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.

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…


…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:

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.

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.