T1D Looks Like Me

November is DIABETES AWARENESS MONTH (though I'm fairly sure every month is Diabetes Awareness Month...).

The current JDRF campaign for #T1DLooksLikeMe got me thinking about diabetes awareness.  I suppose to some extent there's a lot of awareness of the concept of diabetes at least.  The last few weeks alone have seen numerous TV programmes attempting to highlight some of the long term complications of diabetes and talking about what can be done to reduce the risk of developing Type 2 diabetes in the future.

The thing about living with a chronic illness like Type 1 diabetes is that it's all the things people don't see that really define what your life is like.  To borrow from Public Enemy, those who know, know; those that don't have no idea.

This is for those who don't know (yet).

Fourteen years of Type 1 diabetes in just four numbers

I've had Type 1 diabetes for just over 14 years.  I've had good days and I've had great days.  I've had bad days, and I've had terrible days, and I've had everything in between too.

As the graphic above says, I've had to inject myself with insulin almost 17,000 times (plus around 450 cannula changes since starting with an insulin pump in early 2013).  That's something that never gets any easier for me.  There's still always a sharp intake of breath and a second of silence before the needle goes in.  I still remember being told on the day I got diagnosed that I had to inject myself in the stomach multiple times a day otherwise I'd die.

I've had to test my blood glucose levels almost 31,000 times in the past 14 years (or around 6 times a day, every day).  Some of my darkest times I've had living with this were when I abandoned testing pretty much entirely for around 18 months about five years post diagnosis.  I was lost and unable to cope with the idea of living with diabetes, so I tried to ignore it.  I found out the hard way that doesn't work.

'You see a meal, I see a problem to solve'

Living with Type 1 is relentless - a non-stop series of numbers that you have to understand and act on.  Eating becomes something entirely different.  Sitting down at the table, you see a meal, I see a problem to solve.  What's my blood glucose level now?  How many grams of carbohydrate are in this?  How much insulin do I need to take?  Is it the kind of meal that means my levels will rise later on (I'm looking at you here pizza...)?  And you have that thought process every day, every time you eat.  There's little wonder that people with diabetes are more likely to develop an eating disorder compared to the rest of the population.

It's the little things that sometimes take the biggest toll.  Cutting short exercise because your blood sugar drops too low, or not even being able to start exercising in the first place.  Spending 50 quid on a glucose sensor and having it in the back of your mind every time you get changed because you don't want to knock it off.  Wishing you could take a shower without catching your cannula (or making sure you don't catch the tubing on a door handle because it's agonising when it pulls out when you least expect it).

'Shaking, sweating, dizzy and your heart pounding'

And then there's dealing with the extreme levels of blood sugar.  The lows (hypoglycaemia) that leaving you  shaking, sweating, dizzy and your heart pounding, scrambling for some fast acting glucose to get back to 'normal'.  I don't think I know what 'normal' is any more.  The other end of the spectrum is the highs (hyperglycaemia).  Feeling sick and sluggish, the insides of your eyes feel like treacle and you're left with an unquenchable thirst until you've taken insulin to bring you back down to 'normal' (there's that word again).

Finally there's the quiet voice at the back of your mind, reminding you about the potential complications of this... thing that I live with.  Compared to the general population, I'm twice as likely to have a stroke or heart attack.  I'm at risk of developing long term kidney and eye problems as well as neuropathy (loss of sensation in the feet and other extremities) which can in turn lead to potential amputation in later life.  You have to live for today, but tomorrow is never far from your mind.

I think you adapt quite quickly to living like this.  There's no alternative really - doing nothing will get you in all kinds of trouble really quickly.  One thing I've learned over the past 14 years is that you never stop learning.  Talking to other people with diabetes, going on courses, going to support groups... there's always something new to learn and your body will always throw you a curveball when you least expect it.

This is what Type 1 is to me.  A constant sea of numbers, staving off lows, fighting highs.  Being awake at 2am because I desperately need something to eat, or bleary eyed, I need insulin to combat high blood sugar.  Living with a chronic illness isn't easy - in fact it's downright exhausting sometimes.  But it hasn't kept me down yet and hopefully it won't in the future.

I wish

I wish that "what's my blood?" wasn't the first thing I thought every morning.  I wish that sometimes, waking with the all too familiar feeling of a dry mouth didn't set the tone for my entire day.  I wish that feeling light-headed at 6am didn't mean scrabbling around in the dark for jelly babies before I can have a shower.

I wish I could drive whenever I wanted.

I wish that sticking a needle in my fingers seven or eight times a day wasn't necessary.  I wish I didn't have to stick a needle in my stomach twice a week.

I wish I could go away for the night, for the weekend, for a week, without it feeling like a military operation.

I wish that being ill was just that - and not an assault on my entire body.

I wish that I didn't have to carry so much stuff around with me all the time.  I wish I didn't have to keep spare sets of everything all over the place.

I wish I could go for a run without ziplock bags of jelly babies.

I wish my blood sugar didn't have to dictate my mood.  I wish my partner understood my mood-swings.

I wish I didn't look at a plate of food and see numbers.  I wish guilty pleasures didn't try to punish me for hours afterwards.  I wish that carbs didn't sometimes feel like my enemy.

I wish it wasn't a fight.

I wish my brain would switch if off sometimes.  I wish I didn't think about test results.  I wish I didn't have a familiar hospital routine.

I wish I could go to bed when I was tired without needing permission from a finger-prick.

I wish that this list didn't represent every day of my life.  I wish that sometimes it was just a little bit easier.  I wish I could have a day off.

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.