Posted by on Sunday, 1 January 2017

Nothing like as '2016' as it seemed

Parliament (or possibly Hogwarts?) - one of a number
of inexplicable invitations in 2016
When I was imagining writing this post, the inevitable looking back over the last 12 months, I thought it would start 'last December' but as is the way of things these days, I have missed that particuar deadline and now I have to start with the significantly more cumbersome 'in December 2015', or possibly 'a little over 12 months ago'. It's a good job you are not here for the quality of the writing - or the frequency of postings for that matter. Whatever the reason for your stumbling across these witterings I'd like to say a massive THANK YOU for reading, commenting and all the encouragement you offer though FaceTwit and all those other new-fangled Social Medias. Genuinely, sincerely - thank you.

2016 was, by many people's reckoning, a bit of a git of a year. There were some things that happened that many people would have preferred had not, choices were made that left some people feeling distinctly 'Huh?!' or occasionally 'Oh NOOOOOOOOOO!!!!' and death seemed to be stalking around picking off an extraordinarily large number of beautiful, creative and talented people to such an extent that it is really hard to remember more than a few of them without feeling slightly overwhelmed. Humanity's ability to be generally awful to each other seemed to be conspicuously in evidence and even the weather and the stability of the earth's crust itself appeared to want to get in on the act.

And yet, when I look back over things closer to home, I realise that we as a family had a pretty great year while all of that was going on. Our eldest left to study away from home, found some great housemates and is having a wonderfully creative time. Our yougest embarked on a new adventure, effectively the next stage of their life, and is exhibiting extraordinary maturity and creativity. And we added a new hairy member to our househood who ensures, as has been remarked upon, that at least once every single day, each of us breaks into a massive grin and/or hysterical laughter.

Early last December (except-that-technically-it-wasn't-because-December-finished-yesterday-so-I-missed-it-by-one-day-but-anyway-you-know-what-I-mean-because-December-2015-sounds-too-long-ago) I took up an invitation to speak at the Royal College of Physicians in Edinburgh. This was the first time I had been asked to speak to healthcare professionals and share my 'grass roots' experience of living with type 1 diabetes, and it was as rewarding as it was utterly terrifying. In January I was invited to talk about what it had been like contributing as a lay member of the Guideline Development Group for the updated NICE guidelines for type 1 diabetes in adults at Partha Kar's #talkT1 event which later gave rise to t1resources.uk. In March I received sponsorship to attend the Diabetes UK Professional Conference where I spoke about my experiene of using the Freestyle Libre glucose monitoring system and a few days later was invited by the wonderful May Ng's to speak at the Children and Young People's North West Network Education Day in Leigh. June saw me invited by Abbott to join bloggers from across Europe at DxStockholm for a hugely inspiring weekend. More invitations followed to present to parents or children with diabetes at the CYP East Midlands Network Day and to healthcare professionals at the Yorkshire and Humber CYP Diabetes Network. In the meantime a funding application was granted for a clinical trial of a new intervention to tackle problematic hypoglycaemia for which I have been asked to assist with patient involvement (much more on that later). Along with some really interesting and useful meetings as part of the Medtronic 'Bloggers and Advocates' group I was also invited to share my experiences of hypoglycaemia as part of their excellent Hypo Heroes campaign for World Diabetes Day 2016. There was also an entirely unexpected invite to a meal at the Houses of Parliament, but to be honest I have a suspicion I may have dreamed that one. I mean... what would I be doing at the Houses of Pariament?!

The growth and launch of T1resources.uk from an embyronic 'wouldn't this be a good thing' idea to actually seeing the site filling out and gaining traffic has been a particular joy of 2016 - and seems to be one that will continue to grow in value and presence during the next 12 months.

Diabetes-wise 2016 has not been without its struggles for me. While all those 'peaks' and moments of excitement were going on, sometimes it felt like I was living in a very deep and shadowy chasm, perhaps largely of my own making. But more recently (and particularly following my most recent Pump Clinic appointment where some of you wisely advised me to opt for 'painful honesty' with my team) I have felt more myself about my T1. While it is still intensely irritating at times, I feel considerably more on top of things than I have for a good long while. And improvements in BG levels? Well those too may come in time.

Looking forward it is hard to know quite what to expect from 2017.

I have made one small, but potentially quite significant decision though. For the last two years I have occasionally used Abbott's Freestyle Libre to either see me through particularly chaotic periods of blood glucose (Christmas, birthday, summer holiday... that sort of thing), or to act as an opportunity for a reset when things have drifted somewhat. All of the extra data make it slightly easier for me to separate wood from trees and to tweak basal profiles and/or meal and correction ratios.

For 2017 however, while I may still occasionally use the Libre I have decided divert some family funds and to finally invest in the transmitter and charger to allow me to occasionally use CGM with my MM640G. If I can manage to stretch sensor-life to 10 or 12 days then the ongoing sensor costs are not dissimilar to Libre and, of course, come with the added benefit of SmartGuard, which worked so well for me before. I will only know whether this level of occasional use will be of any benefit to me if I try it (research data shows that better outcomes come for those who can use for 70% of the time - which is sadly significantly outside our funding ability). The cost of the transmitter is an eye-watering £500 and it is only warrantied for 12 months' use. Nevertheless the system was so effective for me when I used it before that I am keen to see if I can replicate some of the same effect with an odd sensor every so often. And, of course, whether the CGM data will allow the same 'reset' opportunity that I currently gain from a fortnight of Libre wear every month or two. My hope is that the transmitter will continue to function beyond the 12 month warranty if I treat it gently and talk to it soothingly every so often.

Time, and subsequent blog posts here, will tell.

Posted by on Friday, 30 December 2016

T1 Resources - a long overdue blog post

As is almost inevitable at this time of year I've been finding myself reflecting over the last 12 months in recent days.

I'm hoping to post something as a bit of a 'look back - look forward' in the next day or two, but wanted to give this long-delayed post about T1 Resources some room of its own.

T1resources.uk is a website that acts as a gateway to rated, reviewed and reliable online resources and peer support that can help people self manage their type 1 diabetes.

Some of you may already have stumbled across what I had been describing earlier in the year as 'Project Enormous' but for those that haven't it was an idea that grew out of a conversation that a few people had at 'Talk T1' an event that Partha Kar put together in Southampton in January last year to explore new models of care for type 1 diabetes.

The idea particularly resonated with me and it was something that I wanted to be part of because it was something that Dave Sowerby and I had discussed many times before. We have both been living with type 1 diabetes for many years (he since childhood, me since my early 20s) and we found each other during the early rapid growth of what gradually became #GBdoc. Without wanting to speak for Dave, I think it's fair to say that we both had a very positive experience of meeting other people online after years of relative isolation. The sharing of experiences, insight, suggestions, the understanding of the common struggles and frustrations, along with pitch black humour had a profound affect on me. Time and time again I would say, or hear someone else say, that they learned more online in 6 months than they had in the previous 10 years at clinics. Or that they *finally* felt they had people around them who understood what they were going through, based on lived experience rather than textbook theory.

But the question always remained - how could those positive effects be spread to a wider group? As a proportion of the 400,000 or so people living with type 1 in the UK, those connecting with each other online was clearly a miniscule fraction. And part of the nature of these blossoming interactive communities is that they can at once look impenetrably complex and full of well established groups and relationships. Finding a way in can look a bit daunting - even if you know there is something there to be found.

Add to this the complexity that some stuff on the internet is really useful, helpful and good, while other stuff is, not to put too fine a point on it, utter nonsense, and the challenge becomes greater. Particularly when you hear people expressing the wish that this stuff should be available on prescription, or at the very least be suggested to those newly diagnosed by their clinic or doctor.

But how could a doctor recommend something so intangible? What if the stuff people first happened upon was hopelessly inaccurate, dangerous or just dreadfully waffly. Perish the thought - someone might stumble upon these ramblings - surely all hope would be lost!

Wouldn't it be good if there was a place where you could find the 'good stuff'. And know that it had been checked by both doctors and 'real' people with T1.

And so, some of us living with type 1 diabetes who were connected to the diabetes online community, and some visionary healthcare professionals who could see the positive impact that peer support and social media interaction might have as part of a person's diabetes toolkit got together and made it.

What is T1resources.uk?

Put simply it's a starting point. A way in. A collection of blog posts, YouTube videos, websites and all manner of other content that have been reviewed by both a person living with type 1 diabetes and a qualified HCP. These are categorised and classified to make them easy to find and should give you a decent starting point if you are looking for information about any aspect of living with type 1 diabetes. And because everyone is different and wants different things, you can filter to only see stuff in particular formats (eg blog posts or videos), or that comes from particular sources (NHS, JDRF, DUK etc). If you know of something really helpful that is not listed you can suggest it. If you think something on the site is particularly useful you can rate it (or leave a comment) so that others who visit can see what people are finding helpful. For those who are venturing into Social Media for the first time there are brief details of what each channel offers and what to expect, along with advice about staying safe when looking for healthcare information online.

The site soft-launched in September and continues to grow and develop. It is great to see more people creating accounts and expressing opinions by rating and recommending resources. I had always hoped that there would be some community involvement as part of it. Best of all the reception among healthcare professionals has been amazing. I have been fortunate enough to be invited to speak at a couple of events during the year (more on those later) and whenever I have mentioned T1resources.uk it has been warmly welcomed with people asking for cards and details to pass on to people in their clinics.

I am hoping that the site continues to help people over the coming years.

Huge thanks to Sophie Harris, Pratik Choudhary, Kev Winchcombe, Laura (Ninjabetic) Cleverly and of course Partha Kar for their help and support and without whom this project could absolutely not have happened. Would be great to hear what you all think of it.

Visit: www.t1resources.uk

Posted by on Saturday, 19 November 2016

Facebooking my diabetes for #WDD2016


Monday this week was World Diabetes Day. It's is one of those made-up things that come around every year and hope to raise awareness of something or other - World Sparrow Day... International Day of Happiness... World Toilet Day... One of my own favourites is 'International Talk Like A Pirate Day', but I digress... Aaaaarrrrrrrrr!

World Diabetes Day is held every year on November 14th, good ole Freddie Banting's birthday (one of the guys who was instrumental in the discovery of extracting and using insulin in diabetes treatment). It was nice to see a WDD themed Google Doodle make an appearance, something that us pancreas-impersonators have been asking for for many years.

A few years ago, inspired by something I saw on Twitter from Scott Hanselman, I decided to document a day's-worth of diabetes interactions on Facebook as they happened. People seemed surprisingly interested, and so having given them a few year's respite I thought it was time to Facebook my diabetes again. Here's how it went...

06:22 
Slightly early start to the day but the routine is the same. First thing, even before kettle goes on is to check blood glucose level. Make small hole in finger, squeeze out drop of blood and apply to test strip. Result: 8.3. Ideally this would be between 5.0 and 7.0. Give insulin for breakfast. Estimate single slice of toast as 15g of carbohydrate (12g for the bread, 3g for a dab of marmalade). Insulin pump suggests 1.3 units of insulin for the carbs, plus 0.6u to correct the slightly high BG level. In addition I also need an extra 1u for my liver releasing extra glucose when I get up (part of the body's Circadian Rhythm). Dose delivered I will now wait at least 30 minutes to eat breakfast.

Via comments:
Regarding the carb value of bread: I deliberately choose Burgen 'soya and linseed' as it is a) tasty b) slightly lower carb and c) relatively low GI

Regarding waking BG level: The official guidelines are 5-7, I think. The 7 is to give some wiggle room for a rise after eating. Usually pre-meal guides are 4-7, but at breakfast they make it 5, because regularly waking in the 4s is associated with increased risk of undetected nocturnal hypoglycaemia which can be a real problem. 

06:50
Check pump display to remind me when I had dosed for breakfast. I have been waiting 30 minutes to eat for so long I often instinctively get this right. I thought to check at about 28 minutes today which is about perfect. I need to leave a gap between dose and food because the 'rapid acting' insulin I use is not actually very rapid. I cannot afford getting distracted though as if I wait too long the insulin could start working before the food kicks-in and my BG levels could drop too far. It's a balancing act! 

07:17
Breakfast of champions. I have tried many things over the years but this seeded bread is fairly reliable for me (everyone's reaction to different foods is frustratingly and confusingly different). It has slightly fewer carbs than regular bread - 12g per slice vs the more usual 18g - and the seeds help to slow absorption. It is anything with carbohydrate that raises blood glucose levels, not just sweet things, so that's bread, rice, pasta, most fruit, anything made with flour, grains, root veg, and then all the sweet and sugary things too. My task is to match the carbohydrate I eat with doses of insulin. And then to match the speed of absorption of the food with the timings of the doses. I cannot hope to get that right all the time. But the lingering threat is that if I get that wrong too often I am at risk of blindness, heart attack, stroke, kidney failure, limb amputation (high levels) or unconsciousness, coma or death (low levels). Fun eh! Over the past 25 years I have spent more time thinking about the potentially disastrous outcomes of my efforts to manage my diabetes than is probably good for a person's mental health. 

07:57
Time to take this moppet out for a walk. Activity and exercise need more fuel than resting and tend to make insulin work more dramatically, so I need to allow for that, even when it's something as insignificant as a 35 minute wander. My insulin pump allows me to reduce my 'background' insulin level, so I am setting a 70% Temporary Basal Rate for 45 minutes. 


08:52
Back from dog walk, just checking to see how things are going. 11.5mmol/L. This is too high, it looks as though I could have done without the TBR I set (though tomorrow might yield different results even if I do exactly the same things). Ideally this should be no higher than 9mmol/L 2 hours after eating so I am adding .7u of insulin with the aim of getting me back to 9 and leaving the insulin already 'on board' to deal with breakfast as it continues to digest. 

09:14
It's 9:14 and I realise I have already forgotten to mention something. I had a shower, so I disconnected my insulin pump temporarily, capped the tubing and the cannula that is inserted, currently, on my back. After the shower I primed the tubing and reconnected. So many of these interactions are so automatic I barely even notice them any more. 

10:02 
WDD Update: (It's RELENTLESS isn't it?) 10am and feeling a little bit indigestion-y / dry-throated. This *might* be connected with my raised blood glucose levels, but my symptoms of high BGs are patchy to say the least. It is probably because I have just been thinking about it since breakfast and it's all in my head. Or maybe it isn't? Tempted to check my blood glucose level again, but the thought of another finger prick so soon after the others (and especially because I think it will be another high level) is not encouraging me. 

I am also feeling a bit hungry, but adding the complexity of something carby at this stage will just create even more confusion/uncertainty so I am having a handful of nuts and a cup of tea instead. It's not that I *can't* have a couple of biscuits - it's just that the mental effort, and potentially disastrous BG outcomes kinda drains the joy out of them.

Via comments
Regarding feeling hungry when BG is high: I think it's because you body knows you have fuel on board, but it also knows that the energy is trapped in the blood and not making it into the cells. So it asks for more fuel. Which potentially makes the problem worse. Which makes you hungrier. Rinse. Repeat...

The really REALLY irritating thing for me is that my clearest symptom of low blood glucose is ALSO 'feeling a bit hungry'. So every time I feel a bit hungry I have to work out whether my BG is too high because of what I've just eaten, too low because I've over-compensated or, perhaps, that I might be just 'a bit hungry'. Pah! 

10:40
My Twitter feed is ablaze with #wddchat16 today. A 24-hour curated international Twitter conversation with different countries hosting an hour and handing over to each other. Thousands and thousands of people connecting, sharing experiences and supporting each other. I find great support to help me manage my T1 by connecting with people online, but I am going to have to resist getting involved on Twitter today or I am *never* going to get anything done! 

12:30
Lunchtime beckons. As you can see, the carefully considered correction doses I have administered today have had absolutely no effect, even though all of those doses have now finished working (approx 4 hours). I am beginning to feel the sluggishness of high BGs emerge. Lunch is a 2 slice Burgen bread sandwich and an apple*. 25g carbs for the sarnie and allow 20g carbs for the apple, so 45g total. My lunch ratio is 1 unit of insulin for 11g carbs. Thankfully my pump can do the maths for me, along with calculating a correction based on 1u lowering my BG by 3.5mmol/L and the difference between my current BG and my ideal mid-range target. Confused yet? Dose for lunch is 4u, plus another 1.5u correction for the high BG. I will wait rather longer to eat this time, with the intention of being more in range before adding more carbs. A tricky timing challenge as the longer I leave it the more steeply dipping my BGs will be when I eat, and the food will take a while to get going itself. It can feel like trying to hit a perfectly weighted long-ball pass to a sprinting striker... in the rain... into a headwind. 

* I tend to eat the same things for breakfast and lunch week in, week out. Partly habit, but mostly to reduce the number of variables by sticking to things that have been 'fairly reliable' (Ha!) in the past. That way if results are not as expected I can discount carb-estimation and food-absorption-speed errors, and it becomes more likely that my insulin needs have changed again.

12:46
How long has that been? Ah. OK, my instinctive 30 minute recheck. Will leave it a while and BG check again.

Via comments
It must be exhausting being you: The thing is... I recognise how amazingly lucky I am to *only* have T1D to live with. And to live with it in the UK with access to insulin, tech and the unbelievably amazing NHS. If I'd been given a list of LTCs to pick from aged 21, it would have been a pretty good option.

13:12
Just checked again. #BGnow of 9.3 after a full hour. Not perfect, but it will have to do. If I don't eat now I'm likely to get too absorbed in what I'm doing and forget.

15:42
This is getting a bit annoying now. Walked to Coop without TBR as things have been running high and I'm still too high on return. If things were working I would already be back in range. Correcting with a further 2.5u. Pump recommended 0.7u as I still have 0.7u 'insulin on board' from lunchtime. Initially thought about 1.5u, but have added another unit. Essentially I am now dosing what I think is 'slightly too much' because 'enough' isn't doing anything. I will need to keep an eye on it towards eve meal time. Starting to feel a bit crabby/irritable.

Via comments
Could raised BGs be an issue with the infusion site? Good thought, Not sure though... Would expect a much more dramatic rise with a cannula fail rather than being held steady through subsequent meals. This just feels like walking the wrong way on a travelator. Have been expecting my basals/ratios to shift soon. Looks like this could be it?

Could it be degraded insulin, having got too warm?  No it's quite a fresh one. I will take a look at tomorrow's results and see whether it's a pattern or 'one of those days'

17:43
Yay! My first in-range result of the day. Must remember to change my insulin pump battery before I go out for the evening. Last thing I need is Threepio wailing away when I'm trying to play guitar.

17:56
Just prepping for evening meal. Here's my insulin pump working up the mathematics for the dose. Feel very lucky to have access to tech which can fine tune doses like this. And if I decide I want to up my insulin intake by 10% tomorrow I can adjust the settings and let it work out the new ones. My diabetes may not behave reliably/predictably, but at least I can wrestle it with some precision on one side of the equation!

19:54
Typical, just when you can't watch what is going on and just when you really don't want to dip low. Several handfuls of Skittles to the rescue. Don't want to repeat the brain-fog for the next lot of songs.

Via comments
Regarding hypo warning signs: The ones that sneak up on me at that level really scare me. I tend to get good signals at least between 3.5 and 3, this time I had lack of coordination and slight sweating as clues. Didn't get my more usual anxiety/hunger until on the way back up.

21:42
That's the thing about T1 diabetes. You really can't rely on it to behave consistently. Just when you have been running high all day, and without rage-bolusing for a meal you get an unexpected dip. I suspect a slight mis-estimate of carbs for my evening meal, and not quite enough of an insulin delay for noodles (some carbs take longer to hit my system and an insulin pump allows me to deliver the dose either fully or partially spread over a number of hours). Still surprised the handful of extra fast carbs I ate as a 'safety cushion' disappeared so completely. 

22:02
Another check, and as I half expected I slightly over-did the hypo correction. Always tricky treating a hypo when you have insulin active, and when you don't want to risk a double-dip. I added a 30 minute 0% temporary basal rate just in case. Looks like a few Skittles too many. Another correction delivered. Not my best day of BG control. But not my worst either!

23:36
This is the last of my posts as part of World Diabetes Day. I waited up to allow that last correction to settle in. 

In Sesame Street style, today has been brought to you by 9 blood glucose checks, 110g of carbs, 29.475 units of insulin (40% background, 60% meal/correction). Just an average day with T1D (with above average BG levels). 

Now wake up tomorrow and do it all over again. And the next day. And the next. And the next...


 

Posted by on Tuesday, 25 October 2016

Night-time nonsense. Perfection isn't possible.

The darkest hour, just before dawn, yesterday
I stumbled across this little bit of research again today. And while I know I had clocked it in the past, and was aware of it - this time it came as a huge relief.

I have not been feeling altogether cheery about my diabetes of late. Off and on for something getting on for a year I have been feeling more than usually grumpy and disheartened about it. I have written (mercifully few) ranty grumblings about it every so often. Partly driven by a couple of clinic appointments where I somehow managed to spend the weeks before and afterwards twisting and distorting either real or imaginary conversations into spirals of judgement, impossible requirements and self-destructive behaviours. Quite reasonable and well handled suggestions suddenly becoming a cloud of frustration and rage in my head, and a lead weight in my heart.

Many people would describe this as 'diabetes burnout', but that always sounds a bit too dramatic and significant. Mine is perhaps more of a 'diabetes weariness', with occasional outbursts of 'OH FOR GOODNESS SAKE WHAT ON EARTH IS THE POINT'.

Diabetes is such a mind game. Confidence and self-belief count for a lot for me. I do better when I feel things are going better, and I am much more likely to go off the rails or make (deliberate/knowing) poor choices when my levels are all over the place anyway.

You may recall that one of the changes I had been trying to make related to my remaining overnight hypoglycaemia. Nothing like as bad as it would once regularly have been (I have not had any severe hypos either in the day or overnight for years) but time spent hypo overnight is still something I really want to reduce further. Well after the best part of a year, and having tried a whole bunch of different approaches (some disastrous, others not so bad) I'm not sure I'm very much further forward. Without continuous monitoring it's hard to be 100% sure, but it seems I will still dip below 4.0mmol/L at some point on something like 3 nights in a month. I am now running most of the other nights significantly higher and that has resulted in an increase to my A1c by something like 0.5%-1%. On the plus side though, my number of BG checks below 4.0mmol/L last month was slightly lower than normal (whatever normal pretends to be).

So some things are a bit worse. And other things are a bit better. Well that all sounds familiarly 'life with T1D' to most of you I'm sure.

But here is the thing - if you, like me, struggle with variability in levels overnight. There is a LOT we can do to reduce it. There are strategies that we can put in place to really help. But it will never be perfect.

And we have to find a way to make peace with that.

During the day, you can do your best to reduce variability - to make good food choices, to dose carefully, to make adjustments around activity and exercise. And all the time you can watch and check and see how you are getting on. Check. React. Adjust. Move on.

What this piece of research, published in Diabetes Journals in May this year, demonstrates though - is that overnight insulin requirements are likely to be even more variable than those during the day. Think about that for a minute. In almost 2,000 days and nights that were measured and compared there was more variability in insulin need overnight than during the day. More variation with NONE of the variations in food, activity and all the rest.

That doesn't mean that it is not worth trying, of course. We still need to do the best we can to make up for our errant pancreases letting us down on the whole insulin-production front. Keep checking, reviewing and adjusting. Throwing in the occasional overnight basal test every now and then ("Hooray!", said no one ever). But it is worth bearing in mind, if you are struggling this week, that you are not on a level playing field. What works well most nights might let you down tomorrow, and that is not your fault.

Perfection is not possible. All we can do is our best.

Link: http://care.diabetesjournals.org/content/39/5/830.short

Posted by on Wednesday, 12 October 2016

64 Days with the Minimed 640G - A year on

Someone at Medtronic expressed an interest in some of us who video-blogged as part in their '64 days with the MM640G' trial to post a follow-up after a year to say how we were getting on. Well I slightly missed the deadline, but such is life at the moment. I still have a post waiting in the wings that I've been wanting to write since March. Somewhat unexpectedly I have managed to get it put together this week - partly because the battery state on my pump was right for something I wanted to share.

I still really like the MM640G. It's a bit big, it's a bit clunky, and it's a bit of an ugly-duckling in the looks department, but it still works well for me. And if I were choosing this week from the current crop of available devices, I would opt for it again. So much of it does exactly what I want... rock solid dose reliability, great handling of temporary basal rates and basal patterns, handy home screen showing most of what I want instantly. And if I could afford the wizardy of sensors I know from experience that I would love it even more.

Unfortunately, what tends to happen with me, the longer I live with a piece of diabetes technology, is that I find more gripes and niggles with it. So fair warning, this is a bit nit-picky.

So here you go... some moaning about repeat button presses, slightly over-cautious menu-language, that darned screen unlock thing, the flippy-floppy belt clip and, perhaps most importantly the battery check that will reject a battery if it has anything less than absolutely full charge.

Enjoy!

Watch the video