How much does diabetes dominate your life? It is a health condition which, because it is related to food and exercise, can seem like the most difficult health condition you could possibly have, doesn’t it? And because the symptoms are not always obvious or noticeable, it can seem that if you ignore it, it will just go away, or not be true.That you will ‘get away with it’, if you ignore it, or make a ‘token effort’. Even people with type 1 diabetes can at times feel that they can ‘stretch’ the ‘rules’, not take their insulin, or use insulin to allow themselves to ‘indulge’ in ‘favourite’ foods; or ‘allow’ themselves to ‘run high’ to avoid hypos. The insulin pump combined with the modern blood glucose meters, cgm’s, allows such fine control, approximates more closely than anything else the action of the pancreas in releasing insulin; yet in its very existence such biotechnology is a constant reminder of life with diabetes.
As the parent of a child diagnosed with type 1 diabetes, there were times when it seemed there would never be anything else that mattered in life, other than diabetes. When my daughter grew up & left our home in a tiny rural town to go to the City to study at University, things in some ways got easier; but in other ways, things got harder. I was a young Mum, and I was only 32 years old when my beautiful healthy girl was diagnosed. I was 37 when she left home. It was hard knowing she was 250 km away, and relying on others, who were not me, as her ‘backup’ person. Every night that we slept under the same roof, I got up to sit with her through her hypos. The click of a light switch, or the click of the toaster, would wake me. This continued through her teen years; her pregnancies; her own years mothering babies; travelling with her for Diabetes related professional reasons as colleague, & as her ‘back up person’ for her diabetes management, on trips overseas & interstate ; and on family holidays. Even now, if we are sleeping under the same roof, if I’m sleeping within hearing distance, something wakes me, and I can’t lie in bed knowing she’s out of bed & feeling bad.
I do have other things in my life: work, sport, friends, family: causes to do with the environment and the earth. I have grown tree seedlings for Trees for Life, collected for the Heart foundation, travelled. I’ve volunteered at Film Festivals, Arts Festivals, tutored at the U3A. But beating away like another heartbeat is my daughter’s diabetes. I work and volunteer in Diabetes. I practice Mindfulness. Being her parent will always be a part of who I am. Of course, it is much, much more intense for her. Every minute of every day and night, no respite. I do get to take breaks, she doesn’t.
My life changed 15 years ago. My husband retired, and I got a job in the city, so we moved house. Over the past 15 years, my life has expanded to include assisting my mother in dealing with changes that came about in her life, first with my father’s diagnosis of dementia. In the beginning, I was working in a highly responsible & challenging job. My help was as practical as I could manage, also fitting in supporting both my daughters with pregnancies & babies, toddlers & growing children. With my father’s death, assisting Mum meant helping her manage her own health & living arrangements, & eventually her own dementia.
That time also came to include my own diagnosis of diabetes. Because of my daughter’s diabetes, I came to the diagnosis with a shorter period of ‘denial’ than some experience; and with very little anger. I do feel some negative emotions, of course; but I know that it’s possible to live a good life with diabetes. My fear of diabetes related complications is much less than my fear of dementia.
I hadn’t meant to write about difficult experiences in my life, but yes: they are also part of life, and many of them have nothing to do with diabetes. The past 15 years have included weddings, births, joys: wonderful family Christmases, when Mum played ‘Mother Christmas’ to our large family: visits from overseas relatives, contact through Social media with relatives, friends, strangers. Yes food is pleasure, but there are other pleasures. Exercise is pleasure. Doing things for others is pleasure. Growing things, writing, taking photos, playing with children, doing good work, talking with friends from all over the world, these are all pleasurable.
Life is Good. Life is a river, it flows. Life is truly a journey, with opportunities for rich experiences that include the difficult ones, and the easy ones: spontaneous ones and planned ones. Seize the moment, take opportunities when they arise. Life is more than diabetes: it includes things that are harder, and worse: and things that are easier, & better..Life is for the Living.
Helen was a Senior Counsellor with Diabetes Counselling Online. She is also the parent of someone diagnosed with type 1 diabetes in 1979. She has lived with type 2 diabetes herself since 2002.