There are many things that I could write about as I have many experiences living with diabetes. This one is about learning how to love diabetes! By this I mean, it is about how I realised that diabetes was here to stay and that if I could make it part of my life and look after it, I would be looking after me and would therefore have a better life.
I believe the way to have a positive life with diabetes is to realise it is about life WITH diabetes – you would rather you did not have it – but fact is you do and if you are going to have a good life, you have to realise this and work out ways to stop fighting and live with it. This has to be ways that work for you, not ways that work for others, as we are all different.
I was diagnosed with diabetes in 1979 when I was 12 yrs old. I was just about to go into high school. I spent 3 weeks in hospital, having blood tests, needles, being made to have hypos so I would be able to recognise them and learning urine testing. I was given a list of “Forbidden Foods” things I was not “allowed” to eat ever again!
My mother embarked on a daily life of weighing and measuring all my food and life became about measuring, testing and restrictions. I initially had to do urine testing, which I hated as it felt so dirty but when the blood glucose monitor arrived – I also did not want to use this! Those first machines had so many steps involved, and I always fought against any changes to my diabetes management in any case. Of course I did start using it and a whole corner of my room became my diabetes area! My well meaning parents recorded my every move for the doctors. I tried to hide my diabetes from my friends and did not tell them, although my close friends already knew as my Dad had told them while I was still in hospital. This made me angry as I did not want not be different. I did not wear my medic alert after a while and things seemed worse because my parents taught at my school so I felt I was always “watched”.
At first I did everything I was told I had to do, but as I went into my teenage years, I reduced my needles from 2 a day to 1 a day – just enough to keep me going. I ate what I wanted and lied about my blood glucose results to my parents and doctors. I thought I had to be a “good girl” and this meant “good” blood glucose results no matter what – so I wrote lovely graphs for the Dr! I was scared of complications, which had been rammed down my throat and so I thought they were inevitable in any case so what was the point. I did not like my diabetes or myself very much.
At 14 I started drinking alcohol, smoking and basically living my life in a very risky way. There is a long story there which I will not go into here. My family and I somehow survived these years and I left home and went to the city to study. A whole different story fits here too, as I was in a relationship with a violent boyfriend and had some very tough and scary years. However, I also survived those times somehow and by the time I came out of that relationship at about 20 yrs old, I started to feel that things were really out of control in my life and that it was time to deal with diabetes. I finally told my doctor that I had been lying about my results for years. I was very upset and crying. I can see it now. He just looked at me and said – “do you think we’re stupid?” This was a big turning point for me as I realised this was all about ME, not THEM. He had known I was fudging my results as I guess they were getting very different HbA1c results, but he had not accused or pressured me in any way about this until I spilled the beans. It had taken me nearly a decade to stop fighting and to live with diabetes.
I am sure that I developed depression in my teenage years but this was not picked up until after my first baby (again a whole story on its own!) This doesn’t mean I did not enjoy lots of those years and that there were not lots of lovely times, but in terms of my diabetes and growing up, they were hard years. After this I started to manage diabetes in a better way. Things were still not what the targets say they should be, as I needed to fit diabetes management with my young adult lifestyle and I still had lots of issues and problems that I went through – but they were definitely better.
I completed my Degree in Social Work in 1988 and started work 1989 in the welfare area. This was hard work and very stressful. I had my first baby in 1993 – this was also very hard, but wonderful. I became a single mum for about 2 years from when he was about 9 months old. I married my husband in 1998 and had my 2nd baby in 1999. I discovered the many challenges of parenting with diabetes – like hypos when the baby is screaming for a feed! He suffered terrible health problems – not diabetes related, but his early years were very hard times and my diabetes made it harder and my health was affected. I also went through post traumatic stress disorder, anxiety attacks and depression from a horrible case at work during these years and was pretty sick for some time. Throughout all of this, good and bad times, diabetes was ever present and was affected by the problems and stresses in my life, but I was much more honest about my diabetes and tried as much as I could to treat it as kindly as I could.
By the time I had my third child at age 40, my life was completely different. Diabetes was a very important part of my life and one that I had learned to accept fully. The insulin pump changed my life and my experience of pregnancy – all for the better.
Life is about more than diabetes and we can only do our best at any given moment. I believe that life is about balance and diabetes is about balance. Realistic expectations are very important. Enjoyment is also! We all want some peace in our lives. It is important to have realistic goals and expectations for diabetes management at various times of our lives. Advances in diabetes care and research are moving very fast and we have much more flexible management choices than when I got diabetes.
It is important to get support and realise that fear and anxiety about things are normal at all sorts of times. Just because you get diabetes, you don’t become somehow superhuman, or become able to step away from all the normal things in life. We will all go through all sorts of usual things – diabetes does not make a teenager any less a teenager for example. It is also important to remember that diabetes and life are not static things – you can not get things on target and then they simply stay like that forever – we all will have ups and downs and that is ok too, that is after all what being human is all about.
Telling people they are “bad” if their diabetes is out of control is not helpful. Today I manage my diabetes as best I can and try not to beat myself up on the days when I have hypos or get a high reading on that little old blood glucose machine! I realise that at times, I battle things relating to diabetes that nobody else knows I am going through, that it can affect my every waking and sleeping moment and make things that other people take for granted very hard. I try to seek support and have a whinge to people who understand when I can, to manage this. I also try to have perspective and accept that diabetes is one part of me and a part I try to be kind to as much as possible, therefore being kind to myself. Mostly I realise there is no “perfect”, there are no “bad and good diabetics” – we are all human and none of us want to be sick. We all do the best we can in the given circumstances.
So I guess I have learned to “love” diabetes, even though on some days I “hate” it! I guess it is like all relationships in that way – sometimes my sons say they “hate” me and then later they cuddle up on my knee, some moments I feel very angry at my husband and then he makes me laugh. Diabetes has taught me balance, determination, strength, admiration for others, understanding of my fears and helped me get the tools to deal with these fears. It has also taught me that it is important to recognise sadness and loss when diabetes comes along, but also to develop hope and positivity in getting on with living your life and making diabetes part of your story.
What was your diagnosis of diabetes like?