Diabetes and grief

I could have redrawn this, but I copied it from this article.

Rather than hastily cobble together a half-baked 'review of the year' for the past 12 months, I've decided to write something on a topic which is more or less constantly filling all of our minds in this house at the moment. I suspect this is more of a catharsis for me, than of any use to anyone else, but writing often helps me process things, so here it is.

I've often come across the concept of a relationship between diabetes (or any long term condition) and grief. I was born in the year Elizabeth Kubler-Ross first modelled the 5 stages of grief - Denial, Anger, Bargaining, Depression, Acceptance. Anyone who has received a diagnosis of type 1 diabetes is likely to recognise all or some of those phases as you grieve for the loss of your health, perhaps for the loss of the life or career choices you once hoped for. My own experience of grieving over my type 1 diabetes is that it has actually rarely felt like grief at all. And yet I can certainly see those stages coming in unpredictable waves over the years. Not in the neat diagrammatic 'first you get this... then you move on to this...' way sometimes illustrated, but in more of a cyclic ebb and flow. Peaks and valleys. Dark and light. Some stages repeating and recurring, others barely registering.

I've lived with this 'diabetes grieving' for approaching 30 years, and once I'd seen the phases/stages model, I found it quite a helpful way to understand my erratic thinking from time to time. Over the past 12 months I've been very glad that I've had a bit of a practise at this grieving lark.

Jane
Almost exactly 12 months ago, between Christmas and New Year, Jane (my wife of 24 years and occasional co-author of this blog) fell down the stairs. She went to the Doctor's when the pain in her back wasn't seeming to get better and, along with the long queue of people who go-to-the-Dr-with-a-bad-back, went through the standard sequence of stronger painkillers, x-rays, scans, more painkillers etc. A different locum every time (at least initially), and each appointment a few weeks apart.

It never was her back.

One collapsed lung, significant weight loss and a "Hmmmm, that doesn't look right" about her pancreas later and she was diagnosed with an aggressive, terminal, pancreatic cancer in May 2018.

I first met Jane in 1993. She was working part time in a framing shop just down the road from where I was working at the time, while she was simultaneously building a career as an artist, illustrator, dressmaker and doing a little soft-furnishing on the side. She remembered me because the mount I asked for was a peculiar size - I had mis-measured it - and as if heralding our future together she gave me exactly what I asked for, before gently letting me know I’d got it wrong and sorting it out for me.

I kept popping back to the shop hoping to bump into her. Browsing the greetings cards by the door, then losing my bottle. Eventually after buying more cards than anyone could sensibly need, I plucked up enough courage to ask Jane for lunch at Pierre Victoire. We had lamb.

We went to the Odeon and saw, ‘In the Line of Fire’. Clint Eastwood, John Malkovitch and just enough exploding helicopters for a perfect romantic evening. And then we walked and talked all around the city centre and harbourside long into the night. I think I knew right then. Perhaps we both did. About two weeks later we had a faltering conversation in the car about where we thought this might be going. We realised, of course, that any talk of engagement and weddings after so short a time would seem ridiculous to everyone else. So we vowed not to speak of it again and to review how we felt in 6 months.

6 months later we got engaged and were married in November 1994.

The way Jane responded to her diagnosis and coped with the following 6 brutal months was nothing short of extraordinary. She went from "come in to find out the results of the scan" to "palliative care" in the space of about 6 minutes. She amazed me. Heroic, feisty, hilarious, determined, positive and with a level of empathy that I cannot imagine many others on the planet would have possessed. We had an amazing last summer together as a family. We wept, we laughed, we talked, we shared, we planned. We ate lots and lots of cake. We were utterly humbled by the outpouring of love and support from friends, neighbours, family and professionals around us.

Jane died in October 2018, and Christmas day this year marked exactly 2 months to the day since she died.

Jane had always joked that she'd 'go first'. And the irony of her managing to do it with something pancreas-related was not lost on either of us. We laughed. There was a lot of pitch-black humour in those last months.

The immediate aftermath of a death seems to involve an extraordinary amount of admin. Honestly it just keeps rolling in. Quite how some people can navigate through those hoops while also dealing with the immediacy of the loss is beyond me. It does form a half-welcome distraction at times, but really - I cannot believe that this is the best way to handle and process a situation that is affecting hundreds of families today (whichever day you are reading this post). People who might have learning difficulties or other challenges to juggle alongside the need to suddenly make dozens of appointments and complete rafts of paperwork.

And the initial weeks, turn into a month. And actually, we'd all begun our grieving with the terminal diagnosis 6 months earlier.

Almost inevitably, people have been asking me, "How are you doing" quite a bit. It's not unwelcome, but it's also not always an easy question to answer. Not always easy to say, or describe - or even understand yourself. I've come across various metaphors and illustrations of what grief is like that I've found helpful. Grief as a rollercoaster. Life growing around grief. Grief as a box-ball-and-button. And me being me, I've been trying to understand my experiences with an analogy of my own.

Original photo by Sam Howzit. Creative Commons 2.0

The Frozen River
I woke with this picture in my mind very clearly one morning. I'm not sure if it was left over from a dream, or arrived just at the moment of waking. I've thought about it often since. I am standing on the bank of a frozen river. The sun is shining, the river is vast and wide. I step out onto the surface. The sunlight catches the frozen surface glittering and shining. As I cautiously take more steps I am aware that beneath me there is a dark broiling current, swirling and eddying. At any moment I might fall through and be plunged into the inescapable blackness. As I shift weight stepping forward the ice is creaking and giving off little pings and ringing chimes. Utterly beautiful, but they only serve as a reminder of the precariously fragile nature of what separates me from the churning depths below. I cannot go back to the shore I have left - I have to keep going. I cannot clearly make out the far bank ahead of me, though I know it must be there. The ice reaches out into seemingly infinite distance with no way of telling how far I must go. Sometimes the mist blows in and the ice beneath me feels so thin, so fragile that I can barely risk it. Other times it feels more sturdy, the sun cuts through and feels warm on my face, the sparkling chiming surface transcendently beautiful. I must keep going to get to the other side. Keep focussed on taking gentle step after gentle step. Trust that the surface will keep supporting my weight. Somewhere up ahead, even though I cannot see it, will be the far bank, and warmth, and safety. I just have to keep going.

Sadness and sorrow
I've always loved carefully chosen words (not that you could tell that from my barely coherent ramblings here!). Poetry, and especially song lyrics, that express deep truths with beautiful economy and precision. Really good advertising copywriting too. Saying a lot with very little.

I had an 'Ahhhhh! Yes that's it...' moment earlier this month when I realised that what I was feeling was sorrow and not sadness. Sadness has happened too, of course. Sometimes sharply intense. Other times just gently lapping at the edges of my mind. But for me sadness has a more fleeting, temporary quality. It is the stuff that comes in waves. Sorrow is deeper, further down in the geological centre of me. A seam of it running deep, underpinning everything. No matter how enjoyable and lively my days are, how much laughter and fun I am having, there is always the sorrow running underneath. Occasionally the seam of sorrow breaks up to the surface and emerges - obliterating everything else - before eventually receding back down to the depths.

Jane always said that life comes in chapters. And 2019 will see the kids and me gingerly embarking on a new phase. I am incredibly proud of the amazing, talented young people they already are, and are continuing to become. I am staggered by their gifts, their resilience, their abilities, and their nature. The next 12 months could see some amazing changes for us all as they both launch into whole new young-adult chapters, and I know that Jane could not have been more proud of them.

Here's to an amazing, fun-filled 2019 whatever you are planning, and whatever you have to face. And thank you to everyone who has helped and supported us as a family over the past year. It means more than we can say.

Rage Bolus - a Christmas classic

Disney Pixar's Inside Out. One of my absolute favourite films.

I've seen a few things about rage boluses in recent months and it did that rare thing of making me think, "I should write a post about that".

I can't remember exactly when I first came across the term 'rage bolus', but I think it was quite soon after discovering of the power of peer support and shared experience. I am almost certain that it came from that most legengary of #DOC legends, Kerri Molone Sparling's Six Until Me, and I'm pretty sure that it was Kerri who came up with the phrase originally.

If you live with diabetes and use insulin, even if you've never heard it before, you will instantly know exactly what is meant by a rage bolus. It was phrase that made me go, "Aha! Yes!! I know that thing." Type 1 diabetes can be incredibly frustrating to live with. For all the illusion of 'diabetes maths', and there is no question that sometimes carb ratios and insulin sensitivity factors can and do work (some days / most of the time / once in a blue moon), it is also absolutely the case that there's a lot more going on than food + dose = reliable results. And when things go a bit off track you can feel that you have got it wrong (and sometimes you have!). A sense of personal failure. Feeling like an idiot. So frustrating. Other times you know that you have done all the things you are supposed to do (scrupulously counted carbs in a carefully chosen, healthy meal that you've eaten many times before with reliable results) and still your BG ends up in chaos. Doubly frustrating. Or you just decided to treat yourself (after all everyone else with their functioning pancreases and none of this to worry about were having a lovely time) and then you see it all coming back to slap you in the face, even though you tried your best to work it out. Triply frustrating.

Sometimes there are only so many small, carefully-calculated, properly-spaced correction doses you can try and wait grinding your teeth and stewing in double figures for hours (or days) willing your BGs to stop inexorably rising or stubbornly unmoved before you go OH FOR GOODNESS SAKE and whack in a big ole slosh of insulin to try to get things moving downwards.

And as we approach Christmas I am aware that we are heading into 'rage bolus' season. Meals are likely to be less predictable. Less easily guessed or measured. You may have a little sniffle, or be drinking sugary alcohol, be surrounded by endless nibbles, or be less active than usual, or exposed to any number of other factors that might make decent dose-guesswork much harder.

Let me just be perfectly clear about this - rage boluses are generally a terrible idea. They almost always result in hypoglycaemia, sometimes in a really nasty and stubborn and/or scary low. And crashing from one out of range BG to another at the other end of the scale is likely to make you feel even more frustrated, annoyed and difficult to live with.

So why do we do it to ourselves?

Because, frankly, sometimes it WORKS. And like an addicted gambler feeding endless coins into our BGs fixed-odds betting terminal we have reached the end of balanced and logical assessment of likely outcomes. Sometimes high BGs are the result of a significant underestimation of carbs. Or perhaps it's a dose that hasn't absorbed properly. There are circumstances where we are in 'insulin deficit' of a number of units. And where the food already eaten is still feeding glucose into the bloodstream, and where a dose isn't likely to reach maximum effect until an hour after you grit your teeth and go for it, there can be long, long hours between a measured, cautious correction dose and seeing any effect at all.

Repeatedly, I have heard respected diabetes clinicians suggest that one of the reasons that rage boluses are a bad idea is that taking more insulin doesn't make it act more quickly, it only makes you fall further in the end which leads to likely hypoglycaemia. I think it would be much easier to resist the rage bolus urge if this was actually true. The simple, demonstrable fact is that taking a larger BG correction does make it act faster to reduce high BGs. We know this because we see it happen. And to pretend that it doesn't really isn't going to help me in a consultation. If I take a 0.5u correction dose (as suggested by my pump or smart meter) then after a reasonably predictable onset time I will have a proportion of that 0.5u available to act on my errant BG. If I take a 5u correction, after the same onset time I will have much more circulating insulin available. It may not be exactly mathematically 10x as much, but it will be more. And If I've rage-bolused before and checked after 30 minutes, then an hour, an hour and a half... I will have seen this happen.

Rage boluses do reduce high BG faster.

It's just that they also add chaos onto more chaos.

Sometimes I will make this calculation in my head:

OK so I've currently got annoyingly high BG. I also have some insulin already on board. Along with that, I also have half a meal which I may (or may not) have hoplessly inaccurately estimated that is feeding more glucose in. Some of which will be accounted for by the dose that's already acting. Or possibly it won't. Solution? I'll dose a big ole slug of insulin in now to get things moving in the right direction over the next 2 hours, then depending on how things go I will eat some extra carbs later on to mop up the last bits of the dose.

I mean... what could possibly go wrong?

I once referred to this frustrated act-and-counteract ballet as uncertainty tennis (particularly where my guesses and second-guesses follow in double-quick time and everything overlaps far more quickly that it can possibly have had enough time to actually take effect).

Try to give yourself some head-space this Christmas. Give yourself a little more leeway. Perfection is an illusion. BG perfection doubly so. No one wants to live with a grumpy pancreas-impersonater muttering and grumbling after every meal.

And if possible try to resist the rage bolus urge. Except for the times when it works perfectly and brings you back neatly into mid-range. I mean... those are just awesome! (and incredibly unlikely)