5000 Days with diabetes

Today marks a milestone for me.  It’s my 5000^th day with diabetes.  It’s nothing special in itself I suppose – I’m coming up on 14 years since my diagnosis, and many people have lived with this thing for a lot long than I have.  But 5000 days… that’s worth considering.

Generally, looking back on life, we often find it hard to believe how naïve we were about a lot of stuff – laughing at our younger selves for not knowing things that seem so obvious to us now.  My relationship with diabetes is no different.

I remember my diagnosis.  It was the start of my graduate year at university, and I’d been flicking through a magazine when I happened upon a side-bar that was talking about some symptoms of Type 1 diabetes.  Reading through it, I was mentally crossing them off… tired all the time, drinking a lot (of water!), needing the toilet all the time… This had been happening to me for over a week.  I could never drink enough water to quench that thirst, no amount of Mars bars would give me energy to stop feeling lethargic (...seriously).  I couldn’t see the notes on the board from the front row of lectures.

So I went to see the campus GP and told her I’d read a magazine and I thought I had diabetes.  To be fair, I’d have been sceptical in her position – I suspect it’s the equivalent of Dr Google these days.  But  I had a blood test and got a call the next day…

“You’ve got diabetes.  I need you to go to the diabetes centre at the hospital…”

“Er…” *looking at lecture schedule* “I could go Wednesday afternoon?”

“I need you to go NOW.  Right now!”

And that changed my life.  There’d been a kid in my class at primary school who had diabetes.  He was insanely resilient – you never really saw much indication of it at all – he just got on with doing what other 8 year olds do.  We all knew he had to have a needle (and this was the 80s so it was proper needles) but that was it.

Now I was sat in a room in a hospital with my parents who’d just bombed up it the motorway, with a nurse (Vicky Clancey) who was telling me I had to inject myself every day (along with a lot of other information).  I think I asked if I could just have a pill or something not utterly terrifying but to no avail.  I came home with a mountain of papers, booklets and more medical supplies than you can shake a stick at and I got on with it.

Over the next decade or so I had a complicated relationship with diabetes.  I worked hard some of the time, and saw the benefits of it on that half yearly report we’re all so familiar with now.  Other times I gave up entirely.  I took insulin when I was supposed to, but testing became a thing of the past – used only to justify eating when I was low (both blood sugar and emotionally).  And I spent time in between those extremes, giving my health the minimum attention it needed.

I think all that changed about four years ago.  The chance to take part in a clinical trial looking at insulin pumps and education courses (here’s link to an article discussing the results) was a huge turning point in my life with diabetes.  It finally allowed me to fill in the huge gaps in my knowledge, gave me the opportunity to meet people in the same boat as me and let me see that there was a world of other people that I could talk to.  I spoke at the Diabetes UK Professional Conference earlier this year about how DAFNE changed my life, and I don’t think I could ever possibly state how much that is true (you can read/watch more about my relationship with DAFNE on the Diabetes UK Taking Control site).

So I look back at myself now, after 5000 days of counting carbs, injections, finger­-prick tests (sometimes!), set changes and I can’t help but laugh.  I wrote on the very first post on this blog (which started as a London Marathon training blog) that “Whilst I’ve been diabetic for the last 10 years, I’ve…never let it define who I am”.  I don’t think that could be any further from the truth now – at least in some sense.

I used to be a terrified young adult who’d never really accepted this… thing… he’d been given.  Someone who was scared to ask for help, didn’t want to hear about complications because I was too young - that stuff will never happen to me right?  Someone who felt so low he gave up looking after himself for almost two years without a thought to the consequences.

Now, it’s different.  Diabetes is absolutely a huge part of my life – it has to be.  I feel part of a community that I can ask for help whenever I need to, and I’ve made some truly amazing friends as a result of this condition.  It’s still not always easy by any means, but it finally feels like that millstone around my neck has turned into something a lot more manageable and, dare I say it, more positive than I’d ever expected.

I don’t think you can live with a chronic illness without experiencing highs and lows (…sorry) but I think it’s about how we emerge from them that really matters.  We all carry battle scars as a result of diabetes (physically and mentally), but we’re still here, we’re still fighting and we’re still living, not just surviving.

How I felt back in October 2002 is completely alien compared with my outlook on diabetes today.  You go through a lot over 5000 days and how you use that life experience is so important.  I’ve gone from being a naïve 21 year old to a 35 year old who understands so much more than I thought possible (or at least I think I do...). 

I’ll be almost 50 by the time I reach 10,000 days with diabetes.  There’s going to be a lot more to learn, but I finally think I’m up to the challenge.

DPC16 - Impressions from Day 1

DPC Day 1

This is the standard ‘my first impressions’ blog about attending the Professional Conference.  I appreciate it’s probably a bit cliché, but hopefully it adds context to the rest of what you read about the conference.  Blogs on specific sessions will follow throughout the week (and probably into next week too).

No matter who you talk to, how much past experience you try and take on board, nothing can really prepare you for how BIG the Diabetes UK Professional Conference (DPC) is.

I felt like I’d had the benefit of a gentle lead into the chaos, having spent the day before the DPC at the Young Diabetologist & Endocrinologist Forum, running a couple of workshops with Kelly (@DiabeticQueen1) on what it’s really like to live with an insulin pump (I’ll save that for another time).  I’d had a day to get my bearings for the most part and I’d been through the session planner a week in advance so I had a good idea of what I wanted to see.

But DPC is BIG.  There’s over 3000 people at the conference, many of them great leaders in their fields, others desperate to hear them speak, even if it’s just for a short time.  Typically, there’s six sessions running concurrently with a few coffee breaks sprinkled in throughout the day in the huge exhibition room.  It sounds chaotic but it’s not.  It’s busy, but it’s an incredibly well-oiled machine.

Having hunted down our badges for the week, we piled into the main auditorium for the first round of lectures.  At this point it’s worth explaining how the day is split up – it sounds like overkill (and it’s a bit long to read here), but I think the context is important…

There’s roughly four big time blocks per day, each between 60 and 90 minutes long, each with an overarching theme.  There are six rooms that each run one of those time blocks concurrently.  And each time block contains two or three lectures.  That means in any given day, you’re likely to hear 10-12 individual talks across a variety of topics.  The 2016 Programme is here if you’re more of a visual person.

For the first day, I tried to split between things I had some interest in (it makes it easier to try and understand/write about), and things I felt were of a wider appeal.  Day 1 consisted of 14 individual talks:

Opening Plenary lecture session

•           The Relative Effectiveness of Pumps over MDI and Structured Education (REPOSE) – Simon Heller
•           Peptide Immunotherapy for Type 1 Diabetes – Colin Dayan
•           Exercise for beta cell preservation in Type 1 diabetes: The Exercise for Type One Diabetes (EXTOD) trial – Rob Andrews and Parth Nardendran

Multidisciplinary approaches to managing admissions for DKA session

•           A combined diabetes case manager and mental health approach for supporting people with multiple hyperglycaemic admissions – David Simmons
•           The role of emotional wellbeing in DKA and one care pathway approach – Kirsty MacLennan
•           Walking the tightrope of hyperglycaemia: education is not enough – Clare Shaban

Diabetes education: reaching the masses session

•           Taking Control campaign – Bridget Turner
•           Making the case for diabetes education – Charles Gostling, Helen Hopkinson, Alison White
•           Getting people there – Vivien Coates, Anne Scott
•           Adding options to the education menu – Sarah Newall, Rebecca Owen, Kingshuk Pal
•           Addressing specific local barriers – Tahseen Chowdhury, Seonaid Morrison

What’s new in hypoglycaemia session

•           Cardiovascular effects of hypoglycaemia – Simon Heller
•           Evidence based pathway for the management of problematic hypoglycaemia – Pratik Choudhary
• 
  
• Mary MacKinnon Lecture

•           West Hampshire Community Diabetes Service: re-commissioning community services and beyond – Kate Frayers

Fourteen talks across five broad subjects is a lot of information to take in.  I feel incredibly lucky to be here at the conference (and to have had the opportunity to speak for a few minutes within the Taking Control session) but it takes a lot of brain power to be on the go all the time.  Hopefully those of you following me (@BroomOwl) or the hashtag (#DPC16) on Twitter have got some sense of the huge amount of information being shared.  So back to the day…

The conference centre is big and you often find yourself rushing from one session into another, trying to grab a coffee on the way if you’re lucky enough.  The exhibition hall is where people tend to gravitate between sessions, though I’ll confess I’ve not actually taken a close look at anything there yet.

What really struck me was the mix of passion and knowledge on show, as well as the desire to make overwhelming change to the lives of people with diabetes.  That sounds a bit obvious really, but the sheer number of people devoting their time outside seeing patients to research, service changes and sharing best practice is really incredible.  It’s inspiring as a person with diabetes, I imagine as a healthcare professional it’s very motivating.

I’m writing this in the hotel bar at the end of the first day, reflecting back on what feels like a week’s worth of information I’ve had shoved into my head within the space of eight hours.  I’m trying to pick a favourite session, but it’s genuinely difficult.  I’ll freely admit some of them were very fast paced, and whilst I got the main messages from some, I couldn’t explain the research to you well enough.  Some (like REPOSE which I was a part of), were personally important to me, others, like the whole DKA session gave me something entirely new to think about.

Perhaps the one that struck the biggest chord with me was the education session.  REPOSE had shown in the morning that people using insulin pumps do no better than people on multiple daily injections (MDI) when proper high quality education is given.  The afternoon session showed that there were a huge group of committed individuals across the UK looking to deliver that message out to as many people as possible.  I’ll follow that up in a separate blog.

Thanks for reading my opening post, and thanks if you’re following along on Twitter.  Hopefully you’ll understand that a huge post on each lecture (or even session) is a bit impractical.  I’ll try and do one in detail and summarise some of the others along the way.