23 June 2012

Hyper-Alert: The Failed Set Change

99% of the time Mr Insulin Pump (aka Blue) get along like a house on fire. What's not to love? He's conveniently keeping me alive without the horror that is five injections a day and absolutely rubbish control, so on balance I very rarely find fault with him.

However, there is one flaw in the whole insulin pump system that doesn't occur with injections... a failed set. With the injections there is this greater sense of control because  you know the insulin is going to work - going to get there. With the pump, on the other hand, the few hours after the infusion set change  is spent waiting with bated breath, hyper alert... literally! Because every once in a while, about every two months average, something will go wrong and the insulin won't be delivered. Most times it is to do with the 'site' - every pumper will  most likely have had some trauma due to this word! I put my sets in the bottom-side of my back, which strictly speaking gives quite a big 'land-mass'! But scar tissue does build up, especially as in the last three months or so I have avoided putting any sets in my left side, as they never seem to work. Despite my best efforts to vary the site of my set as much as possible, if there is a failed set the problem is normally revealed once it is removed - either there will be blood in the tube (delightful!) or you can see a slight dent in the tube.


Early Thursday evening I had changed my set, and went to bed at a happy 7.8 (140). I woke up at about 1am feeling a bit thirsty, tested again and it was 12.3 (221). After gulping down two cups of water (should have suspected then!) I did a 1unit bolus correction and assumed that it must have just been my dessert of strawberries kicking in later (a rather naive belief, in hindsight, but I was tired and just wanted to go back to bed!). At 6am, however, I woke up with that horrible feeling every diabetic will know... like you haven't drunk a drop of water in a week and on top of that the horrible feeling that you are about to be sick. So I tested... 17.8 (320) - and I'm pretty certain that I caught it at the point where my blood sugar was accelerating upwards at rocket speed, and am certain it in reality was higher - in the 20s. Dragging myself to the bathroom to get a new set out of the draw, I instead ended up being sick and had to shout for my mum to go and get my insulin pen.


I was lying in bed and it took all my energy to give myself the injection. The worst thing is that part of it feels like an out of body experience - I can see by my mum's expression how worried she is, and at that moment in time I am literally helpless. I couldn't have walked downstairs to get my pen, my poor mum had to hold my hair while I was sick into a bucket. It's quite sobering, really, seeing how 'little' I can become, if that makes sense. I am this person who is so lively and 'full of life', so to become that little girl again who quite literally cannot do anything for herself, but simply lie there and wait for the number to come down; it's horrible. I didn't get out of bed to change my set until 10am - the 4units on the pen kept me going until then - and then I stayed in bed until 1pm before I felt like I could eat anything and keep it down. Normally I'm quite resilient with this - if I catch it early enough in the night I can be in school by break, but I ended up taking the entire day off, very unlike me. Maybe it's because I have quite a lot of hypos now, so the highs feel worse? At any rate as much as the hospital/doctors don't like hypos (and I understand why as they can be very dangerous very quickly), for me they are nowhere near as horrible, scary and demoralising as highs. Highs are a list of cant's for me. You can't eat until it's normal (many times I've watched my mum eating dessert; cake; as I've had to sit and watch with my glass of water); you can't think properly - even not being able to do my homework, that is frustrating. Because it's what normal people should be able to do, and it's a bit like D's way of throwing it all back in my face. At least with hypos you can have those moments of D-rebellion where you'll have ice-cream WITH chocolate raisins...!


It is the one really frustrating thing about the insulin pump - although it's needle free (most of the time!) you are so reliant on it. Because there is no long-acting insulin, like the levimer or lantus, you need it pumping insulin in 24/7. With me, I have absolutely no insulin produced by my body naturally, and if my pump is off for even a couple hours or more, my blood sugar just shoots up. That's why I always change my set ideally as soon as I come in from school - not just before a meal, or just before I go to bed. I just wish it didn't happen, that's all. This hadn't happened in such a long time, but it's horrible hearing my mum say that evening how 'ill' I looked - how worried she was again about me going to stay with my uncle and cousins for a week to do my work experience in London. I don't want her to be worried; I want to prove that I can do it. But she is right I guess - I needed her that morning, and part of me is anxious about losing that security net at University, and not being able to cope on my own. I am trying so hard to keep it all together for a year's time, to learn how to be independent, but it is difficult. Diabetes will throw you around when you least expect it, taking you along for the ride and never truly letting you sit in the driver's seat - D doesn't work like that; whilst I want independence he's not too keen to give his up!


I'm not going to let it get me down though - my blood sugar's have been stable today, and you've always got to think that tomorrow is a new day. I found this really great saying today: "failure doesn't mean you're a failure. It just means you haven't succeeded yet." I know one day I will succeed. Not because my blood sugar will be perfect, or because I work out a way never to have another failed set or high again. But because I will learn to deal with it and accept it. To not let it get me down. It still does at the moment, but I'm just going to stay positive - keep smiling - because if I do that then D can never win.


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2 comments

  1. This is what I have been searching in many websites and I finally found it here. Amazing article. I am so impressed. Could never think of such a thing is possible with it...I think you have a great knowledge especially while dealings with such subjects.
    type 2 diabetes

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    1. thank-you so much, one of my main motivations in sharing my story was the hope that it would benefit others in some way. This means the world to hear this.

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