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I have Type 1 Diabetes | ||||
| Experience 4 | |||||
| DAFNE
- A Personal Journey I have been diabetic for 30 plus years and before the discovery of the HbA1c blood test my diabetic regime seemed pretty straightforward: 3 meals a day with a set amount of carbohydrates allowed and within a fairly strict timeline (lunch by 1 pm, dinner by 8pm). It all seemed so simple. And to accomplish this I have largely led a lifestyle of sensible, healthy eating and exercise, saving special occasions for any transgressions. It was not until the HbA1c test entered my life that my diabetic equilibrium was disrupted. Up until that time I had achieved tolerable readings from my daily blood test, but my HbA1c results were showing that I was regularly too high. And so started a long and tiresome process to improve… Over the years a seemingly endless array of professionals has worked closely with me to try and resolve this issue of my high HbA1c’s. Together we played with my insulin dosage and frequency, injection sites and timing, calculated my insulin/carbohydrate ratio allowing me to make adjustments as necessary. I did blood tests at all times - day and night, and at one point used a selection of meters at the same time (the suggestion of a newly employed specialist nurse whose advice I followed in desperation). And we even played with my diet such that I went through a period of having to find totally carbohydrate free food at lunch times. I moved to New York and took on a far more responsible job that had me travelling globally frequently and lo and behold, the HbA1c improved. The missing element – stress! But it didn’t last (the stress did) and my HbA1c returned to its preferred level. I returned home in 2001 and again, for the first few months, things improved. At the time it did cross my mind that perhaps the answer was for me to simply keep moving countries on a regular basis. To get to this point had taken years and the lack of improvement had resulted in my losing interest in my diabetes almost altogether. It was not that I ignored my regime, but I simply went through the motions and had no expectation of long term health. I had developed retinopathy which was one of the key events that more than anything else had convinced me it was all for nothing. I had bad genes, my mother had simply married bad blood and apart from blaming them, my father for his bad blood and my mother for marrying him, there was nothing to be done. My HbA1c would remain forever above 10. I continued in this disinterested state for a few years until I was assigned to new specialist who started to look not just at my diabetes regime but everything else going on in my life. She observed that my professional and personal life, my emotional state and even my hormonal cycles were affecting my blood glucose levels. In July 2002, she suggested that I should attend a DAFNE course. Her reasoning to me was simple: it was a new approach, I needed a new approach and I did not have to continue with it if I did not like it. I simply agreed because at that time finding a free week was not a problem. The DAFNE course was different from anything I had done before. For a start it was a group activity; 8 of us learnt, shared, debated and challenged all things to do with our experience of Type diabetes with each other and with the course tutors. They, in turn, imparted all they knew about the condition to us. Things started with a revision of our background insulin dosage, for why I can’t remember. Then over the course of the five days we were told to try and keep our blood sugar levels within specific ranges for mealtimes and before bed. We were then shown the different ways of maintaining our blood sugars within these ranges. This was very useful and explains why 5 days are needed: to give you time to experiment, make mistakes and work out resolutions with tutors and peers. As I look back, I think this is probably the main thing that I appreciate about DAFNE; it taught me finally to take full control of my condition and not let myself sit back and wait for a specialist to tell me what to do, but to just do it, knowing there was ample assistance should I mess up. All conceivable topics that might affect diabetes were covered: insulin types and their efficacy, medical equipment, sickness, exercise, food, alcohol etc. There are rules for everything, or so it seems. Sick day rules, exercise rules, travel rules on and on. A review is also done of all the medication and equipment used which is most helpful as I have found one can become very ignorant very quickly of what is new and may be more appropriate. Then they test you on everything you have learnt just to make absolutely certain you have absorbed everything they have imparted. And the prize at the end of the course – a handbook containing all you need to know about DAFNE but didn’t dare ask! DAFNE has given me the flexibility to live my live as I wish and, more importantly, to live healthily and thus I feel happier, better and healthier. But there are downsides: the innumerable blood tests to be taken and recorded in those horrible little diaries are the worst, the temptation to think anything out of range is a problem, the time spent reviewing blood test results every few days, making changes and then reviewing the changes and so on ad nauseam. The rules (see above). The amount of medical stuff I now seem to have to carry around with me everywhere is ridiculous. I used to have a saying, ‘money, knickers, hankies, keys’ that ensured essentials were always remembered before venturing outside but nowadays the list is too long, and how do you include insulin, needles, pen, meters, bm sticks, finger pricks, ooh and some hypo stuff into a saying when you all you want to do is pop down to the pub? I have met two people who did it and rejected it but both say they are glad they tried DAFNE and it has helped them even though they did not think in the end it was appropriate. But DAFNE works for me. I exercise and eat much the same as I always have done, but I can miss meals, eat at odd times, travel, and enjoy special occasions. These past two years have been the best and worst of my life. The best is that my HbA1c has remained exactly where it should be, between 6.0 – 7.0, whatever I have done or experienced and I have not had to sacrifice, adjust or moderate any activity or food to achieve this. Finally, my lifestyle is my own. Isobel George Back to Menu Top of Page |
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