Thursday, 12 June 2014

Diabetes Awareness Week 2014

                       7th Year Of Diabetes Awareness Week.

                                     We have made so many fabulous friends along our journey

Our first event with Lee Nevitt in Bournemouth

Claudia aged 7

When Claudia was diagnosed, she was in DKA, hours away from going into a coma. Missed by our then GP. After diagnosis I was very angry for a long time. I think I was angry with myself for not realising sooner, she was so unwell. Then angry at the GP who missed it completely. Every time an article or TV show portrayed T1  Diabetes incorrectly I just hit the roof with steam coming out of my ears, followed by a rant on face book and to anyone that would listen. telephoned my husband even though he was in a meeting. The anger has faded over the years and replaced by acceptance or perhaps I can manage those emotions better. My husband may disagree. I now know I can't change anything, I can only move forward teaching Claudia to be loud and proud of who she is. Yes I am T1, Coeliac! 

10 Downing Street are you listening.

Deep in my heart is a very sad place that I don't visit as often these days.When I do it can be very dark and lonely. It's hard to express how I feel and for people to understand. Having 5 girls and remembering my own childhood, I am very aware that Claudia has not had a carefree day since she was 7. Yes she has  fun, laughs and never misses out. She can never do anything without the following..... 

To date Claudia has endured approximately:

15K finger prick tests
2.5K insulin injections
600 cannula changes
30 Clinical visits
1 biopsy
Developed Thyroid Antibodies
I have lost count of bloods taken
Gluten free food

Do I find managing Type 1 easier.... I am not convinced I do. Each year brings something new to the mix. At this moment in time I have the T1 Teen era. Interesting, challenging, frustrating and on occasions mind blowing. The beautiful Claudia has the tongue of a viper and is now too big to pick up and put her in the room, until she has finished ranting. Instead we have invested in headphones. When I ask if she will wear a CGM, she responds with DREAM ON!! The control freak in me, has taken a battering. When I ask her to test her BG she sticks her fingers in her ears and says la la la la.

The discarding of test strips, pods and lancets has tripled. Claudia is that blatant she will drop them in front of me, along with the clothes and anything else she can just drop.
The sleepovers and school trips have increased, which have often given me sleepless nights. Especially when she calls from Wales and says, ooo I am 1.8. The funny side was a pod wouldn't stop bleeping once she had removed it, she persuaded the teacher to jump on it. I love her teachers they have been amazing. Next year will be a true test as Claudia is going to Paris.

No one could prepare me for the gut wrenching feeling I would endure when I went back to work full time. The tearful phone calls, when her levels were not right. I was no longer 5 minutes away but at least 30. It has been a learning curve for us all. I have just secured a job locally which has lightened the heavy feeling I have often felt, when leaving for work. I have to remember that I have 4 other beautiful daughters, 1 husband (yes, only 1) and Stanley the dog. the logistics of sharing myself between them all is virtually impossible. At one point I lost who I was. Nowhere does anyone prepare you or give you the tools to manage all of the above. It's learn as you go. Oh boy, have I got it wrong on occasions. lack of sleep is not good. I have found the TV remote in the fridge, put my clothes on inside out, cried at clinic. Woken up thinking I don't remember doing a cannula change, but the evidence is scattered on the floor.

Claudia aged 13

Today we visited Salford Royal, to see if she may have Waardenburgs Syndrome. The Consultant thinks not. He feels that the grey streak in her hair and the white patches on her skin may be vitiligo but he is not 100% sure. Claudia's first question. Will you need to take blood? He replied no. Claudia said, good because you were not going to get any. I still like you at the moment. He has taken photo's and prescribed 1 cream and 1 suncream. If they have grown in 6 months time he will carry out a biopsy.

The last 7 years have brought:

Better access to pumps

More access to CGM's

Wireless pumps

Children's Tariff

The social network has grown beyond belief

New Legislation for Children in Schools

Campaigns galore

If you are living with diabetes, know someone living with diabetes or you have found my blog by accident,

Please share these links to raise awareness:

Snap shots of a day in the life of a child with Type 1

 Know the Symptoms Of Type 1 Diabetes, any age, male or female it can develop, please be aware.

                   My family!

                              Each day I say a little prayer for all people living with diabetes.   

                                                                 It short and sweet.

                                                Please find a cure!

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