#DblogWeek 2014 Day 7 – My Favourite (#DblogWeek) Things

dblog week 2014Sunday’s topic: As we wrap up another Diabetes Blog Week, let’s share a few of our favourite things from the week. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or comment left on your blog that made you smile. Anything you liked is worth sharing!


Dblogweek imageAll of the newest things I’ve found and loved have come from #DBlogWeek itself.

I love how some people have starting blogging because of #DBlogWeek and they’ve made such great starts I hope they continue. I’d like to single out Diane for this and her brand new blog: “My 1st ever Blog”. Kate too had only blogged twice before launching into a full week of blogging for #DBlogWeek: katet1d’s Blog.

I love how some others who’d blogged a little before have really gone for it this week. For this I’ll single out Jules who’s had a pretty crap time recently but is always full of fun and laughter and this comes through in her blog, especially the line in Mantras and More: ‘I’ve got the wrong mirror in my house. Mine belongs to a dowdy middle aged chubster, not me!‘. That had me giggling for a while, mainly because I share the same mirror problems 🙂

I’ve found a renewed zest for blogging. The early Circles of Blue articles were hard to write as they dealt with diagnosis, but as hard as they were I felt better by writing them. More recently I’ve just been reporting on events/products and whilst some of these – especially the Accu-chek Insight pump page – have turned out to be my most visited pages writing them didn’t give me much satisfaction. I think it’s fair to say this week has been a revelation for me.

I think I may write the odd poem too. I can’t tell you how nervous I was to release Tuesday’s poem “A Childhood All Gone” but it turned out to be the single-most favourited, retweeted and commented on article I’ve written. I spent all day apologising for making people cry – even though they told me I didn’t need to – and I’ve had people ask to be able to print it out for their clinic – of course you can – for others to read. I was pretty much overwhelmed the whole day. The last person who probably read it was Amy herself; she approved…phew!

Lastly, I’m amazed by Karen Graffeo. Not only has she grown #DBlogWeek to 200 worldwide bloggers, she seems to find time to read as many of the blogs as possible and comment on them, giving praise and encouragement. Here’s a couple she left me.

  • Thank you for giving me a glimpse of things my parent’s kept hidden from me. I think all parents of kids with diabetes are amazingly strong and I admire you. on Day 3 – What Gets Me Down.
  • I cried pretty much all the way through this. Parts of it reminding me of myself being diagnosed at age 11. But I love the end – how you are all stronger and no longer alone on Day 2 – A Childhood All Gone.

dblog week 2014

#DBlogWeek2014 Day 6 – Saturday Snapshots

dblog week 2014Saturday’s topic:Back for another year, let’s show everyone what life with diabetes looks like! With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures. Post as many or as few as you’d like. Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.


It’s quite an easy one this. It was taken yesterday as my thirteen year old daughter Amy took to the stage with other older teenagers to talk about the care they receive, transition and what their ideal service would be. I’m immensely proud of Amy for doing this, it’s not something I would fancy doing.

Lilly Diabetes Conference

If you want to read about the event yesterday it’s all in here: Amy’s Chat Show at the National Paediatric Diabetes Team Meeting.

dblog week 2014

#DBlogWeek 2014 Day 5 – Diabetes Life Hacks

dblog week 2014Friday’s topic:Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes. Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen. Please remember to give non-medical advice only!

Crikey, this is a difficult, ‘tips and tricks’ would imply we know what we’re doing! If only we had Dexcom with its own received we could have Dexcom-in-a-glass, sadly we don’t.

spibeltI suppose the purchase of a non-diabetes-related SPIbelt for Amy has worked well for carrying her insulin pump, whenever she hasn’t got a pocket or somewhere to clip it.
When going swimming straight after our second pump training session, which taught us about adjusting for exercise, we realised we had nowhere for her to clip her pump. A quick dash around the shops later the hurriedly-purchased girl’s waist-cinching belt worked a treat and looked pretty cool too.
Both these products go to prove that you don’t always need to purchase specially made/designed diabetes products to make life easier, there’s things available everywhere.

On certain items of clothing we’ve done a little snip of a seam or rear or inside of a pocket to enable the pump’s tube to be fed through, but everyone does this right?

There’s a hack I want to know about: for those pumping insulin how do you avoid those untanned circles where cannulas once sat when returning from a beach holiday? Do you revert to MDI? Do you change set every day? Or something else?

The best ‘hack’ I’ll save for last and I’d like to thank UnderstudyPancreas‘s Annie for what I believe to have initiated a major change in Amy’s life with diabetes. Let me explain: Amy disliked going to clinic appointments, not because of the appointment itself which was always fine, but because we tried to keep her out of school for the minimum time. That meant picking her up from school with just enough time to rush to the hospital, park, run up the stairs, book in, do the clinic and reverse the steps all the way back to school. I heard that Annie’s daughter’s clinic were a lot more relaxed so on the next clinic we changed our ways. Now Amy has the whole day of school, she wakes up later than normal, has a leisurely breakfast, we drive to the park&ride with ample time to get to the hospital and book into the clinic, we spend as long at the clinic as we need and then head off into Winchester. There we’ll have a leisurely lunch, mooch around the shops and maybe at some point think about going home. Now before anyone jumps up and says it’s wrong to do this let me just share that at school she’s in the top 20 in her year of 300, something which has improved since treating her clinics as days off. Now couple that with Amy’s attitude towards clinic days: she loves them and looks forward to them*. Enough said I think.

 

 

 
* obviously she doesn’t like the annual check up where they extract what seems like gallons of blood from her. Who would?

dblog week 2014

#DBlogWeek 2014 Day 4 – Mantras and More

dblog week 2014Thursday’s topic:Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day. Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost? Maybe we’ve done that and we can help others do it too?



Amy on Indian trainFrom day one – okay it was probably more like day 101 – we tried to get Amy to be proud of her diabetes and not let it stop her achieving whatever she wanted. It’s a bold statement to make and one that on some days seems a mega-distance away but on the whole it’s achievable and spurs her and us on to do things that we probably wouldn’t have done if she’d never been diagnosed. It was around day 101 that we started planning our month long backpacking trip to India, something which made us very nervous – because of Diabetes, not India – but something which made us feel much stronger upon our return. Whenever I see photos of that trip it reminds me what a leap of faith it was, how we dealt with it and the sense of achievement we got from it. On top of that it was a bloody great holiday.

Us and Gav at end of GBR3030On Saturday at a JDRF Discovery Day in Reading there was a talk by Gavin Griffiths (aka ‘Diathlete’) who runs ultra-marathons without letting Type 1 Diabetes stop him. He started by asking the audience whether they saw Type 1 as a good thing. No-one held up their hand, although I raised mine halfway for a second before putting it down. Of course I couldn’t feel that it’s totally a good thing, to see what Amy has to go through, but I truly believe we’re all better people for it. Gavin has showed that with the right preparation and training it’s possible for someone with Type 1 to running the length of Great Britain (900 miles!).

Pretty in pinkTaking part in Gav’s GBR30/30 challenge made Amy even more determined to kick diabetes’ arse and it increased her advocacy for Diabetes. I see this in effect whenever we go to a diabetes event and someone sees her pump, which happened like clockwork at the JDRF event last Saturday. Amy had 6 or 7 adults and children all listening to every word she said as she described how having the pump has made life so much better for her and why it’s so ‘awesome’.

So our mantras could be that ‘diabetes will not stop us’ and ‘we are stronger now than before’. Remembering the good things we’ve done certainly helps when feeling down a bit.

But those mantras are no good when you’ve just had enough.

Luckily last July we attended a great event named ‘Greater Minds Inspire‘, organised by Zoe and Hedgie Pricks Diabetes, which had many inspirational people with Type 1 each talking about their achievements. Every one of them was brilliant and Amy certainly started to see that she needn’t stop doing things because of having Type 1.

But it was a video from Joe Solowiejczyk which was shown at the event that I remember when things are getting a bit much I remind myself of what he said, especially about meltdowns (about 1 minute in).

I really like the bit about planning to have a meltdown day, seems like a thing we should plan too. We let Amy have food-meltdown-days when she has whatever she wants and we deal with any glucose level issues later. She still carb counts during these days but with so many boluses and the stacking of insulin things inevitably go badly. But within 24 hours any ‘bad’ levels are forgotten and all she can remember is that she had a cracking food day.

dblog week 2014

#DBlogWeek 2014 Day 3 – What Gets Me Down

dblog week 2014Wednesday’s topic:May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?



I’m not so sure it gets me down but it’s incredibly hard seeing your child get upset, about anything, ever. Throw in Type 1 Diabetes into the mix along with teenage years, blood-glucose-level-challenging-growth-supports and the fast-forming schoolgirl cliques and it’s amazing that the dark days don’t occur more frequently.

copy of log book for 24th JuneThere’s no doubt that I find it difficult when occasionally it all becomes too much for Amy, those days when she’d rather just be someone with a fully functioning pancreas, those days when she doesn’t want to be different. I know she’s had too much when I just get ‘the look’ usually after I’ve asked her to try and fill out more details in her log book, which I use to check whether or not there’s a pattern and therefore her insulin pump’s basal needs adjusting. Just after I’ve got ‘the look’ I absolutely hate diabetes and wish it would bugger off for good. I normally don’t mention anything about diabetes for a good while afterwards.

But this isn’t what really gets me down about diabetes.

Some comments by a minority are annoying: the people who say those stupid things and suggest that cinnamon or okra will cure my daughter; the ones who say they couldn’t have diabetes as they hate needles; the ones that say (in front of my daughter) about someone they know of who lost an arm/leg due to diabetes. This always makes me laugh though:

 
But this isn’t what really gets me down about diabetes.

I find the attitudes of some others without diabetes annoys me too: those that “can’t cope” with their slightly runny nose; can’t go to work or school because they’ve got a bit of a cough; find the bad in anything that happens rather than the good. Come on people, take a look around you and see what my daughter and many of my friends have to go through each day. Walk a the day in their shoes then realise that they cope with far, far more than you and they go about it with a smile.

But this isn’t what really gets me down about diabetes.

No, what gets me down is when I’m reminded just how brittle life can be for those with Type 1 Diabetes and the recent tragic story of the death of 15 year old Nicole Wilson brings this to the forefront of my mind. I heard about it through the news of #SingForNicole going viral and I must applaud Liam Payne for his tweet about Nicole, that’s a nice touch.
I’ve known about ‘dead-in-bed syndrome‘ for a while now but some reason I’d always associated it with hypos following a night out drinking, so when a 15 year old died I was shocked. It’s the sudden realisation that all I thought I knew was wrong and my child could be taken from me at any time.
Any time.
Honestly I don’t think I’ve slept soundly this last week.

dblog week 2014

#DBlogWeek 2014 Day 2 – Poetry Tuesday: A Childhood All Gone

dblog week 2014Tuesday’s topic: This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes.


So here’s my entry, the first poem I guess I’ve written since my school days. Hope it’s okay.

A childhood all gone: a true story of Amy’s diagnosis and where we are now

 
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.

“Will I die” asked the girl, of the nurse, sat in front,
Whilst the family’s throats all swallowed a lump.
“You’ll need to take insulin to make you feel right.”
“Just the once? No? What? For the rest of my life?!”

With the first meal arriving when six struck the clock,
“Who would you like to give the first shot?”.
The needle-phobic young girl said without any strife,
“I might as well start if I’ve got this for life”.

With injection two done she tried to sleep tight,
On pillows with tear stains she awoke feeling bright.
The nurses so calming got us through the day,
But with arms full of D kit we wanted away.

We couldn’t go yet though as we hadn’t been told,
How to give Glucagon if she’s ever out cold.
The training was nearby but well out of sight,
But that curtain wasn’t as soundproof as the girl would have liked!

The next few weeks all seemed quite fraught,
Trying to remember everything we’d been taught,
Of injections and testing at least four times a day,
How we wish we could take our girl’s pain away.

It all seemed too much, just how did we cope?
With support from our nurses and minds full of hope.
But we felt quite alone, no-one quite knew,
Just how much we had to prepare, carry and do.

We were eighteen months in before I discovered my rock,
In the PWD* who are known as the #DOC*.
They teach me so much and in so many ways,
And continually help to brighten my days.

Three years now have past and how times have changed,
We’re stronger and confidence runs through our veins.
The little young girl with her childhood all gone*,
Would turn out to be so incredibly strong.

Amy and Kev

 
* PWD is people with diabetes
* DOC is the Diabetes Online Community, found 24 hours a day especially on Twitter
* So her childhood’s not all gone as such but she’s been launched into a world of responsibility and worry way ahead of her years.

dblog week 2014

#DBlogWeek 2014 Day 1 – Change the world

dblog week 2014Monday’s topic:Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up.


One of the (many) things that gets me fired up is the headline ‘diabetes is going to bankrupt the NHS’ that you see splattered in news stories occasionally. Articles appear in many online media article, like The Guardian, Sky, The Express and The Daily Mail. At least the NHS filled us in on the stats.

As well as the stories we hear that the people with the purse strings want to privatise elements of the NHS to farm off their ‘problem’. Yet at the same time some of the advice or practises seem to either waste money of give advice which is contrary to current thinking.

 
Without the NHS I see that our family could be missing one rather special thing, Amy.

My ‘change the world’ blog is more about changing the minds of those in Government and my words to them are simple:
Back off.
Change your plans.
Do you realise what an asset you have, the envy of a world which looks at the NHS for the care that it gives, not the money that it costs?

Rather than stop there I’ve got some ideas on how you can change things, although nothing below is diabetes related. As a caveat I have absolutely no medical training, so the following might just be stupid pipe-dreams born from reading and misunderstanding things far more complicated than I realise.

  • Change your focus on Cholesterol and get rid of the Eat-Ill plate – ok it’s the Eat-Well plate really – and prescribe some decent modern up-to-date advice, to adults, to parents but most of all to kids. You’ve got fantastic support from the likes of Zoe Harcombe (@zoeharcombe), so use it and rid Britain of this metabolic disease. Less obese people means less money you’ll have to spend on medication.
  • Only prescribe Statins to those that actually need them. The NHS already knows it’s over prescribing statins. You’ve got fantastic support from the likes of Dr Asseem Malhotra (@DrAseemMalhotra), so use it and save some of your budget.
  • Make sure that nothing can be prescribed on the basis of a single ‘high cholesterol’ figure which isn’t broken down. I’m happy to have high cholesterol if it’s all HDL or the ‘good’ LDL. This one will of course help the one above.
  • Come to think of it if the EatWell (*ahem*) Plate was changed and favoured less carbohydrate wouldn’t that reduce your bills for Metformin and Insulin? Remind me how much that costs you again.
  • Surely millions could be saved by giving easy and cheap access to sport and leisure. There’s thousands of homes soon to be built near where I live and work but I don’t see cycle lanes high on the agenda but they could be and it could all be paid for by the developers, not you, just make them do it. There will be lots of parking no doubt for fuel guzzling cars. Tell me, in the long term will you ‘gain’ more money from cars or making people healthier?
  • You know that all types of Diabetes are growing, so how come you are investing less than many countries? JDRF’s CountMeIn campaign has hopefully shown the Government how low our research grant is compared to other countries. You have numerous MPs in the likes of George Howarth, Caroline Noakes and Jamie Reed who could tell you lots more. So, up the research grant, help find a cure and/or prevention and help eradicate diabetes full-stop.
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    dblog week 2014