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Pop4Diabetes 2015 with DRWF

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pop4A couple of weeks ago Jane and I were invited to attend the Pop4Diabetes ball as a thank you from DRWF for things I’ve done for them. Claire and Lee from DRWF hosted us for the evening, alongside other volunteers such as Lynwood who does a lot of fundraising and other events for them.

What made the evening more special was that my Dad and step-mum Liz were also invited by Claire and Lee. My Dad has had Type 2 for quite some time but it was only Amy’s diagnosis which spurred me on to learn more about his Type 2 and ultimately to get him to learn more about it. Since the DRWF Wellness Day in 2013 Dad has volunteered for DRWF, helping them with mailshots, poster deliveries and many other things. He’s given a good deal of time helping out for the good of others so it was lovely to see him be invited to attend the ball too.

Pop4Diabetes is an annual ball like event, spearheaded by Iris Board who’s son Shane was diagnosed with Type 1 Diabetes several years ago. Shane is an actor/singer/presenter who has released various Type 1 oriented songs over the years, including the recent Find A Cure.

The event is frequented by celebrities past and present and this year Anita Dobson – Angie from Eastenders – was there supporting the event, along with internet star Jack Jones.

Music and dancing is the theme behind this event and it was great to hear songs from Shane and others, as well as songs and dancing from Naomi Bowring, a talented dancer/singer and Miss England candidate. There was dancing from local groups, some made up of adults only, others made up by kids, as well as a type 1 choir who sang a song.

Pop4Diabetes also gave out some awards to a few kids with Type 1 who had achieved good things over the years. It was lovely to see the smiles on the kids who received these awards and the pride beaming on theirs and their parents faces.

I really enjoyed the event but for me the highlight was being able to spend some time with DRWF and their supporters, and especially being able to chat all night with Lee (DRWF), chatting through all topics Type 1 related.

Pop4Diabetes was a great event, Iris has done well to pull it together and raise thousands of pounds yet again for charity.

The Bournemouth Echo did a nice write up about this year’s Pop4Diabetes event if you would like to read more.

Riding the Prudential Ride London Surrey 100 for JDRF

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web-RLBR0092I’ve neglected the blog lately so it’s time to start catching up with things, starting with this, my round-up of my biggest cycle challenge so far, raising money for JDRF.
The Prudential Ride London Surrey 100 is a 100 mile cycle ride on closed roads, starting in London’s Olympic Park and heading through the city, out via Kingston towards the hills of Surrey before returning to London with the finish on The Mall.
It’s certainly doable for a keen cyclist if you put the training in beforehand, bearing in mind that I could barely cycle 25 miles a couple of years ago.

Getting a place

There’s two ways to get a place for RideLondon, either apply for a ballot place, or sign up for a place purchased by a charity. The charity route often means you’ll pay nothing up front but will commit to raise £500 or more. The ballot route means that you don’t need to raise any money for charity but you’ll pay a small fee – £50ish – if you’re lucky enough get ballot place.
With only a 1 in 5 chance of getting a place many are forced to go the charity route. I was lucky in the ballot but still decided to raise money for JDRF, breaking the £500 mark once GiftAid had been added.
Whilst no ballot place rider is forced to raise money events like this raise much needed millions for various charities and people realise that this is, for the amateur rider, an effort worth sponsoring.

passing Parliament

Nerves, nerves and more nerves

As the day came closer I got myself in a pickle: would I make the distance?; would I be too slow?; how would I get myself to London and back…and lots more.
The biggest worry was whether I’d be fast enough in the early section, especially if I suffered a puncture or mechanical issue in the first 20 miles.
I’d have 2hrs21 to make it to Hampton Court (26 miles) by 11am or risk being ousted by the dreaded ‘broom wagon’.
I knew I could beat a 12mph pace as long as no mechanical issues arose.

The day dawns

Waking up at 3am – there really was no point setting a 4am alarm! – people were already on Twitter, talking about loading up their bikes on the cars and generally getting excited.
Nerves had dissipated leaving only excitement.
I was in London by 5:50am, parking at Euston station which left me 7.5 miles to cycle to the start and importantly only 2.5 after I’d finished. I’d unknowingly parked next to another RideLondon first timer and we got ready together, each wondering what the event would be like.
The cycle to the start through a relatively sleepy London was easy and relaxed.

And we’re off

Richmond ParkStarting 25000 riders off takes a long time so they do it over three hours, with waves or riders going off together a few minutes apart. I was in the orange ‘N’ wave, starting at 8:39am, along with a fellow member of #GBDOC, Midge. Midge and I talked for some time whilst edging forward towards the start line, both eager to get going.
The DJ at the start span up Darude’s Sandstorm as we set off, which pleased me as others had departed to all manner of music I hate.
The start was relatively mellow, quite slow until we got on to the dual carriageways towards the centre of London. The speed increased and increased again and I was buzzing along at a steady 20mph, that’s pretty quick for me.
Midge and I seemed to play cat & mouse, one minute he was in front, the next it was me and suddenly he disappeared (probably way in front).

Faster than your average

They say you have to be able to average 11.75mph to complete the 100 miles in time, but the first cut-off is at 11am, 26 miles in. With my average riding pace being 13 to 14 mph I knew I’d make it, if I had no punctures, but I was very surprised to average almost 19mph over the first 26 miles, that’s way faster than my average. If you’d told me before I be so quick I would never have believed you.

One big JDRF team

Photo with JDRF Clare's kids at Newlands CornerJDRF had 100 riders in the event and we all started at different times but we all shared a common ground in Type 1 Diabetes.
Before we’d even set off I bumped into a couple wearing JDRF jerseys and had a very brief chat. I decided at this point that I would make sure I cycled over to any and every JDRF rider I was cycling near at any point and I’m so glad I did, it mad the event so much more enjoyable.
Within 5 miles I passed and chatted with another couple also wearing the team jersey, at mile 10 I rode alonside Rosie for few miles and was amazed that her ladies cycle team organised by Jenny Carr were all supporting a cause unrelated to their lives; much similar to all my friends joining in with Nightrider last year.
Around 40 miles another JDRF jersey spotted, it was Adam and we had a great chat about insulin pumps, diagnosis, insulin and the “cure”.
Team JDRF had their own set of cheerleaders at Newlands Corner, Dr Clare McVicker with her family were cheering us all on. It was lovely to stop and have a brief chat with Clare who got quite excited when I mentioned I was on Twitter and immediately I got a new follower.
Before setting off from Newlands I met more of Jenny’s team and afterwards cycled all the way to Dorking with a lovely couple from Cardiff.

Box hill

A few miles later after a brief stop at Box Hill I cycled up to another JDRF rider.
“Hello” I said “Nice jersey”.
“Haha, yeah your’s too. Hold on I know you, you’re Kev”
Quickly searching my memory and stalling for time by making out I had to steer around a stone or something, I embarrasingly couldn’t put a face to a name but luckily Paul introduced himself. Paul and I had chatted a few times online and we followed each other on Strava but I’m not I’d ever seen a picture of him – well that’s my excuse for not recognising him. Paul and I whiled away the miles chatting which was easy as we were similar speeds and very similar stories to share. Before we knew it we had covered over 30 miles together and finished on The Mall both with a 30mph+ sprint finish.
Being part of the JDRF team really made this event for me and riding with Paul was a big part of it.
web-RLDN8386

Best ride of my life

Given that this year I’ve ridden London to Paris with friends I can’t say Ride London was the best ride of my life BUT it’s pretty close. I met some wonderful people all supporting the Type 1 cause, I cemented a friendship which will last a long time, I rode 100 miles for the first time ever and raised a fair bit of money too.
If you’re thinking of riding Ride London then I say do it, you won’t regret it.
After finishing on The Mall

Cycling from London to Paris for INPUTDiabetes – How it went

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London 2 Paris Logo + Input LogoWhilst the cycle ride from London to Paris had nothing to do with Type 1 Diabetes as such I was raising money for INPUTDiabetes so here’s a little bit of information about how it went.

Fundraising

Initially I set a target of £320, one pound for every kilometre of my trip. This seemed like a good idea for me as I guessed I’d have some tired dark moments where it would be an effort to turn the pedals and the thought of raising another pound for just one more kilometre would spur me on. Luckily this never happened.
Initially the uptake for sponsorship was slow and I was worried that I wouldn’t even make £100 but towards the event itself sponsorship poured in and exceeded my target.
I raised £511 which will turn into £623.75 including GiftAid.
A key thing is that I never felt under pressure to raise this money, I didn’t have to pressure people to donate just so I could reach a target set by a charity, as is the case with organised London to Paris rides. These targets are generally £1500 minimum sponsorship for a trip like this.

How much did it cost?

£200.
Yep, that’s all.
If I’d gone on an organised event I would have still had to pay £100 up front.
The price included all travel costs, all accommodation costs and some food but not all. It doesn’t include any extra bike bits (pannier, rack) or clothes you might need to buy.

How did the trip go?

Honestly I don’t think the trip could have gone any better: the routes worked and we never got lost; our bikes didn’t break; the accommodation was superb; we all had a great time.
One unknown for me was how I would feel on days 2,3 and 4 having to get up and get back on the bike for several hours. Each morning though I woke up fresh and ready to get cycling again, excited about that day’s ride.
For more information take a look at the new blog I created all about the trip, particularly the Trip Reports area.

Fancy trying it yourself?

If you can cycle 50 miles at 10mph you can do this trip too. None of us trained to be able to ride the full distances day after day – see this training page for more info – and as you’ve got all day to cover the distances the pace can be quite slow.
I’ve created a new blog which details all the routes, the planning, the costs and reports about each days’ rides here: London to Paris Cycle Ride.

Why I am Cycling to Paris for INPUT Diabetes

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London 2 Paris Logo + Input Logo
Disclaimer: this post is all about fundraising – sponsorship link is here.

The beginnings of a trip

In preparation for doing last year’s 100km Nightrider charity ride with group of work colleagues we naturally formed a team bond, of people who just enjoyed cycling together. After the Nightrider event we decided that we’d cycle somewhere in 2015 as a team. It had to be a bigger challenge than before whilst not being so silly we’d never make it.
Many months later and the rough idea was formed: we would cycle from London to Paris taking in much of the Avenue Verte, south of Dieppe. With routes planned the trip works out at 320 kilometres, over 4 days, split into two days of 100km, one of 65km and the last of 55km.
This ride would be an aided ride, quite different from the normal London to Paris route where people are guided by a company who plan the route, the hotels, supply food, have support vehicles which carry your belongings and charge a fair bit for doing this.
This trip is a cheap trip, I’m organising the routes, we’re carrying our own gear and it’s going to be fun too. It’s costing less than £250 all in.

To fundraise or not to fundraise

Originally the plan was to get some sponsorship but after a while the group decided to just treat this as a holiday. I on the other hand decided to respond to Lesley from INPUTs question from the previous year “I wondered if you’d like to raise some money for INPUT, we don’t need much to keep going”.
So with that thought in my mind I decided that INPUT Diabetes would be my charity of choice for this trip.
If you’d like to sponsor me the sponsorship link is here.

Why not raise for a bigger charity?

Quite simply, I already have.
As a family we’ve already raised thousands for JDRF and as a national peer supporter I devote a fair amount of my free time to Diabetes UK.
Selecting INPUT was in some ways a difficult decision, given that there are so many smaller worthy charities I’d like to raise money for – DRWF, T1International, Diabetics with Eating Disorders, Seahawks – all of whom never seem to attract the fundraisers the way bigger charities like JDRF and Diabetes UK do.
These smaller charities need such a smaller amount of money to keep going and provide such a valuable service for the people they support.

A little more about INPUT

Unashamedly stolen from their website here’s a little more about INPUT Diabetes.
We aim to help any person who could benefit from insulin pump therapy, and has motivation to use it, to access it through the NHS. Our mission is to support patients by advocating for easier access to diabetes technology across the UK – from insulin pumps to smart glucose meters and continuous glucose monitoring.

INPUT the charity we’ve never needed

We’re the lucky ones, we’ve never needed to use the services of INPUT and although I’ve asked them the odd question we never needed their help, but so many others do. Raising money for them is more about recognising the great job they do advising people of a way forward to get an insulin pump, helping them through decisions about pumps and CGM.
Seeing Lesley at JDRF Discovery Days tirelessly trying to help others is a lovely sight, she’s such a great advocate for pump therapy. Hearing another one of INPUT’s team, Melissa, talk about the Diabetes UK Big Event was also great as spurred me on to looking into using CGM as soon as possible.

And finally…

Just in case you missed it…my sponsorship link is hereLondon 2 Paris Logo + Input Logo

Dr Ponder’s Sugar Surfing Workshop at the JDRF Discovery Day

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Dr Ponder's WorkshopIt’s taken me a lot longer to get started on this article than I would have liked but actually it’s done me a favour as Julia has already written a brilliant blog all about it, so I’d suggest you have a good read her article Sugar Surfing with Dr Stephen Ponder MD

So I won’t repeat what Julia’s written but just talk around some of the rest of the event…

The most eagerly awaited Discovery Day?

Over the last few weeks the buzz around last Saturday’s JDRF Discovery Day has been getting stronger and stronger, everyone excited to meet Dr Stephen Ponder in person and listen to his introduction to Sugar Surfing.

On Thursday after I’d interviewed Dr Ponder for Diabetes UK he asked me what to expect at the event and I told him:
“There’s a long waiting list for this event, people are travelling hundreds of miles, some are coming from France just for the day, Twitter and Facebook are buzzing. I expect that you won’t hear a pin drop during your presentation.”
He told me he was excited to be able to present to all of us.

Blasé about travel time

In true Winchcombe style we were running late which annoyed me as I had so many people I wanted to meet and chat with. I blame myself, this was my third time in London this week and it’s “just up the road” (80 miles).
This was the only downside to the day, I wish we’d left earlier so I could spend time chatting with people like Helen & Andy and especially Kevin and Julie as they’d both travelled from France – not together I hasten to add, just to dispel any rumours 😉

A Discovery Day like no other

On arrival we had to sign in, nothing unusual there, except we were in a long queue and there were hundreds of people. Immediately I spotted a few familiar faces whilst I looked around for those I’d been dying to meet; Kevin, Julie, Helen and the legendary Dave Berry. (Dave’s a legend amongst us Diabetes Dads on the CWD UK Dads Facebook group)
I’m sorry to all the people who came up or called out ‘Kev?’ if I didn’t recognise you immediately but my mind was a whizz playing a nanosecond game of ‘Guess Who?’.
In all honesty I really needed this Discovery Day to have about fifteen 30 minute coffee breaks in it, just to have time to talk to people.
It was a delight to hear the joyful screams of people who met for the first time, after keeping each other company through the dark times and middle-of-the-night glucose checks.
This is one hell of a community.

Before the start

I milled around chatting to some online friends I’d never met before, before I spotted Dr Ponder who was busy book signing. ‘Kev’ he said ‘how great to see you again’ which I guess means my interview with him a couple of days before didn’t go badly. Before he had chance to introduce me to his co-author Kevin McMahon they were all called in to the hall as everything was just about to start.
Luckily I found time to have a good chat with Kevin during the main interval, he’s a truly outstanding character with an all encompassing knowledge which stretches far further than mine and I’m a little envious of his endorsement from Scott Hanselman on LinkedIn. I wished we’d had more time to chat.

Feeling sorry for the first speakers

JDRF Discovery Days always have a couple of people speaking before the person who does the science bit and normally this works well but this time I felt sorry for them as in the nicest possible way the audience’s silent ‘Get off’ was deafening.
Elle Dormer was introduced and she spoke about how she had found Dr Ponder online, instantly connected with what he was saying, then attempted to get JDRF and Diabetes:UK involved. I’ve never met Elle before but I imediately took a shine to what she was saying and how she felt, that was until she had a dig at D:UK, I ain’t got time for that, it’s a pet hate of mine and others, because I know that they are the only charity truly able to provide personal support & assistance with school / legal issues for people with Type 1. I know that D:UK, due to personnel issues, had dropped the ball on this one and feel quite bad about it, perhaps Elle didn’t know that though.
Elle, if you’re (still) reading this can I personally thank you for all you’ve done to organise the events for Dr Ponder. You’ve done the community proud. Thank you.

The Sugar Surfing presentations

As Julia’s documented this so well please read her blog for more information: Sugar Surfing with Dr Stephen Ponder MD.

The ultimate way forward?

After my interview with Dr Ponder – or Steve as I like to call him now – on Thursday I was already totally sold on this being a good way forward if Amy chooses to want to do it. That’s why I took her there, so that she could find out information about other ways of dealing with her diabetes. For the record she didn’t really want to go, she had a million other things she’d rather do, as is the way with teenagers, but she went and learned quite a lot. On top of this it reinforced that the things she was doing already were good.
As a family we’ve looked into lower carb eating to minimise glucose spikes and it’s easy to see that it doesn’t suit Amy as a full time way of eating, therefore I see Sugar Surfing at the next best thing. In fact it’s clear to me that a relaxed combination of the two is a very good (but not the only) way forward.

The post-presentation buzz

So many people I spoke to at the event or online afterwards have said how much sense it all made, how there were doing some or all of the stuff already, how they can see that with only some minor changes their kid’s or own hBa1c’s could improve…although obviously whilst that’s a good measure it’s not the be all and end all.
I get the impression from some that they learned nothing, that they did all of this already and that’s great as that means they’ve been Sugar Surfing for some time, that they’ve realised that these little and constant adjustments work well.
For me Sugar Surfing tells us that it’s okay to do this, that we should experiment, that we should approach diabetes management with an agile mind, that we should find what works for us, that we can always learn and improve.
More importantly in confirms that concrete thinking is not the way forward.

Thank you

I’d like to personally thank Team Ponder (Dr Ponder, Kevin McMahon, Patsy, Mackenzie and others) for doing everything they’ve done to get Sugar Surfing in print and for the presentations given on Saturday.

And finally

If you’re interested in learning more about Sugar Surfing please visit SugarSurfing.com and join the Sugar Surfing UK Facebook group which James set up on Saturday.

A slidedeck similar to Saturday’s slides can be found here: Sugar Surfing Master Slide Deck August 27

Talking Sugar Surfing with Dr Stephen Ponder

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What a week

duktweetIt’s been an amazing week of privileged invites and questions of ‘why me?’. Firstly, along with Amy I had the opportunity to be part of Dr Partha Kar’s session on transition at the National Paediatric Diabetes Team Meeting in Birmingham and yesterday I had the huge privilege of interviewing Dr Stephen Ponder on behalf of Diabetes UK. When Ruth, my Diabetes UK National Peer Support Manager, asked me if I’d be interested in being part of this I initially thought of refusing, surely there’s other peer supporters more suited but after a while I realised how suitable my experiences and knowledge were. So with nervous ‘Yes’ I signed up.

Meeting the team

Almost immediately my worrying mind was put to rest as I found out I’d be doing this with Diabetes UK National Care Advisor Chris Headland who’s a driving force behind the very successful #Type1Uncut team/videos.

Thinking of some questions…or rather sub-contracting the job

I’ve known about Dr Ponder’s Sugar Surfing for some time and have seen many posts on the Facebook page. Yet when faced with getting some questions together for the interview I felt I knew precious little so I turned to a friend from the Diabetes Online Community, Carolyn, who’s son has attended Dr Ponder’s Texas Lions Camp. Carolyn’s suggestions were great and with a few alterations formed the basis of much of the chat with Dr Ponder.

Obviously too excited

With the interview due to start at 11am I arrived a little earlier…about 2 hours early, I guess I was quite keen. Meeting Chris for the first time was like greeting an old friend, then all the Diabetes UK team and finally Dr Ponder. We chatted for a while about what we intended to do and what would happen next and afterwards just to make sure Dr Ponder was happy. He was.

Dr Ponder and me

A chat amongst friends

“Interview” seems like such a formal word, everyone seemed so relaxed I’d say it just felt like a chat between friends, with two friends captivated by every word their more worldly-wise friend said.
As Diabetes UK are going to release information and hopefully video footage with the next weeks I won’t go into detail about the questions we asked nor the answers Dr Ponder gave, just watch this space for more information.
Part way through the chat Carolyn tweeted to Diabetes UK and I made Dr P laugh when I asked D:UK to reply with a firm ‘No, we’re keeping him’.
carolyntweet1
Before I knew it two hours had flown by and it was sadly time for our chat to end, although Dr P and I kept chatting for a while longer.

Dr Ponder

I think I’m a pretty good judge of character, I can spot an idiot mile off, self-centered people last minutes before I discount them, people with ulterior motives can’t hide it for long. On the other hand the good folk out there just leap up in front of my eyes.
I could be wrong about this but I’m willing to stake my neighbour’s house – not mine just in case I’m wrong – on the fact that you’re unlikely to meet a nicer chap than Dr Ponder.
He seems to have spent an inordinate amount of time trying to make other peoples’ lives better and now with Sugar Surfing he appears to be branching out worldwide.
Of course none of this should be any surprise to me as Carolyn has been saying this for ages and I judge that she’s a pretty good judge of character too.

Sugar Surfing

(For some actual information about what Sugar Surfing is check out these slides.)
As Dr Ponder explained how Sugar Surfing came about I found myself nodding with every word and it soon became clear that this was something we’ve been waiting for. Yes, we’ve been doing things like pre-bolusing, super-bolusing, microdosing, microcarbing occasionally for a while but all by trial and error – mainly error. Amy has previously under her own steam bolused for dinner and waited until at the lower end of her range before eating.
Chatting about the lag of CGM, the lag of insulin, the working time of insulin, watching the CGM curves to bottom or top out I realised we were a family that could probably jump straight in to try Sugar Surfing for real.
Here with the Sugar Surfing book in my hand we had a training guide that no-one had offered us before.

It’s time to start reading that book but not before tomorrow when I have the pleasure of attending the JDRF Discovery Day in London and listening to Dr Ponder for a few more hours, something I’m really looking forward too.

A date with the healthcare professionals at the Lilly conference

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The stage at the National Paediatric Diabetes Team Meeting
The stage at the National Paediatric Diabetes Team Meeting

Hoist by my own petard

Last year Amy took part in Dr Partha Kar’s Q&A session at the Lilly National Paediatric Team Meeting in Birmingham. I didn’t think she’d be interested in doing it so I impressed on her how much of a privileged invite it was; how doing it would be good for her; how much more confident she would afterwards. Those words came back to haunt me when Dr Kar asked us again, but this time wanted us both on stage. Amy said, “Dad, it would be good for you, it’s a privilege to be asked” and so on. I sometimes hate that her memory is so good.

At 10:15 our chauffeur arrived and us whisked up to Birmingham where we met Rebecca (who has Type 1) and her partner Jack, both of whom were due on stage with us, not that Jack seemed to know. Partha called, he was running late, to prep us with the plan for the event. But first it was time for lunch and a lovely chat with Francesca Annan who’d popped out of the conference to come and see us, as she and I had been chatting online since last year’s event. After lunch we headed off to be mic’d up, bumping into Dr Fiona Campbell who thanked us for coming up to the conference.

Session One – Ask The Experts

The first session saw Partha ask a panel of experts and the audience of paediatric healthcare professionals about their patients transitioning to adult care but there was an imposter on stage, me. I was so nervous being on the stage in front of everyone, under the bright lights, that when it became my turn to introduce myself all I got out was ‘Hi, I’m Kev, I’m just a Dad, a Diabetes Dad’. A pretty crap intro but actually maybe it wasn’t, after all I had role as an expert I merely do my best to help Amy through her condition.
Partha asked the experts about the issues with adult care before coming to me to ask how I felt about what I’d just heard. “Horrified” I said, no-one seemed to have any faith in adult services in their own hospitals, let alone others. How could this be? Partha asked for a show of hands to confirm this and all hands remained down. Shocking.
I got carried away listening to the eloquent Doctor talk about how adult and paediatric care needs to work together to ease transition as he asked the experts what they would like to say to adult service. My mind was switching thoughts about whether to say ‘communicate way before transition’, ‘work jointly with paediatrics’ or something else. When my turn came I settled for “We’re staying in paediatrics, Amy will stay 14 forever”. It may seem a strange thing to say but it seems that as soon as kids transition to adult care everything they get now disappears and no paediatric team has faith in their adult team. Shocking, really shocking.

Amy on stage at the Lilly National Paediatric Team Meeting

Session Two – Ask the Patients

With session one over I was joined on stage by Amy, Rebecca and Jack, all looking far more comfortable on the stage than myself, who at this point was gasping for a drink of water.
Partha discussed with the audience how the Portsmouth teams work together to ease transition for their youngsters, how they get all the young adults transitioning together and take them into one session whilst their parents go into a separate session.
First Partha asked us all how we felt about the care received and the response was favourable, it seemed we all thought the care we received was good on the whole, although it wasn’t all a bed of roses. It was interesting hearing Rebecca talk about the care she received and Jack talk about what it was like to be a partner of someone with Type 1.
Coping with transition was the next topic and Partha asked Amy if she felt she was ready for it. “Yes, I think so” replied Amy before I followed up to ask her if she felt she was educated enough – Diabetes-wise – to be left to her own devices. Although she felt she would be okay I pointed out that it was not the paediatric team that taught her those skills it was Jane and me, just like other parents do for their kids.
At one point on stage Partha joked about me being “SuperDad” which has since stuck when Amy feels the need to mock me about something. I must admit to prefer the nickname from last year “Sideshow Kev”.

Amy and me on stage

It’s a wrap

Straight afterwards a relieved Amy and I headed off for a large piece of cake each and I made quick work of a post-stage beer.

Final thoughts

We feel quite privileged to have been invited and we’d both do it again.
I’ve learned that answering questions in front of an audience is nervewracking but as no-one knows my story better than me there’s no need to be that nervous. However ad-libbing an introduction is not so easy.
Health care professionals are generally lovely people: from our chat with Francesca to our chat with Dr Campbell to our trip home with Partha, everyone made us feel so welcome, at ease and wanted.

DISCLOSURE
I’m a big fan of disclosure so here goes.
We were paid nothing for this, we took no gifts, nothing.
Ah, well, apart from the beer (me only!), the cake, the lunch and being chauffeur driven there and back.
Lilly and Partha gave us something far more valuable though: the chance to tell our story and help the future of people like Amy when they transition. I’m very grateful for this opportunity.

Continuing Connections – Diabetes Blog Week, Day 7

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blogweek6

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

TypeOneWriteshttp://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.
Frank's tweet about Circles of Blue

 

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

Capturehttp://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).

Favourites and Motivations: Diabetes Blog Week, Day 6

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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

Motivation

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

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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

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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.

Clean it out – Diabetes Blog Week, Day 3

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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

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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

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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.