In February, when we were living in a very different pre-coronavirus world, I was invited to a local secondary school by a small group of TY (transition year) students who were doing a Young Social Innovators project on diabetes. They asked me to talk about what living with diabetes is like for me. I was a smidge nervous because, you know, they were teenagers, but they were such a great bunch and I really enjoyed sharing with them.
They had done some research on diabetes through some websites, so I asked them what they thought diabetes was. They probably would have been able to answer my question had I phrased it bit more specifically but it did give us a good starting point.
Diabetes happens when glucose/fuel can't get into your cells to give you energy.
So, I began with my interpretation of what diabetes was:
If food is our body’s fuel what would happen if food could not turn into fuel?
Diabetes happens when the body’s method of turning our food into fuel is broken and glucose is trapped in our blood.
The reason this happens is because our insulin, which is the key that opens the door of our cells to let glucose in to become energy/fuel, is broken or not working properly.
As well as going into a state of malnutrition, the trapped glucose in our blood turns into a sludgy syrup which slows it down and causes damage to other areas of our bodies.
Then, I explained that glucose comes from food but specifically the food group of carbohydrates and also from a store in our liver. Carbohydrates are not just sugar, they are sugars and starches.
My life with diabetes means keeping glucose levels between two lines:
if my levels are too low that affects my brain and can shut it down. I can pass out.
If my levels are too high, for too long, this damages all the organs and tissues that my blood travels to. If this isn’t taking care of or happens while I’m dealing with an illness, I could lapse into a coma.
I try to keep my glucose levels between the two lines by:
Monitoring my carbohydrate (sugars and starches) intake
Adjusting my insulin doses to match my body’s needs
Checking my glucose levels a lot and in particular before I eat and take insulin
Monitoring my activity
Paying attention to all the other factors that influence glucose levels such as illness, horrible hormones, stress,
What does this mean when I sit down to eat?
Once I am ready to sit down to eat:
I check my glucose levels, either on my meter or on my CGM.
I figure out how much carbohydrate I am going to eat
I use a mathematical formula to work out how much insulin I need to take to cover my meal. If my levels are higher or lower than I would like them to be I adjust my insulin for that. Sometimes my insulin pump or meter helps me figure this out by doing the sums for me.
I take the insulin
I eat.
I usually check my levels again two hours after eating to make sure that the sums were right.
Then I spoke about using an insulin pump and a glucose sensor which has made life with diabetes that little bit better for me.
There was one member of the TY group whose parents both had type 2 diabetes so we talked a little about the public perception of diabetes and how it tended to focus solely on lifestyle factors which has led to stigma and shame, especially in the type 2 diabetes community. We also distinguished between “causes” and “risk factors”.
At the end of our discussion they asked me what would I like to see happen in the future and I didn’t have to think twice about my answer: I would love to see a “What is Diabetes” education campaign that made it easier for people to understand how complex it is and I also would love to see an awareness campaign on how it’s “All the Carbs, Not Just Sugar” that has an influence on diabetes.
By the time I met with the group they were just days away from their regional Speak Out and a little bird has told me that they did very well with their rap on “counting carbs”.
