Monday, 13 November 2017

Diabetes Is...

November 14th is World Diabetes Day.  I'd been thinking about this post from March 2016 a bit recently and wanted to offer a different perspective when talking about the hard facts of living with a chronic condition.  I've lived with Type 1 diabetes for a little of 15 years and every day throws up new challenges and new things to learn.

Diabetes is sitting in your kitchen alone at 2am, eating because you've woken up shaking as your body alerts you to another episode of hypoglycaemia (low blood glucose).

Diabetes is lonely.

Diabetes is feeling like every snack and every meal is a challenge to be overcome.  Counting carb values, measuring blood glucose, calculating insulin doses and sometimes just hoping for the best.

Diabetes is relentless.

Diabetes is sticking yourself with a needle about 50 times a week, whether it's finger-prick tests for glucose levels, or a cannula in your stomach to deliver insulin.

Diabetes is invasive.

Diabetes is desperately searching for a shop that sells batteries, because your insulin pump is almost our of power and without it you'll almost certainly be hospitalised inside 12 hours.

Diabetes is frantic.

Diabetes is trips to your GP, to eye screening appointments, to hospital clinics, and to pharmacies.

Diabetes is clinical.

Diabetes is that unquenchable thirst, stiff joints, that shattered feeling and the blurred vision that can only mean your blood glucose is way too high.

Diabetes is tiring.

Diabetes is doing the same thing two days in a row and getting hugely different results for reasons you can't possibly figure out.

Diabetes is frustrating.

Diabetes is being reminded of your own mortality whenever you go for a check up.  Your eyesight, kidneys function, feet, and overall sensation are all things you fight to protect and preserve on a daily basis.

Diabetes is serious.

Diabetes is being stereotyped by media more concerned with headlines and sensationalism that science and fact.  It's being the punchline to jokes that simply aren't funny.

Diabetes is misunderstood.

Diabetes is planning and packing a bag full of supplies (and spares) for even one night away from home, let alone a proper holiday.

Diabetes is not for the spontaneous.

Diabetes is being susceptible to your environment - knowing that the temperature, time of day, or your level of exertion (to name just three) can affect your blood glucose.

Diabetes is all encompassing.

Diabetes is treating yourself to a takeaway on a Friday night and hoping you get your insulin dose correct otherwise you'll be paying for it in the middle of the night.

Diabetes is hard.

Diabetes is a huge strain on your mental well-being - and with all these things to contend with every minute of every day, it's hardly a surprise.

Diabetes is exhausting.

Diabetes is having friends to rely on who help you through the tough days, and celebrate the successes with you.

Diabetes is a community.

Diabetes is celebrating small wins - like waking up with a 'normal' blood glucose reading which never seems to happen as often as it should.

Diabetes is a success (sometimes!)

Diabetes is an individual condition and doesn't affect everyone in exactly the same way.  What works for some doesn't work for others.

Diabetes is like this (for me).

This isn't to suggest that it's doom and gloom the entire time because it really isn't.  I can eat what I want, do what I want and manage to look after myself pretty well.  But diabetes is very much an "invisible illness" that needs 24/7 management and that's a huge amount of self-care for anyone to take on.  It might look easy but it takes a lot of hard work to make it appear that way.

If you've got this far, thanks for reading.  Happy World Diabetes Day!

Wednesday, 1 November 2017

A smashed glass

Have you ever smashed a glass whilst putting the dishes away?  I expect you reacted in the same way I did - a modicum of cursing under your breath, thinking you could've had a tighter grip on it, and that you'd watched the whole thing play out in slow motion from the moment it slipped out of your hand.

Now have you done that same thing at a friend's house?  Whilst you probably reacted in the same way - the social embarrassment making it worse if anything - think about how your friend reacted.  Hopefully with some sense of concern ("are you OK?"), context ("it's only a glass") and compassion ("don't worry, it's not a big deal - I did the same last month").

So what does that mean?

The last blood glucose reading I was unhappy with was about four hours ago.  I was frustrated and angry with myself.  I'd started the day in double digits for the first time in over two weeks and I'd had to guess at carbs because I'd not brought weighing scales on holiday with me.  Much like the glass slipping out of my hand, I watched this unfold in slow motion.

The combination of waking up around 12mmol, simply putting my feet on the floor, and eating cereal where I was, at best making an educated guess about the carb content set off an all too familiar chain reaction.  Nothing overly catastrophic happened (I stayed in the 11-13 range for about 4 hours) but in the context of the previous fortnight of near-perfect levels, it felt rough.

I played it over in my mind, trying to work out what I should have done differently ("should" not "could" feels like a subtle but important semantic argument I think many of us are familiar with).

I should have waited until I'd dropped into single figures before breakfast because I know eating when I'm in double digits only perpetuates the problem.

I should hhatave been a bit more generous in my carb counting estimate because I know I have to force my levels down when I'm high first thing.  The chances of a hypo were remote.

But I didn't do any of that.  And so I silently berated and chastised myself all morning.  I kept checking my levels for any sign of a change in fortunes and had that feeling of being withdrawn from things more than usual.

And when the shoe's on the other foot?

Now I think about the last time I talked to a friend who had a similar experience with high blood glucose.  I didn't berate them, I didn't tell them to skip a meal and I didn't make them run through a mental list of things they should've done.

I was empathetic.  I know how crap it feels when you're struggling with this kind of thing.  I know how it feels trying to manage 'difficult' food and come out relatively unscathed a few hours after your meal.  I know how tough and unrelenting managing diabetes is.  I told them how I hoped they were feeling better soon, that I know how hard it can be and that however confident you feel, sometimes food will kick you when you least expect it.

What does this all mean?

So back to the glass and it's place as a metaphor for diabetes management (however clumsy it may be...).

It's easy to be overly critical, set higher standards and demand more from ourselves than we'd reasonably expect from others.  Whether that's related to doing the dishes, our working lives, or managing a chronic condition.   If we find it so easy to show empathy and be compassionate to others when they're having the kind of bad day we're all so familiar with, why is that self-compassion so hard?

Things are hard sometimes, and if we can acknowledge that for others, we should be able to do that for ourselves.  That self reflection is harder, and I think that's because we believe that knowing all the factors in play means we should have total control over them all the time.

That's all certainly true for me.  That's not to say it's easy to flick that switch and be fair and compassionate towards myself.  If it was something I could consciously turn on, I'd have done it ages ago.  That self-reflection takes time and practice but does make a difference.  Being objective and rational when looking at our own actions definitely isn't easy - our emotions always run high and make it harder, but the more we try, the easier I think we find it to get through our tougher days.

This was inspired by a short post I read on the idea of diabetes and self-compassion by Leann Harris which you can read on Diabetes Daily if you follow the link.  I'm also thankful to my colleague Odette for encouraging me to write again after about six months out of the game.

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