By Mary Murphy, an engineer, a person with Type 1 and a parent of a child with Type 1
Disclaimer: The information provided is not intended to be used for medical diagnosis or treatment. Please consult your healthcare professional about your diabetes management. Individual symptoms, situations and circumstances may vary.
I was thankfully diagnosed at a transitional period in life during my first term in university. Old enough to be responsible for my own care (mostly), but I remember feeling lonely and surrounded by older people with diabetes at clinic.
As a whole, the challenges I have with Type 1 in my life are around having to continuously do things all day every day and at set periods every 2, 3, 14 and 28 days. Life is just more complex with having to always be on top of prescriptions, having what is needed near us. It’s a challenge to be constantly present in all aspects of your life.
As parents, we’re gyroscopes
Being a parent of a child with Type 1 comes with its own particular difficulties. A good night’s sleep is never guaranteed. Your body becomes conditioned to wake with and without our pre-set phone alarms. Type 1 is not in our own bodies, it’s in our child’s one. The school environment is very dynamic which causes large swings in glucose levels from normal incidental things such as not eating all their lunch, having an extra 30 minutes play at break time because of lovely weather, an impromptu PE session, a rainy day, losing a tooth …
Parents become not only their child’s pancreas, but their gyroscope too. We try to balance the rollercoaster, we act and react, trying to pre-empt these situations with back up plans but as a norm, we are that backup by default when things don’t go straightforwardly in school or at home.
Technology provides much needed support
Diabetes technology is hugely important for the whole family. When away from our care, we rely on technology to give us parents OUR lives back a little bit more. FreeStyle LibreLink◊ and LibreLinkUp§ allow our children to gain more independence quicker and for us caring for our children, to better understand what’s happening at any given timeѰ.
Without technology, it’s more difficult to advise our child’s school or minders from our places of work, but with technology as part of our management toolkit, diabetes care is easier to share, easier to direct an instruction over the phone when you can remotely see a glucose reading and a trend arrow.
A childhood diagnosis takes its toll on parents
It’s not uncommon for one parent of a child living with diabetes to change how they work, downsize their career hopes, reduce hours, take a more flexible lower paid job etc. Parents are constantly in fight or flight mode.
I have built a lingerie label which allows me to work, yet have the flexibility to run. As a bespoke lingerie engineer over the last 10 years in the bridal industry, I handle dresses worth £1000’s every day and working around delicate and expensive white fabrics is a high-risk activity for me
Before the FreeStyle Libre system, I managed this risk by minimising my finger pricks during working hours. It meant restricting eating carbohydrates during working hours in order to trust that my diabetes management continued to be the best it could be, under the circumstances.
A sense of renewed freedom and relief
I believed freedom was coming when I joined the waiting list to self-fund a FreeStyle Libre sensor in August 2015, not knowing that by December, our then 6-year old son Johnny would develop Type 1 diabetes himself. The early days of managing Johnny’s condition were difficult with finger pricking. His early diagnosis and almost immediate lapse into the honeymoon period left us feeding his tiny insulin needs and treating many hypos.
In January 2016, we heard we could self-fund the FreeStyle Libre system. We ordered the starter kit and put the first sensor on Johnny immediately. We could feel the benefit of having the system instantly‡.
As a family, we couldn’t afford to fund two FreeStyle Libre systems. Luckily, the FreeStyle Libre system was finally available to us on prescription here in Northern Ireland, thanks to the amazing work of The Diabetes Network, in 2017. Those particular days when I finally got those prescriptions in my hands for our sensors are forever in my memory. Having the pressure off my shoulders to find £180 a month to support what we really needed to navigate Johnny’s care, and the release from the darkness of my own management was huge for our family but enormous psychologically for me personally.
It gave me freedom again.
Acting not reacting, thanks to the data
The FreeStyle Libre system is the tool in our kit that helps us to act instead of react, as we did with just finger pricks. An enriched, dynamic life goes hand in hand with changeable glucose trends. We can look back and see patterns for specific daysφ ~to enable better Time In Range and see ahead to manage levels better for less disturbed sleep, with the security of glucose alarms now with the FreeStyle Libre 2 system◊.
This feature alone, improves our HbA1c’s and Time in Range because it helps reverse the need to keep glucose levels too high during the night to eliminate unnoticed dangerous night-time hypos, if they occur outside our routine night-time checks.
During the pandemic, data insights were very helpful to us to communicate with clinic. We had time at home to show Johnny how to use his data to make improvementsѰ. Johnny watched the Time in Range. We used the daily patterns screen~to make minor changes to basal rates and the low glucose events screen was really helpful to us to take action in advance when we noticed a pattern.
Being an engineer, a person with Type 1 diabetes, a parent of a child with Type 1 and coming through diabetes management without any technology to where we are today, I know how overwhelmingly stressful managing Type 1 is for anyone. Changing that management system is very difficult as it requires even more effort initially.
A passion for spreading the word
I am passionate about the benefits of glucose monitoring technologies for the health outcomes of those with diabetes and especially as a primary tool for carers to enable us to do the best we can without our own health deteriorating from worry, sleep deprivation or hampering life or career progression.
As a user/carer representative on The Diabetes Network in Northern Ireland, I am using my voice to articulate the nuances that are less visible unless you are standing in our shoes, to help inform better suited strategies for access to diabetes technologies.
If there was one thing I would say to any parent of a child with diabetes who is heartbroken by the unfairness of having to wear devices 24/7/365, it is to temporarily put aside the heartache and guide your child with a confident hand to give it a chance to show the real life benefits it gives to the whole family. We only really know if something is better when we actually feel the improvement.
Mary and her 11-year old son Johnny live in Northern Ireland. Mary owns and runs her own lingerie business and sits of the Board of The Diabetes Network.
Mary received a fee to write this blog. All opinions are her own.
◊ Patients choose which device they want to receive alarms: FreeStyle Libre 2 reader or FreeStyle LibreLink app. They must start their FreeStyle Libre 2 sensor with that selected device. Once the patient scans their FreeStyle Libre 2 sensor with that device, they can receive alarms only on that device. The FreeStyle LibreLink app is only compatible with certain mobile devices and operating systems. Please check the website for more information about device compatibility before using the app. Use of FreeStyle LibreLink requires registration with LibreView.
§ The LibreLinkUp app is only compatible with certain mobile device and operating systems. Please check www.librelinkup.com for more information about device compatibility before using the app. Use of LibreLinkUp and FreeStyle LibreLink requires registration with LibreView. The LibreLinkUp mobile app is not intended to be a primary glucose monitor: home users must consult their primary device(s) and consult a healthcare professional before making any medical interpretation and therapy adjustments from the information provided by the app.
Ѱ For children aged 4-12, a caregiver at least 18 years old is responsible for supervising, managing, and assisting them in using the FreeStyle Libre system and interpreting its readings.
‡ 60-minute warm-up required when applying the sensor.
φ For a complete glycaemic picture, scan once every 8 hours.
~ Daily Patterns needs at least 5 days of glucose data.