyable and lively my days are, how much laughter and fun I am having, there is always the sorrow running underneath. Occasionally the seam of sorrow breaks up to the surface and emerges - obliterating everything else - before eventually receding back down to the depths.

Jane always said that life comes in chapters. And 2019 will see the kids and me gingerly embarking on a new phase. I am incredibly proud of the amazing, talented young people they already are, and are continuing to become. I am staggered by their gifts, their resilience, their abilities, and their nature. The next 12 months could see some amazing changes for us all as they both launch into whole new young-adult chapters, and I know that Jane could not have been more proud of them.

Here's to an amazing, fun-filled 2019 whatever you are planning, and whatever you have to face. And thank you to everyone who has helped and supported us as a family over the past year. It means more than we can say.

CGM, diabetes time travel, and lessons learned from go-karting

Image by 'aurorasognatrice' used under cc.

2017 is hurtling to a close, and despite my giddy optimism about having 'loads of time' over the festive break to do all sorts of things that I don't generally get around to, the days have passed in a blur of hopelessly guestimated carbs, fun, friends, family and alcoholic excess. Consequently I am once again hastily cobbling together a round-up of the year type post - you lucky lot.

Almost exactly 12 months ago I was placing my order for a transmitter and first box of sensors for my MM640G insulin pump. I'd trialled the system over the summer of 2015, and I have always opted for Medtronic pumps with the vague notion of possibly, some day, self-funding CGM - but this was the first time our family finances had permitted it. I'd been using Freestyle Libre sensors intermittently for a few years (which you can use sporadically without the additional £500 for a transmitter), so I was interested to see how occasional SmartGuard coverage worked out for me.

In the end 2017 turns out to have been by far my most sensor-filled year. I was invited to trial Medtronic's Guardian Connect in April, and was unexpectedly and very generously gifted some short-dated sensors by someone who was switching systems and could no longer use them.

I always try to get the maximum use out of every self-funded sensor I insert, and I am fortunate to be able to restart almost all of them for at least another 6 days while retaining good performance. This almost halves the cost - or more accurately for me, doubles the sensor coverage. I had hoped to spread 10 'stretched' sensors (approx £500-worth) across the year to give me somewhat less than 50% coverage, but in the end, have been able to use them continually for quite a number of months which has been a very interesting contrast to my usual pancreas impersonation guesswork. It's interesting to reflect on the changes I've noticed myself making to day-to-day management decisions, and how it has felt as an experience. Here are a few basics:

• On the whole it has felt far easier to live with diabetes this year.
• I've not done any complex analysis of BG results, but my basic monthly spreadsheet analysis (nerd alert) shows significantly better results.
• My A1c has fallen by 7mmol/mol (0.5%) and my hypoglycaemia has dropped significantly
• Sustained reduction in hypoglycaemia has really improved the reliability and timing of my warning signs.
• For the most part I seem to be operating with around 80-85% of results in range (4-9mmol/L) - even over Christmas. This is ridiculous.
• On average I've only been getting 1-2% of results below 3.9mmol/L, nocturnal hypoglycaemia has been almost completely eradicated and I am having days and sometimes weeks at a time with all but no readings below 4.0.
• These are not results I can achieve without continuous data, not matter how hard I try.
• Even with the benefit of Freestyle Libre these are results I find it impossible to achieve. The alarms of full CGM provide me with significant added benefit, especially for catching lows.
• Occasionally life with CGM has been rage-inducingly frustrating, and alarms have sometimes driven me to distraction.
• I've had a few duff sensors and made some very poor choices based on inaccurate sensor data.
• Additionally, SmartGuard is a bit of a liability with an inaccurate or under-performing sensor, sometimes sending me into double figures with a cancelled basal (and sometimes half of a slowly-delivered bolus!) when I would have been fine if left well alone.
• SmartGuard is amazing for me, but very often I can't resist overruling it, ending it early and/or adding some carbs. Sometime this works better, sometimes I suspect I create more problems for myself than is strictly necessary 
• Additional data is a significant help to me day-to-day. I've come to rely on it and feel quite lost without it, but there are times when some of the subtle details of life with CGM have created their own challenges - which leads me to...

CGM and diabetes time travel
I've always been one for a thinly stretched analogy. I can't help myself. There are two coming up... You have been warned.

With absolutely no apologies for the shameless 'Christmas Dr Who' reference, I've also been thinking quite a lot this year about the diabetes time travel that you get involved in when tinkering with continuous data. I've considered this before in terms of the repeated half hours you can spend with diabetes waiting for various management decisions you have made to start working - periods of waiting which can seem interminable. With more time spent in CGM-land this year I've noticed additional time travelling shenanigans with the lag between 'sensor glucose' read via interstitial fluid and actual 'what's happening now' blood glucose information.

This was brought more keenly into focus with my brief dalliance with the faster-acting Fiasp. An insulin surrounded by feverish hype of very rapid action - which sadly for me rather failed to live up to expectations. But the promise of faster acting doses has occasionally made me feel the sluggishness of Novo-not-very-Rapid all the more keenly.

Mostly I find 'sensor lag' is barely noticeable, but with a whiff of irony, it is when my BG is on the low side and I'd really appreciate accurate information that this 'time travel' is most clearly noticed. Looking at a Libre or Enlite trace at those times, shows you what was happening something like 10 or 15 minutes ago. And any 'rapid' carbs you take to bring up those low levels, or turn-around a dip towards hypoglycaemia won't change your blood glucose for 10 or 15 minutes, and may not show on the eagerly-watched line for a further 10 or 15 minutes after that. More than enough time to double-treat, only to watch your levels climb into double figures a little while later.

In just the same way, when you have a trace to watch, there is a powerful urge to see a high-and-rising BG trace turn around. But correction doses for me are unlikely to show any noticeable effect before 60 minutes have passed (unless I add increased activity into the mix) - plus the mandatory 10-15 minutes, of course. And at each of these moments the graphed time-travel of results, and interminably upward direction of travel gives few clues as to when it is 'just about' to level, or begin to dive downwards. Threepio proudly suggests 'insulin on board' from which you might think I could make an educated guess (and sometimes I do luckily seem to drag some precious clues) but all too often I can find my IOB dwindling away to nothing, coping only with mis-guessed carbs, rather than the elevated BG I had hoped to squash. Other times I can bear it no longer and wade in with an additional dose, only to see my BG trace drop off a cliff and plunge downwards - awash with both insulin and various types of carbs. Which reminds me...

CGM and lessons learned from go-karting
I have only been go-karting three times I think. By which I mean the crash-helmeted-boiler-suited-whiff-of-2-stroke-engines style go-karting rather than the sliding-down-a-hill-in-a-fruit-box-with-pram-wheels-bolted-on style. I don't think it's an exaggeration to say that I'm absolutely terrible at it. I was reminded of my go-karting prowess when thinking about some of my... erm... more questionable diabetes decisions in response to a more frequent CGM data-feed. I suspect I am not the only one who has fallen foul of the double-dose and/or double-treat temptations - and for all the benefits of all that extra information, it is unmistakeably one of the risks.

The very first time I sat in a go kart, in a dimly lit, oily, industrial shed on the outskirts of our city, my driving style was essentially binary. The accelerator was either fully down or entirely untouched. The steering wheel locked at either edge or dead centre. Brakes were applied with sledgehammer-like gracelessness. As a result I kangarooed around the indoor circuit, making full use of the amply-supplied tyre walls and doughnuting my beleagured kart in furious circles. I proceeded at lightning speed from one collision to another and made very little effective progress around the twists and turns of the circuit.

This is pretty much the way I drive my diabetes when things are not going well. Frustrated by apparent lack of action of more reasonable measures I heftily over-correct with hugely inflated insulin doses or swigs of Lucozade. Lurching and stumbling from high to hypo and back again. Crash! Clonk! Screech! Everything becomes overblown and chaotic.

The second time I went karting was every bit as 'successful' as the first, but I had something of a lightbulb moment on the third occasion - which was at an outdoor circuit. For whatever reason, this time I adopted a more subtle approach. The accelerator was rapidly pressed full down at the start, then backed off in time for the first corner... rather than stamping the brakes I found myself making little feathered dabs. Steering was altogether more considered. Confidence grew. Speeds into tricky corners increased, a late firm braking followed by a hard turn of the wheel and full throttle at the mid-point of the turn allowed me to power-slide out of the corner. I was still making strong adjustments in some circumstances, but more often my choices were much more subtle, more measured.

This is what I see when my diabetes management is more successful. It is when I am able to make smaller adjustments that I do better. Multiple big overlapping doses and rapid-carb 'rescues' can leave me in a flat spin and going nowhere. Smaller tweaks, spaced further apart are often significantly more successful. I have found this to be a really interesting and important thing to think about when Threepio is merrily warbling away. Those alerts can seem equally frantic, but I need to pause and consider my position on the 'circuit' of my day. Can I just coast through this corner without stamping on the brakes (adding insulin) knowing that the turn of the wheel or dab on accelerator I've already made is enough, or is this the devious hairpin and do I need full-lock and firm braking before powering-on with additional carbs to make the turn.

In general terms, when I notice that I am oversteering and stamping on the brakes and accelerator of my diabetes managment, I am trying to remind myself to make a couple of slower laps and build up to speed again more gradually with more gentle adjustments.

Widening the access to continuous data?
I was delighted to be invited by Abbott to attend DxAmsterdam in July, and then in September the eagerly awaited news was released that Libre was to be placed on the NHS tariff and could theoretically be made available on prescription, subject to local CCG decision-making (and perhaos an emerging postcode lottery). Abbott's real-world data, shared in Amsterdam, backs up my own experience of access to continuous data - that the more information I have on which to base my guesswork, the better things tend to go for me.

Diabetes still has the capacity to be hugely annoying of course, but for me - more data certainly leads to better results. Continuous data is not without its challenges, and it will be vital for people living with diabetes to be given appropriate support and help in order to make best use of the information and avoid the pitfalls. Both in terms of their support from their clinic and also perhaps, those who have made the mistakes before them and can share their experiences. It will be really interesting to see what effect wider access to these technologies delivers as access to Freestyle Libre and CGM increases in the years to come.

It remains to be seen quite how much life my transmitter has left in it. They are warrantied for just 12 months. I will continue to use Enlite sensors for as long as I can, especially since my CCG seem rather reluctant to take any decisions on the finding of any kind of sensors for anyone - however great the need. I would imagine I would be very far down any list they eventually decided to draw up. After that I'm not sure if I will revert to Freestyle Libre, spring for another Guardian transmitter or take a continuous-data break.

Wishing you all a tip-top 2018. And thanks as always for reading.

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.

Release your inner diabetes Hobbit - Guest post for Diabetes UK

My diabetes, yesterday.

Last weekend we finally got around to watching the last part of Peter Jackson's mammoth 'Hobbit' trilogy "The Hobbit: Battle, battle and a bit more battle" on one of those newfangled instant video services (pauses to wistfully remember trawling the aisles of tiny, ramshackle video rental shops all those decades ago). During one of the epic-wide-shot-sweeps across the thundering conflict there emerge, through dust and fracturing hillsides, several enormous, lumbering cave trolls - staggering about, squashing people and generally getting in the way.

They reminded me more than a little of my diabetes.

Except that my diabetes doesn't often wear a little wooden backpack-style platform of Orcs throwing rocks. Although some days...

I think it was the thick-headed stagger of them that made me draw the comparison. The turgid movement. The stupidity and utter disregard for anyone or anything around them. Yup, my diabetes can be all of those things. Slow, stubborn and very hard to work around.

The heroes of the film, by contrast, are tiny, fleet of foot and scamper around very nimbly. Dancing and chasing in and out, between legs and around corners, while the grunting Diabetes Troll laboriously lifts its impossibly-heavy hammer for another ill-aimed swipe.

But there is obvious peril here. Running rings around the hapless troll is all very well, but unless you keep your wits about you, and ideally keep your distance from the 'complications' hammer sooner or later you run the risk of getting squashed.

Mercifully, diabetes complications are pretty slow moving for the most part. And an occasional out-of-range reading here or there does not necessarily mean that our kidneys pack up immediately or our eyes are instantly fried [Good job too looking at my BG results this week!]. But there is a danger in that. It is all too easy to become a little complacent. Doing something now that (you hope) will reduce the chances of *something* not happening 5, 10 or 20 years from now is not a brilliant action-reward feedback loop. What someone once described as, "We work hard so that nothing happens... We hope that all of that "something" we do leads to nothing - Nothing is a pretty lousy reward".

All that effort and nothing to show for it. Are we doing enough? Do we need to do more? And we can't rely on our feelings to measure these things. There are no pain-measuring nerve endings in many of the places that our Diabetes Troll might be taking a swing at. And the swing itself might be so slow as to be almost unnoticeable until it's right there upon you.

And that is why the 15 Healthcare Essentials recommended by Diabetes UK are SO important. The first 9 or 10 represent really important annual checks which allow you to keep an eye on your Diabetes Troll. And if you discover that you are straying a little too close for comfort, having these checks done every year allows you to take action early to reduce your risk of getting squished. Between 10 and 15 there are really important parts of your care package which will allow you to improve your hammer-dodging skills, brush up on your swordplay and make sure your mind, as well as your body are ready for the fight.

15 Healthcare Essentials Checklist

1. Get your HbA1c measured at least once a year
2. Have your blood pressure measured and recorded at least once a year
3. Have your blood fats (such as cholesterol) measured every year
4. Have your eyes screened for signs of retinopathy every year
5. Have your feet checked every year
6. Have your kidney function monitored annually, including having your urine tested for protein
7. Have your weight checked
8. Get support if you are a smoker
9. Receive care planning to meet your individual needs
10. Attend an education course to help you understand and manage your diabetes
11. Receive care from a specialist paediatric team if you are a child or young person
12. Receive high quality care if admitted to hospital
13. Get information and specialist care if you are planning to have a baby
14. See specialist diabetes healthcare professionals to help you manage your diabetes
15. Get emotional and psychological support

Around 80% of the budget spent on treating diabetes in the UK goes on sorting out complications. Just think about that for a moment. 80p out of every pound. All the cost of medications, test strips and fancy diabetes gadgetry are utterly Hobbit-like when set against the monstrous scale of the cost of helping those for whom things have not worked out so well.

The vast majority (around 90%) of people living with either type 1 or type 2 diabetes have never been offered or have never attended a structured education course which could give them the skills to live better with diabetes every day.

Way less than half of the people living with Type 1 in the UK are getting the checks that they should every year. The actual figure, according to the National Diabetes Audit is just over 40%.

People are not finding out early enough that their eyes, kidneys or nerves are starting to show a little wear and tear. It is never too late to make improvements to your own diabetes management, or get the right treatment and support. Many, many people have used information from their 15 Essential Healthcare Checks to dodge the hammer-blow and nimbly dart out of reach of the troll's swing. Early warnings are just that. Improve your diabetes management and in many cases those early signs can be stopped in their tracks - sometimes they can disappear altogether.

If you live with diabetes, or know someone who does - make sure you read that list and make those appointments. Being told, 'It's all looking fine' does not make these visits a complete waste of time. It's an important annual opportunity to make sure you are staying one step ahead of the trolls.

See also: 15 checks, diabetes audits and prawns

Diabetes breakups

I'm sorry. I wish it hadn't come to this, but I'm afraid it's over between us.

I don't know why you are looking so surprised - you must have known this was coming after how things have been between us over the last few weeks.

We've been inseparable for so long now. Hardly a day has gone by in the last 5 years when I've been apart from you. All those times we've shared. All those adventures. All those scrapes we have got through together. And now it's come to this.

I know the polite thing to say is that this is down to me, but we both know that isn't the case here. It's not me, it's you. You've changed - and not in a good way. It's not just me that thinks so. Our friends have noticed the change in you too. And I'm afraid I can't go on living with you like this. You have let me down, when I needed you most. And then when I forgave you and tried to go on as before - you just went and let me down again, and again. And now I hardly even recognise you. I just don't know who you are any more.

Maybe you are looking for someone else? Someone with deeper pockets maybe? I hope you'll find someone for your future, but I know for certain that it isn't me - not while you are behaving like this.

And it breaks my heart, because we have been in this together for so long. Perhaps I came to rely on you too much? There were times when I thought I could accomplish anything as long as you were by my side. But now? Now I'm just waiting to be let down. Waiting to be abandoned. I can't trust you - and I can't be with someone that I can't trust.

I'm not angry I'm disappointed. And angry.

So I'm sorry, but I've found someone else.


For those who have *no* idea what I am going on about... after many years of faithful togetherness it seems that Fruit Pastilles (my pocket-based hypo remedy of choice) have changed their formulation. Over the last fortnight I've had to ditch large parts of several packets which became an unusable gooey mess covered in irremovable tinfoil, occasionally plastered to the inside of my jeans pocket. Nice. The worst discovery was during a training run for my forthcoming 10km road race in support of INPUT. Feeling a bit low and discovering half the remaining pastilles rendered useless 5km from home put me in a pretty tight spot for my run back.

Need to know - Diabetes UK's Make the Grade Campaign

In this latest guest post for Diabetes UK I've been invited to think about their fantastic 'Make the Grade' campaign to improve care for children with type 1 diabetes in schools.

There are a lot of things that you can learn.

Really. Lots.

The world is a big place, and almost everything about it has a bewildering level of complexity and detail that can be known. And however much you know, or think you know about anything, there is still more that can be learned.

As an example (I think I am nicking this from QI, but it may well be a conversation I had with my father-in-law about maps) the UK is an island, and you can find authoritative estimates of the length of its coastline. I say estimates, because of course coastlines being what they are, all 'wibbly-wobbly', cartographers quite rightly usually measure a series of straight lines from point-A to point-B without going around absolutely all the wibbles (what Slartibartfast described as the 'lovely crinkly edges'). In fact if you wanted a more detailed and empirical measurement, you would need to carefully measure in and out of each tiny inlet and rivulet; and decide how far inland to stop measuring the rivers. You would suddenly have a whole lot more coastline to measure. But more than that, each of these inlets are made up of still smaller imperfections which each have an edge than can be measured. And down and down to a grain of sand level where you could, if you had quite a bit of time on your hands, measure around each fragment of rock, each plant cell, each molecule.

So it turns out that the length of the UK's coastline is pretty much infinite.

The more you look, the more you see.

And so it is that most of us spend most of our time deliberately ignoring most things. The world is just far too complex and difficult to comprehend otherwise. We live our lives on a 'need to know' basis, and mostly what we need to know to get by in the world is almost nothing about everything. The merest fragments. Therefore, by extension, we can't expect everyone to know very much about a subject, even if we have decided to learn quite a lot about it ourselves.

Can you tell me where to find all the hidden ammo packs and weapons stashes on the second 'Venice' level of Tomb Raider 2? Well quite. You do??? Dude, let it go - it was getting on for 20 years ago.

I was diagnosed at age 21, in the final year of my degree. Like almost everyone I knew absolutely nothing about type 1 diabetes when I had *that* conversation with the GP who had the results of my Oral Glucose Tolerance Test. At a push I might have been able to tell you that it had something to do with sugar and not being able to eat stuff (I know!). I saw something on Twitter this week by someone who had an overwhelming desire to eat an entire pack of doughnuts in the days before they had their diagnosis conversation, just because they 'still could'. I remember that feeling myself. That in some ways the conversation with a sober-faced Doctor was the dividing line that separated the old life from the new. I remember asking for sugar in my coffee on the diabetes ward, and wondering if honey would be OK as a substitute for table sugar because it was, you know, 'natural'.

Pitiful.

It took me a long time to learn just a little about living with type 1 diabetes, and an even longer time to unlearn some of the misconceptions I picked up along the way. I've been juggling life and my diabetes for just short of 25 years, and I now consider myself to be a semi-competent beginner.

Managing type 1 diabetes is like measuring the coastline of the UK. Managing type 1 diabetes in children and young people is like measuring it with a magnifying glass. It is almost infinitely complex.

It is no wonder schools need support. It is absolutely no wonder that some schools really struggle to help children and young people with diabetes and other long term conditions effectively. Every child is different and has a unique set of needs and support requirements. Every child with type 1 diabetes doubly so and twice on Thursdays.

And yet there is hope - there are beacons of great care and lessons that can be learned elsewhere. If you are connected to a school, nursery or college that is not quite stepping up to the mark diabetes-wise, now is the time for action.

Fanstastic care and support for children with type 1 and their families is possible. It is happening all across the country. Make the Grade is about providing help and information to schools, nurseries, colleges and clubs that are finding it hard to rise to the challenge of type 1. It is about getting the best care for each child so that they can maximise their potential.

Make the Grade offers a practical, focussed toolkit and information for improving care. Good job too, because as of September 2014 proper support and care for T1 children and young people in schools becomes a legal requirement. This is no longer something that can be put on the back burner because, you know, it's a bit tricky.

If you are a teacher, parent or governor and want to know how 'Make the Grade' can make a difference to children in your care, visit the Diabetes UK website to find out more.

Good care for children with Type 1 diabetes is possible. Many schools provide fantastic support to children with Type 1, but some have concerns about how best to look after children with the condition.

A new law in England means that from September 2014 schools in England must make sure children with Type 1 diabetes are properly supported. But good care needs happen right across the UK, whether you live in England, Scotland, Wales or Northern Ireland.

Schools have responsibilities for children with long-term medical conditions, such as Type 1 diabetes, so they need to know how to ensure children have the right care and support to enable them to take part in all aspects of school life.
That’s why Diabetes UK has produced new resources for schools which provide practical tips and information on how best to support children with Type 1 diabetes so that they are able to make the most of their time at school. Their Type 1 diabetes at school: School pack is packed to the brim with useful information, including a sample medical conditions policy, information about the condition and how best to support children and young people who have it, answers to important questions, like how to store insulin, what training staff might need and much, much more.

The free school pack is available to order on the Diabetes UK website at www.diabetes.org.uk/schools.

(from the 'Make the Grade' Action toolkit)

Speed boats and oil tankers - Guest post for Diabetes UK

My ups and downs have been a little more up and down of late (read for most of this year, it's still early Spring, right?). Not exactly disastrous, but I've not really managed to ever get things into any kind of groove for more than a week at a time. A bit wearying to say the least.

Part of me knows the best way to improve things is to go back to basics and do some fasting basal tests and tweak my basal profiles based on actual information rather than the (un)educated guesswork I've been relying on for a while. Another part of me is having enormous difficulty summoning up any enthusiasm, since I know that the summer holidays are coming and I'm likely to stop going to the gym for a couple of months which will have a knock-on effect in itself.

So I'm spending my time grumbling and hurrumphing instead (my family are so lucky!).

On the plus side it does give me a chance to jot down this analogy that I've been meaning to for some time. It's something that usually strikes me when my BG levels are a bit errant, and insulin and food are just not playing nicely.

When it comes to trying to balance the effects of food and insulin on blood glucose levels (well and everything else.. but specifically food and insulin), one thing that makes it very tricky is the difference in the speed of action of carbohydrate and insulin. It's not enough to accurately match the dose of insulin to the amount of carbohydrate you are eating - you have to try to ensure that the two act more or less together to reduce BG wobbliness (technical term).

Almost all carbohydrate is very much in the speedboat class. Fans of glycaemic index tables (GI) might agonise over whether something is high GI, medium GI or low GI, but in my experience the differences equate to something being 'almost instantaneous', 'really very fast indeed' or only 'very fast'. Not a great deal of protection against the ravages of a post-meal spike, either physiologically, or that emotional kick in the guts of seeing your levels rise from a decent pre-meal number well into double figures an hour or so later. From the very first mouthful those big outboards start roaring and the carbs go zipping and zooming about, gleefully spraying glucose in their wake.

Insulin, on the other hand - even the fancy schmancy 'rapid acting' analogues can seem painfully slow to get going. More like one of those behemothic oil tankers or container ships. With a great groaning and clanking, the thrum of the plunger on an insulin pen or pump delivers the dose and then... Nothing. Watch and wait. Is it an illusion? Is it actually moving yet? Nope. Still can't see anything happening.

Vooooom! Swish! The carbs go tearing past again. Running rings around the slumbering giant.

This is particularly the case for me when I am waiting for a correction dose to kick in. I've had to stop myself from checking post-correction BGs before an hour has elapsed. Any less than that and the chances are my BG will be almost unchanged. An hour! Thanks Novo Turgid - not exactly breakneck.

Of course... one of the things about an oil tanker is that once it is moving, there's not a lot you can do about it. All those stories about them needing however many hundred nautical miles to slow down or turn a corner. And so it can feel with rapid insulins.

Nothing... nothing... nothing... Ah good, movement! Good... All good, back into range. Right that's enough now thanks... STOOOOOOOOOP!

But on and on, the dose lumbers forward - an unstoppable force. All-ahead full. The tanker has now run straight over those speedboats crushing them to matchwood and we could very well be steering directly toward Port Hypo.

Corrections can be a tricky course to navigate. Artoo tries to help by offering a suggestion of 'Active insulin' - how much dose is still working away, but there are *many* variables to factor into that equation. Sadly I find Artoo's attempts to be the vaguest of indications at best, and often wildly inappropriate to the particular circumstances of the moment.

Patience is the skill I have to master. I am always trying to remind myself that while the spike in my blood glucose levels may have happened in only 45 minutes or so, the insulin correction will only have stopped after something like 4 or 5 hours. If I get impatient and overcorrect in the meantime I am likely to cause myself another problem (and more wobbles) by overdoing it.

Aye aye, Cap'n.

Uncertainty Tennis

I found myself playing 'uncertainty tennis' again earlier this week. Perhaps you don't call it that... 'paranoia ping-pong' maybe? Or possibly 'confusion Kerplunk'. On the other hand - perhaps it's just me... And no one else ever catches themselves doing this?

The game begins some time before it starts, usually at least a day before, often more. You make a treatment decision based on what we long-term pancreas impersonators hilariously think of as 'what normally works', except that, on that day, it doesn't. Undaunted, you take some more insulin and/or carbs that 'should sort this out'. Except that it doesn't either. Or the next thing. Or the next.

Now that the groundwork is in place, the game can begin in earnest. Evenings are my favourite time to play, since that is the time of day when I eat the widest variety of meals often with the highest carb load.

Play.

First serve the other day was a carefully carb counted plate of pasta. A meal I have often eaten without suffering undue BG chaos for many years (yes I know... odd isn't it). Bolus delivered and food eaten. 15 all.

An hour an a half later, since things have been a bit unreliable over the last couple of days I decide I should check post-meal just to see how things are going. BG well into double figures. Darn. And pasta has a reputation for being very slowly absorbed too! And I didn't even muck about with extended bolus, blah blah blah. 15-30.

Now I know that the meal dose is still chugging away. But I also know that I really shouldn't have shot up this much by now. Artoo thinks there is plenty of IOB (insulin on board), but from experience it seems that would only be the case if I'm 8 or 9 at this point, rather than 12-point-annoying. Override the advice and whack in another unit. 30 all.

Another hour passes and I come over all hungry. Hmmm. Best be on the safe side. Low 10's. Well OK. Not low then. Still quite a lot of IOB though. And I *did* override. Sit tight or do something else? Pasta will still be going strong right now, won't it? Will it? 40-30.

Then a stunning approach shot... 20 minutes later and for reasons I can never fully explain I pop in another .7u - Deuce.

The crowd gasp! I've stopped testing now and I'm playing on instinct...

Too much IOB now surely? 2 Fruit Pastilles.

Then a minute later another one.

Still don't want to test. Too many out of range numbers today and I just don't want to see another in either direction... It's like whatever action I've just taken immediately feels wrong so I have to counteract it before it has a chance to take any effect.

Third of a unit.

Swig of lucozade.

Biscuit.

Too much surely?! Half a unit. The crowd are in their feet... (I'm milking it for comic effect now).

Finally after several hours, I can resist it no longer. I check again. 5.whatever with umpty units IOB, plus the last few lots of feverish carb corrections and whatever pasta remains still ticking away. Not only that, but (based on which part of the last two day's numbers I consider to still be applying tonight) I could quite possibly expect to rise, or fall, OR stay perfectly level overnight.

So bedtime looms and I have to decide whether to take it to the tiebreaker and wait up for some (most?) of the IOB and/or onboard carbs to work their way out along with whatever I decide to guess at to mop up the remaining IOB.

Or I simply munch a little something, retire, and hope for the best!

I am fully aware that my evenings of 'uncertainty tennis' are largely my own doing. Without a CGM, and when things have shifted such that I have little confidence in what I think ought to happen with a dose or correction I find it all too easy to slip into a rapid rally of insulin and carb corrections.

It would be easier to resist if I hadn't had so many evenings when 'just leaving well alone' meant I spent 4 hours in double figures only to eventually correct with what I had thought of doing in the first place. That and the fact that I've played some amazing games in the past where I've aced a high or low BG into flatline submission with some audacious... erm... 'shots' (sorry!).

Strawberries and cream anyone?

The Einstein Principle

Pick your cliché...

"I had it coming"... "Pride comes before a fall"... "Sod's Law"... "I brought it on myself"...

So hands up who thinks they know what has happened just as I posted something about how well things have been going recently. Right. So that's pretty everyone with diabetes reading this, every parent of a child with D, or anyone who lives with someone 'pancreatically challenged' then. Thought so. OK you can put your hands down now. Don't want your arms getting tired.

Yup. As you would all expect, immediately after I allowed myself a little glimmer of diabetic self-satisfaction the other day, things have well and truly gone 'off the rails'. In no small part self inflicted (a family birthday celebration with not quite enough self-control on my part). Partly stupidity - I forgot to press the final 'confirm' to administer a lunchtime bolus, cue stratospheric BG mid afternoon. A suspected big fat tubing bubble overnight (I know!). And also partly a little basal-tweaking needed as my half marathon training has started to kick in. What was looking to be a pretty decent set of figures for the month are suddenly looking decidedly ropey.

It's like that moment when [insert the name of your favourite sports star or team here] has put in all the hard work throughout the [season/game] and looks on course for glorious victory only to throw it all away with an errant putt on the 18th green, a missed double 16, by spinning out on the corner, conceding a sloppy goal in the 89th minute, or double-faulting the set away with a catastrophic loss of concentration.

It hasn't helped that I had a letter today from the fine folks at the mobile eye screening service today to say that they had spotted some 'background changes' in my eyes again. They said that once before a few years back, but I have to confess I far prefer the letters since then where they had been saying, "Nope, nothing to see here matey". No treatment needed, just another 12 month check. But not ideal news in a week where on-target readings have been a bit thin on the ground.

And of course (crassly stupid mistakes aside) those days when the wind is behind me and my pancreas-impersonating-guesses all come together with effortless perfection rarely 'feel' that different to the days when every reading seems determined to skip over that ever-so narrow target range that we all try to aim for. Days when meter and pump are constantly warbling warnings of imminent doom for being too high or too low. This is particularly the case when, like now, my basal profile needs a little tweaking. Tried and tested approaches, ratios and meal choices lose all reliability. Corrections and doses either seem to disappear entirely or hit home like a sledgehammer. And all the time I'm trying to just do the 'normal' things that I know work.

Albert Einstein is often quoted as having said that:

"Insanity is doing the same thing over and over again and expecting different results."

Well I don't know about insanity, but that's a pretty darned good description of living with type 1 diabetes.

Playing golf on a blustery day

I was reminded this morning of something which struck me during a conversation with my parents last year. Some time ago they took up golf, and as with many sporting endeavours they have embarked on before they plunged into it headlong, devoting a huge amount of time and effort into improving their game. Taking lessons, trying new kit and clubs in the hope of finding some new 'magic ingredient'. And they got better. Much, much better - but never seem quite satisfied with how things are. Always want to improve a little more.

In this respect it resembles diabetes almost exactly.

Now I don't play golf, but from what I can see it appears to have been deliberately designed to be almost unimaginably frustrating on almost every level. For starters the equipment involved and physical practicalities of hitting a tiny ball long distances by whacking it with an unevenly-shaped weight on the end of a long stick almost guarantee that no two attempted shots are likely to yield the same results.

In this respect it resembles diabetes almost exactly.

And even if you could somehow miraculously steel your sinews to perform each swing with robot-like precision it would still not be enough. The nature of the playing field itself, with gusty inconsistencies of wind and constantly variable grassiness/sogginess/bounciness/sandiness of the ground (apologies for the use of highly technical golfer's terms there) could still turn yesterday's perfect delivery into today's disappearance into the lake.

In this respect it resembles diabetes almost exactly.

And then of course, there are those brave souls who venture far afield. Just sticking to the same course day-in, day-out is OK for a while, but soon there is a temptation to reach for a little variety. So rather than restricting themselves to a familiar course where their previous experience might at least count for something, they voluntarily put themselves in unfamiliar surroundings. Each shot becomes a wild stab in the dark based on little more than gut instinct and a laughable attempt calculate (hah!) the interaction of a myriad of contradictory variables.

In this respect it resembles diabetes almost exactly.

On Friday I woke to a BG of 7.3 (131). I ate two slices of toast and because I was going to the gym I reduced my bolus by 80% and set a TBR (temporary basal rate). At the gym I did my usual routine for the usual length of time. I had a measured small amount of fact acting carbs before and after. I tested when I got back and was 10.0 (180).

This morning I woke to 7.6 (136). I ate exactly the same breakfast. Exactly the same bolus and basal tweaks were made. I did the same set of exercises over the same length of time. Ate the same number of fruit pastilles. Got back to 6.4 (115).

Now I'm fairly happy with either to be honest, but the difference in the two days amounts to almost the entire 'range' that people living with diabetes are supposed to aim at. And I didn't change anything.

With Artoo I have a cracking set of clubs, it's just that I'm trying to play golf on a blustery day.

DBlog Week Day 2: Letters to my liver

Topic: Letter writing day...

From: Committee for Arranging Levels Manually (CALM)
To: Liver & Associated Metabolic Effects (LAME)
Further to your previous message, we acknowledge receipt of your request. In triplicate. We are unsure why you feel it necessary to release that level of glucose immediately after the Body rises. However in the light of your insistence, and following consultation with the Delivering Insulin Myself team (DIM) to cover this additional load, we can confirm that your request has been granted.
Sincerely Etc


From: Committee for Arranging Levels Manually
To: Liver & Associated Metabolic Effects
It has come to our attention that on Saturday last, despite the agreement currently in place, you failed entirely to deliver the additional glucose into the blood stream that you have been so insistent is necessary. Furthermore, you made no attempt to alert DIM, with the result that the Spotting Hypos Immediately Taskforce! (SH... oh never mind!) had to raise the alarm. We would like to point out that it was at your own insistence that additional DIM procedures had to be put in place. For you to then unilaterally decide to withhold the promised glucose without notice has caused considerable inconvenience to the Body.
Yours etc

From: Committee for Arranging Levels Manually
To: Liver & Associated Metabolic Effects
Following the concerns raised about your recent performance, it is our unfortunate duty to relate that another complaint pertaining to your behaviour has been received. You may recall last year when you were commended for your gallant actions during the dramatic Overnight Overbolused Pizza Situation (OOPS) where your glucose release was instrumental in assisting the Body. Perhaps you were trying to make up for your lapse in delivery last Saturday? Perhaps although yesterday's dip in BG levels was only minor, you thought it had not been spotted? Whatever the reason, it would be extremely helpful if you could consult with other departments before actioning the emergency Dramatic Unexpected Mega-glucose Protocol. The SH..! team already had the situation well in hand with the Consumption of Assorted Really-tasty Bits System. Your unrequested and frankly overenthusiastic intervention, once again without due communication, has caused rather more problems than were strictly necessary. We appreciate that you were trying to help, but once you started your glucose release you really didn't know when to stop did you?

It has been a difficult time for us all since the decline of Pancreas Industries, but really the only way forward is if we all work together. Having a loose canon around who either deposits, or fails to deposit significant quantities of glucose at various times is making the Committee's job significantly harder.  It is unfortunate that you are still unable to clearly identify your glucose releases  (the proposed system of bright blue triangle on the forehead was rejected). Until some sort of communication system can be installed, what we need from you is measured, gentle consistency, not reckless attention-seeking overreaction.  Your prompt attention would be much appreciated.
Kind regards etc

Walking the line (or why I don't like Mondays)

The other day I was reading on a forum where a fellow type 1 diabetic was struggling with a GP who was unhappy that they were testing too often.

Testing too often...

Someone else's GP had made a suggestion that anything more than two or three times a day was really a bit much. Actually I think they had talked their GP up from a prescription of 50 strips for 2 months. That's not much more than once a day. And certainly doesn't seem to acknowledge the DVLA guidelines for testing before (and every two hours during) any driven journey.

Sometimes it seems GPs just don't understand what it's like to live with diabetes day to day. Here's how it feels:

In the southwest of the UK there is the busy 'North Devon Link Road', for much of its length overtaking is forbidden by a pair of white lines down the middle just a few inches apart. Being a diabetic is like being asked to walk along that line. Blindfold. And backwards. As it twists and turns you'll have to avoid straying into the surging hypo-traffic rushing up on you from behind, or the thundering diabetic-complication lorries bearing down on you from ahead. A few times a day you are allowed to peep out from under the blindfold to see where you are and make a correction. Though if you look more than 6 or 7 times a day your GP may well say that you are looking a bit too often, and they have read a report that said it makes your walk more difficult. You just need to try a bit harder. Or you are trying a bit too hard. You should try walking a bit more towards the lorry side for a while. In fact what you really want to be able to do is to cut some little holes in the blindfold. But unfortunately those CGMS scissors are far too expensive. If you are lucky you might get one for a week, but if it's an old pair the doctor would look though the holes at the end of the week, then sew them up again.

Sometimes for all of us the road is wigglier than others. The traffic is especially heavy. The strategies and methods you usually rely on don't seem to work at all. Or work way too much. The road-walking equivalent of a dizzy spell.

The current cloud on my weekly horizon is Mondays. I seem to need a different set of insulin:carb ratios to avoid drifting teen-wards all day. Especially bad in the mornings, by evening meal while trying to correct I can overdo it and then drift low. Monday is the day furthest from a usual gym session, which might have something to do with it - exercise has a knock on effect for me for quite some time. I'm still having a tricky time of things working out what the current Monday ratio needs to be. I could tell you what it was a few months ago, but that doesn't work at the moment.

And that dear GPs is why we need to test so often. Very sorry if that is slightly financially inconvenient for you.