Why do I blog?

I’ve talked before about the things I’ve learnt from the interweb  but that doesn’t explain why I blog.

I’ve been thinking about it for a while. I’d been inspired by the many American bloggers talking about type 1. And while diabetes is the same the world over, I was disappointed by the lack of British bloggers giving their view on life with diabetes in the UK.

This is the bit where I’m meant to talk about how I worked so hard to set up a site yadda, yadda, yadda but I’m afraid it’s not true. I’d thought about it, talked about it, doubted whether I’d be able to think up enough stuff to write about and never quite got round to it. Then I bumped into Tim online, another British type 1 who’d just started blogging and wanted a co-writer. I told the husband “darling, I’ve met a man on the interweb” and he gave me that “I’m not even going to ask” look and our blogging partnership was born.

But why do I do it? I’ve always talked about my diabetes, to people I meet, at conferences, at work. I don’t hide it. If I hide it away it feels like diabetes is just baggage that I drag around with me. If I talk about it there’s a purpose to having diabetes – I can share my experiences, help other people, learn from what they have to say.

At this point I feel I must disclose that since I got the pump this does go a bit too far at times. I have been found in a bar at a diabetes conference having a conversation with a male nurse along the lines of “I bet you can’t guess where I’ve hidden my pump” and “poke my thigh, see there’s my infusion set” all with the aim of educating people about the pump and how easy it is to hide!

Please believe me when I say that most of the time I manage to avoid such blatant exhibitionism, but I have always done some kind of voluntary work around diabetes – fundraising, lobbying, writing, public speaking – and I know that it makes me feel better. I stopped for a couple of years after I graduated because I had too many things going on but I really missed it. I seemed to be missing a reason for being diabetic.

So, it appears that blogging is my therapy and (excluding the occassional issue) I enjoy it, so I’ll carry on.

The hypo portfolio

Impractical for treating hypos, but oh so delicious
Impractical for treating hypos, but oh so delicious

A hypo is a hypo is a hypo. Low blood sugar, sweaty, fuzzy head, confused, weak, dizzy, argumentative (yes, even more so than usual) etc etc. But even with all those similarities I think there is a virtual smorgasbord of hypo types.

  • The nice hypo – you feel yourself going low, you eat, you rise. Job done, move along please people, there’s nothing to see here.
  • The thieving hypo – you’re in a shop, you’re low, and you have no food. Theft by eating produce before paying for it is the only option. A mid hypo altercation with an overzealous security guard can turn this into a full on criminal hypo.
  • The embarrassing hypo – any low that involves crying, arguing, falling over, spouting rubbish or generally humiliating yourself in public fits into this category.
  • The “why now?” hypo – you’re in a rush, you need to drive, you’re in an important meeting where gobbling fruit pastilles like a secret sugar addict isn’t really an option and a hypo comes along. Perfect timing.
  • The sporting hypo – your swim times have slipped from near Olympic standard to something a toddler would be ashamed off. You’ve missed 7 out of the last 10 shots in a game of tennis. Your sporting prowess has evaporated along with all the sugar in your body. Something a little stronger than half time oranges is required here.
  • The middle of the night hypo – this species normally turns up on nights when you’re sound asleep with a full day ahead of you. Bonus points are awarded for treating the low without getting juice or glucogel all over the sheets.
  • The “I knew it was coming but was hoping for a miracle” hypo – you’re sitting watching TV, you’ve been feeling a bit low for a while but going to get some food seems like such an effort, so you give it another 20 minutes in the hope that your body is going to discover a bit of sugar down the back of its virtual sofa and you won’t have to bother moving.
  • The “I’m cured!” hypo – you’ve been chasing lows all day and three juice boxes and a tube of glucogel have just raised you to the blistering heights of 4.1. The only logical explanation for this is that your body must have started making its own insulin again – you’re cured! Of course there could be a more boring answer, like your basal rate is too high or you over bolused for breakfast, but where’s the fun in that?

There must be more, which hypos have I missed?

The diabetic birth plan

I’ve found that people ask me a lot if I’ve written my birth plan yet. And I’ve got a two part answer to that question. In terms of a tradition birth plan, I’ve decided not to bother. I’m happy with my hospital’s standard procedures around the things that are important to me – stuff like having skin to skin contact straight after birth, staying mobile during labour and being helped to breastfeed. I’ve decided to take the rest of it as it comes – in theory I’d love a natural, pain relief free labour but that’s not something I can really plan for. If I decide I need pain relief at the time, I’ll make that decision then.

When it comes to diabetes though, my approach is completely different. Hypos or hypers are not desirable during labour. Hypos will make the whole thing a hundred times harder for me. And high blood sugars pass through to the baby, who in return pumps out extra insulin to deal with them. Then when she’s born and stops getting the extra sugar from me, she’ll still have all that extra insulin in her system, meaning she’s likely to go hypo. Not an ideal welcome into the world. So for me it’s really important that I do all I can to keep my BGs between around 4 and 7 during labour.

The standard approach at my hospital would be them to take control of my diabetes, using an insulin drip, testing BGs every hour and the nurses would adjust accordingly based on a pre-written scale eg if she’s an 8 give her 1 unit, if she’s a 10 give her 2 etc. I find it very stressful to have someone else meddling with my diabetes. I just don’t share well. I like to be the one in the driving seat, especially when it’s as important as this to get it right.

I want to manage my own diabetes as much as possible, and I don’t want to have to argue with a delivery team who are used to doing things a different way. So my diabetes team and I had a chat, and came up with a diabetes birth plan which gives me the freedom to manage my diabetes, unless I’m unable to do so, or decide that I no longer want to do so. In which case, the hospital will take over.

We wrote the plan from scratch, so I thought it would be useful to share in case anyone else is having similar thoughts. Feel free to steal it:

From: Alison’s diabetes team
To: Alison’s obstetrics team (plus I’ve got copies in my notes and will have them with me during labour to avoid any confusion)

I met with Alison recently to discuss management of her diabetes during labour. I think it is very likely that Alison’s glycaemic control will be better if she and her husband are allowed to self manage. We agreed the following approach: 

  1. Alison and her husband Geoff will continue to manage her diabetes using her insulin pump, CGM and regular testing during labour aiming for a target range of 4-7 mmol/l. Alison will take additional bolusses of insulin as required if her BG level is rising/is likely to rise above this threshold. Alison should be able to use Glucogel and/or dextrose tabs to treat hypoglycaemia as required. I have suggested that she doesn’t use large volume solutions such as Lucozade in case C-section is required.
  2. If Alison and Geoff are unable to maintain her BG within the agreed range, Alison should be switched to a glucose/potassium/insulin (GKI) infusion, preceded if necessary by IV insulin, aiming to maintain her BG within target range.
  3. If Alison undergoes C-section under regional anaesthesia (ie epidural so I’m still awake) she and Geoff will continue to manage her diabetes using the pump.
  4. If C-section is required under general anaesthesia (ie I’m put to sleep) standard hospital procedure should be followed as per point 2 above.

In summary, as far as possible, I think we should support Alison and Geoff and allow them to manage her diabetes with the proviso that if her BG becomes unstable or she requires general anaesthesia then standard hospital procedures should be used.

That simple letter takes away my fear of having to argue over who runs my diabetes. It means I’m confident that I will be allowed to get on with it myself, unless I’m incapable or decide that I don’t want to, in which case the hospital will take over. That leaves my mind free to think about more important things, like having a baby.

The swings and arrows of outrageous pumping

Well, it’s been just over a week on the pump and how are things going?

To begin with I got off to a flying start with some outrageously good results for the first three or four days. However, this turned out to be beginner’s luck and since then my levels have been far too high. Not dangerously high but certainly outwith the parameters I’m happy with. Not that I’m anal or anything.

So I’m going through the usual pump start processes of testing, logging, testing, logging and reviewing data to see where things are going wrong. I’ve tried to do this systematically and only change one thing at a time so I can more accurately measure the effects of the change. Today, for example, I have decided to look at my morning basal rates and so have not eaten anything since last night. As I write this I have to confess I’m rather peckish, but I think I can safely live off my hump for the next few hours.

My results this morning have been highish – hovering around the 12′s – but, more pleasingly, they have remained consistently around 12, varying up or down 1 mmol/l or so. Given meter readings are generally as perfectly accurate as US troops rescuing British hostages; I’m taking this as nicely consistent. All I need to do now is start at a lower level in the first place. This is my theory and if I’m completely wrong then do comment below.

Aside from the banalities of blood glucose levels, I’ve been enjoying the pump (if one can ever said to “enjoy” a piece of medical equipment). Stuffing in insulin for meals is far easier & unobtrusive than injections and being attached to something all day and all night is – surprisingly – considerably less of a problem than I thought it would be. Insulin delivery also seems to be a lot more consistent. If you put in x units of insulin and you expect your BG to be at y in a few hours time, then it usually is. In retrospect Lantus, to name names, seems to have been almost entirely random in the way it squirted out its long-acting goodness.

So I continue to test and log and get suitably annoyed and frustrated when things don’t work as I expect them to. But with the help of my DSN and the book “Pumping Insulin” (which I’ve taken to reading on the bus to work) we seem to be slowly but surely getting there. Huzzah!

p.s. –  readers who have no interest in pumps while be pleased to hear that before long I will write some more general articles and will stop banging on about the damned thing.

Comatose and rotting toes – the lighter side of insulin dependency