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.

More than Diabetes, 4 minutes of Marvin - DBlog Week Day 5

Today is the last day of Diabetes Blog Week, and the prompt is an invition to share something non-diabetes related - "an interest, hobby, passion, something that is YOU... because there is more to life than just diabetes!". Huge thanks again to Karen at Bittersweet for organising such an inspiring week.

I read the topic list at the beginning of the week and really had no idea where to go with this one. But as I wandered out this morning, in glorious sunshine with our wonderful, affectionate, friendly, beautiful dog, I could think of nothing better. Huge apologies to anyone whose toes are already curling in that someone-over-sharing-pictures-of-their-children-on-Facebook way. But here it is...

We got Marvin a little over a year ago, and he has had such a massively positive impact on all of our lives. He's a medium sized cross-breed, mixing Clumber Spaniel with Miniature Poodle, to make a 'Clumberdoodle'. He motivates me to get out and about every single day - any time I meet my notional step goal target for the day is down mostly to Marvin. He is playful and affectionate, but not annoyingly so. He likes a snooze and loves people, children, and other dogs. He knows just when to snuggle-in, if you are feeling frustrated or down, and as our youngest pointed out not so long ago, having Marvin ensures that each of us will laugh out loud at least once every, single, day.

It is almost impossible now to remember life without him.

And since a picture is worth a thousand words, and a video is made up of thousands of pictures viewed one after another to create the illusion of movement*, I have chosen to produce a short video to give you 4 minutes of Marvin. Enjoy!

* One for the Wittertainees there.

For other posts on this topic, check out the Day 5 link list.

4 minutes of Marvin

Nothing like as '2016' as it seemed

Parliament (or possibly Hogwarts?) - one of a number
of inexplicable invitations in 2016

When I was imagining writing this post, the inevitable looking back over the last 12 months, I thought it would start 'last December' but as is the way of things these days, I have missed that particuar deadline and now I have to start with the significantly more cumbersome 'in December 2015', or possibly 'a little over 12 months ago'. It's a good job you are not here for the quality of the writing - or the frequency of postings for that matter. Whatever the reason for your stumbling across these witterings I'd like to say a massive THANK YOU for reading, commenting and all the encouragement you offer though FaceTwit and all those other new-fangled Social Medias. Genuinely, sincerely - thank you.

2016 was, by many people's reckoning, a bit of a git of a year. There were some things that happened that many people would have preferred had not, choices were made that left some people feeling distinctly 'Huh?!' or occasionally 'Oh NOOOOOOOOOO!!!!' and death seemed to be stalking around picking off an extraordinarily large number of beautiful, creative and talented people to such an extent that it is really hard to remember more than a few of them without feeling slightly overwhelmed. Humanity's ability to be generally awful to each other seemed to be conspicuously in evidence and even the weather and the stability of the earth's crust itself appeared to want to get in on the act.

And yet, when I look back over things closer to home, I realise that we as a family had a pretty great year while all of that was going on. Our eldest left to study away from home, found some great housemates and is having a wonderfully creative time. Our yougest embarked on a new adventure, effectively the next stage of their life, and is exhibiting extraordinary maturity and creativity. And we added a new hairy member to our househood who ensures, as has been remarked upon, that at least once every single day, each of us breaks into a massive grin and/or hysterical laughter.

Early last December (except-that-technically-it-wasn't-because-December-finished-yesterday-so-I-missed-it-by-one-day-but-anyway-you-know-what-I-mean-because-December-2015-sounds-too-long-ago) I took up an invitation to speak at the Royal College of Physicians in Edinburgh. This was the first time I had been asked to speak to healthcare professionals and share my 'grass roots' experience of living with type 1 diabetes, and it was as rewarding as it was utterly terrifying. In January I was invited to talk about what it had been like contributing as a lay member of the Guideline Development Group for the updated NICE guidelines for type 1 diabetes in adults at Partha Kar's #talkT1 event which later gave rise to t1resources.uk. In March I received sponsorship to attend the Diabetes UK Professional Conference where I spoke about my experiene of using the Freestyle Libre glucose monitoring system and a few days later was invited by the wonderful May Ng's to speak at the Children and Young People's North West Network Education Day in Leigh. June saw me invited by Abbott to join bloggers from across Europe at DxStockholm for a hugely inspiring weekend. More invitations followed to present to parents or children with diabetes at the CYP East Midlands Network Day and to healthcare professionals at the Yorkshire and Humber CYP Diabetes Network. In the meantime a funding application was granted for a clinical trial of a new intervention to tackle problematic hypoglycaemia for which I have been asked to assist with patient involvement (much more on that later). Along with some really interesting and useful meetings as part of the Medtronic 'Bloggers and Advocates' group I was also invited to share my experiences of hypoglycaemia as part of their excellent Hypo Heroes campaign for World Diabetes Day 2016. There was also an entirely unexpected invite to a meal at the Houses of Parliament, but to be honest I have a suspicion I may have dreamed that one. I mean... what would I be doing at the Houses of Pariament?!

The growth and launch of T1resources.uk from an embyronic 'wouldn't this be a good thing' idea to actually seeing the site filling out and gaining traffic has been a particular joy of 2016 - and seems to be one that will continue to grow in value and presence during the next 12 months.

Diabetes-wise 2016 has not been without its struggles for me. While all those 'peaks' and moments of excitement were going on, sometimes it felt like I was living in a very deep and shadowy chasm, perhaps largely of my own making. But more recently (and particularly following my most recent Pump Clinic appointment where some of you wisely advised me to opt for 'painful honesty' with my team) I have felt more myself about my T1. While it is still intensely irritating at times, I feel considerably more on top of things than I have for a good long while. And improvements in BG levels? Well those too may come in time.

Looking forward it is hard to know quite what to expect from 2017.

I have made one small, but potentially quite significant decision though. For the last two years I have occasionally used Abbott's Freestyle Libre to either see me through particularly chaotic periods of blood glucose (Christmas, birthday, summer holiday... that sort of thing), or to act as an opportunity for a reset when things have drifted somewhat. All of the extra data make it slightly easier for me to separate wood from trees and to tweak basal profiles and/or meal and correction ratios.

For 2017 however, while I may still occasionally use the Libre I have decided divert some family funds and to finally invest in the transmitter and charger to allow me to occasionally use CGM with my MM640G. If I can manage to stretch sensor-life to 10 or 12 days then the ongoing sensor costs are not dissimilar to Libre and, of course, come with the added benefit of SmartGuard, which worked so well for me before. I will only know whether this level of occasional use will be of any benefit to me if I try it (research data shows that better outcomes come for those who can use for 70% of the time - which is sadly significantly outside our funding ability). The cost of the transmitter is an eye-watering £500 and it is only warrantied for 12 months' use. Nevertheless the system was so effective for me when I used it before that I am keen to see if I can replicate some of the same effect with an odd sensor every so often. And, of course, whether the CGM data will allow the same 'reset' opportunity that I currently gain from a fortnight of Libre wear every month or two. My hope is that the transmitter will continue to function beyond the 12 month warranty if I treat it gently and talk to it soothingly every so often.

Time, and subsequent blog posts here, will tell.

Normal service will be resumed as soon as possible

Apologies for the interruption - the fluffy four-footed addition to our household has made finding time for blogging very difficult in recent months. Which is unfortunate really, because I have at least three or four posts waiting in the wings that I would really like to put together!

We picked up our young Clumberdoodle pup at the beginning of April and time has absolutely flown by since. For a couple of months before Marvin's arrival we were busily DIYing and generally attempting to puppy-proof (ha!) the house and garden a little. It's all been a bit of a blur to be honest and reminded Jane and I of a heady combination of those weeks with a newborn babe, mixed in with a good dollop of toddler mischief and a hint of teenage experimentation and boundary-pushing. Fortunately Marvin is a dog who likes a nap, and can be persuaded to do pretty much anything for the promise of a bit of chicken or nibble of Schmacko.

Around the middle of March I was chuffed to be invited by the wonderful Dr May Ng to speak at the North West Children and Young People's Network Education Day - if you'd like to get a glimpse of what went on I put together a Storify of the tweets. Alternatively, everyone's favourite Diabetes Dad, Kev Winchcombe wrote a great, but altogether far too modest blog post about the day. His talk was far more packed with laughs and interesting detail about diagnosis, transition, DIY APS and Nightscout than my blathering about spurious similarities between daily management of type 1 diabetes and Scalextric!

In the coming months I am really hoping to post a follow up to my reflections on DPC2016 detailing what I picked up from Iain Cranston's fantastic presentation on interpreting CGM data and Ambulatory Glucose Profile reports.

Additionally I have seen a number of conflicting reports/research about cholesterol and Statins in recent weeks and I'd really like to post something about that - if only to be able to process it a little myself.

Thirdly, I am honoured to have been invited by Abbott to attend an event in Stockholm in June called 'Dx' which looks to be really very interesting indeed.

Lastly I have been quietly working with a few other DOC legends (quite how I managed to scrape into their hallowed company is beyond me) on something I am only half-jokingly calling "Project Enormous". We hope that soon - perhaps in the next month or two - it will reach the point where we can release it into the wild and see if it has any 'legs', and lives up to the promise of the idea.

Exciting times.

Hope your BGs play fair in the meantime and thanks, as ever, for reading.

Disclaimer. For my attendance at the North West Diabetes Network Education Day my travel and accommodation expenses were generously paid, but no speaker's fees were offered or received.

Painting the Forth Bridge

The Forth Bridge (CC licensed)

Famously, the painting of the Forth Bridge (an enormous railway bridge across the Firth of Forth in Scotland) took so long that by the time the workers finished painting this spectacularly beautiful collection of girders, steel, bricks and sweat, it needed to be started all over again. Apparently this is no longer the case and the painting has finally stopped, at least temporarily, but bear with me here as I indulge myself in a little cliched allegory.

Painting the Forth Bridge - I wonder what it would be like to be one of those people given that task.

Perhaps a young man, in his early twenties. Suddenly, unexpectedly, given this massive undertaking. A job for life. It must surely have been a daunting prospect. But perhaps there was something of a challenge about it too. Something to get stuck into. Something to work towards. And while the tools were, at first, unfamiliar and clumsy, he was determined to see the work done. To do it the best he could. To protect this beautiful structure.

And the days turn into weeks, and the weeks turn into years. And still it goes on. It is hard work. The schedule is punishing, but it has to be done. He pushes on. The tools are more familiar now - he's actually got pretty good at this painting lark. He has picked up some tips from others who have been painting far longer than him. He can even take some of the difficult corners in his stride, the awkward spots that he could never really manage before. Occasionally a new brush or a fresh pot of paint kindles some excitement and interest. Spurs him on. Improves his technique. And then back to the graft.

And some days... some days it is just beautiful. Way up there at the top of one of the arches, alongside friends and co-workers, with the wind gently cooling his face, as the sun beats down on his shoulders. The view stretching for miles and miles. The distant thrum of locomotives passing below. The faintest call of birdsong from the marshes. When he compares his work to others' he thinks, "You know, it's not that bad." He feels lucky. Yes there is work to be done. Yes he has to be careful to keep himself safe, but in comparison to some other working conditions he knows about - he could have done much worse.

There are scary times too. When storms lash and winds howl. This work is no place for the faint-hearted then. But even then... even then there is something to push against. Something to overcome. A battle to be fought. Something almost heroic about it. Those are not the hardest times for him.

It is the grey days he fears the most. The grey, unending, energy-sapping days. Where the fog rises up and obscures everything else.

The days when his paintbrush seems to weigh even more heavily than his heart. When the neverending nature of the task overwhelms him. No matter how hard he tries, no matter what he does. He will never finish. Stroke after pointless stroke. Hour after pointless hour. And still no nearer the end. There is no end. And if he slows down, he only gets further behind. The task goes on and on. Unrelenting. Inescapable.

He has an annual performance review with the HR department. They seem happy enough with his work, but can only talk about the rust and decay that constantly threaten the bridge. The rust... the rust... always the rust. He must not let up they say. He must keep up his workload. They come down pretty hard about Health and Safety too. Apparently, though he tries to be careful and is pretty diligent with his harness, hardhat and boots, he is not doing enough. He could slip at any moment and that would be it. They don't seem to understand the reality of what it's like up there. Sometimes you have to move from point 'a' to point 'b' and it's not always possible to be fully harnessed-up in between.

He ventures to ask about a new piece of painting equipment. It would make his work much easier, and much safer. He has even tried it and has seen what a difference it makes. Unfortunately 'the management' will not provide it. It is too expensive, and they are not sure they believe the promises in the brochure. The HR department are sympathetic, naturally, but the decision is out of their hands. He knows, of course, that his equipment is pretty expensive already. It's not a surprise that the newest and fanciest stuff is out of reach. But his head and his heart feel differently about it. Part of him aches for what might have been. Part of him wishes he'd never even heard of this new stuff.

And the grey days continue. He blunders on. Barely looking at what he is doing now. So tired. So tired of it all. Sometimes he looks at his brushes with loathing. He wants to throw them over the edge. Cast them into the broiling waters below. Just watch the bridge decay and fall. The rust... the rust... To surrender the bridge to the elements.

To stop.

But he can't. He WON'T stop. He pushes down the melancholy as an act of will. He knows so many people that love this old bridge. Who rely on it. Who need it. He wants it to be there for them.

So he picks up his brush one more time.

Sighs.

And carries on.

Getting animated

I was remembering back to my heady art college days recently, particularly some early experiments with animation. Animators at the Disney studios developed 12 principles of diabetes animation in the 1930s, including anticipation, follow through, slow in/slow out and, of course, squash and stretch. All these seem to have an uncanny resemblence to how my blood glucose levels have been behaving.

From time to time (read more or less constantly) I seem to go through periods of change where I need tweak various doses, ratios and settings in order to get them to behave normally*, so that the dose and timing of insulin for a meal which worked perfectly last week might be expected to work again for the same meal this week - in the SAME way (craziness!).

* I realise, of course that this has no actual meaning in day-to-day diabetes management terms. But it is, nevertheless, a nice idea.

An obvious one might be during a period of illness. You expect your insulin requirements to increase at some point, to some unknown level... but it's very difficult to actually anticipate with any certainty what the change might be and when it might happen. Even with illness, some coughs and colds behave completely differently to others BG-wise. Some are all up front. And it's only later when the sore throat appears that you understand why you've been fighting double figures (200s for US readers) for days. Other times you can have all the symptoms of a stinking cold, but BG just potters along entirely unaffected. Then if you have needed to up all your basals and/or doses, you know that at some (again unknown) point in the future you will need to rein them all back in again or you'll be landed squarely in hypo-central.

Another favourite is a fall-off of gym visits during a school holidays. I'm just coming into that now - the girls break up for Easter today. As the rhythm of the house changes I find it all but impossible to get up and out early enough to get to the gym and still be able to start work on time. For the first week things often toddle along as normal, but then one day in week two BAM! It's as if my insulin has turned to water. So I try to make sensible, small changes to basals. Enough to have an effect, but not so much as to go too far the other way. The constant balancing act. This usually involves a frustrating few days of doing battle with double-digit readings, however careful I am being with food and carb counts.

More recently I have also noticed an unusual phenomenon which I will be watching with interest this time. In animation 'slow in/slow out', 'squash and stretch' and 'follow through' refer to a more realistic way of handling movement. Movement tends to begin gradually, then accelerate, then slow again into changes of direction. You can almost feel it in yourself as you move about. Squash and stretch and follow through relate to the way animated objects often appear more satisfying if there is a little elasticity added. Rather than just stopping hard at the end-point there's a little extra movement beyond it and then a bounce-back to rest.

This seems to be exactly what happens with my dose tweaks too. I battle with highs for days struggling to find the right level of increase. Then I find it and I get perhaps a day or two of good numbers. But then I seem to get a little 'bounce back' and have a day of low readings where I have to dial the adjustments back down again to counter. And then things settle. At least for a while... before we're off again.

I think it's important for Healthcare Professionals to understand the relentlessness of these daily adjustments when they peer rather disparagingly at a printout of ropey numbers. There is no 'right' set of ratios and correction factors, only 'right for now'. This darned condition doesn't stand still for a minute and all the time you are playing catchup you are logging results that are outside of what you'd like to see, not because you are not trying hard or putting the effort in, but just because the rules have changed. Again. If I get a settled week or two I count myself lucky. But I know that membership of #teamsmug is usually very short lived.

That's all folks!

Splish splash - aquapac insulin pump case

The sun is shining... thoughts turn to Summer holidays.

This year we will be returning to Cornwall, to the very same place we stayed a few years ago. When we were there before the girls and I quite fancied a little gentle sea-kayak pottering in the wide open bay on our doorstep but never quite managed to bump into the kayak hire people who seemed to have a rather relaxed approach to timekeeping (and attendance in general). This year we are hoping to give it another go.

The last time we were there I was on MDI, but this time, of course, I have Artoo to think about.

I don't suppose we will be out for very long so I could just detach and leave the pump on the shore. I suspect there will be enough activity involved in paddling to make hypos more of an issue than raging highs, so the lack of basal for an hour or so would probably not be much of a problem. But... what if something happened. The last thing I'd want if anything untoward were to occur would be to be bobbing about awaiting rescue with the added 'excitement' of being just a few hours from DKA once my last bit of basal runs out.

Having asked around I've had very good reports of the Aquapac waterproof pump case, so I've decided to order one. The case is clear so I will be able to check on how Artoo is doing and it's waterproof enough to cope with anything from a bit of gentle splashing to some full-on dunking - for a short while at least!

All we have to do now is hope the kayak hire people actually turn up!

Are you 'Type 1 Aware'?

As part of Diabetes Week in the UK, D charity heavyweights Diabetes UK and JDRF have launched a brilliant video which asks the question 'Are you Type 1 Aware'? It focusses mainly on those who develop type 1 diabetes in childhood and clearly explains the very obvious symptoms which are all too easy to ignore and/or be dismissed by busy GPs as parent paranoia. Having been diagnosed in early adult hood I know myself that it was several months of feeling really rotten before I finally decided I should go and get myself checked out by a GP.

Alarmingly some of the parents in the video share how close to death their children were before they were finally properly diagnosed.

Please share this video with your family, friends, parents, teachers and anyone you know who works with children or young people. You could save a life.

Watch the video on You Tube: www.youtube.com/watch?v=tYlQTylh_0M

More information on the symptoms of type 1 diabetes: www.jdrf.org.uk/type1aware

Family support for T2s

Way back when this blog was just beginning Jane wrote about the lack of support offered to families and partners of adult diabetics. Quite rightly there seems to be support available for parents of children with diabetes, but for those diagnosed in adulthood there seems little in place in terms of help and education unless partners, spouses or carers are able to push their way into appointments with the patient.

It seems that bastion of high street chemistry Boots is trying to change that, at least for the families of people living with type 2 diabetes. Research undertaken by Boots and supported by, among others, Dr Katharine Barnard, Health Psychologist and Senior Research Fellow at the University of Southampton suggests that families could be pivotal in supporting and motivating someone with type 2 diabetes, who at the very least should have access to good information about how their diabetes is treated and what sort of checks they should be receiving.

With 80% of the NHS’s 9.8 billion annual UK diabetes bill being spent on treating complications*, mobilising the wealth of latent support represented by these willing family members could prove a powerful weapon in better management of Type 2 Diabetes and in improving lives. Eight in 10 (81%) family members say they’d use extra support if it were available which is why Boots UK has launched a new Diabetes Information Service that not only provides support for people living with the condition, but also valuable advice and guidance for their families to help them start having better conversations.

* largely preventable

I get a bit nervous when these kinds of organisations start wanting to dish out advice to people with type 2 diabetes. Partly because I see so many people on internet forums who have a terrible time coping with their type 2 based on some of the questionable advice they get from their healthcare professionals! There was also a fairly disastrous campaign by Lloyds recently which provoked quite a lot of disquiet among diabetics by failing (as is often the case) to properly differentiate between types of diabetes.

I really hope this initiative goes well. A family which understands the crucial role carbohydrates play in the management of type 2 diabetes is less likely to say, "Oh surely that won't matter?". A family that understands how difficult type 2 can be to control is less likely to think, "It's only diabetes, just take a tablet and carry on as before". A family which all eats the same diet together make it easier for the person with diabetes to stay on the wagon. A family that understands the potential consequences of poor control will be better at motivating their loved through the dark days.

I haven't had a chance to see the Diabetes Information Pack, and have only briefly looked at the the information on the Boots WebMD website. Thankfully I didn't see much evidence of the usual "people with type 2 diabetes must eat lots of starchy carbs" nonsense, but I can't guarantee it isn't there lurking in the shadows so be wary. Encouragingly they also suggested that self-testing is important in the management of everyone with diabetes (well they do sell the equipment after all). If only we could get GPs around the country to feel the same way.

If you have a family member with type 2 diabetes how able do you feel to offer support? Comments please!

Disclosure: I was sent 'press release' information about Boots new Diabetes Information Service, but was not paid to write this post (I wish!)

DBlog Week Day 7 : My hero(es) - too many to mention

For the final day of Diabetes Blog Week the prompt is to write about your Diabetic Hero, "anyone you’d like to recognize or admire...".

OK, so I've changed my mind *lots* of times about who I should write about. First I thought about some of those stand-out members of the Diabetes Online Community whose blogs, posts, insight, brutal honesty, encouragement and downright laugh-out-loud hilarity that have made such a difference to my experience of living with diabetes - even the ones I have only 'met' this week.
[Apologies to the (many) people not linked there - that sentence was getting stupidly long. You know who you are.]

Next I felt that I should acknowledge the members of the diabetes forums which have become my immediate go-to whenever I have a problem that is grinding me down, a pattern I can't spot or just need to rant and rage about the overwhelming stupidity and inconsistency of D sometimes. The folks here and here are without question the first place I go whenever I have something that needs fixing, discussing or could do with some ideas bounced around with my control. I find fascinating research papers linked. Thorny issues debated and discussed. New tactics and approaches for improving BG control. For upwards of 15 years I barely spoke to another person with diabetes, aside from maybe one or two 'friends of friends' I bumped into, whose experience of D seemed to be nothing like mine. Before I joined those forums I had almost no understanding of type 2 diabetes. I am so glad that that has changed.

I considered acknowledging *everyone* who follows @everydayupsdwns on Twitter. I have lost count of the times my day has been turned around after I've posted a "Blaaaaaaaah! Diabetes is rubbish..." tweet only to receive an instant 140 characters of encouragement from folks in all corners of the globe, day or night.

Too many options. Too many people that I would miss out, whoever I chose.

In the end, the answer was so blindingly obvious I wonder why I didn't think of it immediately. I've thought it often enough! In the end it has little to do with me and my experience. In the end it is a group of people who are often overlooked in the whole diabetes equation. And yet they are some of the most powerful advocates. Some of the most brilliant managers of this trickiest of conditions. It is simply this:

Parents of Children with Diabetes. All of them.

I was diagnosed in early adulthood (aged 21), but I know some of the psychological impact it had on my parents. My Mum still blames herself and wonders what she did wrong (nothing Mum, really, honestly, truly - nothing). She also still worries which of the grandchildren "might get it now". From the start my family were a huge support and encouragement in coming to terms with my diagnosis. By and large though, I was responsible for my own care.

I am now privileged to have two beautiful, inspiring, ferociously clever, teenage daughters. I have watched them grow and blossom. Become amazing people. I know the nagging parental worries connected with anything they ever do. Wanting the very best for them, all the time. I know the emotional wrench of any illness and discomfort they experience. The agony and ecstasy considering of what their future may hold.

I know how hard it is to play at being your own pancreas. I know how much of the time the 'rules' make little sense. How hard to have to be on yourself to keep things in control. How some days the weight of possible complications can feel like an unbearable weight to carry. How darned difficult the day to day can be - even when you have your own body senses giving you little tiny clues about levels all the time.

I cannot imagine what it takes to play pancreas for your child. All of the difficulty. None of the warning-sign sensory feedback. And all the parental concern about being too harsh/not harsh enough/future health and well-being into the bargain.

No doubt. All you guys are complete and utter heroes.

You take my breath away.

My last week of FREEDOM!

Yup, its me again! And this time you might actually want to read what I am saying because it is quite interesting. Then again, maybe its not. The summer holidays have been brilliant this year, and I am making the most of my last week of freedom before I'm back to a new term of homework and hassles. Great. Year seven was an interesting year but not one I would want to do again, and I expect that's what I'll say after year eight. Dad's levels have been much better recently, and although they are often ludicrously high, they are better. My most recent craze has been baking, and thats a bit of a problem if you live with a diabetic. Here is the problem in the form of a sum:

Baking sugary treats = Temptation (+ Diabetic Dad + expectant child = giving in to temptation) = bonkerz sugar-levels

Oops!

Oh well. Any way, pushing that aside, what I was going to talk about before I got side tracked with the baking craze crisis was my best friend's problems linked with mine. Every where I go I appear to be a disaster magnet, or that's what it feels like anyway. My best friend has been struggling through the last six months, and the school have been pretty useless at doing anything to help so it has only been me as support for her as no one else knows, cares or understands fully the situation she is in. This links in with Dad because it means that I am really feeling the pressure at school and not quite being able to relax at home because of Dad. As I get older I feel more and more responsible for making sure Dad is ok and is jabbing at the right time etc. so my troubles certainly don't stop at home. It doesn't help that my body is raging with hormones! I am a teenager in distress! And although the holidays have been a bit of a break, and Dad's getting better and my Best Friend is pulling through, neither of them are completely better and my thin layer of calmness is all going to fall to pieces when school starts again. Honestly, school is a menace to society. Life certainly isn't a breeze.

B

PS found out what diabetes is. It's a pain in the neck. Not literally though.

PPS My new favourite saying is 'success, is failure after failure without loss of enthusiasm'! Brilliant!

Waiting for the storm

Things have been going quite well for me control-wise recently. Monthly averages not too shabby, and particularly over the last few weeks where my meter shows an average of around 6.4mmol/L (115 for US types) with hardly any hypos by my standards, and an SD between 2.0 and 2.7. The Accu-Chek Expert is the first meter I've had that shows 'Standard Deviation'. A mathematical concept slightly beyond my meagre adding-up ability, I gather that it demonstrates the variance in a set of numbers above and below the average. Neatly it also reports it in the same units, which means that you can get an idea of the general 'spread' of your BG results. The smaller the SD the more tightly grouped the results (which is a good thing in terms of BG results fact fans). An average of 6.4 and 2.5 SD would mean that almost all of my 14-day results including the post meal ones lie between 3.9 (70) and 9.9 (178). For me that is smile-inducingly good.

But last Friday was the end of term.

I'd been watching its approach like a ink-black cloud on a summer's day horizon. Hoping that it would not mean what I feared it might. Regular readers will know quite how well I've done with holiday periods recently. In short, not very.

So I'm steeling myself for a slightly wobblier period over the next few weeks. Last summer I seemed to manage pretty well, though I think my control has improved since then. At least when the kids are off school over the summer I have a few more weeks to try to find the new rhythm. I'm hoping it will just be a matter of getting some sort of holiday basal working to account for lack of gym visits, and that the new big meal strategy will continue to work its magic. Maybe.

I'll let you know how I get on.

What if?

I still haven't heard about my 'annual review' (due last April) and the post I have been musing on full of questions about potential treatment changes is still rattling around in my head. In the meantime, and partly because no one has posted anything new here in a good long while, here's a quickie about a conversation we had at the breakfast table yesterday.

Beth asked me what I thought it would be like if I was suddenly cured of diabetes and didn't have it any more. Whether I would find it easy to stop doing all that routine diabetic stuff out of habit.

I don't think there is a diabetic who has not wondered about this, even if only for a moment, after living with diabetes for a while. Behind the question there is almost the feeling of 'Do you think, in a weird and unfathomable way, you would miss it?'

The first thing I said was that I would eat a lot more biscuits. No more having to just grab a handful of nuts if I was peckish for me, oh no. Now I know in theory that I should be able to bolus for a snack and eat pretty much what I want, but the reality is that snacks and doses rarely seem to behave for me. Either 1u is a bit too much or not quite enough, the dose stacks with another, or lags behind whatever I've eaten. Mostly snacks are just too much like hard work, and I just get too grumpy when I get it wrong again to enjoy them. Which is a shame really because I do love a biscuit.

The next thing I said was that I'd start eating properly massive pasta meals again. Jane suggested I'd probably stop going to the gym which I had to agree was fairly likely.

The upshot seems to be that if I got rid of diabetes tomorrow, pretty soon I'd be a lot less healthy than I am at the moment. And I wouldn't be getting all those regular checks to spot potential problems either.

So there you go Mr D, you can hang around for a while longer.

I'd still jump at the chance to get rid though really. Sorry about that.

DBlog Week Day 3 : The trouble with Supermarkets

Today's DBlog Week topic is 'Diabetes Bloopers': Whether you or your loved one are newly diagnosed or have been dealing with diabetes for a while, you probably realize that things can (and will) go wrong. But sometimes the things that go wrong aren’t stressful - instead sometimes they are downright funny! My trouble is that I get so grumpy and down on myself when I mess up that I found it really hard to think of something for today's topic. As with so many things in my life though, Jane came to my rescue. I remembered a post she made almost exactly a year ago. Not sure if it really counts as a blooper, but we still look back on those times and smile:

The Stress Factor
The stress factor. How do you measure that? Any ideas?

We were first aware of the 'stress factor', as new parents, one of the most stressful times in your life I suppose, though at the time you are far too tired to notice. Patterns begin to emerge, hypos with no sensible explanation. There is no way of knowing whether it is stress that caused those hypos, that is just our own theory. I will describe the events that caused us to make this assumption, and you can decide for yourself.

Picture the scene, one exhausted wife, Ellen aged four (talking non stop), Beth aged two (constantly running off, talking to strangers and potty training), one diabetic husband, Saturday morning, Asda. To be honest I could probably leave it there and you would already agree this is not looking good for the stress levels, but I will go on. To let you understand quite how stressful this whole situation was for Mike, I also need to mention that I hate shopping. All shopping. I have a very precise, well planned list to work from to ensure that the deed can be done in the minimum amount of time necessary, and at the time, we were on a pretty tight budget, so any extra purchases had to be applied for and approved by, well, me. No, there is nothing fun and spur of the moment about shopping with me.

Ellen, bless her, did talk incessantly when she was four. It was very sweet, but unbelievably distracting, and after a while you want to say "Shush." Even if you do, when they're four, it doesn't work, so there's not a lot of point. Beth was, shall we say, entertaining, aged two. She ran everywhere in a very determined way, while Ellen walked very slowly, talking. Then there is potty training. When you hear those wonderful words, "I need a wee." you have to drop everything and run to the nearest loo, there is no time for dilly dallying. You have a trolley full of shopping, a four year old with no sense of urgency and time is ticking. An extra pair of hands at a time like that is a godsend, so we went as a family. Within the first five minutes of every shopping trip we attempted, Mike went low. I would be listening to the steady hum of Ellen yabbering away by my side, keeping one eye on Beth's whereabouts and the other eye on the shopping list, and would turn round to realise that Mike had disappeared. We would have to backtrack until we found him, usually standing by a shelf lifting something off and repeatedly replacing it. Then I would open the pack of funsize chocolate bars I'd put in the trolley and start feeding them to Mike, while answering Ellen's questions, saying that yes technically it was stealing but we would be paying for them when we got to the check out, and they would understand because it was a medical emergancy, and no she couldn't have one, Daddy was only eating it because it was his medicine, and even if she wasn't feeling very well it wouldn't be the right sort of medicine to make her better because she wasn't diabetic and yes I did know that for a fact and right about now Beth would say, "I need a wee."

We tried the shopping just enough times to establish this was a repeated pattern, and then gave up. Over the years Mike has recognised a number of activities that seem to have the same effect on his levels. Whatever you may call it, stress, nervous tension, whatever it is, probably causes different reactions in different people depending on how you deal with it. I'd call it an impossible science, but I am seriously chuffed to say that since we've started blogging, and Mike has been chatting to people and researching solutions to some of the problems he was facing, the necessity for me to intervene and sort him out has reduced dramatically. Life is good.

Jane

Summertime Blues

Well not exactly... More 'Easter Anxiety' really, bit I'm a sucker for a snappy title, and we've been enjoying some fabulous sunshine over the last few weeks.

I've been really struggling with control for the past three or perhaps four weeks. It started getting wobbly for a week or so, at the end of which it became clear that the insulin stored in our increasingly dodgy fridge had not kept too well and had lost a lot of oomph. Almost immediately afterwards I had a sore throat/cold combo which (unusually for me) wreaked a little BG havoc. And around the same time the Easter holidays came along. As invididual events they would probably have passed with little comment, but in succession they have been very hard work.

My diabetes likes order. My diabetes likes stability. My diabetes likes things to stay the same day after day after day.

Holidays in particular are often a bit of a challenge. When the kids are at school their routine sets a rhythm in the house. We wake at a set time and are careful not to do too much on a 'school night'. It's easy to get to the gym three times a week. Evening meals slot into the regular pattern.

When holidays come along though the regular rhythm of the house changes. We begin to wake up later. Gym visits fall away. Beautiful sunny evenings beckon. Friends call to ask if we'd like to join them for a stroll around the docks, perhaps stopping for a pint at The Cottage on the waterfront. While we are there perhaps we'll decide to stop for some food (I'm sure to have brought my insulin pen). Friends come to visit, what a lovely evening! Let's have a barbecue! All of these events are lovely. They all form an important part of my enjoyment of life.

But they do not make it easy to maintain good control.

It's times like this when I can feel trapped between enthusiasm for these lovely events, and facing the consequences of the BG guesswork they inevitably involve. It's times like this when diabetes seems most in the way. When life is fast-moving and unpredictable. When meals are grabbed outside of the normal, 'old faithful', predictable choices. The choices that we rely on week by week to make life, grocery shopping and carb counting easier. It's times like this when diabetes feels like a weight grinding you down. When a pleasant afternoon stroll followed by a meal out makes you think, "Oh great, that's going to be tricky to count right". It's times like this when diabetes seems determined to suck the joy out of life.

Of course it is not really that bad. Usually with a little effort, and some decent guesswork it is possible to get into 'holiday mode' and make a reasonable attempt at guessing your way through the holiday maze. To reset basal for the lack of gym visits. To adapt to the new 'normal'.

What this last few weeks have shown me (again) though, is how easy it is for one week of uncertainty to roll into another. And before long it's easy to lose confidence in your ability to make good judgements. Even if you know there are good reasons for a string of errant readings, a few short weeks of chaotic BGs can really take the wind out of your sails.

Next time we have a holiday I'm going to make sure that the fridge it in tip top working order, and I'm NOT going to get ill!

At the risk of sounding like Grandma Walton

I haven't added to this blog since June and wow, what a year we have had. We have all changed. Tomorrow is the anniversary of the birth of the idea of this blog. I can't believe it's only a year, so much has happened.

Ellen has become a teenager, Beth has grabbed the challenge of secondary school between the teeth and is giving it a good shake, stand back the rest of year seven, Mike has learned so much he could write a PHD, and me, well I, apparently, am allowed to be me.

The children grow up and begin to take responsibility for themselves, and at the risk of sounding like Grandma Walton, I am very proud of the people they are growing in to. I don't always find it easy to stand back and let them get on with life without my valuable input; but I try very hard, and hope it will get easier the more I practice (and get told off). I have had a whole lot more time free to work and build up a career since we said goodbye to primary school and all the extra responsibilities that went with it. It will take a while to get back the confident cockiness I had before kids, about the same length of time it takes to earn an income I expect, and I am frustrated at having to be patient (not my strong point) and wait for both. It will happen.

Mike, however, is the icing on my cake. I cannot emphasise enough what an important process Mike has gone through this year, and if you are in Mike's position, if you are around forty years old, have a partner, possibly a family, if you haven't already taken responsibility for your control, then do it now. Mike thought he had. He would have denied it a year ago if I had suggested otherwise, and maybe he would have been right to do so, because his control was pretty good, and certainly no one had suggested that he was doing it all wrong, or even made any particularly useful suggestions as to how he could improve; all I know is that a year ago I was a wife and a carer, and now I am just a wife.

I haven't had to fight Mike to bring him round from a hypo since, maybe last April. This was something I was used to doing at least once a month and sometimes several times a week, for the fifteen years of our marriage; it never felt like I was fighting Mike, I was fighting the diabetes, but it was my fight, Mike wasn't really there, it was a responsibility I had no choice but to take on as part of our marriage. I don't like fighting.

If you are about forty... however much you think it doesn't matter and that you won't go through a mid life crisis, I think you do. I will be a happy pensioner, I'm looking forward to slightly furry cheeks; but at forty, I did take a close look at my life, and what it could look like in another twenty years, and although most of what went through my head made me smile, the fighting made me feel exhausted. I know Mike has to cope with his diabetes all day everyday, and I am happy to take on some of that responsibility for him if I can, but I needed a rest, and the work Mike has done towards understanding and controlling his diabetes, has enabled him to take full responsibility for it for nearly a year now and I know that he feels better for it too.

I think Mike is beginning to tame his diabetes, we all live with it, but we're not scared of it - and most of the time it's pretty well behaved.

Jane

Diabetes is enough to drive you nuts

I came across this description from DiabetesDaily (a largely US-based diabetes community/forum/collection of blogs) today:

Diabetes is a complicated and unforgiving disease. To manage successfully, it requires knowledge, problem-solving skills, and a reservoir of patience. Even then, life happens and throws everything into chaos.

It pretty much sums up my day yesterday.

Diabetes hasn't made me smile in a long time, but some results yesterday were so crazy, so illogical, so utterly ridiculous that I found myself grinning all over my face this morning.

I've been having a pretty good run of results in the last few days - now that the craziness and unpredictability of Christmas eating has passed. I began yesterday morning with a bg of 8.0mmol/l (144 for US readers). A bit on the high side, but not too bad. I had a pretty standard low GI breakfast (two slices of Burgen toast) one that I know usually behaves itself and left my usual 45 minutes between bolus and eating. By mid-morning I had spiked way up to 14mmol/l (252). Took a correction and was nicely back in range with a 7.2 (130) before lunch. I put the spike down to a little liver-dump tomfoolery and left it at that.

For lunch I had two slices of Burgen again, low fat mayo and some leftover chicken. Plus a smallish Clementine to finish. Left 15 minutes between bolus and eating (which is usually enough at lunchtime for the Humalog to get going). Carbs-wise that makes around 35g so I bolused at my usual ratio (4u). 30 minutes later I'd only risen by a tiny 0.2mmol/L (meter inaccuracy notwithstanding). BUT two hours after lunch I checked again and had shot up to 15 (270).

So let's get this straight... I ate completely familiar foods, counted the carbs, took usual doses and in both cases ended up spiking to the sort of level I'd usually like to avoid.

At this point, our evening meal looked like a scary prospect. The girls were given horse-riding lessons from grandparents at Christmas so they were going to be back late and hungry. We'd decided to pick up food from the chip shop to make things easy. So this meal is massively high in carbs AND high in fat AND on a day when the usual rules seem not to apply. Hmmmm tricky! But what could I do except use my usual (and often fairly successful) approach of a stab-in-the-dark at the carbs and a 60:40 split dose 60% before eating and the rest an hour or so later.

Pie and chips. Carbs were estimated at 140g (I know... I know...). 10u up front with a pre-meal reading of 4.3 (78). An hour later I was up to 7.5 (135) and took the second half of the split - 3u to allow for being slightly close to the edge before the meal. At three hours after eating I had dropped back to 5.2 (94) still had a fair amount of insulin on board so had a couple of leftover Christmas chocolates to play safe. Went to bed at 11pm at 5.9 (106) with a reported 1.5u of active insulin according to Colin (my Accu-Chek Expert). I figured that at least some of the evening meal was still chugging through my system, delayed by the amount of fat involved so left it at that, trusting the chips to see me through the night.

I woke at 5am. This is very unusual for me, and I immediately assumed that my BG must have dipped into hypo during the night. A blood test revealed 5.7 (103) so I just went back to sleep.

Woke this morning to a reading before breakfast of 5.5mmol/L (99) and it was then I started grinning. Both my low fat, lowish carb, low GI meals in the day had ended badly, but a pie & chips blowout followed by chocolate and a glass or two of wine had resulted in spectacularly good levels. This is the mystery of diabetes. This is why it drives us crazy.

Now I'm not suggesting we all eat pie & chips constantly from now on, but after yesterday it is quite tempting :)

Patterns, pitfalls and playing the game

Sometimes diabetes seems understandable, logical, reliable almost. But not today.

The times I find diabetes hardest to deal with are the times when it just doesn't seem to be playing the game. When it takes it into its head to change the rules every day that week. When you never know what you are supposed to be doing because what happened yesterday isn't happening today.

I'm fortunate in that I don't seem to get ill very often, but I'm just coming out of a cough/cold thing which, unusually for me has pushed my blood glucose levels right up. Suddenly my total daily dose of insulin rose by about 50%. I kept things in check, more or less, for the few days it lasted - but knew that when things began to return to normal I'd have to back-off the extra insulin sharpish or I'd end up running low most of the day. That day, it seems was yesterday. I felt hypo much of the morning. I ate lots of extra carbs. Today I tried normal doses and went to the gym. Felt a little low mid-morning and had a couple of fruit pastilles. At lunchtime I was 12.0 (216). WHAT?! But I've not eaten anything like the extra I did yesterday (when I continued to putter along on the edge of hypoland despite all the sweets and biscuits I scoffed) AND I've only had half my standard 'gym day' extra carbs AND I tested after the gym and was fine AND AND AND...

So I stomped around and got all cross. And Jane had to bear the brunt of it. And I'm sorry.

These are the times when diabetes gets me down. These are the times when I know I am a nightmare to be around. These are the times I wish I could control myself. These are the times when I am most grateful for the love and support of my family. Especially Jane. I could not do this without you.

M x

Going on holiday

We've just returned from a great two weeks away. This year we gave the kids the choice of three different holidays. Options included a fortnight by a beach, a short break in Switzerland, but the winner was a combo of a week in Ironbridge in Shropshire, followed by a week in the Lake District.

Holidays are always a bit of a juggling act diabetes-wise. You are completely out of routine, you eat out far more often, wine flows, ice creams and treats beckon.

Thankfully Lantus continued to behave itself back in its morning slot. Staying in the UK meant there were no pesky time-zone issues, though I did have to gradually shift my injection time to suit our more relaxed holiday breakfast timing. Thankfully my first blood test of the day was pretty much spot-on most days. I even managed a little experimentation with post-breakfast spikes. I've settled on a new slightly higher insulin:carb ratio taken 20-30 minutes before breakfast, depending on my fbg (pre-breakfast) level. An hour or two after breakfast was mostly in the 8-10mmol/l region which compared to some recent disastrous readings felt pretty good.

The other thing about holidays is all that great wandering about you can do. Ironbridge is absolutely packed with things to look around, and it's almost impossible to visit the Lakes without doing some kind of walking about. The benefit of this, of course, is that you can sneak an occasional ice cream or cake to keep your levels up, without having to worry about injecting. Either that or I just gradually worked my way through a pocketed packet of Fruit Pastilles during the day. At Blist's Hill (the Victorian Town museum close to Ironbridge) I even managed to win a Sherbert Fountain by knocking it off a shelf with a pop-gun at the Victorian funfair. Initially I was a bit disappointed that these now come in a plastic tube, rather than wrapped in yellow paper, but the benefit was it lasted in my pocket until a wander around Ambleside and Skelwith Force.

I'd forgotten all about Sherbert Fountains... Hypo prevention has rarely been so much fun. It was like being 8 again.

Dishing Up

I've been trying to concentrate much more on Mike's needs, when it comes to meal times, over the last few months. We are lucky enough as a family, to be able to all sit down together for both breakfast and tea. When the children were younger, sitting together did not mean eating the same food, Mike and I enjoy spicy food, and our kids (like most kids) like to separate out ingredients and have both gone through a variety of picky phases, which drives me mad. Friends round to tea, adds another interesting dimension to what I can or can't present at meal times, forward planning is impossible when you may get a vegetarian home on a spaghetti bolognaise day. Even so, I've always enjoyed cooking for the family because it feels like such a worthwhile thing to do well, much more essential than cleaning (which I only do when we're about to have visitors); and it's a good job I enjoy it because when the kids were small I would end up cooking all afternoon to be able to cater for everyone's needs.

The hardest thing is dividing carbohydrate in a measured way. We all eat a similar quantity of food now, but when the kids ate less, dividing the pasta to ensure that Mike had approximately 60grams of carbs for his meal was tricky. In the baby/toddler phase, I just cooked two completely separate meals, one for us and one for the kids. When they were a little older, I cooked simple food, enough for three portions, and divided one of those portions between the kids, then I'd cook an extra veg dish which I could spice up to make the meal more interesting for me and Mike. The next stage got harder, and the measuring less accurate, and with appetites varying, we would often find ourselves finishing the things off which are hard to resist, (like fish fingers) but it can play havoc with your levels. It is a relief now to know that the kids have good appetites and I can just divide everything equally between the four of us.

It does mean that we all have a calorie controlled diet, as a neccessity. I'm sure the kids aren't really aware of that yet. It can make for a rather odd looking meal. The portion of pasta we allow ourselves looks pitiful, but I add a lot of veg to everything to boost the quantity of stuff on the plate. New potatoes present a whole other problem, delicious though they are, to ensure Mike has enough carbs he has to pretty much fill his plate with them, though Mike will allow for that and use less insulin, he doesn't have to have exactly 60grams of carbohydrate at every meal of course, but it's the way we've always done it and it seems to work. You get used to all the measurements, 3oograms of rice is enough for the four of us, 400grams of pasta etc. it makes life easy. I've managed to get back to buying only wholewheat pasta, and there have been no complaints, and I have gone back to trying to vary the type of carbs much more, which was something I read in a Balance magazine years ago. It makes sense to me, if only because too much of anything can be bad for you.

I am aware that I have spent quite alot of the past thirteen years preparing and cooking food, and that not everyone has the time available to do that, (or would want to). To me it has been a luxury I'm grateful to have been afforded, though it is extremely nice when someone else offers to cook for a change. Maybe one of these days I'll be all cooked out and hopefully I'll be able to hand the baton to someone else and then and only then will I offer to do the washing up.

Jane