Tuesday, 18 April 2017

What did I used to know?

Before the world began to teeter on the edge of nuclear annihilation and every media outlet imaginable turned into Politics 24/7, I was thinking... "what did I used to know?"

I used to know a lot of stuff.  I've studied, been to places, met people, cooked food, heard music, and many other things besides.

Credit: Anchorman and Google and whoever made this pic
But I'm fairly sure there's stuff I did know that's kind of... seeped away.  Not important stuff obviously - I still know the words to every Arctic Monkeys song, most of the dialogue to Terminator 2 and my daughter's name.

Well I couldn't, but....

But I genuinely think my brain has given up on some stuff.  I found my Master's dissertation the other day and whilst the general topic was vaguely familiar, I don't remember a word of it.  I agonised over that, read papers, had meetings... I even went to the library!  (This was before the internet was really a thing...)

So what has all this fantastic(!) knowledge been replaced with?  Carb values - that's what.

Slice of medium bread?  15g - 18g of carbs.

Decent biscuit (like a chocolate digestive)?  10g of carbs

Rice Krispies?  85% carbs mate.

It's like living in the Matrix for all intents and purposes - you see the numbers floating in front of you everywhere:

Banana? 25g - 30g 

I mean of course this is slightly dramatised for effect, but I think we're so accustomed to seeing food as numbers (and recalling those numbers on a daily basis) that it certainly feels like the stuff we used to know has simply disappeared.

I'd ask you what you've all forgotten since you started being able to recall carb values on command, but I bet you can't remember...

Until next time, hasta la vista baby.

Saturday, 25 March 2017

Sometimes it doesn't quite go to plan

Last night I had a hypo.

Nothing overly unusual there really. Whilst thankfully not a daily occurrence, low blood glucose does play a frustratingly regular part of my life. This time it was different.

Since gate-crashing the last day of the Diabetes UK Conference a few weeks ago, I've been trying (with a modicum of success) to get back into some better habits with my diabetes. As with anything, it can be easier to slip out of a routine than stick to it.

So Friday night rolled around and in some vague celebration of us both being at home on the same evening, my wife and I settled on a Chinese takeaway (hurrah!) "It'll be 45 minutes" they said. I figured this was another good opportunity to get back into the habit of pre-bolusing for my meals. Takeaway is a bugger to get right at the best of times but I figured I'd give myself a fighting chance and get out in front of it.

To cut a potentially tedious story short, the food arrived late, I didn't check my levels before I took my insulin and I had an utterly rotten hypo. I've had a few bad ones before. I've sat on the bathroom floor at 2am for an hour chomping on Glucotabs like there was no tomorrow. I've eaten jelly babies and watched my levels go down instead of up. But I've always remembered those experiences - cautionary tales are often the best right?

This one was different. I remember eating a couple of marshmallows that my wife brought me (but I don't remember eating the others she gave me from the bag). I remember accusing her of stealing my glass of water (which I had in my hand) and I remember picking my dinner back up (but don't ever remember putting it down). It was almost like an out of body experience in a way. I knew I was hypo the entire time, I remember going through the motions of fixing it all, but at the same time I feel like I can't remember any of it. The best I can liken it to was like waking up from a dream.

This isn't a sob story by any means. Just another cautionary tale to add to the list. Taking my insulin without checking my blood glucose was, at best, misguided; more likely downright idiotic. Not checking my glucose until the food arrived was equally foolish. Trying to fix a hypo with chicken chow mein is simply an experiment that need never be repeated.

Image boosted from the Wikipedia article in the link below

It's a reminder to me, at least, how fragile the equilibrium with diabetes can be. It's the saddle point we're all subconsciously trying to ride as much as possible.  It doesn't take much to knock us from that point of safety.  As is often the case, my idiocy was my downfall this time.

I'm not blogging as frequently on here.  I maintain it's only worth writing when I've got something to say.  My Diabetes UK blogs still get published roughly once a month and if you're interested, you can find them on their blog site

Tuesday, 15 November 2016

World Diabetes Day 2016

As part of World Diabetes Day on November 14th 2016, I posted regular Facebook updates about what it's like to have Type 1 diabetes. Those posts are presented here

Sunday, 6 November 2016

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.

Tuesday, 6 September 2016

Food Glorious Food?

I don’t have a good relationship with food.   I have to work harder at eating more than I do almost anything else.  I know that’s true for many  people with type 1 diabetes, and why wouldn’t it be? 

It’s a mental calculation every time we even think about putting something containing carbs in our mouths.  What’s my blood glucose now?  When did I last take insulin?  Do I need to correct?  How many carbs does this have?  Is it going to spike my levels or take a while to absorb?  And after all that, you either have to stick a needle in you or fish out your pump and dose appropriately.   That’s not a normal relationship by any standards.

My experience with food feels more complicated than that (if it’s possible!)  Four years ago, I weighed 215lbs (almost 98kg or nearly 15.5 stone).  I’d let my weight creep up and ignored what I was eating as long as I could get decent blood glucose readings.  This was less than 6 months after I’d somehow run the London marathon (weighing a lot less).  My reflection in the mirror finally persuaded me to do something about it and in three months I was down to 182lbs (83kg or 13 stone).

I’d always thought that losing weight was the hardest thing to do when you’re dieting, but actually maintaining any kind of progress really took it out of me and eight months later I was almost back where I started, feeling totally demoralised.  And so I did nothing about it for about 12 months.  Along with all the complexities that diabetes adds to eating, I started to view food as an enemy.  But of course the thing many of us reach for when we feel a bit low is food (because it’s delicious) and if you’re in a position where food is your best friend and nemesis at the same time, your relationship with it becomes more complicated.

Finally, something changed – I can’t remember what it was.  Another unflattering glimpse of my reflection most likely, coupled with a desire to change.  I’d entered another marathon and was determined I could run faster than my exploits over two years before.  I decided that actually losing a lot of weight would help me more than anything else.  Not lugging extra kilos of body fat around makes a big difference.  I embarked on a diet with a really strict calorie intake and a lot of exercise, and it worked!  I lost 45lbs (20kg or over 3 stone) by the end of the year.  It was hard work, but I actually felt good about myself for the first time in a long time.  I was at my lowest weight since I’d been diagnosed over 12 years previously, my blood glucose control was good (and I was running faster than ever too).

Now came the hard part – sustaining weight loss.  I’d tried once before and hadn’t managed it and I was determined to do better this time around.  I decided that I was probably at too low a weight to make sustaining it sensible in the long term.  I was eating around 1400 calories a day, running 20-30 miles a week plus other ad-hoc exercise.  I allowed myself a bit of a rise to keep some semblance of quality of life, but focused on what I was eating (and portion size too).

And it kind of worked for quite a long time.  Putting aside blips for holidays and Christmas, I managed a fairly steady weight for almost 18 months, eating pretty well, exercising regularly, and actually feeling pretty pleased (and dare I say, happy with my own body image).

Recently it fell apart again.  I had a running injury that stopped me exercising as much as I used to, which in turn pushed me back towards my comforter-in-chief… food.  A lot less exercise and a lot more food pushed my weight up at the start of this year to a point where I avoided the bathroom scales because I knew I’d hate the reading it gave me.  That reminded me of how I was with my diabetes about six years after diagnosis… I stopped testing because I didn’t feel in control of the results and I put it all out of my mind.

I know from experience that nothing good comes from that denial.  I felt (feel?) guilty about what I eat if it’s full of calories, but eating something like that gives me such a rush it’s hard to stay on track.  It’s almost like an addiction in some senses, and sticking to a plan of eating healthily requires an incredible amount of willpower.  Trying to convince yourself you don’t need one more hit of fat, sugar or salt takes a lot of effort.

My weight is currently back on the way down, and that feeling of control has returned (with my weight, and diabetes in general).  I feel like I can only operate at extremes though – full on culinary hedonism, or the strictest diet I can imagine.  Having a metabolism that seems to not need much fuel to keep the lights on doesn’t help either.   But even having lost 11lbs in the last month, I still look at my reflection and think I could probably lose a couple more…

I don’t think it’s easy to interact with food when you have diabetes.  I don’t know how typical my experiences are when it comes to the frustrations of balancing my intake with how I see myself.  I think as a community we talk a lot about managing the highs and lows of blood glucose (and the everyday aspects of diabetes), but we talk less about how food makes us feel… Maybe it’s because most of us don’t need to.  Or we don’t know how to.  I might be an outlier when it comes to managing food, but I suspect I’m not.

I’ve delayed writing this blog for a long time – mostly because I wasn’t sure I had the right words to express how it affects me.  That said, ‘guilt’, ‘denial’ and ‘frustration’ are words that are all too familiar when it comes to diabetes so perhaps they were there all along.

This blog also appears on the Diabetes UK blog site - you can read my most recent posts there by viewing my bio on their site

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, 4 June 2016

Let's Get Back On Track

I've neglected this blog for a little while.  Not necessarily because I don't have things to say, but because life's gotten in the way...

"Let's get back on track".   That was the sombre advice from my Garmin app this morning after yet another appalling attempt at running.  "Let's get back on track"...

The truth is, I feel pretty broken at the moment.  For once in my life, the only thing that seems to be taking relatively little effort on my part is having diabetes.  That's a strange thing to write really - the thing that's a 24/7 fixture in my life is the easy bit.

As usual, there's a lot going on (which is of my own doing), but it all seems to have fallen at once so I'm stumbling from one thing to the next without much time to think.  That's not always a bad thing I guess - the pressure of working on a few, quite different things is interesting and definitely keeps me on my toes.

But it does mean a few things are getting squeezed out (I've not found a way to add a few extra hours in the day yet).  Worryingly, it seems to be any kind of exercise which I'm sacrificing at the moment.  Given my pathetic metabolism, that means I've invariably put on weight, and I seem to be obsessing about it rather a lot.

I look back at where I was 12 months ago, and I was running 100 miles a month, at my lowest weight for about a decade and feeling invincible.  Now I'm struggling to run 4 miles (partly due to a stubborn knee injury I sustained mid-April), I'm about 12lbs heavier than I have been in ages and quite frankly it's making me miserable.

I seem to have developed some kind of weight obsessed insomnia as well and I'm finding it tricky to switch off, which is a little frustrating given how tired I actually feel at the moment.  There's a lot running through my mind every night but I seem to go back to how frustrated I am that I can't run, and the effect it's having on me.

I've been travelling a lot lately for various reasons (social and otherwise) - London and back three times in six weeks (with another three in three weeks at the start of July)...

To be honest, I don't think there's much of a point to this blog, other than to write all this stuff down so it's one less thing in my head.

I should be able to shift some of this unwelcome weight which will make me feel a lot happier.  Body image problems can't be over-stated in my opinion and it's something I wrestle with a lot more than I let on.   I know my knee will come back to being somewhere partly sensible so I should be able to get out and find the enjoyment I got from running last year.  And hopefully I'll get some sleep too.

At least diabetes isn't causing me too many problems.  For once.

Until next time.