Legends of Living with Type 1 Diabetes – Sandra
In the next edition of Legends of Living with Type 1 Diabetes, I am sharing Sandra’s story. Every person’s experience of diagnosis and of the years that follow, is different. It’s fascinating to see how people grapple with the ups and downs, and find their way to living with diabetes. Sandra’s story is one of misdiagnosis, which is sadly common for people who develop type 1 diabetes in later adulthood. Read on to see how she eventually got the right diagnosis and treatment she needed.
Sandra’s Story
I was diagnosed at 57 years of age in January 2009. My doctor started doing regular blood tests in May 2008. He told me I had type 2 diabetes and started me on Metformin and another medication. That continued for a few months until I went back to him, telling him that my early morning blood glucose level was regularly 12 mmol. He said that wasn’t unusual and to keep checking and taking the medication.
In the November, I called the surgery to talk to him and when I explained that my blood glucose levels were now 18 mmol each morning, I was told to go directly to see a doctor. My own doctor was away on leave. The second GP told me to double my medication and asked me how I was sleeping. When I told him I didn’t sleep well and was restless at night, he told me I must have depression and gave me a prescription for an anti-depressant. He then told me to go home…
In the January, I was really struggling – always tired, couldn’t get out of bed, thirsty all the time and urinating often. By then, my fasting morning blood test was 26 mmol daily! I went back to this doctor who told me to keep taking the medications and come back to my own doctor in a month.
I’d been keeping a food diary, so I took my diary and headed to Diabetes SA. They couldn’t correlate my diet compared to my blood glucose levels. They recommended that I needed to see an endocrinologist urgently as they thought I had LADA – Latent Autoimmune Diabetes in Adults – basically type 1 diabetes. I went back to my own GP, who told me he didn’t care what it was called, I needed to start on insulin. He found me an endocrinologist, which wasn’t easy in early January! Blood tests the next day verified that I had type 1 diabetes and I started taking insulin.
The scariest part, was trying hard to do the right thing, but not really knowing what to do. I went to Diabetes SA who were a big help. I bought my blood glucose monitor and started doing education sessions. It wasn’t easy starting to take insulin.
Now, the hardest part is the balancing act – always wondering if I should eat with my current blood glucose level, deciding what I can eat to keep the carbohydrates under control, matching the insulin to my food. I like to exercise to help manage my diabetes, but preparing to exercise and adjusting the insulin to be safe while working out is tricky. Thinking all the time about my diabetes, with all the decisions that need to be made, is an ongoing stress.
In some ways, I’m really happy that I have diabetes, even though it’s constant and time consuming. It has encouraged me to take much better care of myself, to exercise and to eat a very healthy diet. I value life now. I’ve also learnt that I have to be very proactive with my medical team. If I’m not happy with a decision or treatment, I tell them. If I don’t, who will?
The things that help me to cope with living with type 1 diabetes are my exercise and the coffee catch-ups with friends at the pool, as well as the support of my medical team and the Diabetes SA staff. I moderate on two chat rooms and organise dinners and social occasions for others with type 1 diabetes. It’s great to be able to sit and chat with others who understand. I also love my volunteering with JDRF where I make calls to parents of children with type 1 diabetes and adults with it too.
I feel very lucky to have an amazing medical team and to live in Australia where, with all its challenges, we have such amazing support from our government and health care system.
thank you for sharing your story, Sandra.
Legend of the Lighthouse Moon is available for pre-order here.
Helen