My life with type 1 diabetes
Hi my name is Michelle. I am 37 years old and was diagnosed with type 1 at the tender age of 2 years. My mum tells me that at the time the Doctors didn’t believe her when she took me to the Doctor’s and asked for the Diabetes blood test, he just said I had a virus.
I can still remember only being on one needle per day and mum and dad having to boil the glass syringes and metal needles and in those days urine testing was the only thing around. As a child I was under the close supervision of the now President of the International Diabetes Federation who was then at Camperdown Childrens Hospital in Sydney. I remember being given the lectures by all the medical staff about how I need to take care of myself and eat as my parents said and was definately not allowed anything with sugar in it.
At around 8 (I think) I was included in a trial for the first blood glucose testing machine in Australia, at the time that was a real breakthrough. The machine was huge and was run by an old fashioned meter method rather than digital and had a red light as a timer and you had to use water to wash the blood off before puting it in the machine to read. Also at this time I was then taught how to give myself my own needles.
Then I hit the teenage years in which at thirteen I went off the rails, hated high school was bullied by a lot of kids and my friends from primary school no longer wanted anything to do with me. This I think is the time where I really started to feel depressed. I didn’t like who I was because I had diabetes and was different to everyone else.
The week before Christmas of that year I was put into hospital with readings of 44mmol+. My insulin was changed from beef to pork and I was restabilised and got out of hospital on christmas eve. I feel diabetes has ruled my life since then and have always tried to achieve the control that most would consider impossible for a diabetic. In doing this I have had numerous hypo’s (low blood glucose) over the years and am now at the stage where I am nervous to go anywhere without food and my machine, you could say that I am obsessive about it.
As a teenager my parents would not allow me to leave home to go to uni as they said I would not be able to look after myself so therefore I have ended up doing admin work and hate it. I am afraid I was always threatened with this one. When I left home at 25 years to move to the coast I was told once again that Ii would not be able to look after myself and I was determined to prove them wrong (which I have) but am so obsessive with it, the condition rules me.
I now have two children who are 5 and 2. Before my first pregnancy I was still only on two needles per day but pregnancy changed that and I had to go to four for the first time in my life at 30 years of age. I was praised throughout my first pregnancy for my control where I was completely obsessive about my readings. My HbA1c ran at 5.2 throughout. But after having Liam the wheels fell off and my control went a bit crazy. I was either hypoing or having highs. My second pregnancy was a little more difficult and my HbA1c ran around the 6.5 to 6.7 mark, making me very nervous. I also suffered from severe depression after both pregnancies because I didn’t feel I had the confidence to raise kids and was paranoid about them getting diabetes.
Eventually I managed to talk the Dr’s into letting me go on Lantus, and then 12 months ago I was accepted to go on the insulin pump. In some ways the pump is easier but in others I am much more obsessive about testing, I average about 18 tests per day, and feel completely out of control emotionally and physically. My husband feels that I am not accepting the condition and if I did I would be a lot happier. I have had enough of the regimentation that I have had to live with all my life. I feel that the condition rules me and therefore I have no confidence in who I am and what I can achieve.
I would love to be given the opportunity to put my name down for the trials for the islet transplants but because my health is in the hands of the medical staff I feel that I am beating my head against a brick wall. It is ok for them, they don’t have to live with the condition every day of their lives. Any opportunity for some relief would be greatly appreciated by me. Just because I am well controlled and I live away from Sydney where the trials are performed – I would give up my right arm or leg to be able to put my name down on the waiting list. But unfortunately I have to be referred by an Endocronologist and therefore I feel that my life is in his hands and I have no control over my future happiness.
Currently I find it hard to get up every morning to tackle each day. I think about being run over by a bus to put me out of my misery and save my family from my condition. I have been on anti depresants for at least 9 years off and on, and currently I am at my worst. Every counsellor I have been to until now did not have any understanding at all about diabetes and I always gave up going. Very bitter aren’t I…………………