To the Top of The World: What Brings Me Down With Diabetes

It is the eighth annual Diabetes Blog Week, started by Karen from Bittersweet Diabetes and today is day 4 –  The day one topic is here about expecting the unexpected and day two is here about the costs of diabetes and day three here, about the diabetes blame game.

Today’s prompt is one I have lived and breathed since starting Diabetes Counselling Online in 2001 – What Brings Me Down 

Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? 

The emotional side of diabetes and finding ways to make sure people understand, know about and support people with diabetes to manage this, is kinda my life’s work. When I started Diabetes Counselling Online in 2001, my sole purpose was to create a space where people with diabetes could communicate and connect; and seek help for managing the emotional side of diabetes. At the time I had been searching for help myself, and been unable to find it. I was in my early 30’s and had been struggling with my own mental health. I wanted to find some kind of community and support system that was relevant to where I was in my life. I had been a teen who rejected diabetes camps, and anything that identified me with diabetes, yet as I grew older, the yearning in me for this connection grew stronger.

I was not able to find much, except the fabulous Reality Check, an online forum for young people with type 1 diabetes. My goal however was bigger than that – yes I wanted peer support, for all types of diabetes and all ages, but I also wanted to use my skills and training as a social worker, to provide professional online counselling, free of charge. At that time nobody in Australia was really doing online counselling and there were no guidelines from any of our professional associations. I was able to find some information from an international mental health online group, to guide me in setting this service up. I was also a person with diabetes, not a diabetes health care professional, and received mixed responses from people in the field, about what I was doing. At the time, there was no real recognition that diabetes indeed increased risks of depression and diabetes burn out was not a thing.

To cut a long story short, after a couple of years I was able to get some small amounts of funding and we were on our way – to a 15 year run of managing the online counselling services, which eventually grew and became a charity and went on to help thousands of people across the world. We evolved with social media, setting up a range of support groups on Facebook and I watched as the online diabetes community began to blossom.

In this time, I also suffered with my own personal struggles with mental health, which had begun when I had post natal depression with my first son, followed by post traumatic stress from my work in child protection. In fact I feel that my depression probably began in my teenage years and had a lot to do with my diabetes. The connections made with the diabetes community were a big part of my healing process, as was excellent counselling and in some periods of my life, anti depressant medication.

A little while after I started this organisation, the Diabetes Attitudes Wishes and Needs study, showed that people with diabetes did indeed have reduced quality of life and lowered wellbeing. The DAWN study has continued to champion the need to address these issues in everyday practice and I was a winner of the Australsian DAWN award for my work, and a top 3 runner up in the International awards. The wonderful Dr William Polonsky had published a fantastic book in 1999, and this became my bible for addressing diabetes burn out with our community. I am so excited that he is now going to be one of my supervisors on the completion of my PhD! I am looking at the pregnancy journey for women with type 1 diabetes as I believe this is such an important area of our lives – as a 12 year old girl, being told I would never have healthy babies and if I dared they would be born deformed or dead, was one of the most damaging parts of my diagnosis…….my first study is here if you are interested in reading it. I am looking forward to working more on understanding the journey into motherhood, and following on with how online peer support can make a difference.

In terms of what brings me down personally with my diabetes? Well here is a bit of a list:

• the lack of spontaneity
• the never ending, drudgery of it all
• my messed up digestive system
• hypos
• hypers
• complications
• food restrictions – low carb and low FODMAP and gastroparesis restrictions make for a very tricky diet
• feeling frightened to go to sleep, or worrying on a walk that I am crashing into a low
• feeling frightened when I travel that something may go wrong, especially if I am alone
• not knowing what else may happen to my body in the future
• the stupid failure of my stupid pump sites that are filled with fat and scar tissue from so many years and the stupid black marks on my sore fingers from so many blood checks and the stupid inconsistent readings I get from my meters and the stupid ongoing monitoring of my every move
• feeling alone

And what brings me up?

• the absolute joy of having a life
• my family
• my friends
• my work
• the online diabetes community
• where I live and the luckiness of it all
• music
• walks in nature
• writing
• chocolate and tea
• mindfulness, meditation and deep relaxation practices
• a warm bath
• a good book
• road trips with my boys
• time at our beach shack
• the sea and the mountains
• art and literature and film and a good drama on Netflix and anything creative
• my other work outside of diabetes, in sustainable living
• sunlight and rain
• gardening

I was walking this morning as I do every morning and we live very close to a national park, so I am very lucky to be able to pass through there each day, after walking my son to school. It is the best time of my day, that walk together, talking and wondering, followed by my personal time being mindful in nature, as I traverse the local pathways. Today he is sick, so I went a little later. As I ambled along the path, the Adelaide autumn breeze was blowing on my skin, the sunshine was glittering across trees, and dappled leaves were shining at my feet. I could hear birds calling, so many different types, and smell someone’s log fire. In my ears the song below was playing – and all at once, in that moment, I felt entirely happy.

Diabetes may bring you down on a daily basis, in its relentless, never ending line of tasks, worries and fears – but when you stop and notice all that is around you, this can melt into the background and you can appreciate how great is it to be alive and what really matters – the people in your life, loving them and being loved – that is all there really is. We all have our burdens to bear, but bearing them together makes the load a whole lot lighter and your world a whole lot brighter, taking you to the top of the world.

Helen