The first time I was offered an insulin pump must have been around 4 years ago, in early 2006. I had been off work for 6 weeks, because I was going through a period of what the pros referred to a 're-diagnosis'. You see, the problem was, I was diagnosed at four years old. At such a tiny age, I had very few (indeed, if any!) memories of what life was like before I was 'taken over'. I lived out my child years being closely monitored by my parents, who, despite the challenges they faced, managed to keep my BS well in check.
During my teens, as I got too old to be 'monitored' and became more independent, the control started to twindle. I rarely did blood tests and if I could help it, avoided all appointments where I was constantly reminded about the gravity of the disease. So when I hit my twenties and wanted to think career, children and travel, I decided I needed to pay far more attention to what was going on. I emerged from my cave of ignorance and tried to change everything at once. I excercised every day, tested more often than anyone could ask, changed my diet and made enough appointments keep me busy for months. Only there was one problem; for the first time in my life, I really learned how much diabetes takes to control. Before I knew it, I was obsessively testing, achieving awful results and becoming so stressed, I had to go off work on long-term sick. In total, the six weeks I was off held more desperation and devastation than I had ever known. I would test first thing in the morning and staring back at me from the BS reader, the angry screen would shout "21.7mmol!". How could this be? I haven't even eaten yet and had only just woken up, and still I felt like I could drink non-stop from the kitchen tap for six hours, and would still need more water thereafter.
For the first time in my life I was terrified about my future, and couldn's see a point or reason to try. This was the first time I was offered a pump.
"Are you serious?"
I was at my lowest point in life. I felt trapped by a disease I didn't deserve, and had convinced myself that I wouldn't last long. Yes, as a diabetic, I COULDN'T last long. The thought of living out whatever short life I had, attached to a pump with wires trailing from places I didn't want to think about was to me, too much.
The next time I was offered a pump was about a year ago. I attended a course which was designed to provide diabetics with the tools they needed to be able to achieve better control. At the end of the course, although it was informative, it didn't seem to make a difference. My A1c was still 9.5% and I didn't feel any more in control.
All I had to do was say that I was interested. I was given a start date, an idea of how many other people would be on the course with me, and got to see what the pump looked like.
That was it. A year later I've been on it two months, can't believe some of the results I am getting, am happy, in control and shocked at how much more I am getting for the effort I put in.
The pump was offered to me with enthusiasm and an 'of course you can' attitude.
So why is it that while I read the comments on the diabetes UK website, so many people are being told flat out that they can't have a pump. "There is a two year waiting list", "Your control isn't bad enough". How can this be the way the world works in 2010! There are desperate mothers and fathers trying to find a way to extend their lives and make themselves healthier for the sake of their kids.
The insulin pump has been available in the UK since the turn of the century. How is it possible that people still have to 'prove' they are poorly enough controlled to warrant a pump. It seems to me that it comes down to a postcode lottery. Some people, like me, are able get a pump even after turning their nose up at it, while others, who are asking to go on it at every opportunity, are still refused on the basis of funding - surely the cost of dialysis, sight problems and amputations outweighs the cost of pump therapy?
It makes perfect sense to me now, why injections didn't work for me. By body needs changes in insulin between one hour and the next, as little as 0.1u/h. So during the night I need 1.4u between 9pm and midnight, then between midnight and 7 I need 1.3u/h. How I ever survived on one injection every 24 hours, where I injected 24 units and waited for it to slowly 'wear off', I will never understand.
By no means is my control perfect now, but the fact that 87% of my sugars are in single figures, where I only used to have sugars in target 13% of the time (yes I admit it, the control was awful!), shows that injections could never have worked. It baffles me that despite the overwhelming evidence that pump therapy benefits most diabetics (pump therapy is a lifestyle choice - that much is true), the NHS still struggle to find the funding for people who are willing to make that choice. I know it isn't the fault of the professionals, or at least that's what I hope, but as a diabetic and a pump user (and a happy one at that!), I feel a sense of guilt when people ask me how I got a pump. I feel embarrassed that I turned it down. But I guess I know that for me, it wasn't right four years ago. The effort I have put in to testing, monitoring and experimenting, means that in the midst of my 'breakdown', I simply couldn't have taken any more. My time was now.
I truly hope that things begin to change and that others will be able to go on the pump. After all, why should wanting to look after yourself be stopped by funding. To me, that is just politically incorrect!