Saturday, 5 June 2010

When it all began

On May 1st 2008 our lives changed forever.

Claudia had been unwell for over a week, we had noticed she had lost weight, she was drinking lots, going to the toilet and she was very tired. We spoke to school to see if there were any problems, we spoke to Claudia and she said she was just very tired. Diabetes did flick through my mind, but wrongly I thought Type 1 was always genetic(how wrong was I!). We took Claudia to our GP on 1st May 2008.Our Doctor was awful so we went together, we were in for 30 minutes having a heated debate to which he concluded Claudia had a sore throat and would see her in a week. We were not happy , but what do you do?

I waited for the Practice to close and took Claudia to Primary Care, they said very little but sent her straight up to the children's ward. By this time Claudia was not even breathing properly. Ward 8 were fantastic, they knew within minutes it was Diabetes. They then began to wrap her in hot wet towels as they couldn't get a drip in. Claudia was crying a lot and begging me to get them to stop, I knew I had to let them get on with it, but it broke my heart hearing her so distressed. They eventually got a line in and the treatment started. 24 hours followed in the High Dependency Unit wires and monitors everywhere, Her blood pressure was in the twenties and they were taking blood every few hours. I never slept. The hospital could not believe I had been to see my GP just a few hours earlier. They said a couple more hours and she would have been in a coma. I remember Claudia saying please don't cry mummy, it scares me when you cry.So I had to hide my emotions.
I asked her why she didn't tell us she felt so unwell, she said "mummy I didn't know how I felt".

Our hospital stay lasted a week. I was 8 weeks pregnant at this point in time with severe morning sickness and 3 other children. Without my amazing husband I would have never got through it. Oh and we had never ever seen Claudia eat so much, she was even licking the plate.

What sticks in my memory was how Claudia coped with it all, she never complained, even when we injected her for the first time, and believe me I was rubbish at it!

We came home with more medication than Boots the Chemist, and slowly the realisation that although we had insulin, it was the start of a long rocky road to gain control and indeed to try and understand diabetes, which I believe is a Black Art.

The next 12 months consisted of Hyper and Hypo episodes the diagnoses of Coeliacs Disease,
3/12 blood tests and sticking to such a strict regime of eating times.
The most challenging of all is the different behaviour that comes with the highs and lows, drama queen, tears, anger, hysterical laughter(ok), lashing out to name but a few. Also judging is she hypo or just being plain naughty?

We have always achieved below the 7.5% that the hospital like children to be. Has that meant we have had good control, in my opinion no, yet the hospital are pleased as they hit targets, I hate numbers and feel they need to find another way.

I went into school every day to inject Claudia, I felt like a Celebrity Mum without the financial benefit. Being heavily pregnant and then breast feeding doesn't make for a glamorous look.

The biggest highlight was Purdey being born which brought joy and a welcome distraction!!!!!!
(Donald did have to leave an hour after she was born to give Claudia her next injection, sadly volunteers to do this are few and far between)

We then won several battles, school started to inject, we got a pump, school cooked gluten free meals, we got a new GP, life was looking brighter for the whole family.

Not so good: you get to find out who your true supportive friends are, this includes family!
A decent nights sleep happens rarely, seeing your children trying to come to terms with a massive change in their life is soul destroying.We had a box of counterfeit needles.(ouch)
We never went out until Claudia got a pump.

Claudia's teacher went round the class asking every child what they thought was unfair, Claudia said"it's unfair I have diabetes" her teacher almost cried and it made me cry at parents evening.

Big challenges: were to make people understand that sweets didn't cause it and yes she could still have sugar.

Gosh we are now 2 years post diagnosis, how we have got here I don't know.

My current challenges are to raise awareness of Type 1 nationwide, good support in all schools and to stop the PCT's playing God!

Despite all the above we have had soooo many good times that includes some of the sticky situations diabetes has got us into.

Do I wish I could change things, do I wish there was a cure ? Yes I do !!!! I pray for a cure every day!

I thank my many friends who humour and support me when I am on my soapbox, which include my husband, Lee Nevit(batman) my closest friend Marie-Louise Cassidy and all my network of friends all over the world. All have inspired me to keep going and at many low points make me laugh.

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