PWD Conference 2015.

This past weekend, I had the honour of attending the PWD Conference 2015, organised by the GBDOC and Team Blood Glucose. It's the first of it's kind in that it was organised by patients, for patients. There was no agenda. There were no companies present. Just us: the people living with diabetes, both type one and type two, and those caring for those living with diabetes.

So, Friday evening saw me running out of work, rushing home, getting changed, grabbing my things and leaving again to make the train to Nottingham, where the conference was held. I met Lizzie en-route, and after just under two hours on a very packed train, we'd made it. (A word of advice - never catch the first super-off-peak train out of St Pancras to Notts if you want a seat; it is highly unlikely you will get one!)

I don't think anyone was really sure what to expect when it came to the day. Like I've mentioned, there was no agenda. What this basically meant was we picked what conversations we wanted to be having. Topics ranged from diet and food to managing blood glucose when exercising, diabetes in adolescents and mental health issues. The sessions were ran by us, and the conversations kept on going. It was diverse, and if you didn't want to go to any, you could stay in the main room and catch up with friends, old and new.

A-conferencing and checking out DexDrip.

When I go to events such as these I'm looking to connect with my peers, and that's exactly what I did. I hung out with old friends, connected with new ones, and hugged those that I talk with online through the DOC on a regular basis. We laughed, we learnt, we listened, we loved. We also ate cake. There was a lot of cake. Don't get me wrong, I also enjoy the more structured conferences, but it's also nice to go to these things and chill. It's nice to not be running from one presentation to another, and it was empowering to know that we, the people living with diabetes, were shaping the conversations being had.

The GBDOC and Team Blood Glucose should be SO proud of what they achieved last weekend, and I would like to thank those that organised it for having me. It was a privilege to be a part of, and I hope that there are more events like it in the future. 

(On a side note, after the conference, a small group of us ended up at Wollaton Park, the home of Wayne Manor from the Batman movies. Given my love for superhero-type movies, I thought this was wicked awesome, and it nearly (nearly) topped attending the conference itself. (I really love superhero movies!) See pictures below). 

Oh, Hi There Glowing Screen!

So life's kind of got in the way this past week. An update, in bullet point fashion:

 

Source.

• I registered with a new GP. I was told that during the "registration appointment" I would be able to discuss the things I wanted to discuss. Well, I couldn't. The appointment was with a nurse. She had to refer me to a DSN to discuss diabetes and another nurse to discuss the pill. Brilliant. Two extra appointments. I did get the flu jab though. So that's one less thing I need to do. 
• I'M EMPLOYED!! Last Friday, I was offered a job and I accepted. I started on Monday, and have just finished my first week there. So far, so good.
• Our Diabetes celebrated a year of tweet chats and support this week. A huge well done to founders David Cragg and Laura Cleverly! It's something I'm honoured to be a part of.
• I was reminded of how much ketones suck. Not that I really needed reminding. Sitting at my desk with ketones, but a blood sugar of 5.1mmol, left me baffled. Until I remembered starvation ketones. Note to self: eat breakfast, no matter how early I have to start work.
• I attended the JDRF Discovery Evening in London, which was such a great night. I met those behind T1 International, caught up with Gavin Griffiths, aka Diathlete (who has just finished his American tour) and got to give the very lovely Jen Grieves the hug I've been wanting to give her since she wrote That Post. (Capital 'T', capital 'P'). I also had the chance to put a few faces to twitter-handles, which was awesome. A huge thank you to all those at JDRF for organising the night!
• Thursday saw the Quality in Care Award Ceremony for Diabetes, with Roddy Riddle winning the People's Choice Award. A full list of results can be found here.
• Diabetes Awareness Month is fast approaching (how are we more than halfway through October?!) Already, advocacy campaigns are popping up on social media, such as the Smash Diabetes initiative from Glu and JDRF UK's Type Onesie is also making a comeback. I'm looking forward to hearing more as November gets closer.

 

Happy Saturday!  

Make The Grade.

"Make The Grade" is a Diabetes UK (DUK) campaign that tackles the problems children with diabetes face in schools. Taken from the DUK Make The Grade page, "sadly, too many children with Type 1 diabetes aren't getting the proper care they need - meaning both their health and education are suffering." This shouldn't be the case, and thankfully there has been a change in the law, and "from now on schools are legally required to look after children with medical conditions, including Type 1 diabetes."

I was really made aware of the campaign when Andy, Dad to L, a 10 year old child with diabetes, shared it on Twitter, rather proud of his son's contribution to it (and rightly so!) Since then, I've dipped in and out of the conversations around this subject, but, out of personal interest, remained up-to-date with it. 

Yesterday evening, there was a "Make The Grade" event in London (I know very little of the event, other than what was tweeted, so apologies for my vagueness here!).

This was the first tweet I saw:

Image from @DiabetesUK

And I just exploded with pride!

You see, what I didn't realise, until I read Kev's blog post yesterday, was that L was excluded from a residential trip because of his diabetes, which I think is horrific. What's more, he's not the only child with diabetes to be facing problems like this. 

So seeing the tweet above, and the ones that followed it that said "I don't let my diabetes stop me from doing the same things my friends do and I enjoy going on adventures" and "My school is great [L ended up moving schools]. They make me feel safe and happy", made my heart hurt and burst with pride at the same time, if that's even possible?!

Being diagnosed at 17 means that diabetes hasn't touched my childhood. It barely even touched my teenage years. It has, and will only, touch my adult life, and, rightly or wrongly, I'm grateful for that. So when I read about the incredible things that children with diabetes are doing, like L talking about type 1 diabetes at school and Amy, Kev's daughter, talking at the National Paediatric Diabetes Team Meeting, I'm inspired, and they make me feel proud to be a part of the diabetes community, online and offline.

They're real-life superheroes, as far as I'm concerned. But without the masks, as they don't need them. They have capes though. Who wouldn't want a cape?!

To find out more about the "Make The Grade" campaign, please click here, where you will also find further web links!     

Ready...Set...Go: #DUKBigEvent.

Oh, Diabetes UK, you know how to put on a great event!

The Saturday just gone (September 14th), I went to The Big Event hosted by, in case you haven't figured it out already, Diabetes UK (DUK). This post is long overdue, but here it is. I still don't think this will do the event justice, but I'm hoping it explains why I thought the day was full of awesome!

I went to the event with Lizzie and Louise; Lizzie, I knew beforehand, Louise, I didn't, but thanks to this amazing thing known as social media, I knew her in the online sense of the word. We registered, received our name badges and bag of goodies, and made our way into the main hall bit. Tea in hand, we made a quick plan of what talks we wanted to go to and headed to the first session, "What diabetes care to expect: Type 1."

This first session looked at the 15 Healthcare Essentials that DUK have said all people with diabetes should receive. Something that came up a lot during this session was the concept of "tailored healthcare plans" and the fact that "targets should be individual to each person" - yes, there are guidelines in place, particularly with the hba1c blood test, but it's important for healthcare professionals (HCPs) to remember that it's difficult for some patients to reach those targets: you are not your number. By adjusting them to match the individual, they're almost eliminating that sense of failure that they feel due to not meeting that magic 'a1c of 7% (53mmol/l). 

Photo courtesy of Louise.

The second session we chose to go to was "Insulin pumps and continuous glucose monitoring (CGM): basics." Obviously, pumps and CGM were covered, but they also spoke about the "Artificial Pancreas" and where that's going, which was pretty cool. I'm not all that great at science and the jargon that comes with it, so I'm not going to try to explain what it is on here for fear that I'll get it wrong, but if you click here and here you'll hopefully find better explanations than what I can provide!

Session three took place after lunch, and it was "Research and type one diabetes" which began with a brief history of diabetes-related research, kicking off with the discovery of insulin back in 1922 (thank you Banting and Best!) right up to present day where we have the "Artificial Pancreas" being trialled, as well as stem cell therapy and immuotherapies. Again, not being science-minded, I don't trust myself to relay information correctly, but if you click here you will be taken to the DUK website page where you can find information about all the current research projects going on and how to get involved in trials should you wish to.

The day ended with the session "Emotional issues: coping with type one diabetes." This was my favourite session, as I personally feel that this is overlooked by a lot of HCPs. People with diabetes are more likely to suffer from depression, anxiety, eating disorders, and it's important that we're aware of our triggers - we need to try to "recognise [stress] signals and know we need to take better care of ourselves." For me though, the key message from this talk was:

As the day drew to a close, a group of us made our way to a restaurant near the venue and sat down for an early dinner together and it was like we'd known each other for years. We spoke diabetes. We spoke about our lives in general. We laughed at the fact that Max had walked away with four new blood testing kits. Four. "They were handing them out for free!"
   
What struck me the most, however?! How sad I was to leave. Diabetes isn't exactly new to me anymore, but I am new to the whole actually having a support network in the form of other people with diabetes. But I wish I'd got more involved from the start, both online and off. I hate diabetes. I love the community. Community is good for my emotional health; it makes dealing with diabetes that little bit easier. In the words of Lizzie, "It's sad something like this [beta cells gone bad] brought us together, but I love it."

So thanks for having me, DUK. It was awesome, and I look forward to more events like it!

Five For Friday.

Or is it called "The Friday Five"?! Genuinely don't know! Moving on: five things I've got to look forward to over the next week, in the order of which they will occur:

1.   Brownies! I'm a Girlguiding volunteer, and after a year out because of my year abroad, I finally get to go back permanently, starting tonight. I've got the uniform out and my "Little Owl" name badge ready.

2.   Diabetes UK's Big Event takes place tomorrow, and I can't wait: a) I get to see Lizzie. b) I get to meet a few other members of the DOC that I've got to know over the last few months. c) Who doesn't love a good diabetes-educational-conference-type day?! Just me...okay...

3.   Seeing a friend to celebrate her new job, and gloat a little about how I was right and that something better would come her way. I know that sounds horrible, but it's not often I'm right with her!

4.   Seeing Jones and E.Hales and hanging with my Godson before uni takes over my life. We'll drink tea, eat food, play with the kid's toys and probably have an afternoon nap around the same time he does. Sounds like a good day, no?!

5.   Seeing my best friend, Nem, and her family to celebrate Liz-Loz (one of her younger sisters) finishing her 11+ exams. This means an afternoon and evening of being called "Auntie Micky" and giving her my undivided attention, but I wouldn't have it any other way. 

Greater Minds Inspire 2013.

Hedgie Pricks Diabetes is a charity organisation founded by Zoe Scott. It's main focus is "the two D's" - diabetes and depression - and aims to raise more awareness about the "psychological, emotional and social sides of living with this condition, especially depression, diabetes burnout and anxiety problems." 

On Saturday (July 6th) I had the privilege of attending the first Hedgie Pricks Diabetes event: Greater Minds Inspire. And it was just that: inspiring!

My day started early, what with travelling from Norwich down to Colchester where the event was taking place (and then I went from Colchester back to Kent). I got the train at the spectacularly early time of 8am, arriving in Colchester at 9am where I met the lovely Lizzie and together we figured out where the University of Essex campus was ready for the start of the event at 10am.

Upon arrival, I headed straight for the free coffee being offered needing a caffeine fix before the start. We then headed into the lecture theatre where Zoe opened the event. Throughout the day, we heard talks from various people within the diabetes community that have done some incredibly inspirational things with their lives, and a lot of the things said really did resonate for me, and I'm sure many others that attended.

• "Diabetes need not limit the scope of people's dreams and ambitions." --> Douglas Cairns gave a talk on flying with diabetes (as in being a pilot, not being a passenger on a flight!) and how laws are actually changing now and people with diabetes are being allowed to sit in the drivers' seat of an aeroplane.
• "Thrive with diabetes" --> Team Novo Nordisk explain how we need to do more than just live with diabetes. We need to thrive with diabetes. 
• "What's stopping you?" --> Pete Shaw spoke about his interest in kite surfing and how he deals with his diabetes. He posed the question "what's stopping you?" as diabetes shouldn't be something that holds us back from doing what we want to do and achieve in life. 
• "It's easy to let diabetes become the biggest part of your life" --> Another quote from Pete Shaw's talk, something I can very much relate to, particularly when I was first diagnosed. Diabetes was all I thought about, and it was horrible. But I soon realised that actually it's a small part of a bigger whole.   

My favourite talk was given by Gavin Griffiths who did what is being called the 30/30 challenge: running 30 miles a day for 30 days (crazy if you ask me, but a huge, huge achievement nonetheless!) I was aware of this challenge as it was all over social media sites, but hearing first-hand of his experience was brilliant! 

I very much enjoyed the event, and I hope there are more like it in the future, as I would definitely attend another. Well done, Zoe, for such a successful first event!