Thursday, 10 November 2016

The story so far...

November 22 2016 will be my 25 year diabetes anniversary (diaversary) I’ve spent the last twenty something years in denial

Early 1991 I was a normal 10 year old, healthy, and carefree, my little life was perfect

Then, for no apparent reason I began to need to pee constantly, I was always thirsty, so thirsty that I didn't care at all when I was banned from drinking juice and told to drink water.
I remember simultaneously sitting on the toilet and drinking from the tap of the bathroom sink not able to work out which was a priority.

My stepmum was a nurse so took a urine sample to the hospital to dipstick test, when there was no glucose in there, I was accused of attention seeking and was banned from drinking after 6 p.m.

In November 1991, following a call from the school about my frequent urination and being caught drinking from the tap, another urine sample was taken, this time to the GP who said there was massive  glucose present.

As we walked out of the GP, Dad told me I was diabetic I asked if that was why I was so thirsty, when he said yes I was overjoyed, not at being sick, but  because it was something and not just in my head.

My memory of the hospital today is still clear, I  remember people rushing around me, pricking my finger, talking about me but not to me.
I was given an injection of insulin and told to sleep, which was  impossible with the hourly glucose testing

By the morning I still didn’t really know why I was in hospital or why I was having my blood tested hourly.
Then Salli came, she was the paediatric diabetic nurse, she explained as well as she could what was happening, I gave my first injection and by lunchtime I was starving, having been nil by mouth to that point.

The following your morning the doctors induced a hypo, so i knew the feeling to watch out for and we were done, as soon as my parents were happy, they could take me home.

Adjusting to diabetic life was pretty easy, my parents made me food, I ate it. If I wanted something I couldn't have, I accepted it, I don’t remember ever being bothered by the injections and I loved the attention I got when I had to test my sugar in school.
And then came secondary school, I was given more freedom with my food and I started to rebel, I became quiet and massively self-conscious, I just wanted to fit in and be like the other girls and this meant eating whatever they ate - chocolate, cakes, crisps -  you name it.

I worked out a way to manipulate my glucose meter into giving me the results I wanted so that nobody would realise how much junk I was eating during the day.
I was put into foster care at age 13, I had no idea how to manage my diabetes, and neither did any of my foster parents, so my diabetes was ignored.

As i reached my late teens, things got worse, I was introduced to alcohol and nights out, I still wanted to be just like everybody else and I ate and drank what I wanted, when i wanted. I never skipped an injection, but I was on set doses twice a day and it just wasn't enough to cover the carbohydrate I was consuming,

Eventually testing my sugar levels wasn’t an option I didn't want to be the oddball of the group so I made up my numbers before each clinic appointment.
A voice in my head told me I was slowly killing myself but I ignored it, not even the horror stories of feet amputation, dialysis and blindness put me off, I was in denial, I just wanted to be normal

Every clinic appointment I shut down, nodding in the right places, but in actual fact I was totally overwhelmed by this unfair life sentence that was hanging over me. As i reached 20, I was invited to clinics and courses but I didn't see the point, besides, I was too busy. Life always got in the way.

I was admitted to hospital close to death when I was in my early 20’s diagnosed with DKA (diabetic ketoacidosis) I didn't know what it was, and at the time didn't know why it happened, instead I had numerous Doctors sternly telling me to have better control. I’d love to say I listened, but I didn't know how to manage my diabetes and I didn’t know who or where or how to ask for help

So I carried on, it had been mentioned upon diagnosis in my presence, that whilst things were better than they were, diabetics still wouldn't live as long as non diabetics, so with that in the very back of my mind. My mantra was ‘you only live once, may as well enjoy it while I can’

In my late 20’s I began carb counting and went on to multiple daily injections, the purpose was to improve my control,but all it did was give me the mental freedom to be even more damaging.

I never knew how much I was injecting, when I felt thirsty (symptom of high glucose) or I ate, I would dial up some insulin on my pen and inject it, if i still felt my sugar was high an hour later, I would give some more. If I felt like my sugar was low, I would eat a bar of chocolate until i felt my sugar was high and then the cycle began again

When I turned 30, I moved to Africa, I took a year's supply of everything with me and off I went,

Age 32 my husband and I began trying for a baby, I had 9 miscarriages, each time I blamed the African food, or water  or too much walking, not once did I think it was diabetes, I was so distanced from the disease.

I knew my sugar was really up and down as I had been testing regularly during the pregnancies, but hadn’t been doing anything with the information
The next pregnancy was going to be my last attempt, and I researched pregnancy and diabetes and was horrified to find out how high sugar can affect the growing baby.
Still self managing the diabetes due to the absolute lack of diabetes care in a developing country I started trying - with all of my heart to reduce my sugars, not for my benefit, I still didn’t matter, but for the baby.
My overuse of insulin caused some significant low blood glucose and I had my first ever seizure, I don’t remember any of it, but my husband dealt with it as best he could and I thankfully survived

The pregnancy was very hard and I had numerous near misses with both the baby and my own life that ended up with me on nearly 6 months bed rest.

She was born in 2013 by C section, and was perfect.
Except for her heart, she was born with a murmur, which was diagnosed as pulmonary valve stenosis.
Regardless of people's kinds reassurances, I knew that despite my best effort, I had caused that with my poor control.

I began falling off the wagon with testing because I was so tired and overwhelmed at being a new Mum in a 3rd world country, and by the time I returned to the UK I wasn't testing at all, I was also forgetting to inject. My Hba1c (a measure of good control) was through the roof.

The absolute turning point for me was September 21 2015, when my beautiful little girl was diagnosed type one diabetic aged just 2 years old, suddenly everything I had been told clicked into place

I had to start taking care of myself because she would be learning from me.
My life changed immeasurably, I had to show her that diabetes is not the life sentence I grew up believing it was.
But the reality of amputated feet, blindness and kidney failure is no longer something I can ignore.

Every action I now take as  parent affects the chances of these things happening to my daughter in the future.

I began exercising, watching my food and religiously testing my sugars and my last Hba1c was in the ‘normal’ range.
I started running in January 2016 and in October 2016 my children watched me run the Cardiff half marathon.

I wish I could say that all of those years I spent abusing my body hasn't affected me, but it has.
I have some issues with my eyes and I have lost some feeling in my feet,but it's not painful yet, and hopefully with good control I can stop it spreading, I’m just thankful that for the time being, it's the only complication i‘ve suffered.

I’m finally at peace with myself, at a place in my head where I no longer feel burdened by my condition. I’ve learned to embrace it instead of hiding it away. I spent all of those years wasted in denial and rebellion, but i’ve finally come to realise, you only live once, make it a long healthy one

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