Wednesday, 3 November 2010

The Cure is a tempting mistress, but we're not waiting around for you.

When running a marathon, or backpacking, you don't set off with a sprint. You find a pace you can sustain for the length of the event. And when the event lasts sixteen years, a calm steady approach looks best to me. With Frank's diabetes, we're now over two years in, with fourteen to go until it's his responsibility at the age of eighteen. Frank's condition has taught us much about diabetes, and much more about ourselves and our wider community.

Our National Health Service has come up trumps as far as we are concerned, and the Benefits system means that we can tick over without having to sell-up to fund the time we need to put in, to look after Frank especially during his younger years. So thanks to the UK taxpayers for helping us - and I'm one of them too!

So how do we deal with the condition, and how do we feel about a cure? I've covered managing diabetes in other blogs, so I won't go over the old ground of finger prick testing, multiple daily injections, observations every ten minutes during the day, and procedures during the night. We just have to get on with it all, we have no choice.

And "The Cure"? Well we're not holding our breath or counting down the days. Even before we had personal involvement with diabetes, we knew that a cure was many years away, so when we had the diagnosis, this lack of a fix on the horizon didn't come as a surprise to us.

We can't wait for a cure, in two senses. A cure would alter Frank's and our family's life, enabling us to jetison all the mental, physical and emotional effort in managing the disease, and avoiding all the personal discomfort for the boy with the fingertips of steel and the pin-cushion bottom. And we can't wait for a cure, as we've got to live our lives in the here and now; not some fantasy dream life at some unspecified time in the future.

The day-to-day management of Type 1 Diabetes takes all our capacity, and we don't think very much about The Cure. Sure, we support the efforts of the JDRF (Juvenile Diabetes Research Fund, an international organisation), and Diabetes UK who give lots of support. But we can't put our lives on hold until a miracle cure eventually turns up.

Frank's just an ordinary little kid, in almost every way. Apart from the time he's having medical attention, he's just charging about as four-year olds should. The picture shows him zooming off into the distance, on his scooter bike on the Wivenhoe Trail with his cousin.

We have benefited massively from the diabetes community. Thanks to the internet we have access to all the information we could ever want. But, even better, we have made contact with scores of people in similar positions, sharing experiences, looking at how best we can look after ourselves, and live a regular life. We have played our small part by forming Colchester Circle D, to support local families with Type 1 Diabetes.

There are super blogs out there (including "click of the light", "muffin moon", "instructions not included", "shoot up, or put up"), with lots of practical information, emotion and humour. I love these blogs, some written by people who have had diabetes many years. The way they pace their lives, and their approach to "bad days" are an inspiration. (For the information of non diabetics - even the most careful experienced diabetics have bad days - the condition certainly does not obey the rules that we follow when we do our best to manage the beast.) And little is said about a cure. They're all busy just getting on with their lives.

The Cure is a tempting mistress, and some type 1 diabetics are in hot pursuit. They expend lots of their energy pushing for extra funding, and posting on the internet to raise awareness of diabetes. Maybe it's our make-up, but we simply don't have the stomach for such a fight. Our energies are so focussed on getting by, that we simply don't have the capacity to be angry about the condition, or to lobby for its place in the public's and the authorities' perception of the ranking of Type 1 diabetes, compared with dozens of other rubbishy diseases.

It's Diabetes Awareness Month, and this blog is part of my contribution to this. So, if you were expecting me to beg you to donate to JDRF, or to rail on about our terrible lives, I'm sorry to disappoint. Actually, we enjoy a very good life and we're doing our best to get the most out of every day, inspired by our own brave little hero who just lives for the moment. The Cure may be a tempting mistress, but I don't think she's coming our way any time soon. But it would be nice, and hand over your money.....


  1. Great post. I have my own thoughts too about 'the cure', which, as I'm taking part in NaBloWriMo, I'm sure I will share at some point during November!

  2. I too like this post...funny, your timing, as Joe mentioned today that he was hoping for a cure from Santa this about heart break. I didn't even know he really gave it much thought, show's you what I know.

  3. Hi Andrew,

    Really great post - an honest opinion of the hope for a cure which made for a very interesting read.

    I work for Diabetes UK and have come across the blogs you have mentioned here (Instructions Not Included being a personal fave) but had not seen yours yet until your mention of "Diabetes UK" flagged it up. It's always interesting to read how so many people are getting more and more help and support through online communities now too, which is something I hope that we can get better at in future.

    Hope Frank's well, and I look forward to reading more on your blog.


    Joe Freeman
    Digital Communities Manager
    Diabetes UK

  4. I love this post. What a great look at the reality of diabetes and what living with the disease really means to a family. This is a great, honest perspective that I wish we could glimpse not just for diabetes, but so many other conditions as well.

  5. Comment from Diane Ranaghan via my Facebook: I happened to share your blog onto my little FB page, cause I just adore ya!! :) "pincushion bottom" .....made me chuckle!! Thanks for being such a great friend!

  6. Comments from Diane Ranaghan's Facebook:
    Regina Pasko I agree....I love the post about not waiting for a cure and commencing on with life. Love the blog.

    ...Diane Ranaghan ‎"tempting mistress" I thought that was reserved for only me.....felt so honored to be in such good company!! Hahahahahahahahaaa!!

    Elizabeth Lawren Romero Everyone with diabetes must work to manage 24/7, you can't stop managing because a cure is coming. JDRF invests in treatment advances and outreach (my job), as do other organizations because we believe in healthy (physically and emotionall...y) people now, not just a future end cure. We cannot continue towards better treatments and better resources without awareness. Awareness means investment, investment means progress. I agree with this blog completely. We cannot just wait for a cure, but we can't just wait either. There is work to do. For adults with T1, for kids with T1, for those not yet diagnosed, this work is done so that they live better NOW and so future generations never have to know the consumption of thought and energy that T1 diabetes takes on each day.

    Andrew Stanley Budd Thanks everyone for their kind comments, glad to provide some kind of entertainment! Elizabeth, you are so right about there being work to do, and we're very grateful to JDRF and their supporters. We certainly do what we can for awareness - we are very much "diabetics with attitude" (but, of course, in a reserved English kind of way!). We are very public about it. We run a local support group, and have been in the papers and on the radio, talking it all up.

    Regina Pasko ‎(That is what is most cherished about my English friends.............their very proper and reserved way!!)



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