Sunday 30 December 2012

Goodbye 2012

Goodbye 2012!

Add Type 1, Coeliac & Dsylexia, life can be wild!

2012 has been a challenging year in many ways. I sometimes wonder how I get through each day on so little sleep. Whilst I always have a smile for everyone I have found as the girls have got older, life is even more demanding. Keeping a 4, 6, 7, 11 & 14 year old happy, healthy and on the right track is mind blowing. Add a husband and often there is no time for me. All school reports were wonderful, so I must be getting some thing right.
On a more positive note Bella aged 14 is now 5ft yes!! Having coeliac undiagnosed for so many years has really affected her growth. Having the odd teenage rebellion gluten party hasn't really helped. Bella is due to go back in 6 months for a joint endo/gastro appointment. The Consultant's want to do a fasting glucose and some further bloods.
Darcy now has an individual education plan in place and her reading has dramatically improved.Her writing has  improved but in reality we have a huge amount of work ahead of us. Darcy was diagnosed with Dyslexia in April 2012. I have had to learn so much in order to support Darcy. Her new teacher has been truly inspirational.
Felicity is flying and reading several years above her age. Sometimes I have to remember I am talking to a 6 year old. Felicity is always planning some kind of mischief. How siblings are so different.
Purdey is growing up so fast and will start school in September 2013. Purdey was born the year Claudia was diagnosed. Great sadness and joy all in 1 year. I think hand on heart I am still recovering from 2008. Purdey is full of character and is always giggling.
The week before Christmas Claudia pulled her cannula out. She called me crying. I was at work and a 30 minute drive away. She said that she couldn't put a cannula in and hung up on me. I felt like the worst mother in the world and completely useless. I called back and a very tearful Claudia had managed to put her cannula in her arm of all places. A teacher was with her but had no idea what to do. I was very proud, sadly part of me felt I had let her down as she shouldn't have all these worries at the age of 11. In some respects I am glad the teacher witnessed the tears and upset as often they only see our children when they are "Ok" they don't see what happens "behind the scenes". Needless to say I got fleeced for a red sparkly watch by Claudia not the teacher.!
We went out for Christmas Lunch this year. How "out there" have Claudia and I become. We did a full cannula change at the table and even negotiated where the cannula was going to be placed without too many hysterics. Good in many respects as I never want Claudia to feel embarrassed about living and managing Type 1. Then came the heart felt sigh when I looked around and saw all the other children and families just tucking in to lunch, whilst we calculated how many carbs, took into account excitement etc. In the end we just stuck our finger in the air and hoped for the best!! I had a Bucks Fizz to compensate as having Type 1 OCD makes guessing carbs a little stressful.
Claudia had decided she wanted a break from her CGM, another deep breath for me. Claudia is 11 and as you would expect she wants more and more of a say in how she manages her condition.........
One of my dearest friends posted last night, he has been suffering from "high blood sugar" as he stated carb counting, calculating correctly yet nothing was bringing his levels down. What touched my heart and echoed what Claudia had said yesterday. Just 1 meal without calculating, having to think, weigh would be wonderful.
Whilst I am not Type 1, I so understand as Claudia had a mini rant in a restaurant as I unwittingly asked her to check her BG. She flounced off to the toilet to wash her hands shouting, why can't I just eat a meal, just 1 without all this fuss!! 
Type 1 is so very complex and people often think that it all associated with food. In reality that is just a tiny part of controlling/managing Type 1 as so many other factors influence blood glucose levels:

Everyday Life Basically!

Every New Year since Claudia has been diagnosed I pray for a cure. I want my little girl to have  carefree teen years. People say, Claudia is always happy and has a fantastic time. She is really responsible. All the above is true, however Claudia shouldn't have so many worries at the age of 11.That's what people often forget.
For anyone who doesn't fully understand Type 1 Diabetes. Claudia needs insulin each and everyday to keep her alive. Even with insulin keeping her healthy is a daily challenge. Achieving "good control" a very subjective statement is like dancing with the Devil and requires 24/7 input from Claudia and myself.
From the bottom of my heart I would like to thank all my friends who have made me smile when I often feel like crying. Who listen when I am on a rant because I am just so frustrated with Type 1 and how life can be unfair and unkind.

Wishing you all  Magical 2013.

Claudia just before she was diagnosed, maybe 2013 will be the year our carefree days will be returned. Always remain hopeful!







  1. Awwww I think you are doing a marvellous job, I know what it is like for myself when I was a young girl growing up with diabetes...I got resentful of the condition & I hid sum silly things from my mum such as not doing blood test or injections, which I am paying for now :( Now I am on insulin pump Ive often wondered if it may have been different if pumps were available in the 1980's when I was at high school- this I will never know but I definitely hope that thanks to more advice available & more sophisticated equipment that it will stop other youngsters falling in the same trap that many teenager's have over the years. Hope you all have a happy & healthy (Well try your best anyway!! Lol) New Year. Your blog is a joy to read & your hard work is worth it 100% xxx

  2. I have been a juvenile onset since 1965 and I haven't wished I wasn't one. I knew if I wanted to eat sugar or anything off my diet I needed to have more insulin. I didn't get any special treatment from anyone.

    I am not on the pump but use a syringe and vials. I also don't count carbohydrates. I do it the way my parents were taught. I was forced by my parents at the age of 9 to take control of my diabetes. I could no longer go to them for any help. It was luck that I had paid attention to the amount of food I was suppose to eat. So the way I learned is how I still do it. I have no complications from my being a diabetic. I have two children, both in their late 20's and neither of them are diabetic. I am the only juvenile onset diabetic on both sides of my family in SIX generations.

    The one thing we must remember is that Juvenile onset diabetes is manageable. Yes high and low blood sugars will happen even when you're doing the best you can. But if you take control of this disease you will survive and I have.

  3. Well you have been very fortunate then....I was diagnosed 10 years after you at the age of 3. I have 1 son age 10 & my diabetes has been 1 hell of a rollercoaster sum self inflicted but not all.I wish I could say that I have no complications but I do so that is my problem but I know by reading sum stories on type1 rants & moans & other diabetes groups that I am not the only 1. Glad you have been able to control your diabetes. All the best for the future x

  4. I am glad LRM you have managed so well.I remember my carefree days as a child and teen, that's what I would love Claudia to experience rather than the one of managing Type 1 Diabetes. As Angie says so many young people and adults with Type 1 have found it tough and have long term complications. I will always pray for the cure and have the biggest party ever the day they find that cure. I am pleased that you haven't found life challenging in the respect of Type 1 LRM

  5. I didn't mean to sound like it isn't challenging. It is. But there are things that are more so, cancer and aids.

    The hardest on me was I had to take care of myself because my parents refused to. Let me tell you for a 9 year old to be forced to have total control of this disease is not a picnic. I did not know another diabetic until I went to diabetic camp for 2 years, and I didn't get together with them. Then I didn't meet another one until I was in m middle 20's. I still don't know any other diabetics that I meet up. When I say diabetics I mean juvenile onset and not type 2 since they are 2 different diseases.

    Menopause has been a real problem for me. I can go from 30mg/dL to 300mg/dL (1.7mmol/L to 16.7mmol/L)in less than half an hour with no warning signs. The doctors have no idea why I'm this way. They haven't found another diabetic like I am. I also have to go from 18 units of N at my pre-supper injection to 3 units for a week, then I have to slowly increase it .

    I didn't look at being a diabetic as horrible. I had to have shots and that was it. Everyone I knew knew I was one. Not everyone knew exactly what to do, but they knew I was a diabetic. I spent the night a friends homes. I went to school functions. I wasn't differently than anyone else I knew.

  6. I learn a lot from these stories. What you're doing for all involved in diabetes is a really excellent thing and tho I can't even begin to understand what it's like to live with this every day I have so much respect for you. Easy to say but don't give up.
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