Guest Post: From Dx to X2 (Tandem T:Slim) by Robert S

This is a guest post by Robert S who dropped me a line via FaceTwit as he had been  writing down his 'diabetes story' but didn't have a blog to share it on. Apparently he has been good enough (or mad enough?) to read my ramblings in the past and offered it as a guest post for sharing here. His story echoes much of my own, and I am very interested to read that he has chosen the Tandem T:slim X2 insulin pump out of the current offerings, as that is one I have quietly got my eye on too. Here is Robert's story. Enjoy!

Tandem T:slim X2

My Diabetes Story, by Robert S

I was diagnosed in 1994 at the age of 38, about 10 years after my older sister who had (eventually) been diagnosed at a similar age. I was given a number of very vague, unhelpful leaflets & sent on my way.

I spent the next few years religiously taking insulin as instructed but with pretty poor results.

Diabetes clinics were a trial for me, with many 'must do betters' but precious little advice on how to achieve this. Several times I was mistaken for type 2 & had some very odd conversations. I probably presented as typical type 2, middle aged and overweight, and most people at the clinic were type 2. However they clearly hadn't read my notes which didn't inspire confidence.

I was divorced during this period so I was very much dealing with it on my own.

The internet arrived & eventually I discovered diabetes forums. Wow, what a revelation! There were other people having the same problems as me. A LOT of people! Bad news for them but a great relief that it wasn't just me.

Importantly some of these people were working to improve their diabetes & describing how.

At the time of my diagnosis carbohydrate 'exchanges' seemed to be going out of favour but for me, at least, carb counting was a very vague concept.

The forums prompted me to do the online carb counting course set up by Bournemouth Diabetes & Endocrinology Centre (BDEC). It didn't solve all my problems but for the first time I felt I had a method for moving forward.

By this time I had moved from 'Humulin I' & 'Humulin S' to a basal/bolus regime, which also helped.

My GP surgery contacted me suggesting that they monitor my diabetes now they had a Diabetes Nurse. Being rather disillusioned by my experiences in the clinic system I accepted.

I enjoy programming & wrote software for my phone to record everything & do some basic dosage computations. My HbA1c had never been really terrible, usually in the low 8s (8% or 64mmol/mol, Ed), but I honestly don't know how. Some hard work got it down to the mid 7s (7.5% or 59mmol/mol, Ed).

So the situation had improved somewhat & I felt more in control.

Sadly, another event encouraged my efforts, as my sister died from diabetic complications at the age of 64.

From the beginning hypos were an almost daily event. The worst being overnight. I've always had good hypo warnings, but at night hypos tend to progress further & I would wake up soaked in sweat.

By 2013 though, the overnight hypos seemed to be worse. I discussed it with the diabetes nurse at my GP practice but the best advice was always eat some supper & don't go to bed below 8mmol/L. I was already doing this.

I'd read about Continuous Glucose Monitors (CGMs) which looked very interesting, but were way too expensive for me and, I noted, you still needed to do finger sticks.

Things came to a head on Boxing Day night 2013. I was away staying (alone) in a hotel & I woke up with a hypo around 1:30. Dragged myself out of bed managed to force a some glucose tablets & a biscuit down me & fell asleep. The next thing I knew I was waking curled up in a ball under the duvet, sweating yet shivering to the point where my teeth were chattering continuously. The worst thing was that I couldn't move to do anything about it. Eventually I fell asleep wondering if I'd wake up.

I decided to self fund a Dexcom G4, at least for a while. By the end of January 2014 I was wearing my first CGM. I watched it obsessively. On the second day I attended a graduation ceremony and was offered a glass of Bucks Fizz & a blueberry muffin. I thought I was being sensible & only ate about a third of the muffin & bolused for it. The effect on my blood sugars was fascinating. I watched as the graph went up, & up & up. I don't remember how high but it was an eye opener.

Initially it was more about the alarms which warned me in time to stop low blood sugars. Still annoying at night but I no longer woke up sweating.

I began to learn from the readings. The first big thing I noticed was a fairly consistent dip in my blood sugars around 1:30 to 2:30 in the morning. This made it difficult get my overnight average to a sensible level & went some way to explaining the nocturnal hypos. I tried varying the time that I was injecting my basal (Lantus) moving it from evening to morning, or splitting the dose. Nothing was really satisfactory.

Someone in the DOC (Diabetes Online Community) suggested changing my basal insulin. After chatting to my GP I moved to Levemir. I had a lot of trouble sorting out the dose, being quite worried that I had to take so much more than I had of Lantus. It was a split dosage & gradual adjustments left morning/evening doses very different, but, it was working. I saw some fairly horizontal overnight graphs, something I'd never ever seen before.

This encouraged me & I also made other adjustments; splitting boluses for some meals, not being afraid to do corrections between meals & so on.

Nothing was perfect but I did feel more 'in control'. Things still went wrong but when they did I was confident I could put it right. My HbA1c went below 7% (53mmol/mol) for the first time.

Using online instructions I built a box of electronics which allowed my Dexcom sensor data to be transmitted to my mobile phone. Thanks to #WeAreNotWaiting I set up a NightScout website to display my data.

This was all great, but hard work. I was doing a lot of injections, up to 12 a day. Also absorption of my basal injections was rather erratic, sometimes as I would expect, sometimes not. The best location was my thigh, but despite rotating sites there were problems.

By this time I'd been reading about hybrid closed loop (artificial pancreas) systems. First the DIY systems OpenAPS, Loop, and AndroidAPS, then the first commercial system the Medtronic 670G. This was exciting stuff but it was clear that first you needed to have an insulin pump. I had in fact been offered one about 15 years before but was then horrified at the thought of being permanently connected to the thing.

I decided I would now like to try one. It was not something my GP surgery could sort out so I had to be referred back to the hospital. This proved to be a long process, several months. I still don't know why. Eventually it went through just before Christmas.

By the time I met up with the DSN at the hospital a month or so later I had all but convinced myself I was wasting my time as control was simply too good?

Sure enough the DSN was impressed with my readings but it didn't help my case. I pointed out that I was doing a lot of injections each day. Not relevant.

"How many hypos do you have?"
"Hardly any."
"Yes, but that's with the Dexcom you are funding?" This wonderful lady was on my side & looking to find a way.
"Lots, nasty ones, that's why I bought it"
"That's it! Now let's have a look at the pumps you could have."

What! Really! To be honest I would have accepted some dusty old pump from the back of a drawer..

But when I focused on what she was saying I could barely believe my ears. I'd done a lot of homework on pumps & she was mentioning the Medtronic MM640G & the most advanced, the 'Artificial Pancreas' MM670G.

Then she added the Tandem T:slim X2 to the list. Again I'd read about it but thought it was only available in the USA. Positively it would soon be linked to the Dexcom G6 I was already using. I love my G6 & it seems to compare favourably with the Medtronic sensors. (Not that I had any personal experience of them).

Uniquely the software (firmware) of the X2 can be updated & in the UK will soon include Basal-IQ, a system which automatically suspends insulin if it thinks you will go low. There is also the promise of a full hybrid closed loop option similar to the Medtronic 670G - again an over the internet update.

I made my decision; the T:slim X2. By mid March after a couple of training sessions, I walked out of the hospital attached to my pump. Very exciting & not a little nerve racking!

We had agreed a 30% reduction in the basal dosage compared to my Levemir. A profile was set up.

During the evening it became clear to me that this was still too much & changed to an 80% temporary basal rate (TBR).

My Dexcom woke me about 1:30. I dropped the temporary basal to 75% and had a small snack. Readings got 'stuck' in the low 4s & eventually I ate again and reduced to a 60% TBR.

So not much sleep but at least I was closer to the required dosage. One thing that I kept thinking that night was "How does anyone do this without a CGM??" Presumably they start with a much more conservative dosage.

I had worried about what to do with the pump at night, and it was a problem. Clipping it on my waistband sort of worked but it would slide along to an uncomfortable place or slip off completely. I now have a 'Spibelt' with a pocket for the pump which is much better.

A week in now & I'm doing remarkably well, some days over 90% of my readings have been 'in range' - between 3.9 & 9.9mmol/L. I know this is probably just a 'honeymoon period', having had type 1 for over 20 years I find I'm waiting for reality to reassert itself & everything to go wrong...

The pump itself is a very neat device. It is small & has a nice clear touch screen. If you are used to smartphones then it is easy to use. It seems well made, time will tell.

I've had some practice with temporary basal rates as mentioned but I've also been playing with 'Extended Boluses' a new concept to me, promising, but I need to experiment.

As with all pumps the big advantage is the same as the big disadvantage - namely that it is always connected to you. It's great that I don't have to remember my pens & I won't miss those injections - I stopped counting at about 50,000 several years ago.

A big advantage is that you have a record of every dose. No longer do I have to wonder 'Did I do that or not?'

There's also the precision of boluses & the in built Bolus Wizard (Calculator). I am learning to trust the IOB (Insulin On Board) figure on the pump. Previously I had tended to intervene too soon when blood sugars rose quickly.

I'm told that changing infusion sets on the X2 is slow, but it seems OK to me having never used anything else.

I'm looking forward to improving my settings & the upgrades mentioned above.

For the first time in my diabetic life I feel as though I am 'ahead of the game', and yes, I know I am lucky.

Diabetes has never been so interesting!

By Robert S.

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.

Thanks a bunch - Spare a Rose 2018

I'm sorry to break it to you folks, but things don't look very good for 'us lot' in the event of a zombie apocalypse. But in the world as we know it, where a life-saving medication has existed for nearly a century, it is horrendous to think that people, particularly children, might die for lack of insulin. But they do. For all our 21st Century self-congratulation about the ever-shrinking world and our technological marvellousness, access to healthcare remains far from universal - even in the allegedly 'developed' world. In poorer countries insulin may be all but impossible to acquire, or afford. And without insulin, we die.

It has been great to see quite a bit more attention given to the annual 'Spare a Rose' campaign from folks in the UK this year.

There is something so elegantly simple and profound about the 'Spare a Rose' concept. It takes a gesture of affection, a token of love, a symbol of intent - one which is so inherently transient and passing - how long to those roses last? A few days perhaps? And turns it into something genuinely powerful. Something almost heroic - saving the life of a sick child. The cost of a single rose equating to a month's worth of insulin.

Spare a Rose addresses so significant a need for people living with type 1 in some of the world's poorer countries. I think it's something everyone living with type 1 diabetes in the UK has considered, even if only in passing, at least once since their fateful diagnosis day. What if I lived somewhere else? What if insulin was very hard to get hold of? Or impossible to afford? There but for the grace of God...

I first came across the idea of Spare a Rose a few years back, and the campaign itself dates from 2013. A few of the great and the good of the #doc have enthusiastically supported the idea, particularly in the US where the idea began. The surge of attention in the UK this year is largely down to everyone's second-favourite irregular-blog-posting chucklefest Chris 'Grumpy Pumper' Aldred. Historically the UK's contribution to this particular charity pot has been rather on the small side, but I suspect, with your help dear reader, that things could be rather different this year.

'Spare a Rose' resonates, I think, because it focuses on a celebration of love. It takes the familiar commercial overindulgence and perhaps asks us to think about what it really means to express love, or care, or affection for others. Both those close to us, and also those we have never met. The idea is that you give one fewer rose to the special someone in your life, and donate that small saving to provide insulin and education for a child with type 1, living in some of the world's less resourced countries. Spare a rose, save a life. And it says something wonderful about people with diabetes coming together and connecting for the common good. Lots of people, giving not very much, all around the world, adding up to literally thousands of saved lives.

Something significantly more than the sum of its parts.

If you would like to save a child's life today, visit lifeforachildusa.org/sparearose and do something amazing.

If this subject has caught your attention and you'd like to know more about projects seeking to ensure global access to essential treatment for people living with type 1 diabetes I'd also suggest you look into #insulin4all which is an initiative of T1international.

Dinkleflakes, diabetes, discussions and #DXStockholm

DxStockholm doesn't make sense, I'm pretty sure it doesn't actually exist. And if it *did* exist, then I'm almost certain I wouldn't make the list. It must be a particularly vivid dream, probably someone else's. I suspect Philippa's Dinkleflake-(me neither)-bacon-pancake-apple-sauce-and-double-cream breakfast is causing some sort of hallucination and I'm in it. Grand, wide, impeccable streets strewn with petals. Impossibly blue Scandinavian skies. More than two dozen storytellers with barely a beta cell between them, weaving tales in half a dozen languages. And yet, this time last week I was there.

But what is it for?

It is very easy to get cynical about these things. As a middle-aged Brit it's virtually compulsory. Any company that puts an event like this together obviously wants something. For all the compliance form-filling about not expecting anyone to write anything, surely it's just bribery plain and simple. Chuck 'em a few treats, show them some shiny new toys and let them spread the word for you through the FaceTwit-o-sphere.

Except that didn't happen.

Stockholm's 20's themed Haymarket Hotel, once a swanky department store

DxStockholm was the second of Abbott's European Blogger weekends. Last year saw one held in Berlin. There was an event in Sydney a month or two ago. I can't speak for the other events, but in Stockholm there was only one short session, led by Abbott's Principal Research Scientist Chris Thomas, that came anywhere close to mentioning product, and that was the only session where all participants were explicitly forbidden from saying anything about what they heard.

The rest of the weekend was an amazing opportunity to meet, mingle and share experiences among a group of bloggers from the UK, Germany, France, Holland, Sweden and Italy. A diverse bunch of people all at different stages of life, and at different points along their own unique diabetes journey (sorry... let's just all agree to forget that I actually used the 'J' word, apparently without irony, and never speak of it again). There was a programme of talks and interactive workshops that covered everything from personal creativity to the potential timing of being subjugated by our newly created super-intelligent hyper-machine overlords. We ate, we chatted, we shared, we learned, we laughed, we moved robot cat ears with the power of our minds.

I am hugely grateful to have been invited. Honoured doesn't begin to cover it.

DxStockholm really did feel like a genuine attempt on the part of Abbott to engage with the patient community. To support it and recognise it as a 'good thing', to encourage it and feed it. Living with a long term condition like type 1 diabetes is easier when you are walking alongside others. Where people can stand by you when you wobble, or understand the tiny, joyful victories of inexplicably well behaved BG levels after some food extravagance. The cloud of voices sharing their stories across Europe as grown enormously since we started writing this blog and I am proud to be a tiny part of that. In the same way that a building feels very different when you know that there is someone else in it - even if they are several rooms or floors away - my life with diabetes is more settled, easier to face, when I know I am connected in some abstract way with many others facing the same daily irritations, triumphs and disasters.

Abbott's theme for the weekend was 'My future, my choices', which led to a very engaging and interesting programme of content. If you'd like a really good summary of the weekend, with some cracking pictures this post by Jen Grieves is a good one. See also this, this, this or this. Honestly! Invite a bunch of bloggers to an event and suddenly you are up to your eyeballs in posts, all better than this one.

A few things that stood out to me over the weekend:
Stockholm is a really cool place. And it's always sunny. Always.

People are inherently creative, even if they don't think they are. Even the simplest snippets of conversation have a unique rhythm to them. Unique insight. Unique voice. You don't have to try too hard, or try to be like anyone else, or do what they do. You just have to be you. No-one on earth can do that like you can.

People and things.

The future is a really exciting place. Things, people and information are getting more seamlessly connected and the Next Big Thing is just around the corner. What sounded like crazy science fiction 5 years ago is happening now and will be everywhere soon. But all of this wearable technology, interconnectedness, captured data, stored knowledge and artificial intelligence has no moral compass. We will have to provide the ethical framework for this exponential future. Above all we will have to remember not to lose sight of the value of people (Dalai Lama quote in that pic rather sums this up).

BioHacking is alive and well outside the diabetes world just as it is with the #wearenotwaiting brigade. Hannes Sjoblad introduced BioHacking as 'science where n=1'. Which sounds very much like what people living with type 1 diabetes face every day. Personal experimentation, data collection and the quantified self. Being aware of what data can be collected and how it can be used for and against you.

Snapchat is apparently a thing. And I still really don't get it.

Mindfulness is relaxing, but not ideal in a warm room at the end of the day with an impromptu scooter rally collecting in the street below.

Separated at birth?

One of the funniest things in the world is waiting while a very hungry Grumpy Pumper is about to be served a handful of toasted cauliflower croutons on an enormous, elegant white soup plate before the (delicious) soup starter is poured. If you've ever wondered if that frown can get any more frowny... I can confirm the answer is a big, solid YES.

Other Europeans are amazing with languages and our laziness and lack of ability as a country makes me cringe. 

Type 1 diabetes likes nothing more that to bring you down to earth with a bump. On Friday, as I landed in Stockholm and stood to move from my seat I happened to notice a young girl in the row behind with a familiar-shaped disc on the back of her arm. It turned out to be one of the German bloggers Lisa - the very first person I met at #DxStockholm. We got chatting and ended up sharing a taxi to the hotel with a few others on the same flight. My German stretches about as far as "Lumpi ist mein hund", "ich bin zwölf jahre alt" and "sprechen sie Englisch" but we all managed to chat away in the taxi thanks to their rather better command of English. Just before breakfast on Sunday morning as people were gathering and chatting away, Lisa suddenly collapsed. A rapid and unexpected crash into hypoglycaemia really knocked her for six and she slumped by the buffet table. Of course, there are few places you could be where you would get more immediate and knowledgeable help, and Lisa was on the way to recovery before the paramedics arrived. But it served as a bit of a reality check to all of us. These events lurk in the corners of each of our lives and while we sometimes splash our insulin around with casual abandon, there is a real and present danger quietly hovering in the background. But even these events are part of our stories. The highs and lows of a life with type 1 diabetes.

As a community we are better together. Different voices, different experiences, different perspectives, different needs and hopes and aims. But all fundamentally connected by our wonky pancreases and our dark sense of humour. Put two or three people with diabetes in a room and they can talk for hours - even if none of them speak the same language.

Huge thanks to Abbott for the opportunity of taking part in #DxStockholm. It was an honour to meet so many amazing bloggers from all over Europe and to feel connected to a wider world.

Obligatory #DxStockholm Group Shot

More about #DxStockholm
A Storify summary by Eglantine LeRoi
Our future, our choices… and our f**king disease by Antje

Googlytranslatable posts...
Abbott DxStockholm by Lisa (including an account of *that* hypo)
About dextrose lulls exit row and more by Sarah
DxStockholm by Sofia

Disclaimer. Abbott Diabetes sponsored my attendance at #DxStockholm and paid for travel, accommodation and organised the event itself. They also treated us to a smashing dinner at Kung Carls Bakficka restaurant on Saturday night and provided a beautiful cookbook on swedish cuisine. I have not been asked, or paid to attend, write about or publicise the event - frankly I think they have been more than generous!

6.5% A1c target - A reply to a comment that got out of hand

I've had a couple of comments on my post about the proposed new HbA1c to aim for in the draft NICE guideline that is currently out for consultation. I was rattling in a 'quick' reply, when I thought - this is *ridiculous*. I can't even see this any more in this tiny box - so I've decided to post it here instead :)

Here are the comments:

Tamer Hassan said...
how do you achieve these numbers?

thanks

Tim said...
These numbers are impossible to reach...
Or at least give me some suggestions on how to reach these levels. Thanks.
Tim

'How to reach these numbers' is a question for your healthcare provider really. Don't just ask some random nutter on the Internet! However (and desperately trying to avoid sounding like Mr Smug of No 22 Smug Gardens, Bigheadshire) I have had a sub 6.5% HbA1c for over 3 years now, so I know that it *is* possible if only perhaps for the lucky few. Plus I've never had fewer hypos in my life with diabetes either - so it's not that I am 'paying' for A1c improvements with the hefty cost of Severe Hypoglycaemia.

I cannot really tell why some people seem to put in so much effort and get such scant rewards, and that is why I think individualised targets are SO important.

But it does seem pretty clear to me that the closer you can get to those standard-issue BG targets (5-7mmol/L waking, 4-7mmol/L pre meals and <9mmol/L by 2 hours after meals) for as many days in the week as you can manage, the closer you will get to these kind of tough, aspirational, borderline non-diabetic A1c targets. My own HbA1c has fallen by around 1.5% in recent years, and I think only around 0.5% of that is attributable to the pump - though Artoo has gone a LONG way to reduce my number of irritating low-level hypoglycaemia dips. When I look back over the changes that I have made in recent years I can see a few things that I think were important. I don't offer these as any kind of guide or advice - it's just what I did.

1. Education. Get access to proper structured education regarding diabetes management. In the UK we have DAFNE which is highly thought of, but other options are available. Things that should be included (in my opinion) are:
   
   1. carbohydrate counting, working out how to check and change insulin:carb ratios for different times of the day
   2. SMBG technique - when to test and what to do with the results *including* basal testing to PROPERLY adjust basal on an ongoing basis
   3. correction factors - when and how to correct (with insulin or fast-acting carbs) to aim bring you back into range without jumping aboard the gluco-coaster
   4. exercise and alcohol
   5. dealing with illness
   If structured education courses are not available in your country/area you can do a lot worse than buying 'Think like a pancreas' (Scheiner), 'Type 1 Diabetes' (Hanas) or 'Pumping Insulin' (Walsh/Roberts) which cover much the same ground. Though the benefit of peer support in group sessions should not be underestimated. Alternatively look at the free BERTIE online course.




2. Test more often AND RECORD THE RESULTS. Find some way of keeping notes daily as you go along. What you are eating, units and timing of doses (how long before... split doses...), exercise, mood, everything! Without a fairly detailed set of records I find it impossible to see what is going on. Personally I still love mySugr for this.




3. Gadgets - seek out new tech that can help you manage your diabetes more easily. It might be a 0.5u pen; a smartphone tracking app, or copy of 'Carbs and Cals'; or it might be a BG meter with a bolus wizard so that you can have properly fine-tuned ratios without having to worry about keeping the maths easy. Additionally, ask your clinic about access to Insulin Pump therapy and CGM.




4. Seek peer support - join a forum or two, join Twitter, read some blogs (thanks!) or even *crazy!* join a local group and meet face to face. Living with diabetes is tough, but it's even harder if you are battling on your own. For everyone there's a little corner of the internet that can provide support, encouragement and shared experiences.

At the end of the day we each have to find our own balance between living a life and managing our diabetes. Somewhere in the middle you'll find your perfect A1c and it won't drain all the joy out of life to reach it.

Good luck :)

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)

Hands up who thinks kids with diabetes deserve decent care and support in schools

I was diagnosed at 21, during the final year of my degree. Not perfect timing I suppose, but I recognise that I had it a whole LOT easier than the thousands of kids who are diagnosed at a very young age and who have to try to balance life with type 1 diabetes alongside the unpredictability, raging hormones, growth spurts and peer pressure of school life.

I. Cannot. Imagine. It.

So hats off to Diabetes UK for their 'Make the Grade' campaign which aims to improve the support offered to children with diabetes in schools.

If you'd like to find out a little about what they are doing and why it is so important, they have produced a nifty piece of You-Tubery here:

https://www.youtube.com/watch?v=IDsUSoDtyjM

Diabetes Speed Dating Clinic Type Thing

Some months ago I found myself looking back over the past few years.

If you've read our blog before (congratulations on your uncommon stick-ability) you may remember that we began writing about my diabetes as a family as a result of an unusually nasty hypo. One which made me question whether I was quite as competent at managing my diabetes as I liked to think I was. Posts from others in the household have dwindled rather, and you've ended up stuck with me. Sorry about that. But I look back over the past few years and realise that I have been on a full-on misty-eyed X-Factor-Strictly-Voice-finallist 'journey'.

I was reminded about this yesterday while reading a blog post by The Grumpy Pumper about his own story of venturing into the Diabetes Online Community (DOC). I have had similar conversations with Dave (@SowerBee) previously too.

It seems to go something like this...

1. Get diagnosed
2. Learn to muddle along in your own way, with varying degrees of success
3. Never, or almost never, meet or speak to another actual real-life person with diabetes
4. Feel slightly isolated and faintly dissatisfied with how you are doing but don't know what to do about it
5. Lose a bit of faith in suggestions made by various healthcare professionals/clinics/consultants/registrars/DSNs (what do *they* know - they don't live with this day-to-day, harrumph etc)
6. Carry on for 5/10/15/20 years
7. *Something* happens
8. Look for support online and/or meet other PWD face-to-face (eg on DAFNE)
9. Lightbulb moments ensue
10. Engage, share, try new strategies, feel empowered
11. Understanding and management of condition is transformed

Now here's the thing.

This is a pattern I see repeating, time and time again in the experiences of others just as it did with me.

But there are still so many people at point 5 or 6. People for whom the standard structure of clinic appointments just isn't quite working, but who either don't realise that 'peer support' like the DOC exists, or who would run a mile from the very idea of it, believing that it is 'not for them'. I know the second group well. I was a fully paid-up member for all the years that deep-down in my heart I knew I was struggling a little, but made myself believe that 'this was as good as could be expected' and 'nothing works'. Of the 300,000 people living with Type 1 in the UK how many are connected with others? 3,000? 10,000? That still leaves the vast majority 'soldiering on' on their own with only an Annual Review for company.

So what can we do for them?

Don't get me wrong. I'm not saying that peer support could fully replace 'proper' consultations with qualified and well-trained healthcare professionals. I am aware that dark, weird and scary corners of the internet exist, where all sorts of odd ideas are bandied about as fact (though these are hard to maintain in well-populated, mixed groups and in my experience the DOC doesn't stand for nonsense). But I'm also aware that there is nothing quite like hearing experiences of someone in your position, who does live with the same condition as you every day. Who faces the same struggles and has tried strategies that you might consider.

I've also spotted another phenomenon. If you attend a 'meet up' of forum posters, bloggers, tweeters or others who live with diabetes you will not be able to get them to shut up. In fact, you will struggle to get a word in edgeways. Questions will be asked, approaches and strategies compared, support offered, understanding and empathy for the sheer relentlessness of it all given freely.

I'm also aware that every day, up and down the land, dozens of people sit side-by-side with other people with diabetes in stony silence.

And this strikes me as odd. Or at the very least a massive missed opportunity.

I've been meaning to write this post for months, but kept putting it off because I could never quite get my head around the details. To be honest I couldn't even work out a proper title for the post (this you will have noticed). But the time has come to just 'put it out there' to see if some brave Consultant or Clinical Lead can do something with it. Someone like Partha perhaps?

Here it is: Wouldn't it be great if there was a way to harness all those wasted minutes in the waiting rooms at diabetes clinics. If there was some way of facilitating peer discussion and support while we are all sat there waiting for our number to come up. At the very least it might prompt some actual questions to ask in the appointment itself, rather than everyone just sullenly descending into smile-grunt-nod territory.

Something a bit like speed-dating. Sit opposite a person or two for 5 minutes, ask them how they are getting on. How long they have had diabetes. Is there anything they particularly struggle with. Do they have the same problem I do with this or that? What do they do about it? Ring a bell, everyone moves around... 'You'll never guess what that last bloke said...' 'Really? Oh I get that too...'

Of course there would have to be some sort of 'opt out' for people who simply can't face the idea. But I'd love it if we could break the unwritten rule in diabetes clinic waiting rooms that 'thou shalt not say anything to anyone'. For people to be actively encouraged to compare experiences and support each other. So that each clinic appointment would combine the very best of both D-meetups and HCP input.

If that was on offer - would you join in?

Why I decided to stop being ‘a diabetic’ - Guest post for DiabetesUK

Words are powerful things.

I had a very interesting conversation with the very lovely Lesley Jordan of INPUT in October last year which made me focus on something I had been mulling over for some time.

It’s odd, because I’ve seen it discussed online and in social media before, often with a level of passion and sometimes outrage that has made me think, ‘Why are you letting yourself get so wound up about that?’

I think it began to make more sense to me when I considered the subject in the light of the way I think about my own diabetes, rather than the words or terms other people might use in conversation or in the media. I think to get too stressed or riled up about what other people say is counterproductive, but I have come to see that it is very important for me to choose my words carefully for the little voice in my head.

I know, I know. Many of you are rolling your eyes, and someone almost certainly just said ‘Oh good GRIEF!’. But bear with me here...

Living with a long term condition like diabetes is hard work. There will be days when you might just breeze along quite happily, barely giving it a second thought, but there will almost certainly be other times when it is a lonely, grim and gruelling marathon – and everything is up hill. It is well established that diabetes and depression often go hand in hand and it is important that we protect ourselves and our sometimes fragile senses of self-esteem. One of the most successful ways of doing this seems to be ‘cognitive behaviour therapy’ (CBT) and an important CBT technique is to adjust your inner voice to help you see situations more clearly and more positively.

I think in words. Conversations with myself. In all the countless interactions I have every day with my diabetes I hear my inner voice commenting on what I am doing. If I am not careful, the background to my every day can become a relentless tide of negativity and judgement.

“I have to test my blood...”
“My control is *terrible* at the moment, my BGs have been really bad...”
“Well I really messed up that carb count there. I should have weighed it, I bet I go hypo later...”

And all of this spills over into any conversations I have with other people too.

So I have been trying to make tiny changes to the language I use with myself and with others when I talk about my diabetes. These seem so tiny and insignificant that it is hard to believe that they could matter at all, but we have a rich and subtle language and every word we choose conveys complex messages to those around us and to our own subconscious.

So now I am no longer saying I am ‘a diabetic’ – a label which defines me, instead I am a ‘person with diabetes’ – person first, diabetes second.

I am trying not to think about ‘good’ or ‘bad’ blood glucose or HbA1c results. Instead I think of them as being ‘in range’ or a ‘work in progress’.

If you ‘test’ your blood glucose then you can pass or fail that test, so it is better to ‘check’ or ‘measure’ your blood glucose. Check your blood glucose level to give you information about what to do next. Check, respond, move on.

Don’t try to ‘control’ your diabetes, ‘manage’ it instead – there are often factors that affect your blood glucose levels that are outside of your direct control (an unexpected liver dump or some other diabetes randomness), but you can use your skills and knowledge to manage those changing circumstances as best you can.

Even terms like ‘should do’ or ‘should have’ can imply some sort of personal failure if something doesn’t quite go to plan. ‘Can do’ and ‘will do’ are more positive alternatives.

There are also changes you can make in the way you think about food, and talk about it with other people. ‘I can’t eat that’ implies that I am being prevented from doing something and that I’m not in control of the decision. ‘I am not going to eat that, because reducing my carb intake makes my diabetes easier to manage’ or even simply ‘I don’t eat that’ puts me back in control – I am making a choice at that moment and I know why I am making it. Next time I can choose again, perhaps differently, but it is always my choice.

As I say, these changes are tiny. It is hard to believe that they would have any effect at all, but little by little they are helping me engage with my diabetes in a more positive way.

What helps you stay positive?

All supporters need support.

Mine is a supporters voice. As Mike's wife I would like to say I am there to support him in all that he needs. I try; though I freely admit to getting as fed up of diabetes as everyone else, I am not a particularly patient person. Anyway, I think the point is that I try. I'm pretty sure we all want to try, all us supporters; but it is not straight forward.

I recently met with a friend who was diagnosed with diabetes over ten years ago. I visited him in hospital, he had pneumonia along with a heap of complications which sounded suspiciously diabetes related. I asked him whether he had type 1 or type 2. He said, "I don't know." I'm not sure how well I hid my shock, I was pretty much lost for words. My friend lives with his mother. He was diagnosed when he was thirty. He is not adept at communication.

I also know his mother, who I am sure has all the feelings that any mother has when they find out their son has diabetes. I know from Mike's mum that that can include guilt, fear, and the desire to wrap in cotton wool and never let out of her sight ever again. My friend, unlike Mike, did not talk to his mother, and his mother, unlike Mike's, did not like to push for answers to the thousand questions simultaneously forming in her head. She has had to cope alone. She hasn't felt able to admit that her son's inability to communicate has left her at a loss as to how to support him. So what she does is try to look after him. She makes sure he always has a good big bowl of cereal for breakfast, and that there is always a choice of puddings on hand after his evening meal. He happily tucks in. The only piece of advice from a dietitian she has ever been present to hear is that a combination of grapes and banana is a really bad idea.

As the mother of a diabetic diagnosed in adulthood, she has never received any support. Mike's mum was in the same position, but blessed with Mike and then of course I came along and took him off her hands, again with no support and it is scary, but Mike helped me through. I am aware that Mike and my friend are at opposite ends of the communicative spectrum, most people must be somewhere in the middle. Mike is on his way to a long, healthy life, I wouldn't be surprised if he outlived me (my family have a history of heart disease). My friend is on his way to dialysis, losing his sight, losing his feet and dying before his mother. I believe his control would be greatly improved if his mother had been offered support. My guess is that most adult diabetics don't live alone, that many don't cook their own meals, so the responsibility for the control of their condition does not fall entirely in their hands. It can and should be shared.

All supporters need support.