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.

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.

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

Diabetes by numbers

This blog first appeared on the Diabetes UK website on 29th November 2012

When I got diagnosed, I remember the Specialist Nurse telling me that really, my lifestyle shouldn't be different to that of any other normal, healthy individual.  Walking out of the clinic, laden with insulin pens, needles, test strips and other paraphernalia I was sceptical to say the least but of course she was right.

A low fat, low salt, low sugar, high fibre diet with plenty of fruit and veg is probably what most of us should be eating most of the time.  I suppose the difference is that the consequences of not eating sensibly are a bit more severe for diabetics.

What I didn't grasp at the time (and perhaps only subconsciously realise now) is all the diabetes maths involved in managing my condition - it really can be an overload of numbers at times..  I've recently been dieting having put on a lot of weight and lot of my waking hours are spent devoted to all the figures I need to keep on top of things.



What do you see?  2 slices of toast?  190 calories?  31g of carbs?  3 units of insulin?


On a daily basis I'm remembering and adjusting numbers for:

• Long acting insulin
• Quick acting insulin
• Carbohydrate content of food
• Blood glucose levels
• Calorie content of food
• Exercise time

I'm also doing calculations in my head to make sure I can keep my blood glucose level throughout the day.  I think diabetes gives you a new way of looking at things and a new appreciation for how your body works.

It seems quite daunting at first - and it can be even now.  One unexpected hypo or BG level in the 20s has me going back over what I've been doing to try and understand where I've gone wrong.  I've noticed this a lot more recently as my exercise regime has made my blood glucose levels a lot more sensitive to insulin.

In the 11 years I've had diabetes a number of things have made life a lot easier, and not just advancements in medication and testing.  I use a phone app to track my daily diet which helps me monitor both my calorie and carb intake (and therefore my insulin doses).  Eating out is no longer something that worries me as I can usually find nutritional information for most restaurants online.

It's easy to forget that whilst there are so many fellow diabetics, the way in which everyone manages their condition is completely different.  It took me a long time to organise myself into a daily routine that allows me to stay on top of my condition without it becoming a full time job.  There's a lot of support out there fromplaces like the Diabetes UK Careline, GP, Specialist Nurses and from other people with diabetes themselves.  Finding the right routine for you is the key to making all the numbers a lot less stressful and just another part of your day.

Finally, I was recently offered a place on a two year clinical study comparing the effect of the DAFNE course on people with multiple daily injections (MDI) and insulin pumps.  I'll find out which group I'll be in (staying with MDI or getting a pump) nearer to Christmas.  Hopefully I'll have more to share on that next time.