Tuesday, 1 February 2011

Looking back: A year with a pump at my side

There are many things which will change your life. Literally. Choices you make and experiences you encounter can be both the making of you and the breaking of you. Perhaps these milestones are different for all of us, or perhpas we share many of the same. For those who have children the moment you conceived was no doubt a moment that changed the path of your life forever. For those who travelled, maybe the things you experienced while emersed in another culture will be the motivation that underpins some of your most crucial decisions in life. Perhaps a particularly good - or bad - relationship has changed the way you view your life and the expectations you hold because of what you learnt about yourself. But whether we all share the same 'moments' or not, one thing is for sure: For each and every one of us there are moments - not just one - but many, that change your life somehow, be it for better or worse.

For me, one such decision began to emerge in my mind in 2009. A seed - tiny and barely nurtured - was planted in my head while I was on a JIGSAW (Juggling Insulin for Goal Success and Well-being) course and involved something about an insulin pump and how useful they could be when you suffered with poorly controlled diabetes. Something which at the time, I rejected without a second thought. But this one little idea began to gather momentum and cause the curious button in my head to need pushing. At first, the thought of an insulin pump with its crude wires and constant glaring presence was something which repulsed me. Even disgusted me, dare I say it. How, when diabetes had already drained so much of my life could this BOX (!) solve any of my problems?

But that's the funny thing about a seed; even in the most harsh and hostile landscape a seed can flourish and develop into the the most breath-taking of plants.

That seed, nestled in my hostile head surrounded by negative thoughts and stubborn ignorance began to flourish. With the wonder of the internet at my fingertips, I nervously started looking up images of insulin pumps and finding forums to piggy-back on and see what people were saying about these pumps. Pretty soon, I stumbled across a blog which would water that seed in my head. This blog was written by a lady I could really associate with. She was my age, she was also diagnosed in 1986 and she was pregnant, which when it came down to it was the only reason I was willing to give this contraption a go. Because one day I wanted to bring a child into the world with the man I had come to love. This blog, was Six Until Me.

This blog was honest, open, beautifully written but most of all, real. The stories Kerri told were not about the horror of wearing a pump or the restrictions it placed on her life. In fact it didn't sound at all like she was mourning the loss of a former life, which was the way I felt when I thought about the pump. It talked of fashion, friends, the diabetic community (something I too was about to stumble on), the promise of a future and of the creation of a new healthy life - one her readers came to know as BSparl (her kiddo!).

It wasn't long before that button in my head began to throb again.

Push me, PUSH ME!

I'd estimate it was about a week after that I first emailed my DSN with a million pump-related questions in my head. My new found fascination with an insulin pump had begun. And once the idea was there - I wasn't about to forget it.

On the 25th January 2010, my life changed forever.

Attaching the pump initially was - I imagine - like watching a monkey use tools for the first time. I was 'all fingers and thumbs', shaking a little and convinced I was doing it all wrong. For the next 24 hours I had this immense awareness of my new pump, almost like when you get a new phone which barely leaves your hand - let alone your handbag - for the first few days after you get it. I started to navigate my way around the menu learning at the speed of light about boluses, basals, daily totals and carb ratios. I imagine you would learn slower if you joined NASA or MI5! But nevertheless, something which only 6 months before had terrified and repulsed me, became interesting and engaging. I started talking to my friends and family about the pump, tricking them into guessing where it was hidden today, because unlike my mistakenly ignorant first impression, the pump can be hidden, isn't a monstrosity and doesn't take over your life.

But no one can go through this alone and surrounded by my team of supporters, I began to explain the pump to anyone around me who would listen. My fiance, who had to earn his degree at the University of Insulin Pumping pretty darn quick, took this challenge in his stride, learning terminology like cannula, bolus and "Darn, I didn't re-fill before we came out!", quicker than you can say 'I love ya'. My mother, who for years held me up when I couldn't manage myself, took delight in hearing that I was reaching my pre-pump goals for the first time in 20 years. My friends, who I have no doubt were intially freaked out by the idea (mostly because their faces told me just that), could not have been more supportive or accepting, when it came to me whipping an insulin pump out from my chesty area!

Before long my own blog, one which began as a project to help me negotiate the psychological and emotional adaption that life on a pump requires, began to connect me with my own diabetic community. It led me to the Diabetes UK facebook site, which in turn led me to some of the most talented, creative, positive and go-getter type people you could imagine. Some shared my story, some had a whole different perspective on things. Either way, I went from being someone terrified and beaten down by my own condition, to someone feeling more in control than in the previous 23 years of having diabetes. I began to learn that blood glucose testing didn't have to be about pot luck. I began to learn that waking up in the morning having had a good night's sleep without hypos, hypers, loo visits and fridge raiding, was something everyone - even me - could expect. No, could demand!

I also began to learn that I was allowed to have far higher expectations of what my range of blood sugars could be. When people used to tell me that us diabetics should be aiming for 4-7mmol (80 -120 mg/dl) I would have laughed (and cried a little, inside), because in my whole adult life I had never had a day, let alone a week when I had acheived those kinds of numbers. At my very best clawing at 'control' with every last shred of energy I could muster, I had never achieved an HbA1c of less than 9.6%. Within 6 months, this had fallen to 8.2%. And I use the word 'fallen' because I wasn't doing any more than normal. Granted, I had begun doing more tests, but tests alone won't change anything. This, had happened simply as a result of my pump. My last A1c was 7.9%, and with the kind of readings I have been having in the last 2 months thanks to adapting my diet to a lower carb system, I have every confidence in the world that my next A1c will be in target.

The last year of my life has been a roller coaster. I have learned about the triumphs of conquering goals I thought were impossible to reach and how it feels to give diabetes a swift kick in the stomach, just as it did to me for all those years. I have learned about the pitfalls of kinked cannulas and packing for holiday with what feels like the worlds biggest collection of diabetes supplies, just in case armageddon comes a knocking.

But the greatest and most significant lesson I've learned, is that there is a vast community out there experiencing all of those highs and lows that kept me in a dark and isolated place for so many years. The friends I have made in the last year and those relationships strengthened by people's acceptance and even interest in this pump and how it has changed my life is a lesson that has changed my life forever. And for the better, much, much better.

I can only hope that the next few years of my life, as I plan my own family and move on into new and daunting challenges, will bring me even half as much knowledge and excitement as the last year has. I can only hope that my circles of friendship will expand beyond those I have already found. I can only hope that this disease which for the first time in my life I feel I have conquered, will bring me as much as it has in the last year.

I am thankful that I no longer feel like the pump is a contraption, a box or a hindrance. Quite the opposite in fact, it is part of me. It is a significant part of me, as it has helped me have the quality of life I deserve and has allowed me to grow, flourish and enjoy life again. I am also thankful that having just passed two enormous milestones, those being 24 years of having diabetes and of having celebrated my first anniversary of joining the 'pumping club', I can honestly say that the latter came from one of the best decisions I ever made.

I am thankful for what I have discovered, conquered and experienced - even in the face of the adversity that comes with this condition.

My condition.

Our condition.

1 comment: