Tuesday, 11 November 2014

World Diabetes Day 2014

Lets Go Blue Together


Claudia is now 13 and we are celebrating our 7th World Diabetes Day. 

Claudia aged 13

 

Claudia has now been living with Type 1 Diabetes for half her life.

Whilst I am sat in bed writing this, my beloved husband looked at me sighed(oh no she's blogging)  turned over and went to sleep  snoring. Stanley the Labrador is at the end of the bed and Luther the cat is busy trying to swipe my hands whilst I am typing. Claudia is 5.3  will she go higher or lower ? Crystal Ball Please! It looks like it's going to be another winning night. Match sticks and lot's of make up will be required in the morning.

Claudia's Journey
Claudia was born at 42 week a healthy 7lb. She was beautiful and perfect and still is. Nothing can prepare you for parenthood. The sleepless nights, nappy changing, projectile vomit and the irritating husband who loves you. Looking back life was perfect.

2008 = Type 1 Diabetes
As a parent I have mixed feelings. Whilst I am very proud of Claudia, my heart is  heavy. This is not the life I  envisaged her living. As a parent one of our many roles is to make things better and solve problems. When Claudia shouts or cries to me, "mummy I want this to go away and I want to be normal" the hardest words for a parent to say are: I am sorry I can't make this better and I can't make it go away. These are the words I often say.

A day in the life of Claudia

Me: What's your BG Claudia
Claudia: Mum I have only just got up, leave me alone
Me: Claudia
Claudia: 9
Me: Correction please
Claudia: I know.....
Me: Don't forget to weigh your breakfast
Claudia: Oh for goodness sake leave me alone I know!!! ahhhhh!!!
Me: Are your cannula's ok.
Claudia: Mummmmmm shut up.

The above  is  a constant 24/7 like  the film Ground Hog Day. It continues via text whilst she is at school or out with friends.
Claudia has to weigh, carb count every item of food she eats and calculate the insulin required. She has to have one cannula changed every 3 days and another every six days. Between 2 & 10 finger prick tests a day.We have to try and keep her blood glucose levels between 4-7. To be honest the chances of me being Prime-minister would be more realistic.

The last 12 months have been a challenge. Tantrums and Tiara's are to be expected having 5 beautiful daughters. Then add the T1 and hormones! The tantrums become spectacular and several tiara's get  thrown.(literally). 
Oh what a special joy watching, ducking  and diving through the mysteries of unexplained high and low blood sugars. The teen rebellion. I'm not testing, taking my bag out, not remembering to bolus, etc.

Top 5 T1 Sad Days !
  • Diagnosis 1st May 2008.
  • First birthday party after diagnosis.
  • Begging for a pump.
  • DKA Due to a simple sickness bug.
  • Having to administer the "orange kit".
 Top 5  T1 Funnies & Good Stuff.
  • 8 months pregnant, losing my balance whilst injecting and rolling backwards in a public toilet holding a syringe. Not a good look for a pregnant woman, especially in public on the floor.
  • Trying to leave the hospital mid way through labour as Claudia was  hypo and I was a little "high" on gas and air.(not at the time)
  • Claudia finding her voice and debating with her clinical team.
  • All the amazing friends we have made who truly understand.
  • Claudia telling people when they are talking ************** about T1.

Highlights of 2014

We decided that we would buy a caravan. This seemed to amuse some of my friends as 99.9% of the time I trot round in 6inch heels. I loved the fact that we could pack everything into the caravan and just go. Donald and I only had 1 domestic whilst putting up the awning.
I wasn't prepared for  the CGM echoing through a campsite in the early hours of the morning. Followed by "get off me, what are you doing". I am fine. Which added a symphony to the beep beep beep of the CGM. Could we be any louder?  Oh yes!  the other girls started telling Claudia to be quiet and just do a test. What can I say it was a very special first night in the caravan. It was one of those occasions that I could have happily jumped on the CGM.
Ah the unexpected joys of T1 and technology!

Seven years in I am not as angry as I was initially. When Claudia was first diagnosed I was devastated but very angry. Why Claudia? How I refrained from knocking people out who said the following I will never know:

God knows you can manage .......................................(mmm he got that wrong)
Should she be having sweets........................................(should you)
She looks healthy to me................................................(what should she look like)
She has insulin so it's easily managed...........................(lol!!!!!) 
Will she grow out of it...................................................(Pardon)
She must be used to injections.......................................(no)
It could be worse.............................................................

So many more.................................,please feel free to add at the end of my blog.

These days my skin is a little thicker and I am not as easily rattled.

2014 has been an exciting year for new technology with more due. To date no cure. 
I do believe that some of the medical advances that are currently in clinical trials are exciting.
The Families and Children's Act  2014. New Legislation that hopefully will help support children living with long term medical access the support they deserve within education.

I feel blessed that I have many adult friends living with Type 1 who are truly inspirational. They highlight how positive life can be as an adult living with T1. They are also honest and share the good, bad and truly ugly side of T1. This helps me support Claudia and be prepared for the years ahead. An insight no clinic could provide.

  T1 Delightful habits:


Result 7.2! oops dropped the strip.


Dropping test strips... to find Claudia follow the white strip road!
Chewing test strips
Used Cannula  stuck  to the floor
Half chewed  glucose tabs........








Please share around the world the following links below:





 It's life support that is required 24/7


For support living with Type 1 Diabetes & the latest research:
 http://www.jdrf.org.uk/

For support living with Type 1, Type 2 Diabetes, MODY etc. & research:
 http://www.diabetes.org.uk/


Insulin Pumps, CGM & Blood Glucose Meter Links:

http://www.medtronic-diabetes.co.uk/

http://www.mylife-diabetescare.co.uk/mylife-omnipod-discover.html?gclid=CLKmtrKl8cECFeWWtAodpSEAuQ

 https://abbottdiabetescare.co.uk/

http://www.roche.co.uk/home/products/diagnostics/patients/diabetes-patients.html

http://animascorp.co.uk/

http://www.advancedtherapeuticsuk.com/dexcom-g4

http://cellnovo.com/

http://www.glucomen.co.uk/

http://www.novonordisk.com/diabetes_care/insulin_pens_and_needles/