10 May 2012

CGM: It's a love-hate relationship

So I am currently on day 3 of the continuous glucose monitoring, and although for the past two days it has been a very happy union, right now I'm counting down the days until I can get a divorce! Because the very reason I love the CGM is also why it pushed me this afternoon to the borders of insanity - a) it catches everything but b) what it catches isn't always accurate!

Maybe I am alone in this experience, but the medication you use eg: meters, sensors and of course the insulin pump - they can provoke quite strong 'human' emotions! Ever since I got my insulin pump I've become quite 'protective' of it (it even has a name 'blue' - in my defence chosen when I was ten!). As much as it can be (unfairly) subjected to many tantrums and not so mild expletives, at the end of the day you could call it my 'saviour' - (as cheesy as the sounds!) it has made my life so much better, and did 'save' me; I was very ill before I got the pump, and it was basically the 'last' option. The same I've found is also true, to a certain extent, of my BG meter. When I got the CGM for the first time, it was so scarily accurate that I looked on my meter as completely useless and couldn't imagine having the sensor only ocassionally, to help adjust my underlying basal patterns. However, the second sensor I did last October woke me up to the reality that the sensor isn't perfect! Those of you familiar with the sensor will have experienced the arrows pointing up and down next to the reading, indicating what way you are 'headed'. You can also have the option of "predictive alerts", which is basically code for '"let's give you 0 hours sleep and make you completely paranoid!" That October I was woken up the first night  no fewer than 6 times by what sounded like a fire engine; my pump telling me that my blood sugar was below 2.2 (40) - tested on my meter and it was 6 (110)... I instantly felt an overwhelming sense of guilt for 'rejecting' my ever loyal meter, and if I'm being honest, in my sleep-deprived state also felt quite betrayed by the sensor! The predictive alerts were swiftly turned off, and I spent the next day furiously trying to calibrate the sensor with my meter, to no avail.

When I finished my first box of sensors, there was an issue with supply which meant that the next box didn't arrive until April (5 months later!). The one I did a month ago was another disaster, so I was reluctant to try it again soon after that. However, a combination of my AS Levels being next week and my supply of testing strips rapidly running out (I test far too much - paranoid diabetes!) meant that I decided to try the sensor again on monday. And what followed was two days of diabetes 'heaven'- whilst my meter told me I was 11 on  the first day, my sensor told me I was 8 and dropping, so Mr meter was once again relegated to the passanger seat with his 'inferior' data. I've loved being able to 'stop' hypos and highs through seeing the graph. Although, I don't have the predictive alerts on as I cannot be doing with lack of sleep at the moment, I've got the setting called "rise/fall rate", which tells you if you sugars are rising/falling quickly; however, that is the thing which caused our very big falling out today.

I Woke-up, everything was great. BG normal during the night for the first time in ages (not one single hypo). However, it had gone a bit high mid-morning - up to 13 (230) - and normally I wait to test about 2-3 hours after breakfast because it comes down naturally by itself, so this just made me unecessarily anxious and guilty, the feelings I normally get when faced with highs. Nevertheless, like I said it came back down without a correction bolus, and by lunch was perfectly stable. When I went to do my lunchtime bolus though, I panicked when I saw what I thought were air bubbles in the tube, so I disconnected just so I could see more clearly. Turned out it was just a trick of the light, but when I went to connect again it just wouldn't connect - the cap wouldn't screw on. This has happened a few times to me before, and I have no idea why, but it meant that I did a mad sprint to the other side of the school to the medical centre to change my set (+ a lot of stairs, but good way to compensate for the lack of insulin!) and I had 10 minutes to go before my English lesson at 2pm. By this point I still hadn't done my lunchtime bolus, and the nature of the pump is that your BG rises very, very quickly if you're not connected, as all the insulin is novorapid fast-acting; this meat I was panicking A LOT! The medical centre was an uncomfortable experience in itself, where the nurse seemed to find it necessary to stay and watch me do my set change and practically refused to leave the room, although I kept throwing not so subtle hints! She also felt it necessary to ask the question "does it hurt!?" just as I clicked the inserter and went to take out the needle, and then commented on how I "flinched" when it went in...! Good to know - does she want to try it then?!

Regardless, set was in and I felt calm after my initial panic, and I thought to myself: the advantage of this sensor is that I'll be able to see quickly if my set isn't working. My english lesson just after was therefore spent with my eyes fixed on the graph, waiting for the 6 minute 'update' from the sensor. It had gone a bit high (11) due to the delay in my lunch bolus, so I had to watch everyone in my class eating the cookies I'd baked the night before, staring longingly at the box! (Wasn't willing to risk it though!) BGs were good though, bobbing along at about 8 (140). By 3pm therefore, 1 1/2 hours after the set change, I was confident that the set was working, and therefore proceeded to walk into town as I needed to buy some last minute exam supplies (bulk packs of black biros, and for my lucky meter his own clear pencil case - exam regulations!) Half way down to town (it's about a 15 minute walk ), my pump starts screaming at me and what do you know - the sensor says my blood sugar is 12.7 (240)  with, not one, but two arrows pointing up...! So I sprinted the rest of the way, into the nearest starbucks toilets to wash my hands and then test my blood sugar - 6.7... I thought, that can't be right, so re-tested (with my last strip, as my hands had been shaking so I had had about three 'false' tests - blood sample wasn't big enough) and it was exactly the same. This meant that, not only had the sensor lied to me (and in my agitated state that was something I took to heart quite strongly!) but I'd run out of the test strips I had been rationing, so had to go to boots and pay £30 for a new box - thanks for that sensor! It really does make me realise how much I value the NHS in getting this on prescription, but also a lesson learnt that I need to stop testing so much! (What infuriated me though, was that I genuinly felt 'tricked' by the sensor - one of my main motives for doing it had been because I knew my strips wouldn't last me until my prescription came.)

So all in all, my sensor is being given the silent treatment right now, and I've made sure to test again this evening to make sure it's calibrated ok - it's still a bit off kilter, now too low! What I have learnt is never to 'trust' the sensor whole-heartedly though. I admit I am very fickle, as  for me my loyalties will lie with whoever (meter or sensor) gives me the most accurate information - or maybe, if I'm being truthful, the information I want. The sensor doesn't hide anything. As great as it is to be given a complete 'video' as opposed to the meter's 'snapshots', in order to help adjust basal patterns, I don't think I could survive in a long-term marriage with CGM. I confess I am a complete control-freak with BG readings, and it is very easy to become obsessive. I know it's the reason I'm such a perfectionist in life - people can laugh at me and think i'm "attention-seeking" for never believing 19/20 is good enough, but that's because I spend my life chasing  'perfect' numbers, and always seem to fall short. The CGM just highlights this I guess.

Not that I'm condeming the CGM in any way. I'm sure tomorrow we'll be best friends again and all will be forgiven. I think, though, I don't give my meter enough credit, in terms of its pros. At least I can choose when to test. And of course  I will always test when I have low/high symptoms - I won't 'avoid' testing to make my readings 'appear' better, as I don't see any point in sugar-coating - but I can still have a life! The picture on the right (showing what happened this afternoon), for example, is enough to drive anyone crazy, and looking at it I would naturally think my set must not be working - it really panicked me, and did make me feel like I'd 'failed', and all too common feeling with me and diabetes. I don't think it's good or 'healthy' for me to spend everyday with eyes fixed on a screen, chasing something which, being the perfectionist I am, will always be unttainable and never quite good enough. You can never have 'perfect' diabetes control, and I think that's something I need to remember and accept. I'm glad I've got the option to do CGM, and I've definitely already gathered data which will be useful (for example I know I might need to cut my basal back before lunch, and maybe put my breakfast bolus in earlier). Overall though, I think the meter is better for me day-to-day - yes it's not quite as 'up-to'date', but it works for me. Everyone is different after all, and no two diabetics can be placed into exactly the same box. For me, it's about finding that balance between control and acceptance , and I think slowly but surely I'm getting there. It will never be perfect, but then is anything in life? It's about making the best of what you've got, and to always try and do it with a smile on your face - even on my worst D-days, I remember that tomorrow is a new day, and one that I will face stronger with diabetes alongside me, not against me.

*Oh, and just checked the CGM graph for the last three hours:

I think all will be forgiven sooner rather than later! :D

Fingers crossed for the next couple of days that diabetes will be nice and considerate for my revision - that would be a first though!

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