Looking back - DBlog Week Day 7

And so another Diabetes Blog Week draws to a close. It has been great to take part again and I have been really touched by all the encouraging comments and feedback. One of the best things about #DBlogWeek for me is that feeling of connection to a wider global community, the chance to find new faces and voices and also to see how some familiar faces respond to the weekly prompts.

Today's topic: As we wrap up another Diabetes Blog Week, let’s share a few of our favorite things from the week. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or comment left on your blog that made you smile. Anything you liked is worth sharing!

There are so many posts that I loved reading that I can't list them all. Here are just a few off the top of my head:

Day 1 - Change the world. Kev at Circles of Blue gets cross

Day 2 - Poetry Tuesday. Either Grumpy's limerick or Kim's haiku

Day 3 - Scott Strange's amazing post about depression

Day 4 - Could have been any of Pumplette's posts (ably edited by Annie). I loved the dialogue between you two!

Day 5 - Jules embraces change and mentions boobs. What's not to like?

Day 6 - Sara from Moments of Wonderful shares 12 hours of a Saturday.

And there are so many more I could have listed. I know if I wrote this post in another 20 minutes I'd probably write a different list entirely.

As ever, massive thanks go to Karen at Bitter-Sweet for making the whole thing possible.

Them Ole Diabetes Blues - DBlog Week Day 6

Saturday snapshot for day 6 of Diabetes Blog Week.

Guitar. Check. Amp. Check. BG level. Check. Ready to rock diabetes under the table!

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.