We have been dancing with diabetes for almost a year and my limbs are starting to drag. As soon as we master the Tango it seems we switch to a Foxtrot, then as we conquer that step the music changes again and we start an Irish Jig.
It seems to be an ongoing rhythm that never pauses for a break or refreshment.
And I am tired; we are all feeling the impact of tapping our toes in time to a dance that doesn’t have an end. The tendrils of diabetes stretch into all aspects of our lives, it slides into our days, dominates our nights, challenges our unit, threatens our familial bonds.
I feel that I am not a good enough mover, I lack the co-ordination to be all I need to be to try and lead this disease until twin girl is old enough and ready to take over. I feel that I am letting her down by sighing with exhaustion and moaning with the constant movement.
I speak to other diabetics parents who leap out of bed to test sugars through the night; the thought of running high or low blood sugars is motivation enough to raise them from slumber. I sleep like the dead, whilst I dream of the dance, but then the alarm sounds and I growl, and I rise, resenting the music that plays on in my ears, and I test blood sugars and normally dread the results. Does it mean more alarms, does it mean more worry, does it more fear, is the dance migrating towards a whirling waltz.
I return to sleep, alarm set for the next test, and I feel guilt for wanting to throw my tap shoes away, to walk like non diabetic parents, to have a night in their shoes. I feel guilt for wanting a life that my eldest daughter will simply never have.
It has been a long week, high blood sugars one night, excessive hypos the next day, the dance has changed almost hourly and the lack of sleep means we are stumbling through the steps. I have tried to befriend this condition, to work hand in hand, but this week I loathe it, dread it, and fear it for the disruption it can cause.
There is no point to this post, no rhyme or reason to the words, I merely long to be a better dancer, someone who finds diabetes an easy partner to move with. I want to push away my moaning and find comfort in knowing the steps.
I need to learn to dance a bit better.
Bear with me whilst I try.
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Thanks
There doesn’t always have to be a point and some music isn’t for dancing to. You’ve reminded me of one of my favourite films, running on empty. What’s the difference between Beethoven and Madonna? You can’t dance to Beethoven.
Sorry. There’s not much point to this comment except to let you know I’m listening.
Sorry 🙁 Hang in there. I can’t imagine the fatigue you must be going through. You may not feel it, but from this perspective you are doing an awesome job. 🙂 Hugs from across the ocean.
So beautifully written, but so sad to think you’re all having to deal with this. Unfair. I can’t image how tough it must be to deal with this condition day in day out but hang in there, you’re doing a great job xx
Hang in there. 36yrs ago we went through all the same dances. We have gone from boiling syringes to an insulin pump and a wonderful daughter who is a very clever ITU nurse. I will be thinking of you daily.
The music constantly changes, but in time, you learn to sway rather than dance to the beat. My experience was so similar for about the first 18 months after my son’s diagnosis. Now, three years later, the night time checks still happen, but less often. And I too, must set an alarm clock! The simple fact that you have your dancing shoes on, means you are giving your daughter the very best of care.
Beautiful post Jane, and it made me stop and think, about everything you do for your children. They are so lucky to have you… and it’s okay to moan about it all, it’s been very, very hard work for you. X
Fantastic and well-written post. I’m sure your dancing is amazing, and that you are doing a great job of dancing in your sleep. I have no clue of what you are going through but think you are inspirational. Hope the dance turns into a slow one x
In 18 years of dealing with special needs I’ve never leapt out of bed with joy in the middle of the night to see to the needs of my kids. You wouldn’t be human if you didn’t find it hard sometimes xx
I wasn’t diagnose with type 1 until I was 23. Even at that age it was a shock, and life changing. Really life changing. Frustrating. Time consuming. Impossible.
I can’t imagine how it is to care for a child with this disease and I have to admit it is my nightmare that my son will be in that 1% , the chance of developing it that the specialist told me my child would have before I became pregnant.
It’s a never ending slog.
The trick to being a good diabetic. Never giving up. You are teaching by example.
Thanks for your comment, and I hope you evade the legacy of type one – something tells me you would cope though x