The biggest thing to happen to me in 28 years 💌

Notes on life, redefined.

It’s always interesting to see type 1 diabetes written about in the news.

This intricate, complicated, nuanced dream-snatcher of many thoughts, feelings and frustrations, distilled down into a few headlines that are often slightly inaccurate, typically a touch confused, regularly conflated with type 2 diabetes without distinction - an equally misunderstood but very different condition.

This week in the UK press we’ve seen a wave of announcements around the rollout of the ‘artificial pancreas’ for people with type 1 diabetes - not a totally accurate depiction because it’s not the absolute solution it’s being touted as, but I’ll forgive it because it is indeed the promise of a better future for the hundreds of thousand of people in the UK alone who, like me, live with this chronic illness.

How do I know?

Because after almost 28 years of living with type 1 diabetes - 18 of them spent keeping myself alive through multiple daily injections (manageable, with a truckload of work and some blissful ignorance) then nine on a ‘standard’ insulin pump (better, with a truckload of work around hourly dose adjustments and an incredible amount of continuous data)… I got my own artificial pancreas, more accurately known as a hybrid closed loop system, a couple of weeks ago.

And with no exaggeration, or hint of trying to make a sexy headline because I’m not a media outlet and also because this is my LIFE… it’s the biggest thing to happen to me, not just in my diabetes but in my existence, since I was diagnosed back in 1996.

As an unassuming, unaware and unequipped 8 year old, I was plunged without warning into the lifelong task of accurately imitating a fully functioning pancreas, which with the best will in the world is a categorically impossible feat. 

I unwittingly signed up to making an extra 180 decisions every single day for the rest of my days, around obligations and schedules and to-do lists and hopes, fears and dreams, just to make sure my own body doesn’t kill me. Which it would, very effectively, in just a few short days should I refuse to continue with the mission. 

Since then, all of my days and a lot of my thoughts have been occupied by this continuous, relentless and rather outrageous task. Multiple times an hour I am either thinking about it, taking action on it, or both.

And now, after 28 years of the constant low level (and sometimes high level) stress, worry, obligation, demands of type 1 diabetes, the running running running mental marathons every single day at all times of the day and night just to stay out of an ambulance, let alone actually feel OK, let alone be able to function to some degree, let alone attempt to live a happy and fulfilled life…

The hybrid closed loop system has immediately changed my life for the better.

It hasn’t done so with a loud fanfare, but with a shift that is subtle and discreet in the magic it is working on my body and my mind. But the effects are huge, and external - to everyone I touch, everyone I come across, everyone I interact with or provide work for or show up for or care about. 

Because I can think. I can do things that aren’t being shoved and squeezed and capped and restricted and interrupted by the constant, incessant demands of type 1 diabetes. A whole, significant, part of my brain that was overflowing with diabetes-related stuff has been handed over to a machine better equipped to deal with it than I could ever be, even on my best days.

And this life-changing shift was made clear from the first hour I hooked myself up to it, staring in amazement at the system in my hand as it worked away, automatically making incremental decision after incremental decision around my insulin doses without me doing a thing.

My hybrid closed loop system makes insulin adjustments in 0.05 unit increments every five minutes, taking data from my continuous glucose monitor to predict what my glucose level will likely be in 60 minutes time, and taking action accordingly to either increase, decrease or pause insulin delivery based on a target glucose I have set.

With insulin injections doses are big and vague and inaccurate and sometimes painful. With a ‘regular’ insulin pump, doses are small and precise but they are not automated, and no human has got the time or inclination to action a diabetes decision every five minutes. So the level of adjustment that a hybrid closed loop system offers has so far resulted in a level of time in range that is significantly higher with, I would estimate, around 35% of the effort on my part.

I know. It’s incredible.

I still have to deliver insulin for meals and corrections, which is why it’s not *quite* the big cure it’s being touted as - no machine can guess when and what you’re eating.

After a couple of hours of training I walked out of the hospital with my hybrid closed loop up and running. I soon dosed my bolus insulin and ate my first meal, ravenous after all the excitement and information, but nervous to tuck into my Marks and Spencer’s sandwich as I hopped on a train, waiting for the glucose line on my monitor to explode out of range one way or another, as it did for the best part of a month when I switched from injections to my first insulin pump. Said blood glucose level explosion is not a definite but it is entirely likely based on the 40 or so different factors that affect blood glucose, all of which I consciously or subconsciously predict or account for when trying to get my doses right, all of which tend to collide slightly differently from one day to the next, giving me slightly different results every time.

Nothing but a murmur from the continuous glucose monitor. I carried on with my day, waiting and watching for alarms, sudden spikes or plunges or changes that would interrupt my to-do list and require urgent action from me. 

Nothing. Just a deliciously smooth line indicating that my glucose was within a healthy and safe range - where it stayed for the remainder of the day. I slept overnight without the interruption of a glucose alarm for the first time in weeks. I woke up feeling like I could function as an actual human being, as opposed to a mentally exhausted, sleep-deprived, hyper-vigilant, hyper-independent gremlin with an insatiable thirst whose kidneys are screaming in protest at the dehydration they suffer as a consequence of sustained high blood glucose. 

Not every day feels like that, if and when I get things right. And I do, a lot of the time, thanks to 28 years of paying attention to how my body works in a way that I continue to find impossible to articulate in its vastness, depth, nuance and inconsistency. But after years of incredibly hard work and knowledge accumulation, my type 1 diabetes is what is considered to be ‘well-managed’.

For me, ’well-managed’ means I think about it the second I wake up, a dozen times an hour (not an exaggeration), about three hours ahead of any potential activity I think I might be in the mood for that evening, and weeks ahead of any trip I am planning. Temporary basal after temporary basal each day, nudging down my highs and preventing my lows. Tweaking, tweaking, tweaking to keep up with my body’s response to living. Whether I’m eating or working or running, whether I’m sat at home or out in a restaurant, whether I’m in the company of a loved one or meeting someone for the first time, diabetes is there. I’m usually multi-tasking, glancing at the data as I cook or type or talk, considering whether to take action based on what has happened, is happening and could be about to happen. 

And over the years, I’ve got used to it. It’s just what I do; it’s just part of who I am. As I’ve climbed career ladders, emotional mountains and literal volcanoes, as I’ve travelled the world, moved house, made friends, fallen in love, drunk too much and worked too hard, diabetes has been there. I’ve continually managed it as I’ve pushed the boundaries of what’s possible in this life - sometimes smoothly and triumphantly, sometimes almost catastrophically; waking shaking and sweating in the dead of night, alone and terrified after the numbers have plummeted despite my best intentions. Mostly though, it just gets done, quickly and quietly, alongside all the other things that need to get done as you move through life. 

And I’ve made peace with it. I don’t ask for pity; I consider myself to be incredibly fortunate and I think I’ve achieved a lot both because of it and in spite of it. Anger is heavy, exhausting and life-limiting, and type 1 diabetes has given me community, compassion, resilience, knowledge and wisdom as I’ve tried to keep up with its demands. I’ve done pretty well overall, I think. I’m healthy. I’m happy. I’m fulfilled.

But it’s a lot. I’ve always known it’s a lot. 

So as I watched in disbelief at my new sidekick working away for the first few days, it was incredibly confronting to see for myself just how much work I have been doing for so long. I knew it was a lot because I live it, carrying most of it in my head without speaking it aloud to those around me. But suddenly it was all there written out in my hand, 12 decisions an hour, every hour, just to stay upright before you’ve even begun to consider the mental and physical gymnastics of trying to dose for food. It was arresting to be faced with all the effort I’d put in to not only survive, but keep myself well enough to be capable of LIVING.

I looked through the endless list of decisions in the daily history log, decisions either myself or a caregiver have had to make for the last 10,188 days as I type this. 27 years, 10 months and 22 days. They say you become an expert after 10,000 hours of practise, but after 244,512 as a person living with type 1 diabetes, there are many days when the outcome still defies the experience and I am left feeling the physical and emotional consequences. 

As I scrolled through it all, listed out in black and white, my heart shattered for 10 year old, 17 year old, 29 year old, 35 year old me. I was so proud, but it hurt to see it.

It was also as painful as it was incredible to be made aware of how much better it was possible to feel.

But that wasn’t something to dwell on as the days went by and I continued to step into my new normal, getting more and more comfortable as I admired how much better it really did feel. 85% in range. 92% in range. 88% in range. If I get my overnight wrong because I’ve eaten too late, I’ve ended up around 65% in range, but I’ve watched in awe as my highs top out at 11 or 12, not 16 or 17. I’ve been so relieved to realise that the only lows I’ve had have been caused by me, as I’ve put the bigger doses of insulin into my system that are required for lunch or dinner and subsequently been distracted by the work that is demanding a lot of my time at the moment. Usually in these more intense periods of freelance deadlines, the adrenalin wreaks havoc on my glucose levels and full burnout ensues. But the system has kept it all within my grasp, which has allowed me to keep pushing through, knowing it’s all temporary, knowing that I’m not causing extra harm to my body in the process of trying to keep it all together.

Hybrid closed loops are not a magic solution. They might not be for you, you might not be interested. I’m still going to count my carbohydrates wrong, I’m still a human with hormones that will affect my glucose levels outside of the system’s capabilities. I’m going to forget to charge it, forget to order my supplies, forget to replenish the stash of glucose in my handbag before I leave the house for a busy day of errands.

But I can breathe.

There is air, and there is space between my thoughts. I finally understand what people mean when they say they can function on six hours of sleep because the sleep I’m getting is real sleep. I can think more rationally, and retain more information. My day isn’t continually interrupted, and I don’t constantly feel like I’ve forgotten something important or that I’m sprinting just to catch up. My heart is lighter because the system has shared this heavy load, one that has been mine and mine alone to carry for so long. I trust it. It works.

My life will be longer because of it. 

Once again it’s left me feeling grateful to and humbled by the people that have dedicated their lives to developing technology like this. It’s left me feeling sad that so many people around the world will live their entire lives without getting hold of it. It’s left me feeling guilty that I have it when others don’t. There are issues - my funding was approved last summer but it’s taken this long for my overstretched diabetes team to be able to organise the training required to start on the system. My life was changed that morning in the space of a few short hours, but there won’t be another session for months because (I’m told) my hospital’s chief executive has put a freeze on hiring more diabetes staff. The technology is there but the implementation is not, and that’s beyond frustrating.

But despite the issues, more than anything else, it’s left me feeling hopeful. Hopeful because this technology is here, and it will only become more available, not less, and it will only get better, not worse. Hopeful because the UK is a world-leader when it comes to access to diabetes technology (something I feel is worth remembering), and with a little bit of patience and some continued, incredible persistence from Partha Kar and others, the rollout is coming. Hopeful for the quality of life people with type 1 diabetes can now live - lighter and brighter and more spontaneous and less vigilant. Less afraid to have children, less afraid to fall in love, less afraid to be themselves, better equipped to tackle the physical and emotional challenges that come with chronic illness, more able to define for themselves what it means to live with one, less afraid to dream about what might be possible and more confident to get out there and get after it - more present than ever before.

So if you’re waiting, know that this is coming. If you’re in a period of diabetes burnout, know that you’re not alone, and know that life will get better. Know that this will get easier. If you’re on multiple daily injections and you’re hesitant about an insulin pump, like I was for years, I cannot overstate how much better life feels not only compared to injections, which I felt ok with, but compared to my previous insulin pump, which I felt good with. 

If you’re angry about diabetes, as I have been, there is hope.

If you’re sad about diabetes, as I have been, there is hope.

If you’re nervous for your child’s future, there is hope. 

There is hope. This incredible progress, this machine, this robot, this diabetes technology, this ‘artificial pancreas’, this hybrid closed loop system signifies indescribable hope. And attached to it there’s a human being who feels closer to being whole. You deserve that. We all deserve that.

It’s life, redefined. 

Please Note: the hybrid closed loop system I am using is Omnipod 5, integrated with a Dexcom G6. I have a professional relationship with both companies, but this article has been written independently of those relationships and, as always, the views expressed within are entirely and authentically my own.