Showing posts with label friends. Show all posts
Showing posts with label friends. Show all posts

Monday, 11 July 2016

5000 Days with diabetes

Today marks a milestone for me.  It’s my 5000th 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.

Saturday, 5 March 2016

Glasgow 2016 - some personal highlights

There's more serious stuff to come from #DPC16 - a lot more.  But the conferences (#YDEF16 included) did have a personal side to them as well, and I wanted to get things down on paper before I forget them.

There's a good chance I'll return to this as and when another memory fights its way through the current brain fog, but these are the things that have stood out for me on a personal level over the last four days:


  • Meeting members of the #doc.  It's always top of the list when you get to meet people you spend so much time talking to.  Finally getting to meet (in no particular order) Laura, Kelly, Kris, Sandie, Dani, Mike, Ellie, Bob, Helen, Partha, Pratik, Emma, Becky, Ali, Neil, Pete, Sophie, Lis, Jon, Jane, Amy, Hannah, Jane-Claire and anyone else who I've definitely forgotten (sorry - can barely remember my own name right now).  Memories were made - I thank you.



  • Getting to speak at both conferences.  I think Kelly and I delivered a solid couple of workshops at #YDEF16 to say we'd only met for the first time the night before (and only had one practice run).  Standing up in the Arena on the first day of the conference and being given a platform to give my experiences on education at #DPC16 was a real highlight and I'm grateful to Bridget from Diabetes UK for allowing me to share the stage
  • Watching my friends speak.  I saw Kelly deliver a great speech about her Sugarbuddies experience, and Laura talk so passionately about NICE guidelines, both within a few hours of each other.
  • The 5k fun run.  It take a lot to motivate me out for a run before 7am.  But it WAS fun (sorry Ali) and it lead tomy fastest 5k time and the creation of...
  • The #DPC16 #DOC T-Shirt... a sixth form leavers present for the Conference Age
  • Sanofi Coffee.   The Sanofi stand was the default meeting place for everyone and I think it was a unanimous vote that their coffee was the best (other pharma coffee stands are/were available)
  • Seeing people you weren't expecting to.  Basically half of my diabetes team in Sheffield showed up for the conference which is not wholly unexpected, but running into so many of them in such a busy environment was a surprise, but a very welcome one
  • Hearing the conclusion of something I'd been a part of.  The very first lecture at #DPC16 gave the results of the clinical trial I took part in for two years.  I'd heard the headline news, but to see the presentation was very interesting (and a little controversial)
  • Meeting so many people.  Obviously putting faces to names from the #doc was incredible, but having the chance for a few words with those who'd spoken so passionately or chaired incredible discussions was a great opportunity.
  • Being part of something.  I wrote a quick overview of what seemed to be the messages of #DPC16 and I think to have been there and be part of that rising tide of change was a real highlight.  Having the chance to add my voice to the huge buzz that was already there is a highlight, and to be able to share what's going on with everyone was a real privilege
  • A couple of quotes.  Nick Oliver said at #YDEF16 "I don't know if any of you have had a hypo, but we tell people with diabetes to eat 15g of carbs and wait 15 minutes.  I dare you to do that".  Partha Kar told a room full of diabetes clinicians "None of you are experts. People with diabetes are the experts. We're all just specialists, at best".  It's reassuring how much they get it.
I think there's more to add to that list, and I'll no doubt return to this in the coming days as my brain settles down.  But for now, that's just a few of so many things that made this week special.