Monday, 11 July 2011

Type 1 Diabetes Perfection/Expectation/Reality!!

Always Remember This When Dealing With Mr Diabetes I believe The Medical Teams Should Give You This Diagram At Diagnosis!!

Even 3 years on Type 1 Diabetes remains a complete mystery to me on occasions. Yes it is summer and you would expect to reduce the basal/background insulin & adjust the carb ratio's.

Having said that, there comes a point when Claudia diagnosed over 3 years, is only on 4.125 basal rate in 24 hours!! What's that all about?

Bless her she is still having hypo's, having said that they are greatly reduced thanks to the CGM as we have the ability to head them off using the predictive alert.(I can hear the alarms in my head)

People may question, but I have been letting Claudia run a little higher than normal. BG is currently between 7-12. It is a balance of quality of life and control. Claudia's last Hba1c was 6.1% or USA 43. I feel therefore we have plenty of room for flexibility. The heat (lol I know, when talking about the UK) plus hypo's have made her tired, ratty & on occasions Diva behaviour like you wouldn't believe. God help her future husband!

It is such a hard call as a parent: we know that good tight control, will hopefully lead to less long term health issues, however sometimes tight control can be at the cost of more frequent hypo's. I feel recently we have to think about the family as a whole and our quality of life.
Constantly caring and worrying about your child/children can be draining & the battle for good care can be soul destroying.
The most soul destroying part is when your child looks at you asking you to make her feel better.I am trying my best, yet sometimes that's not good enough.

Why is it I feel I am constantly having conversations with my self.(No I am not mad) In fact it often drains me. Trying to get the balance of good control eliminating hypo's & highs is impossible to do on a constant basis.

I wonder if the medical profession truly understand what they are asking of us. Trying to get the perfect balance is impossible, yet so many of us out there are trying to achieve it. No wonder we can have low days and feel we have let our children down.

My daily thoughts:

Will Claudia hypo today?

Will Claudia have any highs?

Have I got the basal rate/carb ratio right?

Will I need to adjust the basal rate?

Will school call today?

Is it cannula change?(check book)

Is it sensor Change?(check book)

What do I need to re-order from GP for Type 1 & Coeliac.

Do school need any further supplies?

Do I have enough Hypo Treatments?

Downloading data from pump & CGM ?

Combination of foods in evening meal in order to help support levels.

What else can I do to make life easier.

Is today the day they announce they have found the cure ?

As a parent, if you don't have Type 1 you have no idea how your child feels.
At this moment in time I am feeling ahhh, the summer holidays are rapidly approaching. It should be 6 weeks of care free fun for the whole family! Sadly that is not the case with Type 1 & Coeliac. Ahh yes the double whammy!! If I get the  insulin balance right you can bet your bottom dollar that the coeliac will throw a spanner in the works!!

I have heard people say to me take a step back and relax. In my opinion that isn't an option. As a parent we get 1 chance to keep our children on the right track before they hit teenage years & adult hood.

Sports Day Tomorrow!! (I will be the shameless parent screaming, when any of my children are running)! Yet my eye will never leave Claudia.

I truly miss our carefree days, yet I will never let Mr D beat me, however on some occasions I now take a big deep breath & chill for an hour or so.(like a 70 mile an hour gust of wind!!)


  1. Great post. And I love your 'daily thoughts' list. Having lived with Mr D for over 20 years I know all too well the struggle to get the balance right between life and levels (and that's without coeliac wading in and messing things up). Sometimes I think parents of PWDs have it hardest of all. All the worry and strain but always one step removed, all wrapped up in a parent's all-consuming desire to do protect their kids no matter what.

    Thanks for sharing.

  2. I think it is a little harder to relax when its your kids and I am with you on the whole "1 chance to keep our children on the right track" thing.

    Its a hard balance.

  3. I've had to cut my daughter's afternoon and overnight basals in half over these last 2 weeks, and she's still having late afternoon and during the night hypos. She was diagnosed 5 years ago. Got her on CGM this week to try and workout what basals etc still need changing. Fortunately the low suspend function on the pump worked after dd slept through the hypo alarm it suspended the basal insulin.