Changes, uncertainty and what to do next

I had my appointment through for my Annual Review a few days ago (due early April). A change of staff at the clinic has meant that they have got rather behind. A week or so ago I called to see how things were going and I was offered an appointment in a cancellation slot. As a result I guess I'm feeling that this appointment represents my 'chance' to make some changes that I've been mulling over and I want to make the best of it.

For many years I just attended my annual reviews in a smile and nod frame of mind. If I mentioned a problem, whatever response I got was either something I had tried myself and knew didn't work, or seemed to relate to an entirely different set of circumstances. These days I like to go armed with a few thoughts, questions and, sometimes, requests for new things. This is easy enough when you have heard of a thing that seems to solve, very neatly, a problem you are having. When I had a period of time struggling to remember whether I'd injected or not, a pen which recorded doses and timings automatically was an ideal solution.

So ever since my appointment came through I have been wondering what to do next. There have been whole weeks recently where I've been grin-inducingly happy about my levels. Weeks with no hypos at all. Weeks with very tight control and few if any results outside my target range. Periods where I have felt that I'm winning.

But the weeks when it is not like that suggest that it can be even better.

I've been wondering about my basal for almost all of the time we have been writing this blog. If you are a regular reader, you must be sick of it. The problem is that sometimes it works brilliantly. And sometimes it doesn't. There is an alternative analogue basal (Levemir) about which I have heard Very Good Things for a long time. One of the apparent benefits of Levemir is that it is more responsive to change than Lantus, which can take a day or two to settle into a dose change. Another factor is that it can work well split into two doses. I tried this with Lantus but it didn't work for me. A person's basal requirement is unlikely to be exactly uniform throughout the whole 24 hours. The opportunity to have 2 phases of basal insulin, perhaps one with a bit more, one with a bit less, combined with the rise-and-fall activity profile of the insulin itself gives you a few more options. The job of basal insulin is to hold you steady while your liver is deciding whether to trickle a bit more or a bit less glucose out at that time of day.

Of course the most flexible, tweakable and tailorable basal pattern would be achieved with a pump. To be honest the most flexible, tweakable and tailorable delivery of any insulin would be a pump. About a year ago I wrote a post about not wanting one. In the 12 months since, I've changed my mind perhaps 100 times about whether pumping is right for me. That's before we even get to the question of whether or not any funding-application I made would be supported.

In the last few weeks it's been going round and round in my head again. Benefit. Drawback. Benefit. Drawback. I think I'm now prepared to accept that the fear of 'attachedness' would come to nothing. Everyone seems to have it beforehand, and no one seems to care after about a week. At least not enough for it to detract from the positives they are experiencing. But I still do have genuine concerns over delivery failure and finding good spots for an infusion site (one side of my abdomen is a bit dodgy absorption-wise with some lipohypertrophy from years of lazy overuse).

At the end of the day it feels like any change in regimen has a benefit vs hassle balance that needs to be weighed. If I went Levemir I'd be adding an extra basal injection at some point in the evening. Mostly this would be fine, but some nights it could get right in the way. And any change of insulin would require a fair bit of faffing about getting the doses and timings right. I could, unlike Lantus, get access to a 0.5unit delivery device which recent experience suggests could be well worth having.

Switching to pumping, of course would involve faffing of a whole different order of magnitude. But the potential benefits that I've read about so often still shine out from behind the wall of uncertainty and concern in my head.

I just don't know.

Update: D-Art Day : The path of least resistance

Neither one thing nor the other

Well... a few weeks into the holiday period and things haven't completely fallen apart control-wise. Yet. We had some time away in Cornwall and perhaps because I feared the worst I've returned feeling that it worked out pretty well. Oddly I seemed to fall exactly between two possible Lantus doses. A unit down and sugars stayed grump-inducingly high, a unit up and I had to fire-fight hypos with regular medicinal ice creams. You can guess which one I opted for. Oh for a half-unit delivery device for Lantus!

When we returned home I dropped Lantus back down, expecting (with more usual meal choices) that things would settle. But oh no... not a bit of it. Diabetes often seems deliberately contrary, confounding whatever expectations I have of what will probably happen next in the general scheme of things. So I reduced Lantus by the one unit which had meant I was needing to drop meal doses by 20-30% and expected that the hypos would disappear, which they did. And then some. After two days consistently in the teens I put Lantus back up again and waited for the hypos to reappear. They haven't. And neither am I needing to reduce meal doses to avoid them any more. If anything I seem to be running slightly high more often than not.

Maybe it was the sea air? The sand between my toes? We did a bit of wandering about, but certainly not what you'd call 'exercise' in any energetic sense of the word. Whatever it was the hyper-sensitivity I had to insulin in Cornwall has mysteriously evaporated and the same doses are now behaving very differently.

To add to the nagging voice in my head about these recent slightly higher levels, my appointment for annual review has just come through. Ideally I'd like to have a few very tightly controlled weeks in the run up to my HbA1c. After all I've had a few in recent months.

How hard can it be?

Waiting for the storm

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

But last Friday was the end of term.

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

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

I'll let you know how I get on.

New big meal strategy: thirds

Following on from my recent moan about errant BG levels during holidays I posted on a forum that sometimes it seems to come down to a choice between food variety and good levels. If I stick to basically the same meals week after week and use tried and tested doses I tend to have far more consistent results.

This is, of course, blindingly obvious.

But it's not really an ideal long-term solution is it? In fact it reminds me a little of a joke by Tommy Cooper: "I went to my doctor the other day and said, It hurts when I do this" [briskly raises left arm above his head] "He said, Well don't do it then". Trouble is I really like food, so the wider variety and range of quantities I can eat the better - not necessarily all the time, but certainly every now and then. But these occasional guilty pleasures are not at all enjoyable if they always result in disastrous BG levels.

Part of the frustration stems from the fact that my insulin:carb ratio which in theory should allow me to eat pretty much whatever I like, seems to be less than predictable in certain circumstances. Almost everyone, I suspect, who adjusts doses this way will be familiar with the experience of counting carbs in an unusual meal carefully, taking the 'right' dose, only for BG chaos to follow. This can be particularly frustrating where I know I can achieve pretty good results for notoriously difficult meals (pizza or fish and chips for example) if I eat the 'usual' amount and take the 'usual' split dose, even if the actual carbs involved are not measured or counted very accurately at all.

A few very interesting comments came out of my forum post. I'm always suspicious of 'rules of thumb', but someone remembered a suggestion from John Walsh's excellent 'Using Insulin': Take your weight in pounds and halve it, then use that figure as grams of carbs - this gives a good indication of the meal size above which your insulin:carb ratio may well break down. It might not work for everyone, but it's pretty much bang-on for me. Someone else suggested that above a certain point they found they needed to add approximately a third to the calculated dose for it to work well.

Last night, we had a mixture of 'heat it and eat it' ready meals from the supermarket, and I ventured a pudding too. Overall mine ran to just over 90g carbs with a fairly high fat content. Not horrendously high carb load, but enough in recent weeks to cause problems. I decided to experiment with the new 'adding a third' approach and split the dose as if I were eating fish and chips. The results were excellent - 4.8mmol/L (86) before the meal, 5.0mmol/L (90) at one hour and 6.2mmol/L (112) at just over two hours. By hour three I was still pottering along at 6.1mmol/L (110) with a mix of the split doses still active. By suppertime I'd dropped back to 4.7mmol/L (85). That's a little low to go to bed on, so I had a small snack to prevent a dip overnight. FBG this morning was 5.0mmol/L (90). Cracking!

It's a bit early to believe that this will solve all my problems for unusual
meals in the future, but it's certainly a system I'll try again.

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!]