Posted by on Monday, 15 April 2019

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.

Posted by on Tuesday, 9 April 2019

Libre Limbo

As of the beginning of April the new national NHS England criteria for obtaining Freestyle Libre on prescription came into effect. This is who it says should have access to Libre on the NHS:

  1. People with Type 1 diabetes OR with any form of diabetes on hemodialysis and on insulin treatment who, in either of the above, are clinically indicated as requiring intensive monitoring >8 times daily, as demonstrated on a meter download/review over the past 3 months OR with diabetes associated with cystic fibrosis on insulin treatment
  2. Pregnant women with Type 1 Diabetes -12 months in total inclusive of post-delivery period.
  3. People with Type 1 diabetes unable to routinely self-monitor blood glucose due to disability who require carers to support glucose monitoring and insulin management. 
  4. People with Type 1 diabetes for whom the specialist diabetes MDT determines have occupational (e.g. working in insufficiently hygienic conditions to safely facilitate finger-prick testing) or psychosocial circumstances that warrant a 6-month trial of Libre with appropriate adjunct support. 
  5. Previous self-funders of Flash Glucose Monitors with Type 1 diabetes where those with clinical responsibility for their diabetes care are satisfied that their clinical history suggests that they would have satisfied one or more of these criteria prior to them commencing use of Flash Glucose Monitoring had these criteria been in place prior to April 2019 AND has shown improvement in HbA1c since self-funding.
  6. For those with Type 1 diabetes and recurrent severe hypoglycemia or impaired awareness of hypoglycemia, NICE suggests that Continuous Glucose Monitoring with an alarm is the standard. Other evidence-based alternatives with NICE guidance or NICE TA support are pump therapy, psychological support, structured education, islet transplantation and whole pancreas transplantation.However, if the person with diabetes and their clinician consider that a Flash Glucose Monitoring system would be more appropriate for the individual’s specific situation, then this can be considered.
Other requirements:
  1. Education on Flash Glucose Monitoring has been provided (online or in person)
  2. Agree to scan glucose levels no less than 8 times per day and use the sensor >70% of the time.
  3. Agree to regular reviews with the local clinical team.
  4. Previous attendance, or due consideration given to future attendance, at a Type 1 diabetes structured education programme (DAFNE or equivalent if available locally)

Well this all sounds very promising for my perforated fingers... but unfortunately I find myself somewhat in Libre limbo.

I had my annual toe-tickling / BP / weight check appointment at my GP surgery towards the end of March, and mentioned these new criteria and asked about Libre. The nurse who runs the diabetes reviews at my surgery is also one of the DSNs at the hospital pump clinic that I attend, and was able to tell me that all Libre requests in my area were going to be handled in 'secondary care' (that's 'at the hospital' for those that don't speak fluent Healthcare Professional). The suggestion made to me was that since there was not really time in people's regular clinic appointments to deal with all this stuff, that special extra sessions would be being arranged for anyone who was interested in Libre.

At some point fairly soon I'm pretty sure I'll be contacted for my annual* pump clinic appointment (last one was over a year ago). So now I don't know whether to wait and see whether I get an appointment and ask the same nurse I saw a few weeks back (but sat at a different desk) whether I can get another appointment at one of the Libre sessions. Or whether I should try to work my way through the labyrinthine appointment telephone system to try to speak to someone and ask a) if they've ever heard of these extra clinics and b) whether I can come. Then wait for that appointment to come through and see what they say.

* actual timings may vary

Frankly the very thought of it all is exhausting, and I am unable to even summon the energy to decide which of those options is the least teeth grinding, let alone make any of the necessary phone calls.

EDIT: The day after I posted this, I got the letter to book my appointment for pump clinic, so it looks like I'll be rolling with option 1. Next available appointment was mid July, so I've a little while to wait yet I think.

In other Libre news, as part of my position as one of the PWD representatives on the Diabetes Technology Network (DTN) I was involved in reviewing and contributing to a set of excellent video resources to help both people with diabetes and their families, along with nurses and clinicans get the most out of the Freestyle Libre. As part of the project I offered my own meandering thoughts on living with Libre, and took part in a live 'webcast' of the videos. If you missed it you can catch up with the videos and also a recording of the Q&A session on the Association of British Clinical Diabetologists website. The full set of videos and further webcasts will be added as the weeks go by and in all should provide an excellent source of information and guidance as more and more people get access to Freestyle Libre.


Disclaimer. DTN/ABCD paid my train fare to get to the initial meeting to discuss/review the course content, and then to the video recordings. They also gave me a thank-you card with an entirely unexpected voucher in it which was very lovely of them. I was not paid to take part or write this post, and all opinions shared are entirely my own. I mean... who else would want them?

Posted by on Saturday, 9 February 2019

T1D Rise of the Machines 2 - February 2019

Not the machines you are looking for... Public art near TechUK.
This time last week my mind was well and truly boggled by this point in the day by a torrent of information and the potential of shiny new things just around the corner (or already here). I was attending Type 1 Diabetes: Rise of the Machines #2 as a +1 of Kev Winchcombe, the #GBdoc's second favourite Nightscout Genius and holder of the Self Deprecating Diabetes Dad of the Year Award for the 9th consecutive year.

I'd heard a bit about the first Rise of the Machines last year and it sounded really interesting. The opportunity to go was actually very timely for me, because almost unbelievably this year sees the 4-year warranty expire on Threepio, my trusty and occasionally SmartGuarding MM640G insulin pump. As a result I am beginning to consider what options might present themselves for me to try next. The pace of change in diabetes technology seems so rapid at the moment that it's very hard to keep up with what has launched, versus what is being massively plugged but is still confined to the drawing board, versus what has technically launched but remains unavailable to anyone as no clinics either have them or are trained and equipped to dish them out. As an additional complication there are now various grassroots home grown combinations of different technologies that allow a degree of automation of insulin delivery (things like Loop, OpenAPS and AAPS). If you've never heard of any of this stuff prepare yourself for an impenetrable minefield of jargon, abbreviations and acronyms. Luckily for you Kev has put together a very handy dictionary of terms as part of T1resources.uk.

The main opportunities for improving T1 diabetes care are:
1. Improving the ability of a person to self-manage
2. Encouraging peer support
Everything else, whether technology, clinical, education or whatever falls into those categories

Partha Kar

After introductions from Ben Moody of TechUK and Dr Partha Kar, a packed programme of fascinating presentations followed. I took copious notes thinking I might write a detailed account, but in reality there was simply too much to cover here so you will be relieved to hear that you are only going to have to wade through what struck me as highlights.

Chris Bright
Chris Bright, semi-pro footballer and futsal supremo kicked things off with an engaging and inspiring PWD perspective. How different pieces of technology had formed part of his story with T1D, and supported him in exercise, activity and sport over the last 20 years, including the establishment of the Diabetes Football Community.

Next up were industry presentations by some familiar, and not-so-familiar names. Roche/Eversense, Abbott (Libre), Dexcom, then later Medtronic, Diabeloop and Tidepool. It was very interesting that many of the speakers from the companies lived with T1D themselves. The stories from the companies shared much in common. Technology is improving and continuing to improve. The more information (data) people have, generally the better they are able to manage their T1D. Some were able to talk about semi-automated insulin delivery and 'hybrid closed loops' which have either launched or are in the works.

Interoperability - buzz word of the day
One nice feature of the day was the round table discussions that took place after the presentation slots. The first of these involved the device manufacterer speakers who got something of a roasting from an audience which included several people who are actively trying to push the available technology to work harder, and are often frustrated by incompatibility and sandboxing where different devices are locked into their own predefined arrangements or are designed only to work within their own 'ecosystems'.

Interoperability (the ability of one device or technology to speak to a number of others) was certainly one of the buzz words of the day. The device manufacturers mentioned it, including the JDRF 'open protocol' iCGM standard which in development. But they were asked pointy questions about their 'bilateral agreements' for products in the works which will be designed to only work with devices from an agreed (and presumably negotiatied) partner manufacturer.

This is certainly well in evidence in the current market place and is all too often part of announcements about future tech. So Dexcom works with x and y, while Libre are collaborating with z, meanwhile Medtronic devices mostly try not to talk to any other devices if at all possible. While this almost certainly makes sense from a company perspective, it was a source of tangible frustration from users who might find a more open mix-and-match arrangement much more empowering.

The company speakers were clearly a bit nervy and uncomfortable committing to anything, preferring warm noises about 'taking steps' and 'working towards'. Abbott's decision to encrypt the data from its new Libre2 raised quite a few eyebrows, and when the explanation offered was that it was 'for safety reasons' one audience member described such a notion as abhorrent, "It's MY data! Give it to me."

The presentations by Medtronic, Diabeloop and Tidepool also shared many similar themes. Semi-automation of insulin delivery by smart systems that learn and continually adapt to the user's insulin needs as they ebb and flow. CGM data used to make minute-by-minute adjustments to reduce risk and severity of both hypos and highs, with the user only really needing to input carb count estimates for meals. All of these systems using their own algorithms and set-ups to attempt to increase the two emerging holy grails of T1 management 'time in range' and 'quality of life'. A technology which is both extremely easy to use day to day, but which gives improved outcomes. It was fascinating to hear the few snippets of detail that were sprinkled into the presentations - as always, I suspect the devil would be in the details, and whether or not it was possible to make any of these systems adapt to your own diabetes quirks. Tidepool's significant ongoing work to get a version of the 'open source' APS code approved for use by the FDA is very exciting - initially they appear to be partnering Omnipod as a delivery system. As for Diabeloop - the large Brexit-shaped elephant in the room was acknowledged in the subsequent discussion as they will not be able to launch in all European countries at once, and we could find ourselves rather on the back burner.

3 of the best
Clinical research and HCP perspective was offered in a round-table discussion jointly chaired by Diabetes UK and JDRF. Roman Hovorka (Cambridge), Pratik Choudhary (Kings College) and Lala Leelarathne (Manchester) shared their views on the current state of diabetes research and ongoing clinical trials from Loop and APS, to islet cell transplantation and encapsulation. The significant pace of change was clearly evident. In general the move from fingersticks to more continuous data and thereafter towards more automated insulin delivery. One of the challenges ahead would be to improve access to the emerging technologies and make that access more equitable. Additionally the challenges of accurately recording and monitoring 'quality of life' in health economic terms would become increasingly important in the future. Technology that you cannot access is little use. As is technology that is so onerous to use that it makes life miserable.

A brief break for a slightly delayed lunch allowed us all to catch up and compare notes from the morning's sessions.

Unfortunately I was not able to stay for the very last session of the day, but I was able to catch the first session after lunch which involved an overview of the currently available open source options chaired by Tim Street. One of the most emotionally charged and powerful moments of the day was presented by Jacob and his mum who had struggled through the required self-build steps in order to give her sporty teenage son the option to use a closed loop insulin pump. The brief video of Jacob's birthday morning and the look on his face where he unwrapped a box containing pump, reservoir, set, Android phone and CGM sensor caused more than one person in the room to wonder if it hadn't perhaps just got very dusty in there. Jacob's mum shared that it had been on leaving the first T1DRoM conference a year before that they had decided to take the plunge.

HBA1c graph showing the moment James starting with AAPS
James Woodman's encouraging presentation detailing his own journey towards looping left many people wondering if looping might be right for them too. While acknowledging that it looks scary and formidable from the outside, both of these stories had at their heart the sense that, "If I can do it, so can you". In James's opinion, the barrier is less about technical difficulty and more about self belief. And also, I would suggest, in securing the components and consumables needed to run the various systems.

All in all it was a very interesting day, and certainly gave me a lot to think about between now and December. But I will save those ponderings for another time.

If you'd like to watch the presentations, a video of the day has been posted on YouTube here.

Posted by on Sunday, 30 December 2018

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.

Posted by on Tuesday, 18 December 2018

Rage Bolus - a Christmas classic

Disney Pixar's Inside Out. One of my absolute favourite films.
I've seen a few things about rage boluses in recent months and it did that rare thing of making me think, "I should write a post about that".

I can't remember exactly when I first came across the term 'rage bolus', but I think it was quite soon after discovering of the power of peer support and shared experience. I am almost certain that it came from that most legengary of #DOC legends, Kerri Molone Sparling's Six Until Me, and I'm pretty sure that it was Kerri who came up with the phrase originally.

If you live with diabetes and use insulin, even if you've never heard it before, you will instantly know exactly what is meant by a rage bolus. It was phrase that made me go, "Aha! Yes!! I know that thing." Type 1 diabetes can be incredibly frustrating to live with. For all the illusion of 'diabetes maths', and there is no question that sometimes carb ratios and insulin sensitivity factors can and do work (some days / most of the time / once in a blue moon), it is also absolutely the case that there's a lot more going on than food + dose = reliable results. And when things go a bit off track you can feel that you have got it wrong (and sometimes you have!). A sense of personal failure. Feeling like an idiot. So frustrating. Other times you know that you have done all the things you are supposed to do (scrupulously counted carbs in a carefully chosen, healthy meal that you've eaten many times before with reliable results) and still your BG ends up in chaos. Doubly frustrating. Or you just decided to treat yourself (after all everyone else with their functioning pancreases and none of this to worry about were having a lovely time) and then you see it all coming back to slap you in the face, even though you tried your best to work it out. Triply frustrating.

Sometimes there are only so many small, carefully-calculated, properly-spaced correction doses you can try and wait grinding your teeth and stewing in double figures for hours (or days) willing your BGs to stop inexorably rising or stubbornly unmoved before you go OH FOR GOODNESS SAKE and whack in a big ole slosh of insulin to try to get things moving downwards.

And as we approach Christmas I am aware that we are heading into 'rage bolus' season. Meals are likely to be less predictable. Less easily guessed or measured. You may have a little sniffle, or be drinking sugary alcohol, be surrounded by endless nibbles, or be less active than usual, or exposed to any number of other factors that might make decent dose-guesswork much harder.

Let me just be perfectly clear about this - rage boluses are generally a terrible idea. They almost always result in hypoglycaemia, sometimes in a really nasty and stubborn and/or scary low. And crashing from one out of range BG to another at the other end of the scale is likely to make you feel even more frustrated, annoyed and difficult to live with.

So why do we do it to ourselves?

Because, frankly, sometimes it WORKS. And like an addicted gambler feeding endless coins into our BGs fixed-odds betting terminal we have reached the end of balanced and logical assessment of likely outcomes. Sometimes high BGs are the result of a significant underestimation of carbs. Or perhaps it's a dose that hasn't absorbed properly. There are circumstances where we are in 'insulin deficit' of a number of units. And where the food already eaten is still feeding glucose into the bloodstream, and where a dose isn't likely to reach maximum effect until an hour after you grit your teeth and go for it, there can be long, long hours between a measured, cautious correction dose and seeing any effect at all.

Repeatedly, I have heard respected diabetes clinicians suggest that one of the reasons that rage boluses are a bad idea is that taking more insulin doesn't make it act more quickly, it only makes you fall further in the end which leads to likely hypoglycaemia. I think it would be much easier to resist the rage bolus urge if this was actually true. The simple, demonstrable fact is that taking a larger BG correction does make it act faster to reduce high BGs. We know this because we see it happen. And to pretend that it doesn't really isn't going to help me in a consultation. If I take a 0.5u correction dose (as suggested by my pump or smart meter) then after a reasonably predictable onset time I will have a proportion of that 0.5u available to act on my errant BG. If I take a 5u correction, after the same onset time I will have much more circulating insulin available. It may not be exactly mathematically 10x as much, but it will be more. And If I've rage-bolused before and checked after 30 minutes, then an hour, an hour and a half... I will have seen this happen.

Rage boluses do reduce high BG faster.

It's just that they also add chaos onto more chaos.

Sometimes I will make this calculation in my head:

OK so I've currently got annoyingly high BG. I also have some insulin already on board. Along with that, I also have half a meal which I may (or may not) have hoplessly inaccurately estimated that is feeding more glucose in. Some of which will be accounted for by the dose that's already acting. Or possibly it won't. Solution? I'll dose a big ole slug of insulin in now to get things moving in the right direction over the next 2 hours, then depending on how things go I will eat some extra carbs later on to mop up the last bits of the dose.

I mean... what could possibly go wrong?

I once referred to this frustrated act-and-counteract ballet as uncertainty tennis (particularly where my guesses and second-guesses follow in double-quick time and everything overlaps far more quickly that it can possibly have had enough time to actually take effect).

Try to give yourself some head-space this Christmas. Give yourself a little more leeway. Perfection is an illusion. BG perfection doubly so. No one wants to live with a grumpy pancreas-impersonater muttering and grumbling after every meal.

And if possible try to resist the rage bolus urge. Except for the times when it works perfectly and brings you back neatly into mid-range. I mean... those are just awesome! (and incredibly unlikely)