“You’ll never be able to eat sugar again, so you might as well start now.”
The first words uttered an hour after diagnosis of Type 1 diabetes almost 56 years ago. I was 13. Tough love!
On that day I was alone in a hospital ward having never left home before, surrounded by, to me, very old people - all in beds with the pillow cases neatly arranged so the open ends could not be seen when visitors or the consultant ‘gods’ arrived. Matron ruled with an iron rod.
The nurse appeared carrying a fearsome looking glass syringe with a large metal needle. “You’re going to have to give yourself injections every day for the rest of life so start now.” No practice with oranges.
A week later I left hospital clutching two vials of insulin, a glass syringe, and four large metal needles which had to be kept in surgical spirit and boiled regularly, and a diet sheet with a daily allowance of 45 grammes of carbohydrate.
So began my symbiotic life with Type 1 diabetes; no decision about my life could be made without taking into account the needs of my unwelcome life’s partner.
In those early days, with no HbA1c or blood glucose monitors, only urine tests, the consultant god ruled. He (always a he) changed your insulin dosage based on one random blood glucose every three months, or more frequently if you had been a bad diabetic. You daren’t think about changing your insulin dosage yourself.
The hospital I attended didn’t realise that stress affected blood glucose levels so exams, hormones and interviews all affected control. Worst of all was the stress of hospital visits: you were terrified of being told off so you were high. Even worse, was not being believed when you said you were hypo much of the time. Your insulin dosage was increased yet again, causing more hypos.
This lasted for 21 years until my first blood glucose monitor, which weighed a tonne, was very expensive and took a long time to give a result but gave independence. I proudly showed my excellent consultant. His response was a genuine question, “Why do you need one of those?” He looked thoughtful when I replied, “It gives me confidence.”
25 years from being diagnosed I got my first insulin pen; a sleek, sophisticated object that improved my life as it allowed personal management of diabetes. Eating when you wanted, managing exercise better and generally living a more normal life.
The insulin pump, 40 years after I was diagnosed, transformed my life. Its flexibility allowed me to more easily control my condition. Since 2013, continuous glucose monitoring enables closer control. I now have electronic discussions with my health professionals who see the data I download from the pump.
I’m looking forward to the closed loop system, which hopefully will take over the hourly mathematical decisions I make.
My mantra has been: respect diabetes but don’t let it rule your life.
Today I can press a button and see what my blood glucose is, look on my phone to check the carbohydrate content of food, and from this, work out how much insulin to give and press another button to inject the insulin.
Fast developing technology has made my mantra even more possible.
Sandra Tweddell, February 2017