Saturday, 26 February 2011

A rest is as good as a change

I consider myself to be someone who is normally pretty much on target when it comes to my diabetes. I manage to walk the fine line between paying close attention and obsession on a daily basis with relative ease, which helps me to achieve reasonable control of this confusing and sometimes almost comical condition. I have done this for 24 years now and it almost seems normal to me. As normal as type one diabetes can be anyway!

I haven't been sectioned yet (I must stress the word 'yet', it can't be far off these days), despite the constant calculations, second-guessing and sometimes sheer frustration that diabetes can throw at you, especially when it feels like Freddie Flintoff has just bowled a 90 mile an hourer at you while someone else distracts you with a giant Krispy Kreme. I am not someone who claims to have 'perfect' control, whatever that really is is. And I am not someone who says control is easy - because frankly - those people drive me crazy. Either they are lying or they are very, very, very, VERY lucky. I am not sure which of those I prefer to believe, but part of me hopes they are just lying. At least that way I may not be perfect, but my honesty is something I can be proud of, even if it means admitting that sometimes I get it wrong. Very, very wrong.

I have rambled on in the past about how I can have a bit of a Jeckyl and Hyde thing going on at times and unfortunately this week was one of those weeks. More so than ever. I have been managing blood sugar swings I imagine similar to that of an out of control sugar-crazed Oompa Loompa at Mister Wonkas factory. Before I went onto an insulin pump, I could see blood sugar swings in any one day ranging from 2 mmol to 32 mmol and spent most of my time terrified of the blood glucose meter. I would never know what it was going to tell me. Occasionally it would be in range, sometimes it was spot on but most of the time it would be wildly uncontrolled. Leaving me emotionally drained, frustrated beyond belief and scared of my future.

As soon as I started on the pump things got a whole lot better. Blood tests became more predictable and a whole lot less scary. For the first time I was able to expect more from my control and diabetes became something I could understand more clearly and dare I say it, embrace.

Over the last week, there have certainly been a few moments when I could have punched my pancreas in the imaginary head or stamped on my pump. Don't get me wrong, my pump is still doing just what I ask it to and I know that despite being a lazy-ass semi-useless organ only one step up from an appendix, too much time has gone by for me to really blame my pancreas anymore. I can admit that I'm still moderately bitter seeing as I didn't do anything to warrant it going on an extended holiday, but what's the point now, other than having the odd moment of blame?

Whatever the cause, I have decided to just unplug for a couple of days. I love my pump, and I love the freedom and quality or life it has given me. But 'it' isn't nice; it is not attractive or even easy to live with. It took a lot of adjusting to and there are moments when I tug in the wire or notice it protruding from under my clothing when I am reminded of just how much it takes to be prepared to do this forever. So when things are all up the shoot and I have no idea why, I feel the need to give myself a day off.

I know that when I am off the pump, I need to follow a much stricter low carb diet, have to keep a closer eye and that it is only a matter of 48 hours before I am desperate to get back on it again, because my sugars will have gone from bad to worse. But in my experience, sometimes you need a little reminder of why you reached this decision in the first place. I will be glad to get that tubey robot back plugged back in after two days, so maybe that is what this little episode is all about; learning to love my pump again.

Anyway, I will post again in a few days when I have no doubt thrown my testing kit at the wall [again] and will be gasping to get off the injections and back on the pumping way of life.

God knows I need a reminder of why at the moment!

Anna - tubeless for the first time in 11 months.

Friday, 18 February 2011

Are you getting your five a day?

Every day ‘we’ as a society are bombarded with images of what healthy should look like. It is a rarity these days to turn on the television and see a programme schedule that doesn’t include titles such as ‘Fat Families’, ‘Supersize versus Superskinny’, ‘Too fat for 15’ or ‘Biggest Loser’. It seems that over the years since the invasion of the junk food revolution, we have developed a kind of morbid fascination with the perils of being obese and now take pleasure in watching people as they journey through the trials and tribulations of re-educating themselves about what healthy is.

So, what is it? What do you think healthy is? Well, having been hooked on many of these programmes myself, the message I have taken is that ‘healthy’ would be a person who sits comfortably within a predetermined weight limit, eats around 5 portions of fruits and/or vegetables a day, consumes a balanced amount of carbohydrate, protein and dairy, exercises at least 4 - 5 times a week, doesn’t smoke, drinks a reasonably small amount and let’s not forget – avoids ‘processed’ foods as much as possible. I would also assume that I am probably not alone in thinking this seeing as most doctors, TVs shows and so-called 'experts' will highlight most of these points with some gusto.

The problem is - in my experience - ‘healthy’ for the average Joe and healthy for someone in Club-D are entirely different things. Yes, a person with diabetes should be exercising regularly. Yes, they should be avoiding processed foods. And yes, they should fall into what is considered a ‘normal’ weight (for no other reason that being hugely overweight or underweight would suggest either a surplus or deficit of something in your diet), but a pound here or there makes no difference.

But for me, the grey area starts when you begin to look at the whole fruit, carbs and protein equation. We all know that sugar raises your blood glucose. Common sense would say this is obvious really – consuming more sugar equals higher levels of sugar in the blood. Not really rocket science, is it? And it is for this reason that so many people (understandably) have a misconception that diabetics should simply avoid sugary food in order to keep levels of sugar in their blood on the lower side. But what is often forgotten - or on occasion not known to begin with – is that sugar is nothing more than carbohydrate in a simple form and in fact it is ANY carbohydrate that will increase blood glucose levels. This is where it gets confusing. Fruit for example, by any standards anywhere in the world is considered a healthy and natural food choice. But for a diabetic, fruit can be a complete nightmare, because it is absolutely packed with fructose (fruit sugar). The kind of blood sugar spikes that I have had after eating fruit has been astounding- not to mention extremely annoying – even after having weighed, calculated and injected for that one little piece of fruit. This is because fruit constains very 'fast acting' sugar, which is processed by the body very quickly. This means that no matter how well you calculate it, the insulin you are injecting to 'cover' that fruit, is unlikely to work at the same speed as the sugar, meaning a spike is almost certainly a guarantee.
Likewise potatoes, pasta and rice have an enormous effect on my blood sugar levels, despite being something often advocated as a ‘good source of energy’, and the only way I have found to successfully negotiate a meal with these kinds of food in, is to omit them from my diet all together. I have even discovered recently thanks to a lot of research and inter-surfing, that there are even large amounts of carbohydrates in vegetables! Onions for example - probably also a staple of your diet and the basis for many meals - have around 10g of carbs per average medium-sized onion. Granted you would be unlikely to eat a whole onion to yourself, but in our house we often have half each, which is around 5g per person. Seeing as I inject 1 unit per 10g of carbs, this is already half a unit of insulin I should be taking and potentially a blood sugar spike of 1 or 2 mmols. If you consider that in any one meal you would have at least 5 or 6 foods which make up the meal, many of which are vegetables which have lots of carbs, but are still in fact at the 'lower end' of powerful carbs, you are looking at some potentially big and problematic blood sugar spikes.

See for a diabetic, ‘healthy’ isn’t just about eating all the foods that doctors, dieticians and television shows so readily advocate. For those in Club-D, we also have the added issue of blood sugar levels. We have it constantly drilled into us that the primary measure of ‘healthy’ for us, is blood sugar control and that we should be aiming for blood glucose levels of 4-7mmol. Well that is all well and good, but when you are talking about a low fat-high carb diet, which is the way MOST newly diagnosed diabetics are guided, we are talking lots of food stuffs that will cause a big spike in sugars. Even in a non-diabetic, these types of food would cause the body to release large amounts of insulin in order to regulate their own blood sugar levels. The difference is, ‘we’ have to do this ourselves.

So what is the answer for PWDs (People with Diabetes)? Do we ignore popular medical opinion and eat low fact-high carb foods, which are notoriously difficult to estimate insulin requirement for (even when weighing our foods to the point of becoming mad!)? Or do we find another option?

Well, I have been on a bit of a journey of discovery lately. I will post about the different ‘diets’ I have tried lately as a way to ticking the final box when it comes to my diabetes management, but the last six months have shown me that it is not until you think ‘outside the box’ and start to embrace your own way of doing things that you really find the answer.

My conclusion from my experiments over the last few months is that the doctors don’t always know best and that you need to experiment with your own treatment rather than readily accept what you are told to do, just as I did for far, far too many years.

Tuesday, 15 February 2011

Safe Haven

Diabetes has always made me feel flawed . . . . like the human equivalent of a factory second.

I often go back to sleep and leave my lows untreated hoping diabetes will take my life and free my family from the burden of future complications.

I lie about my A1c results to my wife.

I'm afraid that one day at the same time I'll be planning my son's graduation and my daughter's funeral.

I wish my brother had diabetes too.

I'm a mom of a T1. I no longer want grandchildren. I don't want this disease passed on to another generation

The comments above were in response to a recent post written by Kerri Sparling, a well-known diabetes blogger, diabetes advocate and fellow ‘host’ of Type 1 diabetes herself, when she encouraged her readers to comment anonymously on her blog and disclose something they want the world to hear, while remaining unknown.

It was an opportunity to say something which has hidden away in your mind; too edgy, too taboo and too controversial to say out loud. It was an opportunity to just say something – anything - which people wanted to say. It was an opportunity to just put it ‘out there’ and allow the Universe to swallow it up.

A problem shared is a problem halved. Isn’t that how the saying goes?

I was expecting to see some heavy comments because lets face it, diabetes in the very nature of being a hidden, chronic and apparently ‘choosy’ condition, lends itself beautifully to ‘putting on a brave face’, tackling the ups and downs and cheerily telling people that “things are OK, thanks for asking”.

I mean really in how many situations can you turn around and say “you know what, I feel like I’m drowning in a world of information and failure”, when asked by a friend how you’re doing? Particularly as we live in a culture where ‘staying positive’ is so widely advocated and we all seem to feel this social and moral obligation to be seen to be coping with the disease.

But reading some of these comments made me ache; more than I imagined and more than I had prepared for. Many stopped me in my tracks and some brought me to tears.


I would love to be able to say that I felt sad for the people who wrote them; that my tears were ones of sympathy. But I think the real truth comes down to the fact that I can relate to many of the comments on Kerri’s blog. The reality is diabetes is tough. It takes no prisoners and can stop you in your tracks. It can make you feel alone and a little lost. It can take over your life.

This is why we need each other and this is why we need somewhere to let go of things we feel, think or need to say.

This is what this community is all about; having somewhere to do just that. I am glad that people were brave enough and courageous enough to say what they felt – no matter what it was.

I feel proud – once again – of the community we belong to and the honesty, strength and integrity we show each and every day we live with this condition. I also feel glad that the people who left these comments had an opportunity and a safe haven to do so.

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.