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.

Learning to love my Aviva Accu-chek Expert

I was given an Aviva Accu-chek Expert handset and have been using it for a little over 4 months now. I wrote a review a month in to the experience with a few reservations, but as time has gone on and settings have been tweaked and refined I've come to love it. It doesn't work perfectly and the bolus advice it provides is not faultless, but when life is relatively steady (and my basal is behaving itself) it has given me whole weeks of astonishingly good BG levels.

Take yesterday as an example: I'd been a bit on the low side the night before, going to bed at 4.1mmol/L (74 for US readers), so I tested at 2.30am to see if my little carb top-up had worked and was pleasantly surprised to read 5.9 (106). I was even happier reading the same 5.9 at breakfast. Left my usual delay between bolus and eating, had some toast and went to the gym. The Expert allows me to adjust breakfast bolus on gym days with a 'health' option, a percentage reduction for 'exercise 1', I've set -25% for the gym and -10% for more general pottering as 'exercise 2'. By lunchtime I was 4.2 (75). Not bad. Now because that's a bit 'near the edge' the Expert automatically deducts a proportion of lunch bolus to attempt to get me to the mid-point of my desired range (4-8mmol/L or 72-144). My pre-dinner test was 6.5 (117). Result! I like to keep an eye on post-meal spikes most days, and tested an hour after eating in the evening to find 6.2 (112). The meal was pretty low GI so I figured it still had a fair amount of carbs to release. Additionally we were meeting some friends for a couple of pints while the kids were out at a club, any rise from the beer ought to be handled by the potential over-enthusiasm of my evening Humalog. My bedtime test was a smile-inducing 5.9 (106).

A whole day and I'd guess I didn't go much above 8 (144) (hard to be sure as I didn't test at the likely peak after lunch). Neither did I hypo, despite a session at the gym. What US CGM wearing pumpers would call 'bolusing a no hitter'.

Now anyone who has read my last post will know that this doesn't happen all the time. When life is a bit more chaotic, when basal-needs change, when overall levels of activity rise or fall those carefully tweaked settings are just a little off. Not much but enough to put you on the glycaemic rollercoaster of guessing, double guessing, highs, lows, chaos and confusion. What US blogger Scott so accurately described last week as low blood sugars, guilt and fear.

After 20 odd years of handling all the calculations and adjustments by myself I'd guess I'd got pretty good at knocking a unit off here, adding one on there to try to match the constant ebb and flow of life and BG levels. Every so often I'd get a day just as good yesterday. What I've noticed since using the Expert though is that these days are no longer a shock. They are not normal by any means, but having been as rare as hen's teeth, I can now find weeks where I get several on the trot.

I'm continuing to experiment with settings for illness, and I clearly need to do a lot more work to handle the wider-scope shifts in routine that caused me so much trouble during April.

There are still a few things I'd change about the Expert, but it's certainly won me round and I'd highly recommend it.