Wednesday, 17 November 2010

Night time testing - keeping your eye on the target

If you haven't heard of Olly Double, I highly recommend you go and buy his DVD. Olly is a British comedian/lecturer - and also has 2 sons with type 1. He did some stand up comedy at this year's Friends for Life UK which had the whole audience in stitches (a clip of it can be seen here).

Olly recently wrote a great post for Diabetes UK, regarding night time testing. The cause for debate/nomination for 'person who needs a slap' comes from the following commenter:

I am not aware of the age of the children you have i am sure i checked your article but could not find them. However after reading it i do feel a sense a paranoia within your household. Why keep testing, surely if the levels are good during the day, then it is more common then not that the levels remain good through the night. I assume you are using long acting insulin, and as long as they have some supper that is usually enought. You must be aware that being permently tired is no good for you or your children and sleep is vital to function correctly. You must also be aware that everyone needs to learn to be a bit independent and learn how to look after their condition to a degree and not allow anyone with diabetes to live their lives by it but to live a life and control it so as not impeed the quality of life. Believe me i have seen many a diabetic so caught up with timing of meals/injections etc that life becomes dominated by the condition. Life is for living whatever medical condition you have. I suggest listening to your doctors and relax a bit, and ease up on testing during the night. (I have had diabetes for over 25 years, have three kids of my own and live with them on my own)!

Several of the parents from the CWD UK emailing list have posted replies detailing everything I could feel the need to say. But it got me thinking - and after reading Tom's post, I too wanted to pipe up a little about why I test during the night and why I feel it is important.

I'm going to go right out there to begin with and say that I am very lucky and have relatively stable glucose levels. They are by no means perfect, but I am fortunate not to suffer with huge swings in BG level, or with my BG levels randomly rising or falling on a regular basis (it happens - just not very often). With me, there is usually an explanation as to why my levels are where they are. Not all the time - but usually.

However, I am still a fan of night time testing. For anyone unaware, Tom is my partner - so we quite often set the alarm for 3am and do a test. Tom does more night time tests that I as he is prone to swinging levels. As he quotes in his post - I am very easily woken and so will usually be up and awake when he is testing even if I didn't mean to be!

So why bother testing at 3am? My aim is to keep my BG levels between 4 and 7mmol/l, at all times. That's my aim. If my BG levels were shooting arrows, I usually land in the yellow/red/blue area. By testing at 3am, I can make sure that my BG levels aren't straying out towards the edge of the target. Some nights I have strayed way off target - usually due to something I have eaten or illness. Other nights I am sitting pretty in the 4 - 7mmol/l range.

But without testing, I can't tell where on the target I am. I'm always going for the bullseye. Some nights I am just not happy with the idea of going from 10pm to 6am without testing...I wouldn't go for 8 hours during the day without testing, so unless I have good reason to think I will be steady all night through (and again - plenty of nights I will go without testing if I have seen in the past few nights I am staying in range all night), I will be setting an alarm, and I will be testing at 3am.

I grew up in the age of bimodal (twice daily) insulin. My parents rarely did night time testing as the insulin kept me very stable overnight (which, having been told that - makes me assume at some point some night time testing was involved to clarify this). However, unlike the above commenter, I am not ignorant enough to sit here and think that technology and diabetes management hasn't changed since I was kid and that everyone is like me and will stay stable through the night. I want to keep my BG levels in range as much as physically possible so that I can write in 50 years and say I still have my eyesight, limbs and kidney function. If that means waking up at 3am most nights to test, I'm there. I am incredibly proactive in my care - however I do not think this means diabetes is 'living' my life as the commenter suggests. Diabetes is just part of me and I'd rather be taking the best care of myself that I can than leaving it to chance (and assuming because I have eaten supper my levels will stay in range all night...!)

The case of the missing carbs

Yesterday I had such a weird day. I stayed in decent numbers all morning. I had pasta for lunch, and planned to bolus over 2 hours then increase my basal to 150% for 8 hours after that (as suggested by Gary Scheiner).

Except...there was no pasta rise. Not at all. In fact, I went hypo, and stayed hypo (despite fast acting glucose and free carbs) for hours on end. It felt like every hour or so I was shovelling more glucose tabs down my neck. And still, no pasta rise.

What's even weirder? I had pasta again for tea (can you tell I made a huge pasta bake the night before...). I still didn't rise! I went hypo again! I spent most of yesterday after 4pm in the 2s and 3s. I was eating biscuits without bolusing and still dropping like a rock.

...and still no pasta rise, even after 2 lots of pasta that day. According to my meter, at 9.17pm I was 3.6. At 1am, I was 12.7.

So that's where the rise was!

I corrected that 12.7 via the pump (my brain was in no mood to work out active insulin + correction factor). At 6am I had risen to 13.2 and I was feeling pretty grotty. But at least I found the rise! 12 hours after the second lot of bizarre not to have had any kind of rise after the first one.

Monday, 15 November 2010

The cog is still in motion, apparently.

I'm not sure what prompted it, but today I received an email from my DSN Becky saying the consultant is keen to meet with me soon to discuss pump funding.

I can see one of three things happening:

1. he agrees to get funding for me
2. he declines to get funding for me
3. it's just a ploy to get me there and take the trial pump off me

Number 3 would not happen without a real, physically fight and the use of an anaesthetic of some kind...!

Hopefully going to see him either this Thursday or next; I will post as soon as I hear anything!

Monday, 8 November 2010


Guess who I found out now reads my blog?

My nan! Hi Nanny (and Bampy)!

I love the fact that my nan emails me, does text and uses t'interweb regularly. I don't think she's got onto food shopping online, but one step at a time eh?!

Sunday, 7 November 2010

Testing: just a snapshot of time.

I'm a sitter-on-the-fence in regards to CGM. The inaccuracies in the technology make me dislike the concept, but the one underlying and undoubtable feature it offers, from my point of view, is the reassurance it gives.

I don't have access to CGM technology, and when I did have access to it for 5 days, I was still hanging in the air if I liked it or not. What I hear is that the more you use it, the more 'in tune' it becomes with your body, and thus the more accurate the readings are.

Because one of my greatest frustrations with blood glucose testing, that stupid little prick on the edge of my poor fingers that I do time and time again, is that it is only a snapshot of what is happening *right* then. For instance, I'm 5.7 right now which is pretty damn good for pre-bed. But I've been at work - so will I fall a little? I have a decreased basal for the hour after work to allow my body to 'catch up' with itself, if you know what I mean --

but guess what I just checked? I was on the wrong basal pattern all day. It explains a lot...I have 3 basal patterns - day off, early shift, late shift. Yesterday I worked the early shift and must have forgotten to change over to the late shift pattern for today. D'oh.

I guess that means a 3am test to see where I am.

But back to my general point - BG testing only gives you an instant update. The beauty of CGM, so I hear, is that it gives a much wider picture. As I say, I appreciate it isn't 100% accurate and doesn't replace testing - but the overwhelming benefit I found was the reassurance of having some general idea of what the heck my levels were doing.

Sometimes my little brain just can't work out what to do with a BG of 5.7 and having been on the wrong basal and active insulin and having a snack before bed and having a lie in tomorrow and how do you even BEGIN to work that out?!

Saturday, 6 November 2010

'How do you do it?'

I was recently asked by a girl newly diagnosed with type 1 - 'how do you stay so positive with your diabetes?'

The answer: I think I would go blind mad if I didn't. I force myself to remain positive with it - or rather, I force myself not to be negative. We live with this horrible, stupid condition that I hate with every cell of my being and I wish I could get rid of (not just for me, but for everyone living with it).

I've heard Joe Solowiejczyk speak a couple of times now, and I love his attitude of 'it's okay to hate it' - the thing with living with a chronic condition, especially an invisible one such as type one diabetes, is that quite often people think that just because you've had it for a while, you're okay with it, you're getting on okay, it's not affecting you. Problem is - that just isn't true in most cases! Yep, we're 'used' to living with it - but that does not mean, in the words of Joe Solowiejczyk, that I wake up every day thinking 'whoopee! I get to wake up, check my blood glucose, carb count that meal, then wait 2 hours and test again! And then...I do it all over again at lunch!' - it just isn't happening like that.

I think I have an attitude of just getting on with it, and taking each day as it comes. I find a lot of people, and it's easily seen in children, also have this attitude. Living with a condition as unpredictable as type 1 means you have to adapt quickly to whatever your body is throwing at you.

Overall I am quite a positive person in general. I try to find the good in all situations (which winds some people up no end!) - so if I'm going to live with this stupid condition, I'm going to see all the positives I can. I love the diabetes community, and being 'part' of something.

For me, it would be very easy to constantly feel very depressed because of this stupid thing. And I do have my down days - I'm known to throw tubing across the room when that cannula has failed *again*. I have days when I just want to sit down and cry because of the sheer effort of living with a condition that is such hard work, and often doesn't yield great results, no matter how hard you try. I think that's the biggest thing for me - knowing that I will always be fighting this battle, a battle that can only lead by me (but I do have an amazing army of people behind me). Sometimes the weight of that is a lot to carry around.

Everyone has different ways of coping with things, and for me I am always trying to find a balance.

Thursday, 4 November 2010

The power of positive thinking.

I had intended to write a fairly upbeat post today, but today has been overshadowed by several things: a failed set (AGAIN), getting out late from work due to lazy members of staff, having a very painful back and realising that actually, I don't get a lie in tomorrow, I have to be up just as early due to transport issues.

Not a happy bunny :(

Wednesday, 3 November 2010

3 cannula fails, in a row.

Saturday morning at Friends for Life, and I was supposed to be going to a talk being given by Gary Scheiner ("Strike the Spike" was the name of the talk).

Except, I'd done a set change that morning and my levels had shot up into the teens despite a 170% temp basal for 2 hours. Tom (who features in some of the photos in my previous posts!) found himself in exactly the same position. We decided to change sets, again, to get things back on track.

I took out my cannula, to find it very bent. Tom took his out and blood squirted everywhere...he'd hit a vein or something! New cannulas in, correction in, off we went.

Only, we didn't. Now, please don't ask me why I didn't correct by pen earlier; truthfully, I don't know. I should have, but I didn't, and I can't answer why I didn't. In a way it just didn't occur to me.

I continued to rise, hitting 19.0 (342). I changed sets, again (so set change #2 of the day). And put in another correction. Only, an hour later, I was still on the rise, hitting 22.0 (396) at 12.30pm. By this point, I was feeling very sick and clammy, and according to one of the mums there I looked "very grey and ill". Mmmm, nice. Not. I'm guessing by that point I was ketotic.

I whacked in 10 units by pen, and changed sets again. I went slightly overboard with the 10, but from my past experiences I know that when ketones get involved I need to get a LOT of insulin in, pretty quickly. I took a short nap through lunch and by the time the afternoon sessions were up at running I had dropped to 6.9 (in an hour!). That's a massive drop (although it felt so good to be back in range), so I had some more carbs *cough*a chocolate bar*cough*. I sipped on some low-carb (5g/100ml) drinks over the next couple of hours and dodged a hypo.

Finally set #4 worked. Just for those who are curious, the first 2 sets that failed were Medtronic Mios, and the third was a Medtronic QuickSet. The fourth one which worked was also a QuickSet. It was a really rough morning to be honest, and I really hated diabetes for preventing me in taking part in the conference that morning. Part of me had to see the irony that I had a huge diabetes cock-up at a diabetes conference, though!

Tuesday, 2 November 2010

"We don't live to be 'diabetic', we live to dance on the beach."

Here are a few more photos from this past weekend at Friends for Life:

This is one of my favourite photos from the weekend. E and I comparing pumps! Well...we have the same pump. E is 3 and is one of the cutest kids I have ever met. Whilst it was great fun having our photo taken together, a part of me felt sad that another child's life was affected by d, and how I wished I could take it away from all the children there.




So, a few comments about the event and the experiences we had there. The lady who was running the Medtronic stand on Friday evening I found to be very rude - I walked over holding some Animas leaflets and she questioned me, "why are you reading Animas literature? Stick with Medtronic" - I realise she is essentially a saleswoman but hello, I'm the consumer and you've really just put me off speaking to you!

On the other hand I found the Animas reps incredibly friendly and open. They gave both Tom and I free One Touch machines to try and to review (review will be in a couple of weeks when I have had chance to play around with it!). They also gave us 2 of their 'comfort' infusion sets each to try out (they are compatible with Medtronic pumps when you use Animas reservoirs with them).

I hear the Animas 2020 is looking to become compatible with the Dexcom 7 which has recently become available in the UK (and if I win the lottery, I will be buying one...dream on, Siobhan, dream on!). Whilst I realise that I will probably never get funding for sensors, nor will I be able to self fund them, it's nice to think that the option would be there in terms of the technology.

Cellnovo were an interesting bunch. I had heard about the product a few months ago but hadn't heard much more about it since - so it was great to see them there. In essence, the pump is much like the Omnipod in that it is a pod of insulin - however, it has tubing and a cannula which are seperate from the reservoir of insulin. It it held on to your skin by what is basically velcro. It is controlled through a very nifty looking handset - it looks much akin to an iPhone or the like. Very easy to use, bright, bold colours, generally a nice piece of kit. The downside being of course that if you lose the handset, you can only receive basal insulin. They assured me that if that were to happen, a new handset would be sent out within 24 hours. The other thing we noticed was that the bolus and basal increments were relatively large compared to other pumps out on the market and so would not be good for little children who need tiny amounts of basal.

They reckon they are going to clinical trials in May 2011 and are aiming to be out on the market by the end of watch this space, I suppose! On a sidenote, and something really cool - I filled out a feedback sheet for Cellnovo and was told I would be entered into a competition to win an iPod Nano...which I did! That was a very pleasant phonecall to receive.

Also there was the patient advocacy group, INPUT. They help patients get better access to pumps, they campaign for better access, so on so forth. Ultimately though they are awesome because they care, and they really do do their best to help people out. I told the lady there the whole story of my fight to get a funded pump, and let's just say things are about to get moving, big time.

With that in mind, I started to really look at the Animas pump for the first time. I have always said I want a purple Medtronic Veo, however I have to say I think I have been swayed over to Animas. It has the same technological features, such as the small amounts of basal. I found it easy to use and liked the clear screen. But I can't get carried away with myself - I haven't got funding yet.

All in all, it was a fantastic experience. I loved knowing that my experiences, having grown up with type 1 diabetes, were helpful to other people (such as the man who queried how often he should expect his son to have a severe hypo - aka one that means you need help from someone else. I told him in almost 20 years I have had maybe 3 or 4 like that, and that whilst obviously it is a big risk it may happen, you have to put things into perspective. From what I gather, he was very grateful to hear it). I'll definitely be back next year, I'm saving my pennies already!

As an end note, the quote I have used for the title of this post comes from Jeff Hitchcock who runs the Children With Diabetes charity. He said it during his closing speech, whilst showing a photo of his daughter, who is 23 and has type 1, dancing on the beach. He covered some very moving things, such as the 'dead in bed' syndrome and why that's a good reason to let your person with diabetes always sleep with someone in their bed (it was when he said that that it all became a little too real, a little too close for comfort).

But ultimately, that's the truth: I have diabetes. I don't wake up everyday to 'be' diabetic. I wake up being the person that I am, and hoping that I will have my dance on the beach.

Monday, 1 November 2010

Friends for Life UK 2010

This past weekend I was lucky enough to attend the Children With Diabetes UK Friends for Life conference. There are no words to explain how fantastic the conference was and how much I enjoyed it (let's just say I'll be at the front of the queue for a place next year!)

Tom and I with Rufus!
We arrived on Friday night, settled in and began meeting all the parents I'd been speaking to via the CWD emailing list for so many months. That evening there was an official welcome, which included a stand up comedy routine from Olly Double (who has a comedy DVD all about diabetes! Read about it here) - absolutely hilarious, it had all of us in fits of laughter.

Over the course of the next 2 days we heard speeches given by various people - Gary Scheiner, Joe Solowiejczyk, Fiona Campbell to name a few. All fantastic, ranging from carb counting tips to helping deal with d as a family.

Joe S and Tom aka werewolf and vamp!
The halloween party was a great evening. Animas had brought along an excellent facepainter and she did a fantastic job ghouling everyone up!

In terms of companies there, there was Medtronic, Roche, Bayer, Animas and Cellnovo.

We grabbed as many freebies as we could carry - lots of glucose products from the US (don't think I'll need to buy any more dextrose for a good year or so...) including watermelon flavoured glucotab type things! Amazing...and here we are in the UK happy with our orange and raspberry variants! I also picked up a free OneTouch meter from Animas, a pump pouch (in the shape of a dog!) from Roche and lots of different logbooks from the various companies.

I have a few other photos I want to put up, but I'm awaiting permission from the children's parents.

I'll end with this: Tom, Gary Scheiner and I at the halloween party.
Not only is he the carb-counting king, he wasn't all that bad on the dancefloor! Thanks to his wife for taking this photo for us.