Week Twelve - Paths not taken (or things I wish I'd known)

I drew a blank yesterday when I sat down to write - there was something there but I couldn't quite see it.  It vaguely came to me as I stared at the ceiling at something-past-midnight so let's go.

I should preface this by saying that it's Diabetes Week (8th to 14th June 2020) and so while this won't entirely depart from the mental well-being stuff I've talked about for the last three months, I was reflecting on my experiences specifically with diabetes more than usual last night.

I was trying to remember how old I was when I got got diagnosed with type 1 diabetes.  I always start by telling myself it was the October of my graduate year at university as I remember it being a fairly isolating experience in many ways.  But that's not true.  The date I mean - it was isolating in a lot of ways.  I remember trying to explain it all to a couple of my course-mates (and fellow 5-a-side colleagues) and how lower GI stuff like Shreddies would help.  "Shreddies - keeps diabetes locked up til lunch" still makes me smile.  But that must have been the start of my third year which was October 2001.

And that means next year will be 20 years with type 1 - half my life.  After that point it'll be something that'll be the bigger part of my experiences, not the smaller part.  Those 20 years without diabetes would always be a static thing, but soon that block of time will become a decreasing minority.

Memes for all occasions

Looking back at the start of this adventure I was woefully ill-placed to deal with it - not that there's ever really a good time to get diagnosed with a chronic condition but still...  A few ridiculous things really stand out from those first few months.  I remember being told to make sure I'd eaten before playing football at university so I'd cram all sorts in before a match and wonder why I was sky high afterwards.  I started off on mixed insulin so there wasn't really a concept (that I'd be told about at least) of correction doses so I just lived with it.

When I switched to basal/bolus a year or so later, that felt like a little more freedom, but I was still walking around with way too little knowledge in my head.  That's diabetes knowledge for those giggling at the back...  While I finally had the tools to finesse my own self-management, I didn't have the understanding.  One unit for 10g of carbs seemed to work, but I'm sure it took years for me to ask what would happen if I did insulin without food and finally understand if my levels were high I could just do insulin to fix it.  Seems so obvious now, but it was alien to me for so long.

And (as I gratuitously wield my crowbar) it got me thinking about other paths I'd not taken because of things I didn't know or was scared of finding out.  Opportunities I didn't take, places I didn't go, girls I didn't ask out, invitations I turned down... all because I was unsure of myself or scared.

I think what it made me realise (at nearly 1am...) is that the stress and anxiety that I've really only consciously started to be aware of has actually been around for a really long time.  Looking back, some "coping" mechanisms have been fairly common over the years (however cringe-worthy they were and how hard they are to let go of), some of the anxiety symptoms probably date back over 25 years.

So I think there are a lot of things I wish I'd known.  All the stuff I've accumulated over nearly 20 (TWENTY) years of living with diabetes would obviously have been hugely beneficial way back in 2001.  But I've been struck again by how much the mental aspects have been so important. Not just in terms of missing out on lived experience, self-confidence or self-esteem, but that overlap with managing the physical bits.

I had a conversation with someone recently about how easy it feels now to instinctively know what my insulin doses should be, and that the textbook answers don't reflect what I intrinsically know to be true about my own care.  But whilst that trial and error, and learning from those mistakes has been tough at times, it feels easy in comparison to understanding and managing things that aren't tangible or don't manifest themselves as physical problems to solve.

I don't know... it makes sense to me, and if you can relate too, that's good.  Happy diabetes week.  Until next time

Stay safe x

Back again

I've dusted off my password and come back to write something.

If you've been keeping up-to-date with any of my social media, you'll know I'm running the London Marathon in just under five weeks.  Whilst this post is loosely based around that, it's also some thoughts on change.

I was in a similar position seven years ago as I prepared to line up for my first ever marathon.  Back then it was all unknown territory for me - how do you run 18, 20 or 26 miles?  How do you do it whilst managing a health condition like Type 1 diabetes?  How do you keep going when it's easier to give up?

Thankfully I managed to find answers to all those questions, and now I find myself reflecting on what's changed, and what's stayed the same since 2012.

Well, I'm still not built for running so I'm fairly sure my training schedule isn't keeping Eliud Kipchoge or Mo Farah awake at night.  And of course I still have diabetes to contend with, which is very much the added X-factor when it comes to long distance running (for me at least).

What's changed?

Of course lots of things have changed too.  For my first marathon, insulin pens were my treatment regime and so reduced basal injections the night before and the morning of the run were vital for keeping my bloods under control.  Looking back now, it seems pretty crude, but it definitely did the job.  By 2014, for my second marathon, I'd switched to a pump and the added level of finesse to tweaking basal rates was hugely helpful.

Technology has come a long way since then, and so this year I'll line up with a flash glucose monitor sending my blood sugar readings to my watch every five minutes (assuming it holds up under a sea of Bluetooth interference).  That should help even more as I should be able to ward off any signs of low blood sugar a long time in advance.

'Score one for older and wiser...'

I've also not managed to defy the aging process and so I'll head off a month shy of my 38th birthday and feeling every single day that I've aged since last time.  It's clearly affected my memory as well, because I'd forgotten how unrelenting the training is to be able to run/walk/shobble/stagger over 26 miles.  That said, the wonder that is Facebook's "on this day" feature told me my recent 20 mile run was 30 mins faster than my first attempt over that difference way back in 2012.  Score one for 'older and wiser' there I think...

I've changed jobs since my last effort too, and so there's an added layer of tiredness to factor in beyond a) the actual training and b) being nearly 40.  I'm usually travelling around the country once or twice a week, so earlier starts and fitting runs in early before work, or after a long day have become the new norm - but a manageable norm.

'How do you keep going when it's easier to give up?'

For me, the big question was the last one I posed at the start... "How do you keep going when it's easier to give up?".   Of course, that's really a life question, not just a running one, though it definitely applies when you're feeling sick after 18 miles.

It's invariably a diabetes question too, and I guess the answer is really the same for everything - "I don't really have a choice".  It's not a cure for Type 1 I'm desperately after, it's a day off.  It is utterly relentless and at times it's all consuming.  The advent of technology I celebrated a few paragraphs ago also brings with it some tougher aspects.  If it's hard to switch off from a chronic condition when you're connected to an insulin pump, it's basically impossible if everytime you unlock your phone, there's a blood glucose reading staring you in the face.

Sometimes it's OK.  Sometimes it's mocking you for a bad decision you made a few hours earlier.  But it's always there.  I've long thought that diabetes has me so tight in it's Stockholm Syndrome-like grip that I'd be lost without it in my life.  But when that's all said and done I'd take a 24 hour respite in an instant.

So... how do you keep going when it's easier to give up?  I guess the answer is 'by any means necessary'.  On marathon day, it'll be the promise of a medal (and my first bit of proper junk food in months).  With diabetes I fundamentally don't have a choice and it's remembering that I'm doing the best with the tools, knowledge and wisdom that I've got.

Anyone can have a bad day, and we'll always be our own worst critic, seeing ourselves in a crueller light than anyone else ever would.  I'm not going to compare my finish time to anyone else's, and I won't do the same with my health.


I'm running the London Marathon on Sunday April 28th for Diabetes UK - a charity very close to my heart for a lot of reasons.  If you'd like to support them by sponsoring me, you can visit my JustGiving page to donate, and to get regular updates on my training as the day approaches.  Despite working for Diabetes UK, I have no say over how your donation is spent.

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.

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

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.