Life..’More than #diabetes’ Ups & Downs

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.

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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.

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Helen Wilde

carpe diem

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.

7 Comments

  1. Helen Edwards on July 29, 2014 at 2:43 pm

    absolutely beautiful writing, thank you, for everything xxx

  2. helwild on July 29, 2014 at 3:03 pm

    Gifts received with love are given freely.

  3. CAKerr on July 29, 2014 at 11:39 pm

    Thank you for your beautiful piece Helene. It is so reassuring to hear of your journey with your daughter. Our fears are common. So too is the amazing connection we have with our little Type 1’ers. When my daughter was diagnosed, and I was in the depths of despair, my husband said to me ‘we are so lucky. Not many parents will have opportunity to develop the kind of connection we will have with our girl’. At the time I didn’t ‘get it’. I wanted to scream at him ‘how can anything wonderful ever come out of this nightmare situation’. Ten years on, I am humbled by how wise he was/is. Something wonderful did come out of the situation …. our beautiful, strong, funny, clever daughter, and the incredible connection we share with her. We are blessed indeed.

    • helwild on July 30, 2014 at 9:25 am

      Such a lovely response, Cathy Ann. Your husband is indeed wiser than the average person, seeing into the future. We are so lucky to live in times when our children can live long, healthy lives assisted by all that science can offer. My daughters are both a joy to me, and their children are blessings I did not think of when my own children were growing up. My T1 daughter possesses such resilience and courage that I am in awe of her.
      Regards
      Helen

  4. Eileen Gardiner on July 30, 2014 at 12:01 am

    Poignant yet heartfelt. As another mum to Type 1 Diabetic children, I totally relate to those same feelings. Beautiful words.

    • helwild on July 30, 2014 at 9:22 am

      Thank you Eileen. Our common journey brings us close.
      regards,
      Helen

  5. helwild on July 31, 2014 at 3:11 pm

    Last night Maureen shared with me this beautiful poem that I know many parents of a child with diabetes or indeed any chronic disease could relate to. Maureen’s son was diagnosed with Type 1 diabetes only 8 months ago.

    Maureen has given permission to publish her poem.
    Here it is, with extracts from our conversation.

    “Hi Helen, I love the wisdom in your voice that comes across in your post. My son is 8 months in to this journey and the creative part of me has worked on this little poem in the last few week that i wanted to share with you. I’m not sure why I’m sharing it – it’s been a labour of love and really cathartic for me to write it.

    I lost a layer of skin
    I lost a layer of skin as we entered the hospital on the day of the diagnosis.

    I didn’t feel it fall off.
    It certainly didn’t hurt.
    It gently slipped off with less than a whisper, unnoticed, like a soft, satin scarf.
    I wish I had noticed it leaving.

    I imagine it floating gently over the roofs of nearby houses,
    carrying with it the half formed dreams I alone held for my child,
    leaving behind only rawness.

    Over days, weeks and months a strange new layer has grown in its place.
    It’s a bizarre contradiction – tough yet sensitive.

    Watching the drops of intense ruby blood makes it want to shred itself
    Glimpsing needles pierce the stomach where raspberries were once blown makes it ache.
    Seeing the sombre eyes of a child learning to cope leaves a hollowness.
    Dragging a weary body through night times of wakefulness leaves it feeling prickly.

    It’s certainly more careworn than the layer it replaces
    but it’s strong and it needs to be.
    It bears the brave scars of battles: some internal and silent, some of epic proportions.
    Hiding the multitude of maternal fears which largely remain unshared has hardened the carapace.

    It has to be tough for the times when it’s all too much for a child who just wants the old normal.
    The old normal isn’t coming back.

    I like to imagine
    that I’ll find that layer of skin again some day and fashion a purpose for it in this new existence,
    for there is hope.

    Maureen Campey
    Maureen is the parent of a child with diabetes, diagnosed 8 months ago. She is a member of one of our Facebook closed groups, and has given permission to publish her poem. We thank her for that. If you would like to chat with others about living with diabetes, you can do so at our Forums, or in one of our many Facebook groups.

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