Posted by on Friday, 19 May 2017

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

Posted by on Thursday, 18 May 2017

Diabetes, emotions, resilience and mental health - DBlog Week Day 4


Today's Diabetes Blog Week topic recognises that living with type 1 diabetes is not just about looking after our physical health,  "What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?". Read how others have responded to this topic by visiting the Day 4 link list.

Today is also described as 'Throwback Thursday' in that this topic was also covered a few years ago, in 2014, which coincidentally, was the last time I took part in DBlog Week. You can read my previous post here, and to be honest I think I feel pretty much the same today.

It's important for us to recognise that living with a long term condition, particularly one as fickle, irritating and contrary as Type 1 Diabetes makes each of us more vulnerable to depression.

It is OK not to be OK. And it is very much OK to talk to your clinic, Doctor or care team about it. You need to do that. It won't be easy. It will take courage, but if you are struggling emotionally you deserve to be supported and to receive the help you need.

Many of us are familiar with the ebb and flow of emotions from gently pottering along with diabetes just being part of the background noise of our lives and with a general sense of well-being set against feelings of despair, hopelessness and that diabetes is a weight that simple cannot be carried. Many of us too, will know that the dividing line between those two states is sometimes precariously fragile. Your mental health is just that, health. We need to look after ourselves as whole people, and that means looking after our minds, and paying attention to them, just as much as we put effort in to blood glucose management, eating well and exercising.

I think part of the challenge for healthcare professionals is that it is much easier for them to focus on the numbers. The hard facts that can suggest how 'well' a person with diabetes is managing their condition. From the outset we begin to be surrounded by a cloud of numbers, targets and measurements. Each supposedly able to predict our long-term future health. And it is almost impossible in that context not to see those checks and data as some sort of reflection on whether you are 'succeeding' or 'failing' as a person. Whether you are 'trying hard enough', 'doing well enough'.

It's a toxic environment.

And much has been written about the language we use in relation to these pieces of information. Test. Target. Control. Compliance. Adherence. So many opportunities for self-judgement.

And it's important to remember that fluctuating glucose levels have a profound effect on the brain and on the emotions. So at the very point we see those frustrating numbers, where we know we did everything we knew to try to avoid them, our minds are less able to cope with the situation.

If we are not careful we put ourselves in an impossible position where every day is filled with opportunities for perceived 'failure'. Where we see our best efforts as never 'enough'. Where we feel that we are failing before we begin.

But this is absolutely not the case.

You need to recognise how well you are doing. How resilient you are. How you are able to live your life and simultaneously perform the function of a major bodily organ every single day.

Some times it works well and you are happy with how your BG behaved, other days... not so much. But you battle on, you brilliant, tenacious, feisty, beautiful piece of humanity. And tomorrow you will do it all again.

And make no mistake, the juggling of all those complicated factors that go into every single one of your self-management decisions would fry the most genius of minds. And the out of range results you see are so often not even down to you at all. Well, OK, that one was. But hey, we knew that before we did it eh? And life is for living, right? But for the most part, if managing type 1 was simply a matter of eating the right foods and taking the right doses and everything always worked out all the time and never changed we would have had this licked a long, long time ago.

The variables in your life will overlap and interact. Some cancelling each other out, others magnifying. And your diabetes itself will not have the good grace to sit still and behave predictably.

Perfection really is not possible. You are doing your best - even on the days when you can barely manage to do anything. You can do that. You can keep yourself going. And tomorrow you can go again.

Never neglect your state of mind. Get the right professional support if you need it, and reach out to people in the #doc to share the burden. Commit to being careful with your own inner voice and taking time to affirm yourself and acknowledge that despite the difficulties type 1 diabetes brings, you are winning small victories every day. You are able to achieve more than you can imagine.

“To achieve greatness, start where you are, use what you have, do what you can.”
Arthur Ashe

Posted by on Wednesday, 17 May 2017

The Blame Game - DBlog Week Day 3

Today's topic in Karen at Bitter-Sweet's fabulous festival of Diabetes Blogging is entitled 'The Blame Game' - Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another. And sometimes the way the doctor talks to you can leave you feeling like you’re at fault. Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger... For other posts on this topic, browse the day 3 link list.


While I have been on the receiving end of a handful of less than ideal conversations with clinicians and healthcare professionals over the years, those were not the ones that first came to mind when I read this topic prompt.

There is a person who seems to jump on my back and berate me for lapses in judgement and effort far, far more often than any Dr or nurse ever has. Someone who feeds me with visions of horrendous complications that might be in store. Who raises a cynical eyebrow over my dose estimation of a meal, or timing of a bolus. Who reminds me of eveything I missed, every emerging pattern that I didn't spot until reaching for the hypo treatment. Who rolls their eyes over some of my food choices, making muttering noises about it "really not being a brilliant idea". Someone who is all too quick to tell me that my best isn't good enough, and that I may as well just give up.

And the worst thing about them? The very worst thing is their timing.

They choose the times when I am feeling at my most vulnerable. My weakest. Where my diabetes is behaving erratically, and I am struggling more than usual to aim for the tiny target range that we aspire to. That narrow way that is the best hope we have to protect against long-term complications. They choose the periods when either repeated high or low blood glucose have left me feeling drained, or scared, or angry and irritable. Uncertain as to what to do next, which of the many factors might need tweaking. And it is at those moments - when I could really do with some support, that they choose to get on my case.

I've tried to speak to them about it. We have had long conversations and have agreed that their behaviour really isn't kind and isn't helpful. I felt like they really genuinely were going to try. But all too soon they fell back into their old habits. Next time... next time they promise they will try harder. But will they? Can they?

If they weren't so close to me I would have left them behind. If they weren't so important to me I would have cut ties. Moved on. Freed myself from the negativity that comes when I can least cope with it.

But it's difficult. It's difficult when they are hurting too. When they are struggling.

It's difficult when they are, in fact, me.

So we embrace one another again. We look ourselves in the eye. And commit to being kinder the next time. To support each other, no matter what. To love. To listen. To understand that we are both doing what we can. To know that we will make it through together.

Posted by on Tuesday, 16 May 2017

The Cost of a Chronic Illness - DBlog Week Day 2


Today is Day 2 of 2017's Diabetes Blog Week and today's topic is entitled The Cost of a Chronic Illness. For a wider perspective on this topic head over to the Day 2 link list.

I have read a lot of anguish, rage and despair from people living with diabetes in the US in recent months as insulin manufacturers increase prices again and again. The costs involved are simply eye watering - the latest 8% price hike by Eli Lilly earlier this month puts a single vial of Humalog at approximately £213. That's a 290% price increase over the last decade. I mean... really?!?.

Having read some powerful early posts from Aussie bloggers on today's topic (here, here and here) I know that diabetes can be an expensive business 'down under' too.

Not to mention the many, many parts of the world where access to insulin is even more difficult and costly. Where type 1 diabetes is still potentially a death sentence, rather than an irritating, but generally relatively manageable condition. I am so pleased that charities such as T1 International work so tirelessly to support people living with type 1 diabetes anywhere in the world where insulin and test strips are unaffordable, unavailable, or both.

I feel extraordinarily lucky to be living in the UK, where I can receive world-leading diabetes care free at the point of delivery.

Today's topic drew this famous National Health Service (NHS) quotation to mind:
“Illness is neither an indulgence for which people have to pay, nor an offence for which they should be penalised, but a misfortune, the cost of which should be shared by the community”

Aneurin Bevan - founder of the NHS

What an amazing sentiment that is. How far removed from so much of what we see going on in the world today.

And it makes me realise why we in the UK are so proud of the NHS, and why we fight so hard to protect it, with all its frustrations, foibles and oddities.

There are a lot of people who are profoundly worried about the NHS in the UK at the moment. Funding is a real challenge, and has been squeezed and reduced in real terms for years. With an ageing population often with more and complex combinations of illness providing ever-increasing demand. Our current government (who look likely to be elected to a further term in a few weeks) seem perilously likely to be the sort of people who might change the NHS out of all recognition at any moment - breaking it up, selling parts of it off, introducing co-payment and/or insurance-based models under the guise of 'saving it'.

4 out of 5
My experience in helping to put together the NICE Guidelines for adults with type 1 diabetes in the UK gives me much food for thought here too. But unfortunately, not much in the way of answers of brilliant ideas. In the diabetes online community there is often frustration vented about the difficulties in accessing the latest shiny technology - which begins to sound like petulant toddler foot-stamping in comparison to the challenges faces in other places in the world. I am one of a relatively small number of people in the UK who self-fund continuous glucose sensors. I only manage to cover around half of the year, but it helps me enormously. My insulin pump, cannulas, test strips, insulin, appointments, blood tests, eye examinations, toe tickles and all the rest are fully funded by the NHS, either because they just are (imagine that!) or because I meet the NICE criteria which has demonstrated that they will be 'cost effective' for me. They will provide good use of NHS funds. The numbers have been crunched, the research examined, and the right ticks are in the right boxes.

This makes me feel simultaneously extremely lucky and, if I am honest, really quite guilty when I hear about the monetary investment you, dear reader, may be making somewhere else in the world. I know how much I wince when I buy a couple of sensors.

But these ongoing every-day 'maintenance' costs of living with Type 1 to the NHS are only the tip of the iceberg. A mere drop in the storming, swirling financial ocean.

One uncomfortable fact is that of the entire budget spent on diabetes in the UK fully 80% of it goes on the other stuff that we'd rather not think about. The costs of medication, appointments, pump and consumables only make up a trifling £1 out of every £5 the NHS spends on diabetes. The really, REALLY expensive stuff, is when diabetes nasties come knocking at the door. When people develop problems with eyes, nerves, kidneys, feet or heart. Admissions, surgery, follow-up care. And if the financial cost of those things were not bad enough - they also come with a huge human cost too.

And modern medicine is getting so good at treating type 1 diabetes these days that our life expectancy is closing on people with functioning pancreases. Giving us all the more time to potentially develop the long-term complications that cost so much.

So it is down to us, who live with long term condition like diabetes in the UK to honour the investment the NHS so freely makes in us. To do everything in our power to live well with diabetes and avoid complications if we possibly can. To take up the offered (FREE!) education courses to improve our self-management. To attend our annual screening appointments which cost us nothing but a few minutes of our time. To learn as much as we can, and to keep chipping away at our results to try to improve our numbers where we can. To aim to avoid complications if it is within our power to do so.

To live long, healthy lives alongside type 1 diabetes.

Posted by on Monday, 15 May 2017

Diabetes and the Unexpected - DBlog Week Day 1

This week sees the eighth Diabetes Blog Week - an amazing festival of healthcare blogging organised by the wonderful Karen of Bittersweet Diabetes. Wow! Eight years - that's quite an achievement. I've taken part a few times before, and it is always an inspiring week seeing so many writers coordinated to post on the same topic each day during the week.

Today's topic is 'Diabetes and the Unexpected, so without further ado, here are my top three:

1. Overnight unexpectedness
You know the ones... You've not run a marathon after lights out. You've scrupulously counted your evening meal. You've not had a skinful of booze. Your doses and basal are properly tweaked. Your Insulin on Board is right down at zero. Everything was fine last night. And the night before. But not tonight... Tonight is an unexpectedly-needing-far-far-less-insulin-than-normal night. Whatever 'normal' happens to mean for you right now. But you know what? It's not you. Not this time.

Closed loop studies have shown a big variation in overnight insulin requirement. So keep trying, keep dodging all the lows you can, with all the preventative strategies for lows you know (especially the overnight ones)... But this one? This one is just down to your diabetes being annoying. Don't beat yourself up about it.

2. Unexpectedly nailing it
Mostly diabetes just potters along in the background for most of us. Like irritating lift music. Frustrating, relentless, occasionally intrusive, but for the most part... just there. Absorbed into the everyday rhythm of things. Sometimes it barges right into centre stage of course. Really causing havoc and dominating everything, emotionally and physically. But not for the most part. Not in my experience. So I always find it rather unexpected when this neverending gently annoying part of my life causes me a genuine sudden burst of happiness. Like a golfer sinking a hole in one. A runner smashing a PB after injury or in difficult conditions. A fan watching their team win the cup, or league, or the local derby.

So the next time you take on your food nemesis* SWAG bolus and absolutely nail it give yourself a moment. Celebrate your amazing skill, intuition and ninja-bolusing skills. Look around and enjoy the view from up there. Store it up and remember it the next time your diabetes throws a curve ball with something you have eaten without problems a hundred times before. Smile a big smile and bask in the glory of your magnificence.

* Mine is probably buffet party food, though evenings at an all-you-can-eat restaurant run that a close second. Yours might be pizza, or pasta. To be honest I gave up on breakfast cereal a long time ago, or that would be right up there.

3. Unexpected connections
I was diagnosed with type 1 over 25 years ago. Everything about it was unexpected at the time. I remember knowing absolutely nothing about what diabetes was, and how it would change so many things about my life. Wondering whether I could eat honey, instead of sugar, because... well... honey was natural right? But what I could never have anticipated - the most unexpected thing of all was... well... not to put too fine a point on it - you lot.

The connections that it would bring. The people I would meet in real life and feel an instant bond with. The sense of shared struggle. The feeling of a support network that stretches, quite literally, all around the world. The way it would help me to empathise with others living with long term conditions. The way these connections would help me to grow as a person. To perhaps become more than I would have been without it. Don't get me wrong, I'm not one of those "I love having diabetes, it has been the making of me" people. But if there is a silver lining to living with this infuriating, illogical, relentless, draining, and occasionally debilitating condition, then you guys are certainly it.

And Diabetes Blog Week is a brilliant reminder of that.

Thanks for reading!

There are lots more posts on this on the Diabetes Blog Week link list.