Sunday, 24 January 2016

Pumps

I feel like I have a little bit of a rant coming on. I want to tell you all about my experience with an insulin pump. I have had an insulin pump for a little bit over 4 years and I can tell you it has been a love-hate relationship. But I realise that I'm fortunate to have this special bit of technology attached to my hip 24/7 because a lot of people don't get the chance. Diabetes is a disease that is very much up to the patient to control, I say we're in control, but sometimes we're not...a lot of the time it's not up to us what methods we use to control our diabetes. Insulin pumps are an example of that! I have an insulin pump, but someone else can't have one because of the NHS or whether or not their hospital covers pumps or whether or not their consultant will let them.

When I asked for an insulin pump over 4 years ago I was sick and tired of injecting over five times a day. I was running out of places to inject, I was tired of my thighs stinging from levemir and I was getting lumps under my skin. On the day I was diagnosed I was told- "Don't inject in the same place just because it hurts less...the insulin will collect under your skin and it won't absorb"- However I started to do just that- injecting into the fatty deposits was far more favourable than scouring all over my injection sites to find somewhere that hadn't been punctured a million times before, hitting a nerve was almost always what happened too. To sum it up being on injections can become a painful and tiring way to control your diabetes, and I wasn't prepared to spend a minute longer stabbing myself multiple times a day. I was done. So I was put on the list, and I got my insulin pump.

I had an appointment at adult clinic earlier this month, and one of the questions as part of what seemed more of an interrogation than an appointment was "Why did you get an insulin pump?" and I looked up and said "Because I was tired of injecting over five times a day" and the consultant looked so baffled, as if I had just said the wrong thing, I didn't realise there was a correct answer to that question. He then informed me that people often only get pumps if they have a high HbA1c or if they really "need" one. And I laughed, and I didn't really have an answer even though looking back I wish I had said more than "oh". Because what is the definition of  "needing" an insulin pump? Was the definition of needing an insulin pump not a 14-year-old me, almost in tears at every meal time at the thought of having to do yet another insulin injection? Was it not 14-year-old me often not wanting to eat just to avoid an injection? Apparently not.

I know people who have had their insulin pumps taken away from them due to "non-compliance" one of my closest diabetes friends being a prime example of this. Except, she was "non-compliant" a few years ago, she got her pump taken away from her and these days, she does everything she can to keep her blood sugars under control but still, she hasn't got her insulin pump back. I strongly disagree in taking an insulin pump away because of a high HbA1c...(that also leads to the question, why do people only get pumps if they "need" them for a high HbA1c, if equally they get taken away for a high HbA1c and only given back on a good A1c? Hmm...) It's negative reinforcement. And from what I've heard from everyone's experiences it doesn't work. It has the opposite effect. What's the point in throwing the toys out of the pram and saying "Right, I'm going to take your pump away from you because you can't control your diabetes" What is the point? To punish them? To punish someone for not achieving the national targets of a disease that is at times such a mental battle as much as a physical one? Why not figure out why they're not using their insulin pump in the way it should be and go from there.

I have struggled immensely with my diabetes...I have had pump downloads where there have been no boluses going on and hardly any testing. Not once has it been said to me by my team "We're going to take your insulin pump away from you." All that has happened has been efforts to figure out why my diabetes isn't under control, and for that I am very grateful. In fact, I have been the one in charge of whether or not I stay on my insulin pump over the years. I know when I am beginning to slack with my diabetes control, and I know when I am not utilising my pump in the best way possible. So on more than once occasion I have said to my consultant that I'm going to come off of my insulin pump and go back onto insulin injections. I took my pump off, transferred everything over to insulin injections again and got my diabetes back into control. How it worked for me was that I knew with injections I couldn't skip an injection...I skipped boluses at times because I had the safety blanket of my background insulin to keep me from going into DKA. So, going back onto injections kept me giving insulin and eventually I got back into that routine that I started slipping out of with my insulin pump...I then put my pump back on, feeling refreshed and ready to conquer my blood sugars again. I did that on my own terms- forcing me to give my insulin pump up wouldn't have had that effect on me.

The question of to give people an insulin pump is always going to be debatable. My take on it is if you want an insulin pump, you're eventually going to need one. The mental side of it alone warrants that. If someone is having a rubbish time on injections, and is starting to slack then they're eventually going to need an insulin pump to curb the inevitable rise in HbA1c...why wait for a HbA1c in double figures to then turn around and say actually yes, you need an insulin pump. And I know probably some of the things I've said in this blog might be debatable but as a person who has had experience on both a pump and injections and having struggled with diabetes control, that is my take on it.

I could go on for a long time ranting about this, but that's what I have to say so far. Why are insulin pumps such a debatable thing? Why is something that could improve people's lives with type 1 diabetes immensely so questionable? I know they're expensive but they're often necessary and so helpful, and it's a shame that some people don't even get a look in.

-Ellie

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