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.