Contemplating Diabetes: Inside Looking Out

You might have noticed a lack of posting here lately…. I have been spending a fair bit of time with my diabetes on the inside looking out. Sometimes when you are struggling with your own diabetes it is incredibly tough to participate in all the conversations out there, around all things diabetes. After spending many years talking about and being totally immersed in diabetes and the online community, I started to run out of steam. Alongside this, I have been going through a process of decluttering and simplifying my life. This has been in my personal life, my home and my working life. Part of this has been withdrawing from conversations and groups about diabetes. It has helped my mental health to a degree. Diabetes has been really kicking me in the butt, and continues to challenge me daily. After 38 years I guess some cracks are showing. The end result of all of this has been the marking in the sand of 2 parts of my life that I want to keep – one being my interiors blog and decorating practice as my totally outside of diabetes work and passion; the other being my PhD research into supporting women with diabetes during pregnancy. A long time passion, this work is something I can do that contributes to the diabetes community, without taking too much of the wind from my own diabetes sails. It gives me hope and happiness to think that I can offer something to our community through taking time to study something close to my heart.

The other day I found both my high school reports and my diabetes record books from those years, during my decluttering. This resulted in some self examination and realisations. The first was how the hell was I even functioning with the constant fluctuations in my blood glucose from 2mmol to 22 mmol ? The old Monotard and Actrapid plus huge amounts of set carbs regime was tough people!…. The other was that at the same time, while essentially getting mostly A’s and B’s, I was being told how great I was in many areas, but that I was “capable of better” seemed to have “disengaged from this subject” and that I was “easily distracted”….As I read both of these records of my teen years, it hit me that there seemed to be a message of “not good enough” coming through. I felt a rising sense of anger about this. This was a message coming at me from both school and diabetes camps. But I was a young person doing my best in extraordinary conditions. Those sitting in judgement had not experienced what it is like to run with those types of blood glucose levels, coupled with dealing with the emotional crap of being a teen with new diabetes and the stress of just growing up.

Then, all at once, reading all of this made me proud.

It made me proud to be a survivor of a life lived long and well with type 1 diabetes. It made me proud of all the things I have done and achieved, and all the things I have done well and not so well. It made me feel brave. It also made me feel proud of all of YOU out there and all of the remarkable stories I have listened to over the years. It certainly made me feel proud of being part of the development of the diabetes online community, because when the others who don’t get diabetes can not hear us, can not truly understand what it is really like to try to live every day life on the blood glucose roller coaster and feel that the things other people take for granted are just bloody hard for us – WE can listen to each other.

In my newly simplified life of 2 parts, I am very hopeful that my diabetes research work will help women with diabetes to be heard. And who knows where this could lead me.

If you are a woman with type 1 or type 2 diabetes who may one day consider having a baby, you may be interested in getting involved. Maybe you are really not sure, but have thought about it? If you are considering a pregnancy in the next 1-5 years, are aged 18 – 40 years and speak English, I would like your help in our research project!

We are developing a survey tool for women with type 1 and type 2 diabetes to use with their health care team in considering pregnancy. Pre-pregnancy counselling can help women with diabetes in planning their pregnancy. The survey tool aims to help understand more about your current knowledge about diabetes and pregnancy; your current diabetes management and general health; your current mental health and wellbeing; and level of support from partner, family, other women with diabetes and health care professionals.

The aim is to encourage discussion about how the health care team can best support you to take steps towards planning a pregnancy at some stage in the future. Even if you are unsure if you want to have a baby one day, it is a useful exercise to find out more about what may be important. All you will need to do is to complete the survey for us, so we can see if it will be helpful. A small number of women will be asked to participate in an interview as well.

The project has ethics approval from Adelaide University and all information will be provided to women who get involved. Please get in touch with me via helen.edwards@adelaide.edu.au if you would like more information.

Thank you for listening,

Helen xx

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