This is hard to write because doing so means I need to drop my guard, remove the armor, wade through the thick growth mindset and my ‘I will not be defined by diabetes’ persona to acknowledge my deepest, darkest fear when it comes to living with Type 1 Diabetes.
The cold hard truth and why funding Continuous Glucose Monitors (CGMs) for people living with Type 1 Diabetes is a no brainer. Why is no one listening?
Trigger warning: This article contains information about Dead in Bed Syndrome which may be distressing for people living with Type 1 diabetes or their incredible supporters. If you fall into this category, please skip this blog and know that I’ve got your back. I share this information to raise awareness amongst those not affected by Type 1 Diabetes to encourage more people to become an ally and support our fight to fund CGMs in New Zealand.
OK, so here goes. Let’s start at the beginning…
A continuous glucose monitor clearly displays a person’s blood sugar levels, the direction they’re heading and can alert when they’re dangerously high or low.
High blood sugars (Hyperglycemia) can lead to life threatening Diabetes Ketoacidosis and a range of long-term complications.
Low blood sugars (hypoglycemia) can cause ‘lack of coordination, chills, clammy skin and sweating, tingling or numbness of the mouth, blurred vision, headaches and confusion. Everyday tasks and coordination prove to be difficult too.
Untreated severe low blood sugar can be dangerous. It can result in seizures, loss of consciousness or death.
Diabetes Management is a 24/7 job. It doesn’t take a break when you need to rest, recharge or sleep.
Luckily actively monitoring your blood sugars and utilising alert settings that CGMs offer can help all people living with Type 1 diabetes better navigate or avoid blood sugar fluctuation, especially those that occur during the night, a time when our bodies need to be resting.
Using a CGM can improve a person with Type 1 diabetes overall management and provides peace of mind to parents, caregivers and whanau.
Let me break this down and spell it out for anyone (predominantly PHARMAC, our drug funding agency and the New Zealand Government) that continues to place this dated and poorly funded model on a pedestal.
‘Peace of mind’ in this example for people living with Type 1 diabetes, their parents and supporters means being aware of any life-threatening fluctuations to blood sugars during the night and are able to wake to treat them, so they are not found dead in bed as the sunrises.
This is my biggest fear. I imagine my husband rolling over and discovering my lifeless body, or worse my children as they climb into our bed seeking comfort.
“Dead in bed syndrome is a term used to describe the sudden unexplained deaths of young people with Type 1 diabetes and is characterized as when someone with insulin dependent diabetes has gone to bed seemingly perfectly fine and has been found dead in an undisturbed bed.” Diabetes UK
A lack of detailed post-mortem notes has meant that the cause or causes of dead in bed syndrome have not been confirmed with certainty. The evidence that has been available suggests that deaths could be caused by nighttime hypoglycemia triggering disturbances in heart rhythm or cardiac autonomic neuropathy (damage to nerves that control the functioning of the heart.)” Diabetes UK
Dead in bed syndrome is rare and thought to count for about 6% of cases of all deaths in under 40-year-old people with Type 1 Diabetes and because of this is often not talked about to avoid unnecessary worry. However subconsciously we know it exists and carry that load as we nestle down for the night.
A Continuous Glucose Monitor provides reassurance that people living with Type 1 diabetes will wake in the morning!
There is currently no funding for CGMs in New Zealand. This must change. Increasing PHARMAC’s budget is the first step.
Please help make funded CGMS a reality in Aotearoa allowing people with Type 1 Diabetes and their supporters to sleep easy. Sign and share the Patient Voice Aotearoa petition at www.sign4life.nz