Continuing Connections – Diabetes Blog Week, Day 7


Day 7’s topic is Continuing Connections:
The very first inspiration for Diabetes Blog Week was to help connect our blogging community, and that continues to be the most important reason it’s held every year. So let’s help foster and continue those connections as we wrap up another Dblog Week. Share a link to a new blog you’ve found or a new friend you’ve made. Or pick a random blog off of the Participant’s List, check it out and share it with us. Let’s take some time today to make new friends.

Choosing my fave new blog isn’t easy

Diabetes Blog Week has introduced me to two new blogs which I’m enjoying very much, it’s difficult to decide between the two.


Let me be Frank about my first choice

The first new blog I started reading this week belonged to Frank, a blog I found very interesting, easy to read and of a lot of relevance. Franks blogs are like most written from the heart and it’s been interesting to read his viewpoint. Go and take a read if you haven’t already.
Of course it was nice to see Frank felt a similar way about mine too with his tweets and comments on my blog.
Frank's tweet about Circles of Blue


It’ll be difficult to (Dia)beat(er) this next one though

Like many I have discovered and been in awe of Tamsin’s blog, lifestyle and attitude. Whilst only recently diagnosed whilst travelling the world Tamsin has gripped Diabetes by the neck and showed it that it will never break her, it will not stop her doing what she wants to do.
Whilst not specifically Diabetes related her 24 life lessons from 24 months on the road article offers such great worldly advice and contains such jawdropping photos.
If Amy grows up with only part of Tamsin’s attitude and zest for life I’d be a happy Dad.
Tamsin and I share an interest, which I’m afraid I just can’t talk about and I look forward to reading more about how she get’s on running on fat, which I know from reading is very achievable.
Like Frank, Tamsin has been very kind with her comments to me and I’ve enjoyed our interactions in a Facebook group (which I just can’t talk about).

Favourites and Motivations: Diabetes Blog Week, Day 6


Day 6’s topic is ‘Favourites and Motivations’:
If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written? Is it diabetes related or just life related? If you are a new blogger and don’t have a favorite yet, tell us what motivated you to start sharing your story by writing a blog?

My favourite blog post of mine

My favourite is one I wrote for DblogWeek2014 for Poetry Tuesday entitled ‘A Childhood All Gone’. I was so nervous to release the first poetry I’d written since school days, especially one about something so emotional. I remember hovering over the ‘Publish’ button thinking should I or shouldn’t I, so I was overwhelmed with the responses I got to it.
Here’s an excerpt:

Well she seemed very nervous perched there on the desk,
Softly saying some words which caused us distress.
A quivering voice made me see from the start,
These familiar words still broke the nurse’s heart.

My salt covered cheeks saw confusion elsewhere,
On the face of a girl who awoke free of care.
Nurses make you better knew the 10 year old girl,
But not what the next few minutes would unfurl.

…read more…

My favourite article from Circles of Blue

…is of course one of Amy’s and although it’s incredibly hard for me to read I just love her own story of her own diagnosis, aged 10.
Diagnosis – a diabetic 10 year old’s viewpoint


I only have one motivation in this world of diabetes and here she is getting ready to go on stage at yesterday’s National Paediatric Team Meeting in Birmingham and speak to a couple of hundred paediatric health care professionals.
Amy ready to go on stage

Being careful with your kit? Think Again – Diabetes Blog Week, Day 5


So I’m a little late with Day 5’s blog due to spending yesterday travelling to and talking at a conference for paediatric diabetes health care professionals, giving them a parent and child’s (along with Amy of course) perspective of the care we receive.
For Day 5 of DBlogWeek the main topic is about the food you’ve eaten or your normal/ideal food day. Since I’ve missed this and given the travel and weird food options at points yesterday I thought I’d pick the ‘Crazy Stories’ wildcard.

Not so crazy

So this isn’t a crazy story as much but it is one a little that was crazy at the time. I’ve told it before so apologies if you know it already.

The blurb

In 2011 we backpacked around India for four weeks, using trains for our 2700 miles of travel.
Our first overnight train was a big deal for us as it left Jhansi heading for Aurangabad, a near 600 mile, 18 hour overnight ride. What made this bigger was that this was a popular train and all spaces are booked way in advance, like they are for most of India’s trains – you can’t just normally turn up for these long distance trips. If we missed this train there was no easy option left to us.

Follow the first rule of kit packing

On a trip where you won’t be able to easily get supplies the first rule is obviously take way more than you need, think of the worst case scenario of how many test strips, needles etc you may need and add a bit more ‘just in case’.
I would rather carry triple the kit Amy’s diabetes needs and forego some things I’d normally take as I can always buy more clothes/medical kit anywhere but specific D kit isn’t so easy, well not when you’re going to be staying for 5 days in places like Hampi, miles from anywhere by road, only one train a day in/out and no big pharmacy anywhere close.
We probably took enough kit for a small town.

The second rule of kit packing

The next rule is to split your kit between bags so that if one got lost or stolen then you’d still be okay for a good few days.
As this was our first trip dealing with Diabetes – it was only 7/8 months after diagnosis – we split our kit between Jane’s daysack and my daysack and didn’t put much in our main rucksacks, just a spare meter if I remember correctly.

Raining, rushing, ruing

Waiting for our Tuk-tuk – see the yellow/green vehicles in this video if you don’t know what they are – the monsoon rains opened so when he arrived the bags were packed really quickly; there wasn’t much room.
The rucksacks were loaded and unusually we put our daysacks in the back too as tuk tuks are pretty small inside for two adults and two kids, Amy always had to sit on my lap. The driver closed the rear rain cover, tied it down using straps and everything was secure and we were ready to go.
We headed off for the train and after a few hundred yards the driver gets a phone call. Very unusually he didn’t continue driving but stopped to answer it.
Two men came to the tuk-tuk and I thought at first they were hassling us for something, hawking their wares or just asking for money, a sight we’d got used to in India although unlike elsewhere in the world it is rarely aggressive over there.
But hold on, they’ve got our daysacks, both of them.
What’s going on? Have they stolen them out of the back?
Both daysacks are soaked, they’ve clearly been in the rain, they look a bit muddy too.
Then it dawns on us: both daysacks – so that’s ALL of Amy’s diabetes kit – had fallen out of the back of the Tuk-Tuk and the men had chased us down the street trying to return them.

Feeling quite sick

In an instant I realised what this could have meant to us if we hadn’t had discovered the problem until at the station. No kit for 18 hours and then a real struggle to get stuff during the couple of days scheduled in Aurangabad.
I felt sick to the stomach.

Faith in humanity restored

Seconds later I realised what a difference these two guys had made to us so in a flurry of gratitude I whipped out my wallet to give them a little something for their trouble, except it wasn’t a little something it was a lot of money. But it didn’t matter to me and I was happy to give it – it was potentially the equivalent of one month’s wages to them depending on what they did.
They refused. I insisted, they refused again. They were just happy to reunite us with the bags.
Faith in humanity restored.

We never travelled with our daysacks in the back of a tuk-tuk again.

If you’re interested in reading more about our travels in India checking out our blogs:
On general travel in India with Diabetes see the look at the India section within this blog.
Monsoon Meandering, a four week backpacking trip over 2700 miles, a few months after Amy’s diagnosis.
Big Cats & Holy Ghats, a three week trip mainly around Rajasthan and focusing on wildlife safaris.

Changes – Diabetes Blog Week, Day 4


Thursday’s topic is entitled ‘Changes’
Today let’s talk about changes, in one of two ways. Either tell us what you’d most like to see change about diabetes, in any way. This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing. OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes. Were they expected or did they surprise you?


(You’ve got that song in your head now eh? Feel free to hum it whilst reading)
Changes are happening at such a pace in the world of Diabetes and this gives me great hope for Amy’s future. I feel if I can help her get through the next decade unscathed by complications, burnout and other things then medicine and medical equipment will have improved a lot to make things a little easier for the then 24 year old.

Anything and everything

As a parent I understand that Amy won’t be free of Type 1 for some time so I just want her life to be easier to manage and enjoy. I’d be happy to see her use anything and everything to achieve this.
Of all the things I’ve read about I’m more interested in SmartInsulin, Stem Cells and Afrezza than I am of anything wrongly termed as an artificial pancreas, but hey if an ‘AP’ was offered to her I’d encourage her to take it.

Why wait for change? – Continuous Glucose Monitoring

We could wait for these new things to become available or we could initiate change ourselves.
That’s why we’ve been using CGM to get Amy’s basal profile as good as can be. Yes I know us UK residents see it as expensive but when I see the Type 1 medication/equipment bills my Texan friend gets I wonder how I could ever think self-funding CGM is expensive. I know I’m privileged to live in the UK and be able to afford CGM. I’m also privileged that Amy receives (for now) Disability Living Allowance and all this money has been used for CGM.

Why wait for change? – Exercise

A couple of years ago Amy enjoyed exercise, now not so much. It’s the one thing I’d like to see us as a family get back on track.
Unfortunately over the last couple of years I’ve got into cycling and now the maximum distances Amy would be happy to do hardly seem worth getting changed for and this is something I want to change. I used to love our like MTB rides which are now saved for holidays only but I plan to change this.

Why wait for change? – Diet

I’ve already ‘outed’ myself in Tuesday’s blog about how lowering Amy’s carbohydrate consumption even a bit has seriously improved her levels and I hope one day Amy will choose this path for herself. To help I will prepare meals and bake cakes low in carbs; I will experiment and I will find things she is happy to eat; I won’t force things on her; I won’t stop her from eating treats but I will encourage them to be treats, not everyday food.

Clean it out – Diabetes Blog Week, Day 3


Today’s blog week topic is ‘Clean it Out’:
What is in your diabetic closet that needs to be cleaned out? This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to. Why are you keeping it and why do you need to get rid of it?

But first a little music

(Don’t feel like you have to play this).

Pendulum, live at the B.I.C. 7th December 2010.
This could have been my best gig ever.

Back to the story

Before I clean out my closet I should say that I know much of the current thinking about how Type 1 starts: the genetic markers, the illness, the gradual destruction of beta cells.
So beta cells are destroyed by those nasty dazed-and-confused appalling marksmen Super T Cells?
So diagnosis potentially happens when 80% of beta cells have been destroyed?
So if you kept your kid in a bubble and they never got ill, their beta cells wouldn’t get destroyed then they’d never get Type 1 right?
But you can’t keep your kid in a bubble and they will get ill and if they’ve got the genetic markers for Type 1 then a diagnosis seems almost inevitable.

I know this.

But I feel this…

On 7th December 2010 I took Amy to her first ever gig, to a see Drum&Bass/Dance act named Pendulum. It was a heavy gig, laser lights everywhere, everyone dripping, it was probably not a normal only-just-10-year-old’s first gig.
We’d been looking forward to it forever, both playing their albums at every opportunity, counting down the minutes.
Days before the gig Amy got the sniffles, it never went away and if we didn’t have gig tickets we’d never have gone out that night.
But we did.
In the hall there was no water to be had and from memory fizzy full sugar drinks were the only thing keeping her awake. We both had a lot. It was so hot, both our thirsts were raging and the drinks never solved that. It also annoyed me that we missed a couple of songs because she needed the toilet.
But it was a incredible gig and it would be rated as my best ever if it wasn’t tinged in sadness.

The following days saw Amy get worse, never getting out of this ‘cold’ she’d developed. She was probably really tired because of the gig too, right? That would explain her sleepiness, right?
Christmas arrived and everything was a whirlwind.
All these late nights, that would explain her tiredness wouldn’t it?
Without regular meal times she drank whenever she chose, that would probably explain the getting up to go to the loo often don’t you think?

We never saw anything wrong with any of this.
We didn’t know what we were looking for.

Three weeks after the gig Amy was diagnosed.

To recap then, it’s only when those beta cells get to a certain level that the condition develops?
On that night, if we hadn’t gone out, if her body hadn’t got so run down, then possibly, just possibly she wouldn’t have lost so many beta cells in the following weeks.

A clean closet?

My closet doors are open, but it’ll never be clean.

Keep it to Yourself – Diabetes Blog Week, Day 2


Today’s blog week topic is ‘Keep it to Yourself’:
Many of us share lots of aspects of our diabetes lives online for the world to see. What are some of the aspects of diabetes that you choose to keep private from the internet? Or from your family and friends? Why is it important to keep it to yourself? (This is not an attempt to get you out of your comfort zone. There is no need to elaborate or tell personal stories related to these aspects. Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.)

A Secret Society?

There’s a topic which I’m very interested in, something I myself follow loosely, yet something I feel that I cannot mention unless I’m in a group of like-minded individuals. It feels like we’re in a secret society that could really do with its own secret handshake so we know who’s in and who’s not.
Oh how I’d like there to be a word, question or statement you could just say, listen to the reaction and instantly tell whether the person you’re talking to is ‘in’. I think we should turn to Scott Hanselman (T1 PWD too) to create a less techy version of his ‘Fizzbin‘.

Why the secret?

The reason is simple: whenever anyone mentions it there’s a set of people who are not ‘in’ and seek to ridicule or destroy the beliefs of those who are. They come back with statements saying that you’ve told them to follow your beliefs, or to prove that there are other ways to achieve the same goal.
This would of course be fine if any of ‘us’ had ever told the others they must change their ways, but no-one has.
Of course there are other ways.

For the record

I’m a Christian, this does not mean you must be too, other religions are great.
I love Football, but it’s okay if you want to follow Rugby or any other sport.
I hate Marmite, but I don’t mind if you want to eat it…but not too close please.
If I state I like, love or agree with something it doesn’t mean you must too.

Am I in the Illuminati?

What, you might be thinking, is this secret society?
Well if you’re in the world of diabetes you probably already know.
I suppose the point is: does it actually matter?
Am I a member of ISIS? No.
Am I a member of the Illuminati? No.
Am I an axe-murdering-knicker-sniffer*? No.
It’s worse than that.

I believe that a lower carb intake makes managing blood glucose levels easier.

There, I said it.

And finally…the yada

Low Carb is not No Carb.
Lower Carb is not Low Carb.
Of course ‘lower carb’ can mean anything anyone wants it to mean, it could be less than 30g CHO day if you follow Bernstein, less than 130g if you look at ‘normal’ diets or in our case way higher than that. We’re not low-carbing as a family and Amy still eats well above the amount one of the UK’s leading Dieticians is happy with.
It’s not the panacea, it’s not everyone’s cup of sugar-free-tea, but in this house it has worked and when we reduce even slightly the amount of carbs Amy consumes it helps. However – and here’s the disclaimer – it doesn’t rest easy with Amy who’s the one who actually matters, so whilst it is encouraged (by me) it is not enforced, or forced.

* I once heard this line in a Comic Strip Presents show…it kind of stuck with me, it’s not something I came up with.

I Can – Diabetes Blog Week, Day 1

This week it’s worldwide Diabetes Blog Week, organised by Karen Graffeo and today’s topic is ‘I can’:
In the UK, there was a diabetes blog theme of “I can…” that participants found wonderfully empowering. So lets kick things off this year by looking at the positive side of our lives with diabetes. What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could? Or what have you done that you’ve been particularly proud of? Or what good thing has diabetes brought into your life?

I can

With a common phrase at the moment being ‘you had one job’ I can make sure that I do that job well: to ensure that Amy has all the support, guidance and knowledge that she needs to look after herself as she matures in the wonderful adult she will no doubt become. Of course it’s every parent’s job to do their best to ensure their child flourishes in every area and diabetes is yet one more area to add to that equation.

I could

I could impress on my daughter how unlucky she is to have been diagnosed with Type 1 Diabetes.
I could impress on my daughter how she shouldn’t exercise due to the possibility of hypos.
I could impress on my daughter how she couldn’t travel the world due to the problems of changing time zones, eating foods she doesn’t know, temperature changes etc..
I could impress on my daughter how Diabetes could stop her doing lots of things.

But I won’t.
I can’t.

I can

I can make sure that diabetes never features as a key reason to not do something. As we’ve already found living with Type 1 has it’s challenges but if you accept there will be fluctuations and you’re prepared to put in the effort then nearly anything can be achieved. Okay she would find it pretty challenging to scale Everest or reach the South Pole but I think it was pretty unlikely she was going to attempt those anyway.
I can make sure that I can learn everything I can about managing Type 1 Diabetes so I can help her learn. That’s why I spend endless hours reading articles so that I can précis it for Amy so she can life her whirlwind teenage life.
I can make sure I give Amy opportunities to do things she’d could easily back away from using Diabetes as a reason, challenging her and us to deal with whatever needs dealing with. Such as the four week backpacking trip around India we could have easily cancelled. Having successfully done this trip we often use it as a ‘well we did India without much trouble so ______ shouldn’t be a problem’.
I can make sure she grows up with a positive attitude, especially towards her condition, and encourage her to grab life.

I can also sit back.
And watch.
This is happening.