You know when people joke about how, when you have a baby, you’re not going to get much sleep? You’ll be up all night, they say, and you laugh.
Then your newborn arrives, and you realise it’s true. You never knew you could survive on so little sleep. You’re amazing.
Up All Night
After a couple of weeks though, the excitement settles, the adrenalin wears off, and you’re tired to your bones. You ache all over, you eat badly, propping yourself up with sugar, caffeine and stimulants. You don’t know how you will carry on.
You do though, because your child needs you to, you have no choice. And hey, it’s only for a few months, isn’t it? Everything passes, it’s just a phase. Nothing lasts forever.
When your child is diagnosed with type 1 diabetes, it feels much like having a newborn all over again. You come home from hospital in a state of shock, armed with a huge kit list so alien it will take you weeks to find the right places to store it all. Eventually you get used to the tasks required of you in your new role as surrogate pancreas.
But you’re up all night again. The list of things which affect blood sugar is huge, and food is actually the least of it. Hormones, growth, illness, excitement, sport, a bad dream, a good dream, all have the potential to move blood glucose levels up and down as you sleep, in ways that are often impossible to predict.
So you test blood sugar in the night. You prick fingers in the small hours and administer insulin or sugary drinks to keep your child safe. You set your alarm for 3am, sometimes earlier, or later, or hourly, until you can be sure they are safe.
And it’s not a phase. It lasts forever.
On Saturday 4 June, 20 dads whose kids have type 1 diabetes will be up all night in the name of research. They found each other on the Facebook group CWD (Children With Diabetes) Dads, and support each other with the challenges that having a child with type 1 diabetes presents. They’re taking part in Nightrider, a 100km cycle ride through London in the dark. Whilst their children sleep, they will be raising awareness and money for investment in the technology that can support a challenging lifelong condition.
Cyclists image courtesy of Shutterstock.
Diabetes Techonolgy needs more support
As they ride, the dads will be able to watch their children’s blood sugar levels on smartphones and watches, secure in the knowledge that should a low or high blood glucose level occur, an alarm will sound to alert those at home to a problem. Their children wear Continuous Glucose Monitor (CGM) sensors under their skin that constantly measure glucose levels while they sleep.
Nightscout is a self-funded DIY project that allows family and friends to remotely view the CGM data and make contact to check in and advise as required. It is a sanity saver (and possibly a life saver) for the parents involved. Many use it to allow their child the same freedoms as their friends as they gain independence, monitoring levels and checking in by phone when support is needed. But one of the key benefits is being able to see your child’s blood glucose level at night without the need to get up and perform regular finger prick tests. Sleep deprivation for parents is one of the relatively unknown effects of Type 1 on a family.
However, significantly more awareness and investment is required to make this a reality for the majority rather than the minority. The 20 dads will monitor their sleeping children as they cycle through the night, raising funds for JDRF to support vital type 1 diabetes research and their aim to cure, treat and prevent type 1 diabetes and it’s complications.
Find their Just Giving page here.
Why is night time so important?
There are two schools of thought on night testing. Some don’t do it, trusting that they’ll wake up if they experience a low, or leaving a high blood sugar alone to deal with in the morning. Sleep and quality of life is too important. Those that do test do so because they want to achieve the medical target levels required to avoid complications in later life. Things like foot amputations, kidney disease, and blindness, caused by spending prolonged periods out of target range. We do it to give our children the best possible start in life. Only 13% of people with diabetes achieve the recommended levels to avoid awful complications. We want to be part of that percentage.
I wonder if my child will be this diligent when it comes time for her to take over the pancreas night shift. Will she set her alarm every two hours to deal with the rising sugar levels that are inevitable after a pizza? Will she check on herself regularly through the night to catch the lows that result from drinking alcohol? Will she be like my friend at university, and die in her sleep after a party, because she’s too sleepy to get up and test?
I’m hoping that by then the technology for managing diabetes will be even better. Tech advances like Nightscout, and the artificial pancreas could be even better by then, and available to everyone. The drive, knowledge, and science available to diabetes management are incredibly exciting. The amount of money available to progress it is not. Please help change that with a donation, so that life can get easier quicker for the 29,000 children living with this disease, and for the parents who stay up all night managing it.
More information about Nightscout.
See how JDRF are working to support people with type 1 diabetes.