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Lots of love The Backpacker and the Pod xxx

Meeting the Prime Minister and HRH the Duchess of Cornwall - JDRF 30 years of progress event

‘Camilla praises Theresa May for ‘boosting’ charity by talking about her life with diabetes’ - (something we can all be grateful for)

‘As President, it has been a privilege to meet those who live every day with 

type 1 diabetes, as well as their all-important families who do so much to support them.  They are at the heart of everything that this charity is doing.  And although this is a time to look back over the many achievements of the last thirty years, I know that everyone at JDRF is looking forward in the hope that a cure for this devastating disease will be found in the not too distant future.' - HRH The Duchess of Cornwall. 

Meeting the Prime Minister Theresa May and Her Royal Highness The Duchess of Cornwall last Wednesday night was an opportunity I never dreamed of having. Arriving at the Guildhall in London we were met by Kris from JDRF who told my parents and myself that in 10 minutes time id be speaking to The Prime Minister Theresa May. Fair to say I was very nervous! However after shaking her hand and being told to address her informally as Theresa, my nerves disappeared. We chatted about our diagnosis’s, and how Theresa managed her diabetes through her hectic schedule. We also spoke about my blog and how raising awareness for Type 1 was so important. I showed Theresa that I wore my insulin pump on one arm and my Freestyle Libre on the other and that i didn't mind wearing my devices so publicly because it raises awareness. Theresa told me that she was just about to start using the Libre, so I couldn’t help giving her a tip! It was such a fantastic experience being able to talk to such a lovely and influential person about a disease we both face day in and day out. I also found out Theresa did a geography degree. We already have two similarities! - Does this mean I could be Prime Minister in the future?! haha. Speaking to Theresa’s PA afterwards she said she was impressed with how articulate I was when speaking to Theresa, I think I left an impression - and we have been asked down to Downing Street for a private tour!

“I am proud to support the important work of JDRF and it was a pleasure to join scientists, supporters and volunteers as they celebrate this important milestone.” - Prime Minister Theresa May

Throughout the night I met some amazing people who have really helped push the progress throughout the last 30 years, from researchers, to JDRF staff and the supporters. The speeches that were delivered were powerful and inspirational showing just how dedicated everyone is towards the end goal. 

“Here at JDRF we never lose sight of the ultimate goal of finding the cure and creating a world without type 1 diabetes. As we look back at the accomplishments of the past 30 years it reinvigorates us to work even harder towards achieving this.” - Karen Addington, Chief Executive 

One person who stood out to me throughout the night was a man who has lived with Type 1 diabetes for 70 years. When I was talking to him he told me that he was on injections and that he uses a Dexcom. Pulling the Dexcom receiver out of his pocket he had the straightest line of around 6.5mmol! He told me he had no complications because of his Type 1 and nothing wrong with his eyes. This man is my new inspiration. This just shows that you can do anything with Type 1 and live a normal and healthy life.

Later on in the night wearing my pod on the back on my arm I had many people asking me about it. Speaking to a few parents of Type 1's at the event they said my pod was like a ‘party pod’ because it was painted with nail varnish! Haha! Someone else who’s eye my pod caught the attention of was HRH The Duchess of Cornwalls Personal Assistant. Seeing it and talking to my mum they called me over to explain it and explain why I wore it so boldly. A moment later I was speaking to The Duchess about my insulin pump and my everyday life with type 1. I was asked if lots of people ask what it was. Laughing and chatting I told The Duchess that I used to tell the Beaver Scouts that I was part robot as it was hard to explain to young children. Cue laughter from everyone around us! It was such a nerve racking and amazing experience speaking to The Duchess and my blood sugars completely agreed with the adrenaline I was feeling! Straight line on my libre going up!

It was such a privilege to be invited to the 30 years of progress event. It was amazing to see how every single fundraiser and advocate has helped JDRF’s projects throughout the last 30 years. So thank you to JDRF for everything the charity has done for Type 1 diabetes. But thank you to every single supporter because everything we do, big or small, helps towards that one goal that we all want. 

Unity is strength … when there is teamwork and collaboration, wonderful things can be achieved. 

Lots of love The Backpacker and the Pod xxx

Defined.

Defined.

We are defined as diabetics. 

But we are not diabetics - we are not our disease.

Even when people without diabetes are not judging us we are judging ourselves.

HBA1C.

We judge ourselves on this value.

Are we doing well enough managing this disease we did not ask for?

Today I had clinic.

I don't have a perfect HBA1C, I am not a perfect diabetic.

Is there such a thing?

I am not defined by my HBA1C, I am not defined by my HBA1C, I am not defined by my HBA1C

But I am.

Maybe not by my consultant and diabetic nurses who just want us to try our best.

But by myself, ourselves.

A disease that is so defined by numbers.

And im not saying a HBA1C isn't important because I know it is.

The complications, the worry and the guilt that comes from one number.

Striving for this one perfect number.

A non diabetic level in a diabetics world.

If mine isn't the NICE guideline HBA1C I cry.

I am defined by a book not a person LIVING with diabetes.

Yet I shouldn't define myself and neither should anyone else. 

We are advocates, bloggers, twitterers, gbdocers and friends.

We are more than just a number.

But numbers are important in our life.

The question is where do we draw the line between textbook and living?

Lots of love The Backpacker and the Pod xxx

Diabetes is like a pair of new shoes

Diabetes is like a pair of new shoes

Strutting up and down the shop floor looking at the new shoes on my feet, I convince myself these are the comfiest shoes Ive ever worn - plus they are in the sale how can I resist!? 

In the first week there is a lot to learn - how to walk in these new shoes/ how to manage your diabetes - where you need the blister plasters/what needs adjusting with your daily diabetes routine. But you'll make mistakes and sometimes loose your balance in your new shoes and the same goes for your diabetes! Face fears, stumble and sometimes scrape your knees. Nobody is perfect.

After a while of wearing my new shoes my feet begin to hurt from the constant rubbing and tearing at my feet - like the constant toll of living with diabetes. Except I can't take off my high heels and change into flats when diabetes takes its toll on me. There's no pressure that can be relieved by a pair of comfy flip flops on a way home from a night out with type 1!

Sometimes you just have to fight it.

After a while the new shoes become worn. Shoved to the back of the cupboard and to be worn as a last resort. How burnout feels with diabetes. Sometimes I want to shove diabetes into a shoebox in my wardrobe! You want to not have to think about diabetes for a while and like a pair of new shoes the implications of buying them. The long term cost. 

Like a pair of new slippers diabetes can't be taken off before getting into bed for a good nights sleep. Diabetes never sleeps.

Like a pair of wellies we have to strive through the muddy and hope for a few dry days.

And like a pair of new shoes - we have to carry on no matter how much pain we sometimes feel. 

MAMMA MIA!

The view out of the studio

DXStockholm - Day 2 and 3

Just over a month ago I wrote about the first day in Stockholm but in pictures. We learnt whilst in Stockholm that Twitter images receive 18% more clicks, 150% more retweets and 89% more likes than twitter statuses. So it got me wondering if blogging in pictures would reach a wider audience. It did by 30%. A PLOG (picture blog).

The first thing I learnt.

The second is that I will never be able to frown as well as the Grumpy Pumper. 

I literally cannot frown!

The third. I was surrounded by some fantastic people.

Day 2 in Stockholm started in a quirky building where we had talks from lots of different creators.

I mean how tumblr! (love love love!)

The day started with a synchronised bg test from Pippa and myself - it was some spooky diabetes voodoo magic!

Same line for 12 hours!

We had many different talks from Marie Ennis- O’Connor who spoke about her powerful journey through breast cancer and her journey as a digital health advocate to Rudy de Waele who predicts the future of technology!

The Snapchat class taught us how to engage with a different type of audience with Geeohsnap, showing us the creative content he creates to a massive following. The session on Snapchat, which I already use, was a really fun and engaging session testing out the snapchat filters and it was amazing to hear how Geeohsnaps snaps create a positive platform which inspires lots of people. 

And of course we had to try out all the filters!

But seriously Grumpy - how is it still possible to frown with a flower crown?! ;P 

We had to have a snapchat picture on snapchat! - Geeohsnap

In the technology and body hacking session we met Hannes Sjoblad, where we learnt how to make our own DNA, we wore bunny ears that moved depending on our concentration and used Visual Reality - showing just how quickly technology can move forwards.

Testing out the brainwave bunny ears with Bente! 

Making my own DNA

The result

Later on in the day using Geeohsnaps idea of transforming people doing everyday things into something different and exciting we made #DXStockholm postcards showing people that Type 1 Diabetics can do whatever they want, eat what they like and travel till their hearts content. Reinforcing the message that Type 1 Diabetes doesn't hold us back.

How much does it look like Bente is trying to hit me on the head!? haha

Day 3 started with learning about Abbotts ‘in the vault’ projects - one of which has recently been launched the ‘LibreLink’ (see my last blog post). It was fantastic to hear about how diabetes technology is moving forward and the LibreLink shows us that! 

After saying our goodbyes to the friends we’d made Adrian (a fellow friend and GBDOC blogger) and I along with Fiona,Ollie and Chris from Abbott headed to the ABBA Museum. At this point I knew Adrian was a massive fan but I dont think id prepared myself for singing on the stage with the virtual ABBA band and recording Mamma Mia in a recording studio! Later we were joined by Phillipa (another GBDOC blogger, her husband James (the creator of #DXFringe - a hashtag which caused much amusement) and Baby G. It was such a laugh and a brilliant afternoon not only getting to know my fellow bloggers a little more but also getting to know the lovely bunch who work for Abbott. 

Mamma Mia - here we go again

The new 'Abbott' 

After heading back to the airport and meeting Jen again we boarded our flight. This time Adrian and myself couldn't sit next to each other - we sat across the aisle. Only adding to the 2 hour blog war that commenced to see who could blog about our amazing trip first! 

The trip to #DXStockholm was an amazing experience! Id never met bloggers from other countries who blogged about diabetes despite being Facebook and Instagram friends with most. Learning about new blogging ideas, and the next ‘in the vault’ projects that Abbott are developing was a fantastic experience - one that I will definitely not forget anytime soon! One of the most amazing parts for me was talking to new friends - who by the end of the trip felt like old friends - learning about their diagnosis, their diabetes and of course them as a person. The friendships that last a lifetime. This week Ive been on holiday in Germany where Finn and myself found time to meet each other to catchup after meeting at #DXStockholm. Its lovely how diabetes itself can be such a negative yet it can be turned into such a positive.

Lots of love The Backpacker and the Pod xxx

Launch of the LibreLink!

New Mobile App Enables Smartphone Access to Glucose Data Directly from FreeStyle® Libre Sensors

Today is the Lanch of LibreLink! 

Abbott, in partnership with AirStrip, have created ‘LibreLink’ which is an app on Android smartphones allowing you to see your glucose data on your phone straight from the Libre sensor. For me this sounds brilliant allowing me to carry less diabetes equipment and easily being able to access my levels from my phone which, quite simply, never leaves my hand!

Finding out about this in Stockholm I have been desperate to try it. On Tuesday night I had a Skype conversation with Abbott, #DXStockholm friends, Joel - the research and development product lead who gave us a further insight into the app, and Steven Dixon (our Type 1 celeb in residence) showing us his user experience. Very exciting stuff!

Speaking to Steven he had lots of positive things to say about the LibreLink. Hypo at the time Stevens phone showed a reading, behind which was a red background. Red shows a hypo, green an in range level and amber a hyper. Steven also showed us how much clearer the app is to see the trends of his data - with a bigger screen than the current reader you can spot patterns in more detail. The app also gives you an estimated HBA1C, something currently you cannot get straight from the Libre handset. 

The LibreLink app can be used with the phone alongside the Freestyle Libre handset if you wish, however this must be scanned by both devices within the first hour of the sensor startup ‘limited late join’ (scan with the Libre handset first). Both devices must be scanned every 8 hours if you wish to see a trend line of data. The difference between the app and the handset is that there is no test strip/ketone strip availability with the app and there is also no insulin calculator - something myself I haven't used so this wouldn't bother me. However the app allows you to share your data directly to the cloud and it can be shown alongside Diasend displays - which normally I would only see at clinic appointments. 

So far the app will only work on Android phones on the Google Play store, this is because (and Im not a tech wiz so I don't really understand) but it uses NFC (near field communication) - something that is limited in Apple phones to Apple Pay. With the Android phone the scan point on the phone will vary depending on the size and location of the NFC and if the worst was to happen and your phone broke - the data would already be saved in the cloud.

Unlike apps like Snapchat, which I'm obsessed with, the LibreLink app does not drain your battery, only using a very small amount, and doesn't take up much storage! Something for a social media addict like me means that I can also keep all my favourite apps in addition to the LibreLink. 

PSSTTTTT - ITS FREE!

With 10 days left on my current sensor I can’t yet start using the LibreLink! Its going to be a long 10 days! The app is going to allow me even more freedom than the Libre already does - how is this possible! I’d love to hear everyones thoughts on the app and I'm going to be very jealous until I can start up a new sensor! 

Thankyou to Stephen, Joel and the Abbott team for allowing me to be part of the LibreLink process and I cannot wait to use the app!

Lots of love The Backpacker and the Pod xxx