Diabetes Week : Living Research – By Helen May
The research we read about in the news is done at universities throughout the UK and further afield funded by charities like Diabetes UK and JDRF and drug companies. While these groups certainly do some amazing work, they are not the only diabetes research. For example, I do my own research. You could say it fits into two categories: keeping informed about diabetes in general and focusing on a specific are.
The reason for subscribing to medical newsletters and diabetes journals, reading blogs about diabetes and is to know as much as I can about the subject. This enables me to keep abreast of new technologies, be as prepared as possible for changes that happens in my life and cram my brain with facts. As my friends, colleagues and relations know I have diabetes, I am sometimes asked for advice for “a friend who may have diabetes” or whether it is “OK for my friend with diabetes to …” or simply “why do you do that?” I know I am not an expert in diabetes and I answer most of these questions from experience rather than formal education (and I always say this) but I like to be able to provide some help.
Sometimes, I have a specific topic that I want to know more about. It may be that I read a blog about a something or I am about to participate in a new activity or there has been a recent news item about diabetes that surprises me. For example, I kept hearing about insulin pumps but I didn’t want to request one just because they are the next new fad. I wanted to understand why they improve diabetes control, what other benefits are there and what are the downsides. The internet (such as the Diabetes UK website) was great for learning about how to use the pumps, what they look like, whether I am automatically entitled to one, where I could get one, … but I struggled to find out how they worked: what was it that made them so much better? Was it just the training that goes with the pump? Finally, I asked my questions on a blog and the readers provided fantastic research material for me to learn from and make an informed decision. I decided that whilst there could be some benefits, the pen suits my lifestyle better today.
Whilst a lot of my research is reading books and journals and blogs and internet (literature searches) and asking about other people’s experience (qualitative research), these never tell me about my test case: they will not tell me exactly how MY body will react. Therefore, there are times I resort to practical experimentation. For example, how many units of insulin do I need for my morning fruit? Although I don’t write down the units every morning I eat and apple or record my readings four hours later, I remember trends and notice if I am always high or low come lunchtime and adjust accordingly. Or, how fast does my blood sugar rise when I go climbing? Is it fast enough for me to start an evening at the climbing centre at less than 4 or should I go more careful and start at higher than 5? I have learnt I should start climbing at around 4.5 but take some insulin as if I am about to eat: by the time the insulin starts working, I have scared myself enough to get my blood sugars going up so they cancel each other out and I can climb for longer.
As people with diabetes or caring for someone with diabetes, we do not have lots of scientific equipment to hand (and sometimes a continuous glucose monitor would help) and we may not be discovering the cure for diabetes. However, we live our lives researching diabetes to manage our bodies as best as we can making minor adjustments as we go.