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.

Then and now

This blog first appeared on blogs.diabetes.org.uk on October 25th 2012


I'm Andy, I'm 31 and I've had type 1 diabetes for 11 years.

I remember the day I got diagnosed, I got a call from the campus GP asking me to come in urgently - I was at the start of my post-grad year at university.  I'd had a few "symptoms" for a couple of weeks and having done a bit of internet research, I had an inkling what she was going to tell me, but I'd assumed I was wrong.

When she told me I had type 1 diabetes and had to go to the hospital, I remember saying something about having a free afternoon in a couple of days time.  She said "No, no. You don't understand, you have to go now".

At the hospital, I remember two things vividly.  The first was the sheer amount of information I had to try and make sense of in a few hours.  There's so much to learn, remember and understand it feels impossible to manage at the beginning. The second was the first time I injected myself with the needle.  I don't like needles and to this day I have to look away every time I have a blood test, but I quickly had to acclimatise to injecting myself.

I started out on two injections a day with a mix of short and long acting insulin.  Looking back, the Innovo pen was a bit unwieldy but it looked gadgety enough to help me along my journey.  Fortunately I've long since graduated to five injections a day using a significantly less cumbersome device.

The Innovo Pen from 2001

My first hypo was the following Saturday morning when I was at work.  I'd been told what the warning symptoms were likely to be and what to do, but I still gave the on call nurse a ring to make sure I was doing the right thing.  There are a lot of other things that you perhaps don't immediately associate with the lifestyle of a diabetic - checking your blood glucose, annual eye screenings, dietician appointments, foot specialists but your life adapts to fit around these things over time.

Some of them get easier and to a degree, some of them don't.  Whenever I have a hypo, I still get the same feelings of confusion and anger as I did back then, and the eye drops still sting as much as they first did, but I accept that it's just part of my life now.

Eleven years on and things are definitely easier and more settled now.  The theory and understanding is ingrained, the carb counting and insulin maths is automatic and testing my blood a few times a day is now the norm.  I still have good days and bad days and occasionally get caught out with a high blood glucose level that I'm not expecting but managing it is now second nature.  I also understand what's expected of me by my family and my doctors as well as what I expect of myself.

I try not to let being diabetic define who am I or restrict what I do because there's so much more to me than diabetes. Whilst it might be an important part of my life, it isn't my entire life.  Hopefully I'll get to share more of my experiences with you in the coming months.