Guest post: Lessons learned from insulin pump breaks

Guest post from 'Big Purple Duck'.

I was diagnosed with type 1 diabetes aged 3. Type 1 diabetes is an autoimmune condition in which the immune system attacks the insulin-producing cells of the pancreas. Insulin is a hormone vital to the process of transforming the food we eat into energy. Without it, death is certain. So in the absence of a fully functioning pancreas, those of us with type 1 need to take insulin on a daily basis to prevent our blood glucose levels becoming dangerously high.

For 15 years I managed this condition with daily injections of insulin. Then, 8 years ago, I started using an insulin pump. A quick look at some other type 1 blogs will soon find you the benefits of an insulin pump over injections. While it’s not for everyone, I have found it much more effective in managing my blood glucose levels. However, I have in the last 18 months taken 2 breaks from pumping and returned to multiple daily injections (MDI) for roughly 3 months each time. Here are some of the things these breaks have taught me about type 1, pumping, and life with diabetes.

1. Pumping is still better.

I have found the breaks helpful in reminding me why I started pumping in the first place. Using an insulin pump can be much more intensive than injections, and it can be difficult to stay on top of things. Switching back to MDI gave me a break from this intensity, but fairly quickly on both occasions the swinging blood glucose (BG) reminded me why the intensity on the pump is worth it. BGs are much more stable, life is more flexible, and on the whole I feel much better.

2. Pumping is, however, the lesser of two evils.
There is, sadly, no magic fix for diabetes. It’s a difficult condition to live with, no matter how you manage it. Pumping can be intense and throws in some extra variables. (Is my site working? Has the tubing blocked?) But MDI is more inflexible and causes me more hypos (low blood glucose). Neither is perfect. You’ve just got to pick whichever one works least awfully for you.

3. Pumping is less scary.
After I got into the swing of things with the pump, and before I took any breaks, I had a permanent, vague anxiety about what the hell would happen if my pump stopped working and I was forced to return to MDI until I got a replacement. This anxiety has now gone. I know I can manage things on MDI, I know roughly what doses I’d need, I know what works for me on MDI and what doesn’t. And so there is less pressure on pumping. If I’m having a nightmare with infusion sites and just can’t seem to get anywhere with it, I know I have a fairly comfortable MDI regime to fall back on.

4. It’s not all or nothing.
Before I took a pump break, I was absolutely horrified when I started to have a site or absorption problem. I’d keep taking correction doses on my pump, see my BGs keep increasing, and panic. I’d keep on fighting this battle until I got a site that worked (and then my BGs come crashing down, obviously). Now I approach high BGs a little differently, and allow injections to help me. One of the huge benefits of injections is that I have no doubt that the insulin dose went in. So when I’m faced with a high BG now, whether I suspect my site is problematic or not, I correct with an injection. This always brings me down quicker than a pump correction (I’m still theorising on why that is). It allows me some breathing space – I know the insulin has gone in and will start to bring my BG down, so I can focus on finding the cause of the high. When I do change my site, I’m much less anxious about it because I know injection corrections will see me through if the site doesn’t work.

5. I’m more flexible about balancing my diabetes with life.
Sometimes I’m quite happy to put in the effort of BG checks 8 times daily, checking basal rates and changing sites because it leads to better BG control and generally better health. However, sometimes life gets pretty crazy and I’m not able to prioritise my diabetes like this. Before my first pump break I would have got very upset about this conflict and found myself heading straight for diabetes burnout. However, now I weigh up the option of going back to MDI again for a period until things are calmer and I feel more able to put in the hours required of the pump. In fact, I’m considering MDI for the Christmas period this year so I can ease up on testing and thinking about it so much. And so I actually resent my diabetes less, because I feel able to put it on the back burner with MDI when I feel I need to.

6. Insulin is amazing – method of delivery is fairly irrelevant.

The above is an image that has always stuck with me since first I saw it – a young boy with diabetes just before the discovery of insulin, compared with the same boy three months after starting insulin treatment. It’s horrifying to think that there are people with type 1 diabetes the world over without access to insulin, or struggling to afford it (see #insulin4all). Fundamentally, insulin is the key to life for us – and I am exceedingly lucky to have access to it without concerns about financing it, thanks to the NHS. So while neither pumping nor MDI are ideal, and while I sometimes find it difficult to decide which works better for me at a given time, what matters is that I have insulin and my health. The rest of it can be figured out.

Night-time nonsense. Perfection isn't possible.

The darkest hour, just before dawn, yesterday

I stumbled across this little bit of research again today. And while I know I had clocked it in the past, and was aware of it - this time it came as a huge relief.

I have not been feeling altogether cheery about my diabetes of late. Off and on for something getting on for a year I have been feeling more than usually grumpy and disheartened about it. I have written (mercifully few) ranty grumblings about it every so often. Partly driven by a couple of clinic appointments where I somehow managed to spend the weeks before and afterwards twisting and distorting either real or imaginary conversations into spirals of judgement, impossible requirements and self-destructive behaviours. Quite reasonable and well handled suggestions suddenly becoming a cloud of frustration and rage in my head, and a lead weight in my heart.

Many people would describe this as 'diabetes burnout', but that always sounds a bit too dramatic and significant. Mine is perhaps more of a 'diabetes weariness', with occasional outbursts of 'OH FOR GOODNESS SAKE WHAT ON EARTH IS THE POINT'.

Diabetes is such a mind game. Confidence and self-belief count for a lot for me. I do better when I feel things are going better, and I am much more likely to go off the rails or make (deliberate/knowing) poor choices when my levels are all over the place anyway.

You may recall that one of the changes I had been trying to make related to my remaining overnight hypoglycaemia. Nothing like as bad as it would once regularly have been (I have not had any severe hypos either in the day or overnight for years) but time spent hypo overnight is still something I really want to reduce further. Well after the best part of a year, and having tried a whole bunch of different approaches (some disastrous, others not so bad) I'm not sure I'm very much further forward. Without continuous monitoring it's hard to be 100% sure, but it seems I will still dip below 4.0mmol/L at some point on something like 3 nights in a month. I am now running most of the other nights significantly higher and that has resulted in an increase to my A1c by something like 0.5%-1%. On the plus side though, my number of BG checks below 4.0mmol/L last month was slightly lower than normal (whatever normal pretends to be).

So some things are a bit worse. And other things are a bit better. Well that all sounds familiarly 'life with T1D' to most of you I'm sure.

But here is the thing - if you, like me, struggle with variability in levels overnight. There is a LOT we can do to reduce it. There are strategies that we can put in place to really help. But it will never be perfect.

And we have to find a way to make peace with that.

During the day, you can do your best to reduce variability - to make good food choices, to dose carefully, to make adjustments around activity and exercise. And all the time you can watch and check and see how you are getting on. Check. React. Adjust. Move on.

What this piece of research, published in Diabetes Journals in May this year, demonstrates though - is that overnight insulin requirements are likely to be even more variable than those during the day. Think about that for a minute. In almost 2,000 days and nights that were measured and compared there was more variability in insulin need overnight than during the day. More variation with NONE of the variations in food, activity and all the rest.

That doesn't mean that it is not worth trying, of course. We still need to do the best we can to make up for our errant pancreases letting us down on the whole insulin-production front. Keep checking, reviewing and adjusting. Throwing in the occasional overnight basal test every now and then ("Hooray!", said no one ever). But it is worth bearing in mind, if you are struggling this week, that you are not on a level playing field. What works well most nights might let you down tomorrow, and that is not your fault.

Perfection is not possible. All we can do is our best.

Link: http://care.diabetesjournals.org/content/39/5/830.short

64 Days with the Minimed 640G - A year on

Someone at Medtronic expressed an interest in some of us who video-blogged as part in their '64 days with the MM640G' trial to post a follow-up after a year to say how we were getting on. Well I slightly missed the deadline, but such is life at the moment. I still have a post waiting in the wings that I've been wanting to write since March. Somewhat unexpectedly I have managed to get it put together this week - partly because the battery state on my pump was right for something I wanted to share.

I still really like the MM640G. It's a bit big, it's a bit clunky, and it's a bit of an ugly-duckling in the looks department, but it still works well for me. And if I were choosing this week from the current crop of available devices, I would opt for it again. So much of it does exactly what I want... rock solid dose reliability, great handling of temporary basal rates and basal patterns, handy home screen showing most of what I want instantly. And if I could afford the wizardy of sensors I know from experience that I would love it even more.

Unfortunately, what tends to happen with me, the longer I live with a piece of diabetes technology, is that I find more gripes and niggles with it. So fair warning, this is a bit nit-picky.

So here you go... some moaning about repeat button presses, slightly over-cautious menu-language, that darned screen unlock thing, the flippy-floppy belt clip and, perhaps most importantly the battery check that will reject a battery if it has anything less than absolutely full charge.

Enjoy!

Watch the video