Trying To Manage a So-Called “Manageable Disease”
By: Amy Waddington
“It’s a manageable disease”. Yes, it’s manageable…but it’s also ugly, hard, and exhausting. From the time he wakes up till the time he goes to bed we think about diabetes, what we’re going to eat, when did he eat last, what are his numbers, why does he look so tired and worn out.
Oh nooo, I hope he isn’t getting sick. Navigating through high & low blood sugar throughout the day is SO much more then the number. It effects his concentration, vision, causes fatigue, makes him irritable, and have daily flu like symptoms, as his blood sugar fluctuates.
Every single day he battles and our days are full with “managing the disease”.
Like the moment I suddenly realize I haven’t heard from my son for a couple hours and I’m 45 minutes away. So I check the app on my phone that gives me a peek at his blood sugar and there is no reading.
Not only is there no reading but there hasn’t been one for hours. How terrible of me to not catch this sooner. I desperately try calling him. But he’s not answering his phone, and I’m unable to get a hold of him.
The panic sets in…”is he ok?!?!” Is he passed out needing me to come to his rescue????” That’s the thoughts that go through my head.
I call every single neighbor until one finally answers and graciously runs to the house to check on him, all while he is swimming in the backyard with his dogs.
Then there’s having to watch my teenage son turn away food because he wants to maintain his current blood sugar. He’ll sneak treats because all he wants is a piece of candy or a bag of chips. But knows he shouldn’t have it because at the moment he is “too high” and although he craves it, he can’t have it. It’s heartbreaking.
We’ll be enjoying a day at a Theme Park and my son will be under a shade tree because he is down with low blood sugar from all the activity. And now he needs to eat some more, rest and wait for it to go back up again. So he can get his color and life back in him and maybe enjoy a few more hours of fun he desperately needs.
Then there’s me sleeping with one eye open. Constantly peeking at my phone to reading his blood sugar because caring for a child with type 1 diabetes is 24 hours a day and 7 days a week. There are no breaks or end to my worry. So yes, “it’s a manageable disease”, but please don’t tell me that because we already know. We manage it every single minute of every single day.
My heart behind sharing about Ashton’s Type 1 Diabetes is to educate people about the disease.
My hope is that we would continue to be transparent and authentic while spreading as much awareness as we possibly can. If you know of anyone living with a chronic disease give them some extra grace maybe even take a few minutes to give a high five, thumbs up or take the time to encourage them.
Have the boy read “Sugar Surfing” or “Think like a Pancreas” or Pumping Insulin. We use the super bolus a lot. I also fly the pump: using techniques explained thoroughly in Sugar Surfing. My husband at 70 is so healthy and active.