Diaversary #6 – A New Hope for a Rogue One

a_long_time_agoFeelings on diaversary days fluctuate from year to year, a couple of years ago I was lost, last year not so much.
I apologise in advance for words so mixed up they’d feel more at home in an Alanis Morrisette song.

In a hospital far, far, away

The Imperial Forces of Langerhans attempted to hold Princess Amy hostage six years ago but the Rebel Forces managed to get her back and into safety since. The Empire tried to Strike Back in January and capture the Princess in its Death Star, which it calls ‘transition clinic’, but it was no match for the Rebel Forces who floored them and their evil plans with a polite ‘No’.
(I’m tempted to throw in references to Ewoks here but I won’t.)
By the end of the year the Princess decided she was happy to move to the Death Star though, so the Rebel Forces accepted this happily, after all it’s her life.
My role in this saga is of course Chewbacca defined by my inability to say much of use and the need for a shave.

Who said hospital food was bad?

The hospital’s canteen is good, even if their trays are a little damp.

Use the force Amy

Amy’s management has gone from strength to strength and one thing which made me realise this was when my friend Mike (@everydayupsdwns) and I were having a meal in March ahead of our presentations the next day. Mike counted the carbs in his meal and asked me how much I would have guessed.
“I have no clue”.
I didn’t. Amy’s done her own carb counting for ages now, so much so that I’ve forgotten everything. The realisation dawned on me that this is something I can no longer help Amy with, it wasn’t a great feeling.

Darth Vadar rendered speechless

In the last two appointments the Sith Lord has been rendered speechless when confronted with the blueprints used by the Rebel Forces and the Princess to undermine the Empire’s power. The blueprints, also known as Nightscout Reports, prove that the Princess’s knowledge is great and she has harnessed the force to become a Glucose Jedi, using science but ultimately becoming a master of the Art.
NOTE: I feel bad with the whole Darth Vadar reference thing: Amy’s consultant is lovely and has always focussed on Amy’s wellbeing rather than NICE target A1c’s, she’s always spoken to Amy rather than us – that’s great – and has always been there to answer any questions Amy has. Vadar(!) has also said she’ll continue to help Amy in her journey to her chosen career path in the medical profession.

The draw of Tatooine

Amy informed me this year that as soon as she’s 18 she intends to visit Tatooine in her bid to become a Rogue One 😉
Maybe Yoda’s greatest student was talking about Amy when he once said…’feisty one you are‘.

A New Hope from The Little Shop of Watto

(Okay, I’m mixing stuff up, but Amy had a few parts in the school’s 2016 production of Little Shop of Horrors).
Watto owns a junk shop, a shop containing lots of parts people no longer find useful in their quest for glucose graphs the shape of a light sabre. We’ve known Watto for a long time and call him by his nickname, ‘eBay’.
img_20161229_082613071Our collection of components has grown and grown and now contains three insulin pumps, two Intel Edisons, two Explorer boards, two batteries, and an array of other bits.
Maybe soon I’ll start looking into the plans of the Diabetes world’s own Princess Leia (@danamlewis) and Luke Skywalker (@scottleibrand); those plans are called OpenAPS.
I’ve been looking into this for a long time now, Amy wasn’t ready but now it appears she’s interested. Whether I’ll have the ability to make this work and when I’ll get the time are another thing altogether.
Hopefully these components will be the winning combination to use in conjunction with xDrip to create a DIY Artificial Pancreas.
img_20161229_082633953

I wonder if by the next Diaversary we’ll hear this?

World Diabetes Day 2016 and Blogaversary 4

londontoparisSo maybe this blogging was a fad after all, I’ve hardly kept it up-to-date, happy instead to read the blogs of some of the community’s new bloggers, like Amber.

Real life is more important right now

In fact it’s not just the blog which has taken a back seat to real life, Diabetes has too, well at least it has for Amy.

Aim for the sky Amy, diabetes won’t stop you

Life for Amy has just been so busy at the moment, with school, with friends, with gigs, with hobbies.
She’s decided to aim for the sky as far as education goes, striving to get herself into a position to apply to undertake a medical degree at one the UK’s most prestigous universities. At this stage whether she gets there or not is neither here nor there but one thing’s for sure: she has not considered that having Type 1 will stop her in her quest.
With the attitude to life and diabetes she has I have absolute faith she will achieve major successes in life.

Technology takes a back seat…

November 2015 saw Amy going to strength to strength with Nightscout and her Pebble watching displaying her glucose levels.
Then her Pebble broke and I never got round to fixing it.
Then eventually she decided that she wanted a break from CGM when her Dexcom G4 transmitter battery died.
From a parental point of view and especially as a member of the Nightscout UK team I’ve found it a little difficult to come to terms with a lack of CGM data, after a couple of years relying on it.
BUT, this is Amy’s diabetes, this is her choice and regardless of what I’d prefer I must respect her decision.
For the moment she’s wearing the occasional Libre and this is generally working very well for her, giving her poor fingers a rest from jabbing with a lancet. Libre is enabling her to see her data and we’re taking such a back seat that I have not looked at any of her data, whatsoever.
We’re so lucky that Amy is on top of her diabetes and things are going well, if she wasn’t and things weren’t maybe we wouldn’t be so relaxed, but for the time being technology is not the answer.

But Thank God for technology

One year ago today we were waking up to the morning after the terroist attacks in Paris.
I’d taken Jane to Paris for her birthday celebrations, it was the first time we’d ever left the kids (aged almost 18 and 15) alone, so it’s darn typical we’d go on that weekend to that city.
But Thank God for Nightscout, which enabled us to take that well needed break, knowing that we could see how Amy was and if needed get help to her, or nudge her sister into helping, or so on.
Without Nightscout, we’d never gone away that weekend.
Without Nightscout, Jane and I would never had the fantastic time we had.

A year of presentations

For me, this last twelve months have been somewhat challenging, but has brought forward some fantastic opportunities and experiences. I’ve always hated public speaking, in fact I won’t even speak up in a pub or a group, preferring instead to listen to everyone else, so the idea of doing presentations used to freak me out.
After the presentations at CWD FFL 2015 I’ve launched into seeking opportunities to present Nightscout to other families and health care professionals, all for awareness only.
First it was the opportunity to visit the Houses of Parliament with INPUT Diabetes for the Medical Technology Awareness meeting.
Back in January, along with Stuart, Kate and Amy, we presented two long (1.5hours) presentations to JDRF and Diabetes UK, giving them a run through of everything Nightscout.
A few days later I got the great opportunity to present about our life with T1 at Dr Partha Kar’s TalkT1 event, and of course slipped in a fair few slides about Nightscout, try stopping me.
Then in April Dr May Ng asked me to present at the CYP North-west education day, talking about our life with Diabetes and of course Nightscout and OpenAPS got some slides too.
Again in April I presented Nightscout to the National Diabetes Psychologists meeting.
This year of presentations culminated with my biggest opportunity yet: presenting Nightscout to NHS England. Again this was done purely for their awareness, our Nightscout team of presenters (me, Kate, Matt) expected nothing but we got so much more – blimey, just realised I never blogged about this…must do that soon.

And some fundraising too

I was amazed that my ‘let’s get a team of Diabetes Dads cycle London Nightrider‘ post on our Facebook group resulted in a team of around 30, raising close to £20,000 for JDRF. I enjoyed all the organising of this and giving us Diabetes Dads the chance to meet up.
I’m also pleased to have helped my friend Kelly organise of group of 16 of us to cycle from London to Paris. Between them they raised thousands for several local Diabetes charities, enabling the purchase of CGM to help others in need.

A few other things I’m proud of

Getting Carlo to link his Libre-scanning Glimp app to Nightscout.
In April as part of promoting Diabetes UK’s 100 Things book, Jane, Amy and I appeared on a local TV channel. It’ll be the one and only time I let my eyebrows get a media outing. I was really proud of Jane and Amy, they did brillantly.
JDRF’s Type1Catalyst event saw both me and Amy in Parliament, unfortunately though for Amy several hours walking around Camden meant she spent most of the time in Parliament trying to get out of a hypo.
I’m proud to be one of the founding members of the new T1 Resources web site. Sophie and Mike really have done a great job of organising such a great resource.
Most recently I’ve enjoyed being a judge for the QIC Diabetes Awards.

QiC Diabetes Awards 2016: being a Judge

QiC Diabetes logo“No thanks, it’s not really my sort of thing” I said on the phone a few times to Emma, “but if no-one steps forward I’ll do it”.
Emma was organising the Judges for 2016’s Quality in Care (QiC) Diabetes Awards and was seeking to get a non health care professional (HCP) person on each of the three award judging teams.
No-one else stepped forward.
“Damn it” I thought, never wanting to backtrack on a promise.

QiC Diabetes Awards: a bit of background

The QiC Diabetes Awards is a programme designed to award some of the very best projects, initiatives, people and groups within the UK Diabetes arena. 2016 sees it celebrate its sixth year.
This year they were 11 categories, 8 of which were for projects and 3 were for people. See the list here.
Many of the winners and finalists from previous years are featured on the QiC Case Studies page for others to view and learn from, maybe taking on the initiative/project or adapting it to suit their organisation.

What the judges do

This year the judges were responsible for just 7 of the project categories and these are split across three judging teams.
Bob Swindell, Andy Broomhead and I were the non-HCP people and we each took our place on the teams which were chaired by Simon O’Neill (Diabetes UK), Dr Paru King (Derby Hospitals) and Dr Sheridan Waldron (Children and Young People’s National Diabetes Network) respectively.
Each team had to decide on the winners, finalists and commendations for each category.
My team had two categories to review – of course I’m not going to let on which ones.
After all the applications are finalised they are sent by email to each judge who then reads (and re-reads in my case) each application scoring each section against a defined set of criteria. We received them on 14th June 2016.
You have about a month to do this before the results grids are sent back to the organiser, who collates everything ahead of Judging Day. We had to send ours back by 11th July 2016.
After Judging Day you sit back, relax, and look forward to attending the QiC Diabetes Awards evening which you automatically get an invite to.

Paperwork, paperwork

I was sent an email with all the applications for my team’s two categories, 25 applications.
“Well, this won’t take long” I thought, incorrectly.
25 applications, most of which had 10 sides of A4. I don’t think I was prepared for the amount of paperwork I had to read through, and as someone who doesn’t really read it was all a bit of a shock to the system.

It’s 2016, why did I agree to be a judge this year?

If I’d really thought this through I never would have agreed to be a judge this year, another year maybe, but not this year.
June 2016 saw a month long feast of football in the EUFA Euro 2016 finals.
Early July saw the Tour de France start.
It turns out for me these were both far more compelling than judging applications for an awards programme.

Don’t judge my judging process

I guess everyone’s judging process is different, I’ve never done it before but my process worked for me and I’d improve it if I were ever to judge anything again.
On average I took at least one hour per application and judging it on its merits against the framework proved not much of a problem, but after doing that I needed to make sure it was fairly judged against the others. On the two days where I locked myself away for 6 or 7 hours this was much easier, but with football and cycling to watch this wasn’t so easy.
I made notes about every mark I gave for every section for every application as I was worried about being questionned on Judging Day. Turns out I needn’t have worried so much but making notes helped me through the process.
Finally I’d done them all and emailed Emma my completed results grid, merely seconds before the deadline time. Which was pretty much like my whole life at school.

Judging Day beckons

I was very nervously excited to go to Judging Day, at Chandos House in central London.
As a non-HCP and clearly the least educated person in the room I felt nervous about stating my views, holding my ground, challenging others and being a valuable member of the team.
But this would be the first time I’d ever met Becky or Anne in person, after years of chatting on Social Media, and I was really excited about that. Plus I was looking forward to saying hi to a few people I’d met before: Simon, Andy, Kate, Phil, Mayank and Bob.
The judging day itself was good, fairly low key with great open discussions.
The wine, cider and meal out afterwards with Anne and Bob was even better, even if I did later that evening fall victim to Bob’s mission of upping his step count for his One Million Steps Challenge for Diabetes UK.

Making a difference

My worries about making a difference as a non-HCP were unfounded. My views were encouraged, listened to and respected and I left feeling I’d made a real difference, raising awareness about some things, highlighting inconsistencies the HCPs hadn’t noticed.
I was initially worried about being seen as a representive of others in the community – I’ve seen some pretty negative comments to this effect about others – but I soon realised that I’d been invited myself, not as a ‘patient rep’. Otherwise I’d have refused to join in.

Would I do it again?

Yes, I would, without a doubt.
Along with the caveat of not doing it in a year which features a major football tournament.

DISCLOSURE
No-one had any input into the writing of this article other than me.
I received compensation for my time spent being a QiC Judge, for the hours spent doing the reading, taking the day off for the Judging Day, and travel was also paid for. On the plus side I’ll be using this exclusively for Amy and her diabetes stuff.
I also got a free lunch and Lord knows I love a free lunch, it was a damn fine meal and the company I had was pretty good too.
I also got a no-expenses-paid invite to the QiC awards on 13th October where there’ll be cake and I intend to up my ‘wages’ by consuming vast quantities of it.

T1Resources – hopefully a good place to start

That brief comment Partha made to Mike about discussing a new idea got me intrigued.
“If I can help, let me know” was my reply as we left the TalkT1 event in January.
A few weeks later that idea was discussed between a few of us and so started the project which became T1Resources: a new web site for Type 1 Diabetes information, where linked content would be reviewed by both a health care professional (HCP) and either a person with diabetes (PWD) or a parent of a child with Type 1, like me.
T1Resources.uk

A new idea?

There’s already so much information out there on the web but who knows what is valid, what is inline with clinical/medical advice, what isn’t, what’s just plain wacky and finally what’s that never-going-to-work-Type-1-cure-with-cinnamon.
T1Resources aims to address that issue by having links to useful information, with each link being reviewed by both one HCP and one PWD/parent.

A project with some backing

To work well and be effective this new site would need to get some decent (non-financial) backing, so Sophie – the project lead – started contacting many of the UK Diabetes industry charities and groups such as Diabetes UK, JDRF and INPUT.
So far it’s got the backing of two of the main charities and many of the groups frequented by the UK’s leading Consultants, Doctors and health care professionals. It’s early days so hopefully more will follow.

Reviewing the resources

Each HCP/PWD review is done separately from one another and it is then decided whether or not that resource is added. I’m not going to blog about the process as it’s constantly evolving at the moment.
In short if both HCP and PWD think the resource is valuable it will be added, if both say it’s rubbish it won’t be added. Anywhere in between and the editorial team will step in.
Of course, it’s not quite as simple as that.

Choosing the resources

Initially the team compiled a list of potentially usefull resources, several hundred were reviewed, many were rejected, the remaining were reviewed properly and one by one added to the site – something we’re still doing actually.
But that’s not the vision for T1Resources, the vision is that this resource is for PWDs/HCPs, by PWDs/HCPs, so there’s a page for suggesting a new resource to be reviewed/added. Not all suggestions will be added but each will be reviewed.

A few “thank you”s from me

To everyone involved in this project up to now and in the future, this couldn’t work without a lot of dedication. From the tiniest of ideas to hopefully a very useful web site, I look forward to seeing this site grow.
To Sophie for leading this project and tying it all together, this never could have happened without your input.
To Mike for all your tireless work. I doubt any of us really know just how many hours you’ve put into this, of the work you’ve given up to do ‘just another bit’, to the family events you’ve now doubt missed out on. I love design of T1Resources – apart from the bits I don’t 😉 Hopefully you can put your feet up soon for a little rest.

DISCLOSURE
In my usual Pay It Forward stance all my time spent on this project has been free, same for everyone. Even Mike has paid for the site/hosting himself, although I sincerely hope he’ll be getting that money back soon.

Promoting Diabetes UK’s 100Things book, World Health Day, and a short TV appearance

Diabetes DadIn what seems like a millennium ago I submitted some travel tips to Diabetes UK for their upcoming book 100 things I wish I’d known about living with diabetes. I instantly forgot about it until they contacted me to say out of the 1100 total entries one of mine had been picked.

Tip43When you’re travelling or going on holiday, double up on the amount of suppplies you need, split them across two bags and ALWAYS keep a hand on them. (Both of our daysacks fell out the back of a Tuk-Tuk in India just before a 15-hour train ride!)”

I was pleased I got 43, it’s an old favourite Level 42 song of mine, although ’42’ would have been a better number of course.

When the book came out I was pleased to see not only my tip in print but those of friends like Helen and some from celebs like TV legend Phillip Schofield and Hairy Biker Si King. Sylvia from Diabetes UK got in touch and I asked if I’d be happy to promote it, a media article maybe. “Of course, no problem”. The press release didn’t gather much interest except from a local TV channel.
“Would you go on TV Kev?” asked Sylvia.
“Erm, no thanks”. [repeat 100 times]
“Are you sure?”
“Oh, okay then” I relented.
My plan was that as That’s Solent TV only broadcasts in the region so I knew relatively few people would see it, especially if I didn’t tell them when it would be on.

Filming and clip release was planned for World Health Day (7/4/16) which this year was Diabetes related. Shan, the journalist, filmed lots of clips, some of me, lots of Amy and lots of Jane, both of which are far more eloquent than me. We spoke about the travel tip, Amy’s diagnosis, a lot on the DIY tech of Nightscout and xDrip, and Amy gave a demo of her latest gadget the Freestyle Libre from Abbott.

So many clips were shot for the proposed 3 minute clip and I wondered how on earth Shan was going to be able to create something from them, but she said well by focusing on information about the book and Type 1 diagnosis and symptoms. Shan did say later that she hopes to do a second clip featuring all the DIY/medical technology we spoke about.
I was really happy with Shan’s accuracy of information given all the bad press journalists get – due to Daily Mail articles, etc., so well done Shan.

All in all, I’m happy with the overall result although I’m likely to start a new book on video tips* Here’s the video, which in true Winchcombe fashion overran its original time slot by double, it ended up 7 minutes 10 seconds long.

*Kev’s Tips for being on camera
1) Tape eyebrows down and stop yourself from looking like you’re Roger-Moore’s-Eyebrow-Stunt-Double.
2) Don’t ever say the word ‘taxi’ as if the reporter has never heard that word before.
3) Don’t just tidy up the bits of the house you know the filming will take place in. Especially don’t move all the junk in the areas you clean up and put them onto the table they definitely won’t film.

Diaversary #5

wpid-img_20150515_145525703_hdr.jpg
Amy at the Lilly National Paediatric Team
Conference in May

Another year passes, another 122 insulin pump set changes, another 3500 blood glucose checks, another 2000 carbohydrate guesses and insulin doses and numerous daily Type 1 Diabetes management tasks.

I’m no longer feeling the ‘Meh‘ I felt this time last year but I’m glad I felt like that then as it’s spurred me on for this year.

Amy’s diabetes management has never looked so good. She has – and we have – put a lot of work into getting her levels within range, her glucose fluctuations smaller. As a result her HbA1c yearly average looks favourably against the new NICE target of 6.5%. It’s no small feat, it takes a lot of work and I hope it isn’t taking its toll on Amy’s soul. Some days it appears it’s done with ease, others it’s a struggle, some days fluctating levels seem minimal, but rarely.

Dexcom G4 CGM, Nightscout and xDrip have played a big part in this year’s reduced A1Cs. I built our first xDrip in early January and it’s been used on and off since then – we self fund so full time CGM use is out of the equation. It’s given us lots of data to enable us to pin-point insulin:carb ratios, insulin sensitivity factors and durations, all of which are necessary to help with the many insulin doses and corrections required. We’ve got better at altering her basal profile, a task we do together, and this too has made a difference. After a trial Amy requested her very own white pebble watch to view her glucose readings on, leading me into a world of smartwatch envy which I just couldn’t battle for long 🙂 My watch will easily – and silently – wake me if Amy’s glucose levels drifts into areas we’d rather it wasn’t, meaning I can get up and treat her levels before she drifts back off to sleep and wakes up within range in the morning. I believe this management is priceless in enabling Amy to progress into the top sets of most of her school classes.

With all this CGM data there is a price to pay in the name of there perhaps being too much data. You can be teased into a world of constant alterations, boluses and TBRs and often it’s a good idea to take a step back. It’s a very fine line which I’m not sure we’ve figured out properly yet. That’s a good thing about enforced CGM breaks, no alarms.

I’m so proud of Amy’s management of her Type 1, she doesn’t sing and dance about it, she doesn’t seek limelight nor sympathy, she just gets on with it no matter how much it may hurt her body or mind that day. We give her the encouragement – sometimes a lot – she needs but ultimately she calls the shots. As time moves on she will call more and more shots but for the time being this is a joint effort through and through.

2016 is possibly set to be a great advocacy year, particularly for Nightscout and I’m proud that Amy will be by my side for some of this.

An unsuitable hypo treatment

On Saturday night, after a fantastic day at the #GBDOC Conference we returned to the hotel with some snacks for the evening to accompany our hilarious game of Cards Against Humanity. Amy bolused for the carbs she was going to eat, putting on a combo bolus and all was set. Hours later we went to sleep in our cosy hotel room, with Amy sleeping two feet away from me in her bed.

Within 30 minutes I was woken to a beeping followed by a vibration noise, it was her Animas Vibe pump alarming us to a hypo. Everyone slept through. I checked DexDrip on my phone and could see she was stable, arrows going straight, unfortunately not upwards but fortunately not downwards.

I waited. Nothing changed, so I woke her up.
“Amy, you’re low, take 5 dextro tabs please and go back to sleep.”
I turned over and went back to sleep.

30 minutes passed and I’m awoken again, reach for the pump and set she’s low again, she went up a little after the hypo treatment but went back down again.*
I put on a temporary basal of 0% – effectively turning the pump off – and waited 30 minutes but nothing really changed as she still had some insulin on board.
I didn’t understand it though; those Dextro tabs should have brought her up to 7 or 8 mmol.

“Amy, wake up, you’re hypo again.”
“I don’t understand, I took some Dextro. Hold on, they tasted minty.”
“Minty?”
*confused faces*
I shined my phone’s light on the floor and there it was, along with the explanation why she was still hypo.

colgate

So there we have it, toothpaste is clearly not a suitable hypo treatment.
Who knew?!
🙂

* clearly something to do with waking up, becoming active then going to sleep again.

Diaversary #4 – meh!

smiley-face-meh_designWas it really four years ago that Jane took Amy to the Doctors to find out what was wrong? Four years since the Doctor took that simple blood test and called us within minutes to tell us to go to hospital? Four years since my daughter found her childhood all gone?

We all try to be quite positive about life with diabetes in general but not today, today sucks. Big time. Turns out I don’t quite feel as positive as I did last year.

Whilst I truly believe that Amy’s diagnosis has actually helped in certain ways (determination to succeed, family health) I’d give it all back in a heartbeat if it meant Amy never had to do another set change, or finger prick glucose test, or think about this condition ever again.

The year ends with Amy having her lowest HbA1c yet at 7.2% and with us knowing how we could get it lower if we chose to try a little more. There’s no doubt that we’ve done some great Diabetes related things this year and that mainly focuses around the other people/children with Type 1 Diabetes, or their parents, we’ve met this year. At the moment it’s hard to focus on that.

So forget all those fancy electronic devices, your bionic pancreases, your smart insulin; just figure out how to swap my pancreas with hers. That’ll do me, let me take this burden away from her.

I’d like to think that these words will be the last time I think about Diabetes today. But I know it won’t.

Blogaversary 2 on World Diabetes Day 2014

Spinnaker Tower on World Diabetes DayIt’s hard to believe yet another year has gone by in the Diabetes world, here’s a little bit about what’s been going on.

But first, it’s my blog’s birthday; 2 years old today (well actually yesterday but let’s not worry about that minor fib). Its visits have doubled since the first year’s statistics: I’m pretty darn amazed with that. What really pleases me is that I can see from the stats that people have searched Google and found the answers in my site, that’s kind of why I started it in the first place.

In December 2013 my daughter Emilia decided to take part in the TrialNet study at Bournemouth. It was two long months before we found out her results (and mine) were negative which pleased us, although we were saddened to hear that a friend’s result was positive.

Christmas and Amy’s Diaversary (29th Dec) came and went and her 6 month old Animas Vibe insulin pump made life easier during the festive period.

Amy and KevEarly in the new year I started my shifts as a national peer supporter for Diabetes UK, answering phone calls once a week and helping people find solutions to problems, or giving them ideas from the experiences we’ve had in the family. It’s proved to be really rewarding.

AccuChekInsight1March was a whirlwind on a particular day, the 15th, which saw us have two back-to-back diabetes events, doing their impressions of buses and policemen (none around, then there’s two). The first was an education day held by the local Type 1 families group Seahawks where amongst many other things I got to check out Roche’s latest pump, the Insight. It a great event and I was sad to rush away from just after lunch. But rush we must as Amy was doing a sponsored Indoor Skydiving in aid of JDRF along with lots of kids we knew pretty well; she loved it, every minute of it.

dblogweek squareIn May I joined in with blog week and I remember how nervous I felt when releasing my poem for Tuesday’s entry: A Childhood All Gone. It turns out I needn’t have been so nervous and I think that’s turned out to be my most favourited/Retweeted/Liked blog post ever.

flatline-dayEarlier in March Animas got the green light for use of the Vibe pump with Dexcom CGM for children, something we’d be waiting for since June the previous year. One year after getting her pump Amy went live with CGM and what an eye-opener that turned out to be.

twitteravatarJune also saw me cycling 100km around London overnight with a group of friends in the Nightrider charity event, where my local group of 8 raised £2700 for JDRF. On the plus side the training for it and switching to a healthier diet has also seen me shed 1.5 stone.

My personal highlights for this last year though involve each one of my kids. First Amy spoke in front of hundreds of Paediatric Health Care Professionals in a transition chat set up by the wonderful Dr Kar from QA Hospital in Portsmouth. Secondly, it was Emilia’s prom and a combination of pride and tiredness (from Dad-taxi pick ups at 3am) made me quite reflective: The Forgotten Sibling.

“Bringing up Children with Diabetes” #GBDOC Tweetchat – Questions

gbdocI’ve taken part in many of the weekly (Wednesday night at 9pm) #GBDOC tweet chats since they started a couple of years ago, I enjoy them and generally get a lot out of them. A couple of weeks ago I got a message from Paul (@t1hba1c) who hosts the #GBDOC tweetchats who asked whether I’d like to host a tweetchat about bring up children with diabetes. I was initially reluctant: why would anyone want to listen to or answer my questions; there’s many more parents who with their eloquence could host a great tweetchat.
After a couple of messages between Paul and me I decided to do it and then proceeded to panic about what to ask. The easy solution was to ask other parents what they’d like to know so these questions are not just mine, they’re from a mixture of parents.

For the chat I’ll be using the following abbreviations:
PWD – Person With type 1 Diabetes
CWD – Child(ren) With type 1 Diabetes
PofCWD – Parent(s) of a CWD
Dx – diagnosis of type 1 diabetes
CGM – Continuous Glucose Monitoring, such as the Dexcom G4 Amy uses, gives a constant, slightly delayed reading of a PWD/CWD’s glucose level.
CGM-in-the-Cloud/Nightscout – a system developed by PofCWD which allows parents to view their kid’s current glucose level whether they are, many use a Pebble watch or iPad to view their kid’s CGM data. More info here.

First a couple of questions about work & relationships, not at the same time mind…unless you’re working late 😉

Q1a Employment: has having diabetes affected your employment chances? Did you change your career path/dream because of it?
One of the first things parents are often told at diagnosis is that it won’t affect their child’s career unless they want to join the Armed Forces. As time goes on you hear that people haven’t been able to become pilots, or paramedics and the list seems to go on. Some kids already have thoughts of joining the Army etc., then they’re diagnosed and those dreams stop. Did you dreams stop?

Q1b: Are there any ‘good’ or ‘bad’ jobs? (Thinking along the lines of jobs where it’s really hard to test or take a break)
I’d never dream of steering Amy towards a certain career path because she has Type 1 Diabetes, she needs to choose her own path, but it seems to me that there must be certain jobs where testing glucose and taking the odd break for treatment is a lot easier than others.

Next up, one of the worries for parents is about their kids having a happy family life.

Q2 Relationships: has having diabetes been a factor in finding/losing a partner? Has it caused issues in your relationships?
On many of the parents’ Facebook groups many talk about how their marriage fell apart after their child was diagnosed, blaming the stress from prising apart already existing cracks. Some worry that their child might find it difficult finding their ideal partner, although I believe the truth will out and Amy will have no trouble finding that decent guy (or girl of course).

Moving on to positivity, about kids attitudes and fear and confidence.

Q3 Attitude: do parents instil confidence or fear in their CWDs with things like overnight checking, CGM, CGM-in-the-cloud?
I often wonder whether my own personal paranoia and control-freakishness is instilling fear in my daughter’s mind rather than what I really want – for her to be independent. My interest in her using CGM has led to us all to expect it to be there every day and I can’t help but wonder if this is sending out the right message. Back in the day parents didn’t have these options and all the PWD I know seem to have grown up pretty well and turned into to great adults.

Q4 Positive clinics: How should parents go about teaching our kids to question their HCP’s? What are the important points?
Our Consultant is great, she rarely talks to us parents but instead talks straight to Amy and all about the soft stuff too, no focus on HbA1c as such. Amy though rarely thinks of any questions for her sessions as she’s happy with her care. I want her to be able to question the HCPs, learn from them, teach them so does anyone have any tips of how to achieve this?

The next question is whether or not it’s right to restrict things due to worries about the future.

Q5 Care focus: should our focus be the current or the future? What do you wish your parents did or didn’t do? Any wind ups?
The current or the future: I seem to have two choices, either make life easier for Amy now and not worry too much about her day-to-day levels OR be very involved in Amy’s day-to-day management helping her with basal/bolus management & set changes etc.. I choose the latter which I know can wind Amy up, but I do this to help her future as much as I can, hoping to minimise complications as much as possible. But which approach is right?
Am I right to steer her away from, or make her wait for, a carb loaded snack when her blood glucose is already quite high? Should I let her eat anything her friends eat?
Or am I right to try and teach her to minimise the food spikes going too high?
I guess many PWDs either wished their parents did less or more during their childhood. Any experiences you’d like to share?

If we get time I’ll ask this one.
Q6 Letting go: what’s the best way/age/time to hand over care completely? Do PofCWD ever fully let go? Did yours?
I tell myself that I’m learning all I can about Type 1 to help Amy’s future and to stop Amy having to learn all this, that I’ll educate her bit by bit and at some point let go completely. Honestly, I’m not sure I’ll be able to do that.
Have your parents ever let go fully? Do they still ask what your glucose level is occasionally?

Many thanks to @theGBDOC for the opportunity to host this tweetchat and to Rachel and Louise for helping with creating some questions.

The forgotten sibling?

Emilia on her prom busEmilia on her prom transport, a wonderful old London bus

It’s 4:58am and I’m sat here awake, unable to sleep after picking up my eldest, non-pancreatically-challenged daughter, Emilia up from her after-prom party. It’s suddenly struck me how much of our time is geared up for managing Amy’s diabetes, or dealing with Emilia’s GCSEs and switch from school life to college life. Last night was completely different and it was lovely to focus on something wonderful and filled with joy: Emilia’s prom.

I’m not sure how often I stop and wonder how Amy’s diabetes affects Emilia, but I’m sure it’s not enough and it needs to be more. We’ve had a fair few chats about it but they never last long and it was only when we had a day off together whilst taking part in TrialNet that we spoke in detail about it all, how she felt, her worries and her fears for both herself and Amy.

Some months after Amy’s diagnosis Emilia and I ceased our only scheduled Father-Daughter activity, going to watch Southampton play football, and whilst this was more about finance and definitely nothing to do with diabetes I wish we’d carried it on. Soon after I launched into a world of finding out more about Type 1 diabetes; I wonder if Emilia links the two together. I should probably ask her. Today.

Last night’s prom turned out to be everything Emilia hoped it would be, meeting the high expectations that five years of dreaming about it had built. Surrounded by a great bunch of friends arriving together on a red London bus – which in my opinion looked far nicer than the posh cars which blurred into each other and will be forgotten tomorrow – I couldn’t be more proud of her. I should probably tell her this again. Today.

On hearing how she cared for several friends at the after prom party I realised that in some ways we’re one and the same, both worried more about other people’s health than we are about ourselves, both wanting to make sure others don’t end up in trouble or danger, both wanting to make sure that people get the pastoral/medical care they need. Again, I couldn’t be more proud.

I hope then that she doesn’t feel she’s a forgotten sibling, losing out to her sister’s care and the time that all takes. I hope she’s realises that we have no choice to spend time doing these things to make sure her sister lives a long and healthy life. I hope she realises that if diabetes didn’t darken our doorstep this inequality of time she suffers just wouldn’t happen. I should probably make sure of this. Today.

I’ll leave you with a picture of my eldest daughter, Emilia, a beautiful girl with a great future ahead of her, sitting on the swing beneath our apple tree.
emiliaswing

A good year disappears, but another one’s coming

At the start of 2013 I only had one New Year’s resolution, which revolved around getting more proactive managing Amy’s diabetes and handing over knowledge to her to let her decide where to go next. I blogged a bit about it here.

Honestly, I’m not sure whether this has been fully achieved but I do know that she and her diabetes knowledge, attitude and advocacy towards and for diabetes care has much improved. And realistically that’s all that matters.

We started off 2013 getting playing around with different sports and she’s pretty much found that she prefers Squash and Badminton and is pretty good at the latter. Cycling has featured a fair bit and she successfully cycled 27 miles with Gavin’s GBR30/30 challenge this year. The good that’s come out of this is that she’s proved herself to be better, stronger and more determined to achieve than many of her peers and I have no doubt that diabetes has raised this drive and determination.

Having attended so many diabetes related events Amy has gained a lovely set of friends in Chloe, Mimi, Max and Harry, friends I hope will stay in her life for a long time, such is the positive effect it’s had on her attitude to feeling ‘normal’. Her own friends are great but there’s nothing like being able to speak to other kids who just understand.

Getting the insulin pump has been one of this year’s big achievements, from fainting at the mere mention of cannulas at the start of the year, to getting a pump in June and on to giving cannula change demos in public to soon-to-be-pump-wearers she barely knew.

So 2014 is almost here.
I have no doubt it will match or exceed the good things which happened in 2013. I have no doubt about this because we have so many wonderful people in our lives, in our family, locally and especially within the Diabetes Online Community. Thank you to all of you.

I’ll leave you with a picture of Amy with her much-awaited new shirt from Diabetees.
amy jelly babies t-shirt

Open letter to Dextro Energy: 1 more tablet please

Dextro Energy Classic

At the last Wednesday’s #GBDOC tweet chat a question and my joke answer got me thinking…

tweetchatQ3answer
tweetchatQ3answer

 
…so I thought I’d write an open letter to Dextro…

 

Dear Sir/Madam,

Firstly can I thank you from the bottom of my heart for literally saving my 13 year old daughter’s life on so many occasions. You see she has Type 1 Diabetes which in simple terms means her pancreas doesn’t produce any insulin and it involves her having to inject* insulin to match the carbohydrates she consumes for each meal. Sounds simple doesn’t it, but throw in exercise and hormones and growth spurts and the whole process gets tricky. Giving too much insulin means that she’s likely to go ‘hypo’, which means her body will be in a hypoglycaemic state, which is bad news, potentially very bad news, unless it’s treated fast. That’s where you come in.
* luckily she has an insulin pump which makes this job easier for her

My daughter and tens/hundreds of thousands of other people in the UK with Type 1 Diabetes use Dextro Energy to give themselves a glucose boost and bring them out of a hypo. To do this they often consume 15g of carbohydrate. Obviously other sources of carbohydrate are available but in my daughter’s eye Dextro Energy tabs taste the best.

Sorry I’ve just realised that you already know this, you’ve written about it here: http://www.dextro-energy.com/werbrauchtdextroenergy/diabetiker/index.asp

Five Dextro tablets are just right to cover one hypo, but if her blood glucose level is dropping fast they may not be enough and a second lot of five tablets may be needed. If we go out for a day we want to make sure we’ve got enough to cope with three hypos.

3 hypos x 5 tablets = 15 Dextro Energy tablets.
That’s 15.
Number of tablets in one stick of Dextro Energy: 14.
(Just for info the sticks are the only ones we can get in our area.)

So what I ask of you is to consider increasing the number of tablets in each pack by one to 15. I’ll expect the cost to increase by one-fourteenth, that’s fine, but it would make things so much easier. It would mean we wouldn’t have to count how many tablets were left every time we pack the hypo-kit-bag, but more importantly it might mean not find lots of old tablets in ones,twos,threes,fours lying around the house/car/garden/bags/coats.

Thanks for reading this.
Kev.

Whirled diabetes days: a new blog, one year on

On World Diabetes Day 2012 our new blog, Circles of Blue, went live.

What a year it has been.

A good year.
A year of dealing with diabetes proactively.
A year of diabetes advocacy.

 
whirl (hwûrl, wûrl)
verb. whirled, whirl·ing, whirls
    1. To revolve rapidly about a center or an axis.

 

“there’s now multiple series covering diagnosis, getting an insulin pump and travelling to India with Type 1”

The blog was officially released on World Diabetes Day 2012 although I let everyone have a preview of it a few hours before that day dawned. Since then we’ve written 70 posts over many subjects and there’s now multiple series covering diagnosis, getting an insulin pump and travelling to India with Type 1. It’s fair to say I’ve been blown away to how it’s all been received, not just by the #DOC (Diabetes Online Community) but by the thousands of individuals who’ve happened to find an article of use to them thanks to Mr Google. It pleases me to see that people have reached my blog after search for things like ‘can a diabetic travel to India?’ (answer:yes) and ‘can a person with diabetes get a fast pass at Alton Towers?’ (answer:yes).

It’s been a year of reflecting

Well, actually it hasn’t been a whole year, most of the reflecting was done in November and December when Amy, Jane and I wrote our diagnosis stories – full series of articles is here. Occasionally I try to re-read them but I rarely get to finish them.
One of the most read areas of the blog is the series about travelling to India with Type 1 Diabetes with the top page of choice being Cooling Insulin with Frio Wallets. I really enjoyed re-working my original blog about that trip – Monsoon Meandering – reflecting on the epic trip it was and making it useful for any people with diabetes who are thinking about travelling there.

It’s been a year of learning

This time last year we knew very little about diabetes, we just coped with it on a day-to-day basis.
Amy had just got an Aviva Expert meter which made life so much easier that I started asking the #DOC about insulin pumps. It took a while to get Amy interested, and further time for her to not faint whenever they were mentioned, but in March 2013 Amy decided she wanted a pump and on the morning of the 20th June she took her last scheduled injection and starting pumping a few hours later – it’s changed her life in so many ways.
Now, we’re looking into CGM (Continuous Glucose Monitoring) and hope that early next year Amy will starting using that.
All of this learning wouldn’t have been so easy to obtain without my friends from the #DOC, so once again I thank you all for that.

It’s been a year of attending events and meeting people

“Since April I’ve met with around 40 – forty! – people I know from the #DOC”

Starting in April we met our first two people from the Diabetes Online Community (#DOC) – Laura and Anna, who gave Amy a demo of their pumps.
A few days later We went to our first official event the JDRF Discovery Day in Bristol; the Portsmouth “SweetMeet”; the JDRF Discovery Day in Dorset; the DRWF Wellness Day; the Greater Minds Inspire event; the Diabetes UK Big Event; the Bristol JDRF Walk to Cure.
In May we took part in Gavin Griffiths’ GBR30/30 Challenge, with Amy cycling 30 miles in one day and ending it with a run up a big hill carrying Gav’s Olympic Torch.
At the end of June we had a great two days in Alton Towers with Derek, Clare and Chloe, meeting other #DOC people Philippa and Vanessa.
Since April I’ve met with around 40 – forty! – people I know from the #DOC and more importantly Amy has met some other kids with Type 1 Diabetes; they’re sure to be friends for some time.

It’s been a year of stepping up our game

Amy became as JDRF T1 Ambassador and wrote a two page article entitled – Adventures with Type 1 – for their T1 Kids magazine, appearing on the front page
I’m halfway through becoming a Peer Supporter for Diabetes UK, where I’ll man a phone line for a few hours a week, helping people with any type of diabetes. I’m excited but also nervous about this opportunity as I know I might not have the answers they need but hopefully I can help them.
Earlier this year I was asked by a neighbouring area’s diabetes special nurse to introduce parents of newly diagnosed children to the benefits of using Social Media for diabetes. I ended up creating a leaflet entitled ‘How social media helps us with Type 1 Diabetes’ which has been well received by many, be they health care professionals, newly diagnosed people/parents as well as the diabetes community at large. I’ve been so grateful to the endless retweets, posts and linking done by others in getting this leaflet out there and feel sure it’s got to many of the right people.

The icing on the cake has just arrived

Whilst writing this article a new tweet flashed up on my screen. I was amazed at its content and I couldn’t be prouder than to have a leading, respected Doctor mention this blog.