Category Archives: DBlogWeek2015

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

http://type1writes.com/
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.

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

http://type1diabeater.com/
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).

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?

Ch-ch-ch-changes

(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.

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.

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.

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.