The 'busy bar staff' tip - DBlog Week Day 5

Today's topic for Diabetes Blog Week is all about hint and tips - Share the (non-medical) tricks that help you in the day-to-day management of diabetes.  Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only! (Thank you Rachel of Probably Rachel and Kelley of Below Seven for this topic suggestion.)

Busy bar staff. Bustling restaurants. "Diet coke please" I shout over the ruckus at the bar and hope that the person taking the order heard properly and is being careful to put their thumb on the right button on the nozzle. But then, some time later a BG test reveals that it was the regular, full-on, carb-laden version instead. Never a happy moment. And the uncertainty of it *always* crosses my mind when I order a diet drink in a bar or restaurant.

Many people seem able to taste the difference between the two, but I've never been able to be sure. I knew for years that you can use urine glucose testing strips to check, but I never quite got around to going and getting any. But the solution is actually far simpler than that. In the unlikely event that anyone reading hasn't had this idea themselves already, here's a tip I picked up a year or two ago from a forum which I have used ever since:

Whenever I get my diet drink order, I just dip my finger in the top of my drink. Within a few moments the liquid will begin to dry. A full-sugar drink will make your fingers go sticky whereas a diet drink won't (the gaps between my fingers seem particularly good at sensing the stickiness).

Simple, effective and no equipment needed.

When things are going wrong - DBlog Week Day 4

Diabetes Blog Week Day 4 Mantras and More. Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day. Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost? Maybe we've done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)

Living with diabetes can be a very lonely struggle at times. When it's behaving and doing more or less as it's told it's not too bad. But when you are struggling to make sense of it from day to day and when everything you try just results in more chaos and apparent BG randomness it can be very difficult to catch your breath. Erratic blood glucose levels are physically and emotionally draining. Often compounded by a little nagging voice in your head whispering about the possible damage you might be doing, and what troubles these levels may be storing up for the future.

It's not easy to get through those days, but I think for me it's a combination of grim determination, digging deep and just carrying on carrying on.

As for mantras and words of wisdom? I'm afraid I can't offer any of my own. So instead, unashamedly, I am going to cheat. Here are some from other people:

"It's not about how hard you hit. It is about how hard you can get hit and keep moving forward" (Rocky Balboa via Grumpy Pumper).

"Yes, you can." (sorry Mr Obama).

"You play the hand you're dealt, and you play it to the best of your ability. The rest is irrelevant." (or some other variation of it).

And of course... The very first thing that popped into my head when I read the topic. Always remember:

"You can do this" (Thanks Kim - youcandothisproject.com)

Ups and Downs - DBlog Week Day 3

It's day 3 of Diabetes Blog Week 2014 (Thanks Karen!). May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

I'm a bit late posting on today's topic which has given me a chance to browse around a few posts on the link list. One of the strengths of the Diabetes Online Community is the sense of shared experience. Shared struggle. I have read some heartbreaking posts today, but I've also read many that have just made me think, "Yup! Me too." What might have been a difficult topic has actually been hugely encouraging.

The emotional effort of living with a long term condition cannot be underestimated. It is really great to see its importance increasingly recognised in recent years both by clinics, HCPs and by patients themselves.

Like many people I am mostly fine most of the time. But I think everyone who lives with diabetes for any length of time will be familiar with those days when it just seems too much to carry. The weight of it unbearable. The prospect of managing another day with it almost impossible.

So what drags me down? What is my particular trigger?

Well you don't have to read many posts or tweets of mine before I'm moaning about chasing the moving goalposts.

Here's an example. Three consecutive Wednesdays. Each start with a breakfast of 30-35g carbs (2 slices of the same brand of bread, toasted). Then a trip to the gym - 25 minute medium pace run and 10 minutes light weights/core. Lunch is two more slices of the same bread as a sandwich and a medium-sized apple. Evening meal will contain around 50-60g carbs and is likely to be one of 5-10 tried and tested family faves. There is just enough variation to keep me sane, but a clear attempt to reduce the huge number of variables involved so that doses/approaches that have been carefully tweaked *should* give reasonable results. Should being the operative word. Here's what happened:

The eagle-eyed among you may have spotted that the second Wednesday didn't quite go to plan. The first was not too shabby at all, while the third was just bewilderingly level.

And yet did pretty much the same things, in the same way.

I put just the same amount of effort in. I played my part. But for no discernible reason my basal requirement altered dramatically around Wednesday #2. So then it's back to basal tweaking for the next 5-6 days (often much longer) with all the 'out of range' results and uncertainty that entails until yesterday when it began to fall back into place. 

Tomorrow? Who knows!

I've been chasing these changes back and forth for months. For years actually. Some times I get some stability for several weeks on the trot. But not often. And I recognise that I am incredibly lucky to have it so good.

But this is the grind for me. The thing that can wear me down. The actual doing of the routine is not so bad. Some routine, occasional special occasions/treats/holidays, then back to routine. That always seems doable.

But putting in all the effort and getting a BG roller coaster back seems less than fair. Not exactly a reward for any self-control I may have mustered. And every time the goalposts chase off into the distance it's more effort, more tweaking, more testing. And all the while, more out of range results and the spectre of diabetes-related nasties prowling around the edges of my consciousness.

But... And it's a BIG but...

Every time I rant about the frustration of having to fix something I haven't broken - EVERY time - someone will be there, day or night, from one corner of the world or another, to offer support, sympathy, smiles.

This is the beauty of the DOC. We are stronger together.

Poem: Helpful comments - DBlog Week Day 2

Today's DBlog Week challenge is to write a post as a poem. Here goes...

Helpful comments

Was it because
You had too many cakes?
Or ate too many sweets,
Is that what it takes?

My Grandmother had it
And she lost her eyes.
My Uncle's feet fell off
To everyone's surprise.

Can you eat that?
Can you eat that?
Can you really eat that?
Can you eat that?
Should you eat that?
You shouldn't eat that!

Injecting yourself?
I don't think I could
I'd rather die...
(Well actually, you would!)

Increased risk
Of heart attack, stroke,
Kidney failure, blindness,
Body broke.

What was this high from?
And why there that low?
You simply must
Try harder, you know.

Can you eat that?
Can you eat that?
Can you really eat that?
Can you eat that?
Should you eat that?
You shouldn't eat that!

Thanks for your help folks,
But can I suggest
You think before speaking
We're trying our best.

Change the world - DBlog Week Day 1

Thanks to Karen Graffeo this week is the 5th annual Diabetes Blog Week.

Today's topic is 'Change the world'.
Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

Hmmmm... Well I'd usually bang on about the power of peer support and the DOC, but since my last post was about that very thing I've decided to take this topic as more of a fantasy 'what if anything were possible' type thing.

So if it's not a cure and diabetes is continuing and if I could change anything what would I choose..?

I wish there was more honesty and fairness. Specifically when it comes to medical research and product development.

Perhaps I have got this wrong. Maybe I'm just being too jaded and cynical. I am absolutely sure that most people who undertake research are paragons of honesty and integrity, but I'm afraid I do worry about the impartiality of some research studies into new treatments which are (inevitably) funded by the companies who have invested thousands in research and development and now need to turn a profit. Small, commonplace things like studies having a 'run-in' period where carefully screened participants get to try the therapy before the trial actually starts so that people who don't get on with it don't take part. Hey-presto, when the trial data are collected - almost no drop-outs and hardly any side effects reported. Results being extrapolated and amplified with 'mathematically modelled' outcomes. If x changes to y then the model suggests that umpty bazillion people will be 50% better off (rather than simply counting the number of events that did or didn't actually happen in the sample population). Data meta-analysed to within an inch of its life and suddenly the conclusions reached 12 months ago that there was not very much benefit, get republished with a handful of results added to suddenly show something startlingly different.

The problem for me is that it actually takes quite a lot of effort to go into the detail. Part of my work with NICE as a patient representative on the Type 1 Adults Guideline Development Group has involved reading and reviewing many more research papers and results than I would ever have normally. It soon became clear to me that behind the confident assertions of the 'conclusions' by the authors of some papers there's a sort of hollow flimsiness to the whole thing. And in these days of 'evidence based' medicine this gives me more than a little uneasiness. Some major decisions are taken about what is or isn't an appropriate way of treating people are taken on the basis of medical research results some of which - to my inexperienced eye - looks rather less than rock solid. But who does that? NICE are pretty good at trying to filter though the mire most of the time, but so many decision makers, politicians and journalists seem only interested in the headline.

Now I'm not quite in the 'the whole thing is a complete Big Pharma Conspiracy' camp, but I do wish we lived in a world where I didn't have to worry about the motivations and financial background to all this. Where I didn't have to look for the agenda behind the research. Where new treatments and therapies and approaches were developed, adopted or dropped on the basis of what actually worked for people rather than what made the most money for the companies involved.

I realise that I am extaordinarily lucky to live in a country with an organisation as amazing as the NHS to underpin my healthcare, but there is only so much money to go around and I would love it if every single penny of that was being spent in the very best ways on the most effective treatments, interventions and (shock horror!) non-drug based methods like, er, you know, type 2s doing rather better when they eat fewer carbs.

Oh... and if I ruled the world Bakewell Tart would have absolutely no effect on blood glucose levels too.

DBlog Week Day 5 : Setting the record straight

Today's DBlog Week topic asks "What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?". Fortunately Karen seems to know how much we love the sound of our own typing: "Have more than one thing you wish people knew? Go ahead and tell us everything.". Well, since you asked...

Journalists
There is more than one type of diabetes. Actually there are *lots* of different sorts, and some of the 'types' are really just umbrella terms for a multitude of different, but fairly closely related conditions. This next bit probably bears saying slowly, because it seems that you have difficulty grasping it: Diabetes. Is. Not. Caused. By. Eating. Sweets. There, that wasn't so hard was it? In general terms you probably only really need to think about type 1 (around 10% of the diabetic population) which is an auto-immune condition where the body destroys it's own insulin-producing beta cells. Nobody knows what causes type 1 diabetes to develop. No-one. On the other hand there is type 2 diabetes, where the proper metabolism of carbohydrate begins to fail. Type 2 Diabetes makes up nearly 90% of the diabetic population and last time I looked *nobody really knows* what triggers its development either. Nobody. There does seem to be a genetic link (so you are more likely to develop it if a close family member already has it). It is also more common in certain ethnic groups. Additionally people who carry more weight seem to be more at risk of developing type 2. Let me say that again - AT RISK. This is not the same as cause. Perhaps 15% of people diagnosed with type 2 are normal weight or under weight at diagnosis. And bear in mind that perhaps 90% of the obese and overweight population do NOT have diabetes. Let's go over what we learned earlier - eating sweets does *not* cause diabetes. If a person is overweight it would be wise for them to consult their doctor to assess their risk of diabetes. The extra weight may be an indication that their metabolism is struggling to efficiently metabolise carbs - but please, please, please stop repeating that diabetes is a 'lifestyle' disease 'caused' by eating sweets.

Scriptwriters
This is getting silly. Please. For the love glittery cupcake-eating unicorns, will you PLEASE just have a two minute conversation with a person with diabetes the next time you have a Brilliant Idea about using insulin-dependent diabetes as a way to spice up your flagging movie/action adventure/medical drama. It really is Not. That. Hard! Time after time you get it wrong at the most basic level. The problem is you get things so messed up so often that 'normal' people will be beginning to think you have it right. You know there's this time-critical thing (a hypo) where the person can be minutes from oblivion. And you know that diabetes has to do with insulin, which is hard to come by on a jet plane struggling to make a landing, while Denzel Washington and Bruce Willis swap oily vests and wisecracks as they wrestle the deranged and inexplicably English-accented baddie into submission. It all looks ideal... How will our rosy-cheeked cherubic child make it through as she plunges into a hypo when the only insulin on board was smashed under the nasty Brit's suspiciously shiny shoe. STOP! Insulin will KILL her. If she is mid-hypo what she need is a little something from the kitchen. Hypo is *low* blood glucose. All she needs is a swig or two of Coke. We are very sorry that this is rather inconvenient in dramatic terms, but there you are. If she misses an insulin shot? Well unless she's on a pump (let's not go there right now) the chances are she has got *hours* - especially if she doesn't stuff her face. She might get a bit grumpy. Not very Hollywood, but I'm afraid it's all you've got.

GPs and NHS beancounters
There are all sorts of people. Tall ones, short ones, loud ones, quiet ones. Some are really clever, others not so much. A mixture of all of these people will be unfortunate enough to develop type 2 diabetes. Now given this bewildering variety, don't you think it is perhaps likely that one identical approach will not work perfectly for everyone. Diabetes, perhaps more than any other chronic condition will be affected by the behaviours of the patient. Some people will be happy to take your advice on what foods they should be eating to keep their blood glucose levels under control. You will give them advice based on your knowledge and understanding. What you believe happens 'on average'. The problem is, we are not talking about 'average'. We are talking about individuals. When a patient comes to you with a desire to test their blood glucose levels using an effective framework, and to use those test results to establish a varied and nutritious diet which does not spike their BGs please consider their future health. 80% of the NHS budget for diabetes care goes on treating preventable complications. Once a patient has spent a few months building up a picture of BG friendly foods, testing can drop back to a much lower maintenance level. There is no 'one size fits all'. Don't mistakenly jump to a conclusion of 'non-compliance'. If you are advocating a diet with lots of 'healthy' carbs for t2 patients, their problem might be *too much* compliance. The only way for a person to discover what foods, and quantities they can eat (and at what time of day) is with a meter. Not everyone will want to put the work in, but don't just automatically deny the means for people to control their diabetes.

80% of costs on preventable complications are absolutely appalling stats. Perhaps the time has come, at last, to rethink the high-carb/no-test approach if these are the results you are getting. I'll put it more simply for the hard of thinking: Give. Type. Two. Diabetics. Test. Strips. And. A. Copy. Of. Jennifers. Advice. Then. Support. Them. In. Keeping. Their. Diet. Balanced. And. BG. Friendly.

DBlog Week Day 4 : Things we'd like to see

Today's DBlog Week topic is all about fantasy future D gadgetry. If we could have any dream diabetes device, what would it be?

I had a crazy notion to write a post about a futuristic BG meter that was actually accurate to within 5% of a lab reading 100% of the time. Or maybe a CGM that was actually affordable for anyone that wanted one. I even considered writing about a pump that was constructed with such inexplicable ingenuity that it *didn't* have to bleep and warble about a temporary basal rate Every. Single. Hour. Which might be useful for anyone that ever needed to set a TBR to run overnight and values their sleep. But no. Let's at least keep this within the bounds of the possible.

I'm not even going to write about the cure. That's only a mere ten years away after all (well it always has been, ever since I was diagnosed in 1991, so I don't see why we should start changing that now).

What I would like to see (and I suspect some white-coated boffin in a gleaming laboratory is already working on this very thing) is an intelligent insulin. I can remember having conversations with people when I was first diagnosed who would say things like, 'Ooooh, I could never inject myself!'.

Like that was the hard part.

Let's face it after the first three or four hundred - the injections are a doddle. All the other stuff. The adjustment. The guessing games. The carb counting. The unexpected 'helping hand' given by the liver. The moving goalposts. The messy, confusing, illogical variability of it all. That's what I want rid of. Heck, I don't even mind carrying on with a fingerstick BG test every so often just to make sure things are toddling along OK.

So in my dream-world of the future, I just need to inject a whack of IntelligentInsulin^{TM pending} every day (it could be every few days, but I don't want to push it).

Once absorbed the IntelligentInsulin just sloshes around in my bloodstream bound-up and inert. Ready and waiting. I chance upon a sweet and sickly cupcake. As soon as I start eating it, and my BG begins to rise the IntelligentInsulin senses the change in my levels and immediately begins to work (none of this '4 hour profile' nonsense). Once the carbs are dealt with, IntelligentInsulin stops and waits again. Very tiny amounts of it working every so often to counter glucose released from my liver keeping my levels rock steady. If my BG falls below 4.5 (81), IntelligentInsulin stops working entirely and allows my liver a little room to top things up into a safe zone. When I eat a massive fat-laden uber-carb pizza-with-extra-dough-balls-and-garlic-bread IntelligentInsulin effortlessly matches the stop-start absorption of the food. Even when I have an entire cream-filled Pavlova meringue for dessert. Which is a neat trick since I have a horrendous cold at the time. And have not been to the gym for 2 weeks.

All I have to do to manage my diabetes is keep my level of circulating IntelligentInsulin topped up with an occasional injection, and take an occasional BG test to check things are OK. And that is all.

Welcome to the future ladies and gentlemen.

DBlog Week Day 3 : A little less of that please

Today's Diabetes Blog Week topic is 'What is the one thing you could do better'. I suspect I'm not the only one to be thinking, 'What... just one?'. Ask us what we do brilliantly and many of us will struggle. Ask us where we need to improve and suddenly a hundred things are jostling for pole position.

For the last two or three years I've been working working working... Trying to improve things. Trying to fix things. Reading and learning and experimenting. I have rarely kept better records. I have never tried so hard in the attempt to keep my BGs in range for as much of the time as I possibly can. But there is an aspect of my diabetes that I have made no progress on whatsoever. None. And it really needs fixing.

I still get too grumpy about out of range results. Every time.

In the old days I would get frustrated with diabetes' randomness. I still like to rage at the randomness every now and then, for old time's sake, but these days I am more likely to blame myself. I suppose this is a genuine downside of putting extra effort into controlling my diabetes. Results that I would not have batted an eye at a few years back now cloud my mind with 'Why's' and What if's'.

I still beat myself up.

All the time.

'Gah! I got the carb count of that meal waaaay off'
or 'I *knew* the fat in that would slow down the carbs'
or 'Stupid, stupid, stupid. I massively overestimated the fat-based carb slowdown and now I'm high'
or 'Low after the gym. Again!'
or 'High after the gym... Shouldn't have had those extra carbs'

These days, with Artoo I have even more ammunition to beat myself up with.

'Not enough of a TBR...'
'Too much of a TBR...'
'Should have/should not have used that square wave/dual wave/duration/split/timing...' (delete as applicable)

Carb counting? Exercise adjustment? Basal profiles? Food choices? Snacking?

In reality it is all of these things and none of these things that need improvement. All the time. I am reminded of a brilliant post by Kim of textingmypancreas entitled 'What we aim for'. We put in all this work. We make all this effort in the hope that nothing will happen. Nothing, as Kim points out, is a pretty lousy reward.

Occasionally I have had brief moments where my meter seemed to have slipped into some parallel universe of BG nirvana and almost refused to give me an out of range result however much I misbehaved. My problem is that once I had glimpsed that I began to want it all the time. Even though I know deep down that is impossible. Diabetes is too fickle, too variable. The goalposts move too often and chasing down the new 'normal' takes time and involves 'out of range' information to base decisions on.

Jane is forever encouraging me to relax a bit and give myself a break. As with so many things in my life I really need to listen to her.

DBlog Week Day 2 : One good thing

When I looked down the list of topics for DBlog Week I knew this one was going to give me some trouble... Something about diabetes that I nearly always do well? Talk about a hypodermic in a haystack. Tomorrow's topic of something I need to improve on is noooooo trouble at all. How many would you like? How long have you got? But something diabetes-related that I do well? Hmmmmm...

I nearly wimped out and posted about how brilliantly supportive and understanding my family is (however grumpy I get). Or how amazing the information, hints and tips are that come flooding from all corners of the DOC at the first keystroke of a 'Bah! Having a rubbish day today' tweet. But then it struck me as I fished a fluffy fruit pastille out of my pocket to counter what might (or might not) have been a slight dip in BGs. There is a little thing that I have done ridiculously well ever since I was diagnosed. Every day! It's so much a part of my life that I no longer even think of it, but occasionally when it is mentioned to non-D types I get met with a raised eyebrow and just a hint of "Well that's a bit weird" behind the eyes.

I am amazing at carrying hypo treatments around. I don't think I've gone anywhere in the last 20-odd years without pockets full of goodies 'just in case'. In sweetie-carrying terms I am way more reliable than a Werthers Grandfather (who only managed a measly 15 years). I have treatments. I have backups. Occasionally I have backups of my backups.

Just after I was diagnosed I was advised that I'd have to carry something sweet on me at all times. I found a little tin in a giftshop that had a nice vintage-label design printed on the lid. Initially I carried dextro-energy tabs in it, but they were vile and I discovered that it was just big enough to carry three of four sachets of sugar - the kind you get in cafés and coffee houses so took to carrying them instead. For many years I siezed hypos as an opportunity to have a funsized chocolate bar (even after I knew that chocolate was nothing like fast-acting enough really). I would have chocolate in my coat pocket and the tin in my jeans. The tin became my 'last line of defence'. If ever I was anywhere and the shops were shut or there was just nothing around I would at least have something that might keep me going. I began to develop heirarchy of treatments based on their suitability to the time of year. Skittles and Jelly Babies come in small bags in some funsize assortments and are virtually indestructible in a jeans pocket during the Summer - even in 80% humidity and scorching temperatures on a brief stay in Singapore.

These days my weapon of choice in tackling hypos is certainly Fruit Pastilles. A whjole pack is just a tiny bit too long until you have had the first two or three but I like to think the extra strain that puts on the tube gives it a lovable 'crumpled' quality. And the hypo-addled T2 came across and helped out a few months back didn't seem to mind. (I was able to give her a spare pack that was acting as the backup to my backup).

And the tin still goes with me. Everywhere. There's not a scrap of paint on it now, of course. It has been polished to a gleaming shine by thousands of hours in my pocket, and is just very slightly dented.

DBlog Week Day 7 : Looking back

Topic: What have we learned this week?

I guess most of the posts today will share a common theme - a celebration of the online community of diabetics, or to give it it's full title the Awesome DOC. 

I've discovered a lots of new blogs this week that I will enjoy revisiting. I've been very encouraged by the lovely comments and kind words that people have added to our posts. 

What will stick in my mind most of all I suppose, is the great DBlog Week Blogger Meltdown of 2011. You can learn a lot about an organisation or group by watching what happens when things don't go so smoothly. When Blogger went down during Thursday and Friday it was fantastic to see bloggers on another popular blogging platform offering a helping hand, and others offering sympathy and support. 

In a way this is an illustration of the best in our community - people bound together by a common thread freely offering support and practical help to others. Not just to those exactly like themselves, but across divides of type, approach and level of experience. Not because they would get something out of it - but just to offer a helping hand to someone who needed it.

Who wouldn't want to be part of that?

DBlog Week Day 6 : Saturday Snapshot

Topic: Inspired by the Diabetes 365 project, let’s snap a few d-related pictures and share them

Not long before Diabetes Blog Week started I had emptied out my pencil case of the constantly growing piles of diabetes junk. By my reckoning that makes this just over the 6 day's worth of used strips, used and spare needles and other bits and bobs that get carted about everywhere until I empty them into my sharps bin and the cycle starts again... Diabetics, it seems, need determination, stickability, keen analytical brains... and large pockets.

DBlog Week Day 4 : Ten things

Topic: Ten things I hate about you, diabetes

[Places carefully nurtured positive attitude to one side, rolls up sleeves...]

1. For all the people who will leave their doctor's surgery today having heard those hateful words
2. For all the kids (and adults) who have been bullied for "bein' fat and lazy, and havin' eaten too many sweets, ha! ha!" and all the other lies, prejudices and misconceptions you revel in
3. For all the families who grieve for someone you stole from them
4. For all the minutes, on all the days, in all of the last 20 years that I've had to waste thinking about you
5. For hanging over each one of us, our families and loved ones like a fetid black cloud full of the threat of coma and complications
6. For your inconsistency
7. For making 'feeling a bit hungry' a possible signal of a life-threatening medical emergency rather than just being a bit peckish and your attempts to suck the joy out of every single mealtime
8. For the anxiety you caused my parents (and still do) when they blame themselves, worry what they did wrong, and wonder whether any of their grandchildren will 'get it now'
9. For robbing my life of what little spontaneity I ever possessed
10. For the sheer spirit-crushing, unrelenting, never-ending, no-days-off-ever grind of it all

[Crumbs! I didn't realise I was so cross ...aaaaaand relax!]

DBlog Week Day 5 : Ordinary Awesomeness

Topic: What awesome things have you done because of your diabetes?

Since I signed up to take part in DBlog week I've struggled to think of anything I could post today. And I'm not just talking about struggling to post because of Blogger's technical meltdown yesterday... For starters, can a person at my age and living the UK ever really get away with using the word 'awesome'? 

Unfortunately I have no acts of supreme courage in the face of extreme adversity to relate. I have not raised thousands for charity by trekking across the Andes on a pogo stick. There are no mighty campaigns of Government-steering advocacy to astound you with. And while there are many things in my life of which I am very proud - my beautiful wife, wonderful children, shelves in our lovely home that are put up almost level - I'm not sure that I think any of them happen 'because' of my diabetes. 

I've read some great posts already today about the genuine awesomeness of the people you meet in the DOC (diabetes online community). The support, wit and wisdom available 24 hours a day, 7 days a week that is truly amazing. 

By contrast, this will probably seem quite small. Ordinary even. Something like 20 years ago my pancreas more or less threw in the towel. Ever since then, every day, I (like many of you) have learned to 'be' my own pancreas. Sometimes I seem to make a pretty good job of it, other times I make a complete mess of things. Some days it feels easy, other days the task seems an impossible weight to carry.

There are no other diabetics in my family. If I'd been diagnosed 100 years earlier I might well have died within months.  

But I'm still here. 

And I guess that in itself is pretty awesome. 

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

DBlog Week Day 2: Letters to my liver

Topic: Letter writing day...

From: Committee for Arranging Levels Manually (CALM)
To: Liver & Associated Metabolic Effects (LAME)
Further to your previous message, we acknowledge receipt of your request. In triplicate. We are unsure why you feel it necessary to release that level of glucose immediately after the Body rises. However in the light of your insistence, and following consultation with the Delivering Insulin Myself team (DIM) to cover this additional load, we can confirm that your request has been granted.
Sincerely Etc


From: Committee for Arranging Levels Manually
To: Liver & Associated Metabolic Effects
It has come to our attention that on Saturday last, despite the agreement currently in place, you failed entirely to deliver the additional glucose into the blood stream that you have been so insistent is necessary. Furthermore, you made no attempt to alert DIM, with the result that the Spotting Hypos Immediately Taskforce! (SH... oh never mind!) had to raise the alarm. We would like to point out that it was at your own insistence that additional DIM procedures had to be put in place. For you to then unilaterally decide to withhold the promised glucose without notice has caused considerable inconvenience to the Body.
Yours etc

From: Committee for Arranging Levels Manually
To: Liver & Associated Metabolic Effects
Following the concerns raised about your recent performance, it is our unfortunate duty to relate that another complaint pertaining to your behaviour has been received. You may recall last year when you were commended for your gallant actions during the dramatic Overnight Overbolused Pizza Situation (OOPS) where your glucose release was instrumental in assisting the Body. Perhaps you were trying to make up for your lapse in delivery last Saturday? Perhaps although yesterday's dip in BG levels was only minor, you thought it had not been spotted? Whatever the reason, it would be extremely helpful if you could consult with other departments before actioning the emergency Dramatic Unexpected Mega-glucose Protocol. The SH..! team already had the situation well in hand with the Consumption of Assorted Really-tasty Bits System. Your unrequested and frankly overenthusiastic intervention, once again without due communication, has caused rather more problems than were strictly necessary. We appreciate that you were trying to help, but once you started your glucose release you really didn't know when to stop did you?

It has been a difficult time for us all since the decline of Pancreas Industries, but really the only way forward is if we all work together. Having a loose canon around who either deposits, or fails to deposit significant quantities of glucose at various times is making the Committee's job significantly harder.  It is unfortunate that you are still unable to clearly identify your glucose releases  (the proposed system of bright blue triangle on the forehead was rejected). Until some sort of communication system can be installed, what we need from you is measured, gentle consistency, not reckless attention-seeking overreaction.  Your prompt attention would be much appreciated.
Kind regards etc

DBlog Week Day 1: Diversity, old chestnuts and unison singing

Topic: Admiring our differences.
When I first began reading diabetes blogs, the ones which most resonated were the ones where someone a bit like me was writing about something that felt familiar. Where I felt an immediate connection in experience. Pretty soon though I discovered that some of the most moving, interesting, enlightening or just downright funny posts are from people whose experience is completely unlike mine.

I've a lot I can learn about making good BG friendly food choices from a type 2 who uses only those choices as their treatment.

I'm not a pumper, I'm not sure I want to be... but I love to read about the ups, downs, ins, outs, set changes, square waves and TBRs that they juggle every day.

I have no idea what it would be like if the diabetes was not mine but my child's. I read an incredibly inspiring post by a Mom in the US with not one but three T1 diabetic sons which challenged the reader to give bolus advice based on the son's lunchtime phonecall. The subtlety and complexity of the required calculation was staggering. And this is a woman who is caring for three young men and holding all their ratios, timetables and hormonal ebbs and flows in her mind.

I was brought to tears by posts from Lauren (our first blog follower) for whom diabetes was a minor inconvenience in comparison to her cystic fibrosis. An amazing, strong, creative, feisty young woman who tragically died earlier this year.

Every so often I come across the old chestnut of Type 1 vs Type 2. Whether they should even be called the same thing 'diabetes'. The community turning on itself. The bizzarre suggestion that one type is somehow less 'serious' than another. Here's how I see it. One is metabolic, the other is auto immune. Neither is easy.

People with T1 and people with T2 both need careful dietary control/medication to control BG levels. People with T1 and people with T2 are at risk of heart disease, blindness, kidney failure et al (in fact T2s are more likely to have begun to develop complications even before diagnosis). If you put all the people who take insulin in the UK in one place and divided them by type the T2s on insulin (including basal bolus with all the challenges T1s face every day plus insulin resistance into the bargain) the T2s would massively outnumber T1s.

I understand the frustration of diabetics and especially parents whose kids are taunted about their T1 by ill-informed peers, but for my money we should press for education not a label-change. We should all stand together and work to break down the myths and misconceptions that are repeated in the media so often.

Yesterday I was in the band leading worship in church. We led a song where the first verse was stripped back and spare. All elastic timing and gentle guitar. More voices joined the tune for the second verse, all singing the same melody line. But it was at the chorus, as voices split and began to sing different melodies that the real beauty began to happen.

This is what the DOC is like. The strength of this community is its diversity. We push forward with common the aim of better control for ourselves and support of those around us, longing for a cure for future generations, pushing for others to have a better understanding of this condition. We acknowledge different approaches. No one-size-fits-all. We bring our different experiences to bear and the result is richer. Stronger. Better.

You can't get harmony if everyone is singing the same note.