Everything that you've come to expect

April 1st 2022 marks exactly half of my life lived in the company of type 1 diabetes. From now on, every day means more and more of my life has been given over to accomodating this condition than I've been free from it.  I suppose April Fool's Day is a pretty on-brand day for this particular milestone.

A look back at my blog timeline reminds me how woefully out of practice I am at this... whatever 'this' is.  I considered just letting the day pass by - it is just another day when all's said and done.  But there's been a lot of days that have raced past me lately and this seemed as good a day as any to reflect back on 20-and-a-bit years of a chronic condition.

Having type 1 diabetes is relentless.  It is 24/7 decision-making about keeping yourself alive.  There is no other condition that springs to mind where you have to actively assume the complicated biological role of one of your internal organs all the time and are made to live with the consequences of how well you can masquerade as that organ.  It also completely robs me of sleep.  I recently had between 5 and 6 hours of continuous sleep and realising how rare an achievement that is did not have me rushing to work out how many hours I've lost over the years. 

Of course, I also have another full-time job in diabetes and that itself can be a little bit of a double-edged sword.  The stand-out benefit is that everyone you work with just gets it - there's no having to qualify why you've got your camera off in a meeting while you treat a hypo. The effect of living with diabetes is front and centre all the time.

But of course, it's front and centre all the time.  Distracting yourself from life with diabetes with some work, is just... more diabetes.  Particularly as I start to do more that looks at access to peer support, tackling stigma and helping to build more communities for people living with diabetes.  It feels a little claustrophobic at times, and I think it gives added meaning to what a decent work/life balance really is.  

So, reflection.  I told part of my diagnosis story in a meeting a few weeks ago and it struck me how infrequently I talk about my own experiences, but also how much has changed for me in the last 20 years.

I'm not going to try and rehash too many of my previous posts - I talked a bit about my diagnosis in this post marking 5000 (ish) days of diabetes back in 2016 - but reliving it in that meeting made me feel an emotional vulnerability I don't even really remember experiencing at the time and that really shook me.  I've probably talked about the Kubler-Ross grief curve before, but it's such an accurate way of illustrating the stages I've been through.

I've also talked before about some of my lowest points with diabetes in this post about mental strength from 2013.  Looking back on that now, I feel like I've learned so much more about my own mental health and wellbeing.  I'm certainly more aware of the things that trigger either the diabetes-related stress, or my general anxiety.  I'm not always better at managing them, but I maintain that awareness is half the battle there.

Tech has come a long way in 20 years too. Gone are the days of clunky pens, mixed insulin and 20 second waits for finger-prick results. An insulin pump and a Dexcom continuous glucose monitor are my current weapons of choice and they undoubtedly make things smoother for me.  But ending up in a codependent relationship with my phone to keep an eye on my glucose levels is definitely just another exhausting thing you never expect to happen to you. 

I feel like I've really felt the weight of living with diabetes over the last couple of years.  Reading (and working with) the stats on diabetes and COVID was sobering.  Being reminded of that increased risk still isn't easy, and having had a lot fewer options to feel like I could physically escape during lockdowns 1, 2 and 3 was tough - I've felt that claustrophobia a lot more recently.  

The start to 2022 has felt relentless in a lot of ways and I think that makes it harder to feel like taking a load of conscious and intentional decisions has some pretty finite boundaries.  Yes, I'm keeping myself alive, but extra decisions on food, lifestyle and generally trying to be healthier seem impossibly out of reach.  It's hard to maintain the motivation to do 'the right thing' even some of the time when you're taking a couple of hundred extra decisions every day.  It's a stark reminder that it's relentless, and you need a huge amount of resilience to pick yourself up and keep going.

Aviation by The Last Shadow Puppets

But go we must, and into the future where tomorrow where the days with diabetes (all 7461 and counting) are finally more than the days without (7460).  Contrary to most of my life (where I'm a cynical nervous wreck 99% of the time...), I have some genuine hope and optimism when it comes to diabetes.  I have a real belief in some kind of cure, and I can barely keep up with the evolution in diabetes tech as it is which can only make living with diabetes easier.

It is hard living with this condition.  It is astronomically hard.  Nobody would choose this for themselves - a condition where one-fifth of one drop of insulin can be the difference between too much or too little.  A condition that is on top of you every single day.  But I try and remind myself that it's also a condition that's taught me so much about myself.  I've learned so much about how much I can do when I have to.  I've learned how to be kind to myself (well - sometimes), how to be resilient, compassionate and empathetic and so much more.

I definitely wish I hadn't had to carry this with me for 20 years.  And I can't say I'm running with open arms towards the next 20 years either.  But the experience of being his person with diabetes has given me so much more than I thought it ever could, and that's the thing I'll hold onto more than anything else.

(Blog title is a little throwback for when all my blogs were song lyrics because I was am that cringy.  But I guess it's also a reminder that diabetes isn't everything you've come to expect - it's a lot more than that)