9 minute read
LIVING WITH (AND ALONGSIDE) DIABETES
We meet folks who aren’t the only ones in their household dealing with diabetes.
A COUPLE
When people find out that Erin and Cam Jefferies both have diabetes, they get asked some interesting questions. The couple’s favourite one is always directed to Erin: ‘Did you catch it from Cam?’ Then it’s quickly followed by ‘Do your children have it?’
And sometimes they get the chronologically incorrect: ‘Did you both meet at the kids camps?’
The Tauranga beekeepers have been together 24 years, and their diagnoses were 31 years apart. Cam was diagnosed with type 1 when he was four. ‘My granddad had it. It skipped the next generation, and then I picked it up.’ Erin, on the other hand, was diagnosed just three weeks before the couple was due to be married. Since she was 16, Erin had also had Graves’ disease – an autoimmune condition that affects the thyroid gland. With the arrival of coeliac disease, yet another autoimmune surprise, she has received a hat trick of health issues.
The 31 years’ gap between diagnoses created friction in the relationship at the beginning.
Whereas Cam had had a few decades' practice in treating highs and lows under his belt, Erin was new to it all. ‘It was interesting when you haven’t been the one with diabetes and then suddenly you are,’ she says. ‘You go from being on one side of the fence to being in the paddock.’
She says her new husband wasn’t gushing sympathy. He’d had type 1 most of his life and told her, plainly, ‘You’ve got diabetes, so get on with it.’ Erin, having lived most of her without it, found it a big shock.
Making the move to CGMs and pumps has made life significantly easier for the couple. As beekeeping is hard yakka, Cam found that, as soon as he started work, his long-acting insulin would work faster and release into his bloodstream all at once. This resulted in him having hypos and feeling awful. Once he started using short-acting insulin within the pump, it covered what he had recently eaten, making an enormous difference to his overall health and wellbeing.
To answer the earlier question about their children and whether they have diabetes as well: their 13-, 16-, and 20-year-old children are tested every five years, and the last test came back negative for all three. Erin explains, ‘Cam raises their risk because his is purely genetic. Whereas mine, they don’t know. Obviously, they know I’ve got thyroid and coeliac, but they don’t know if my diabetes is that late onset diabetes or not. I’m the only one ever in my family as far as you can go back in my family tree who has it.’
Being a beekeeper definitely has its perks for someone with diabetes. Because Cam spends a lot of time working alone, he says he is always prepared for a low. ‘If it gets bad, I’ve either got my honey or a sugar feeder on the back of the ute with 550 litres of liquid sugar in it, which I have sucked out of on a couple of occasions. Or you can dive into a beehive or something if you really want. You don’t have to be caught short.’
A SIBLING
Lily Warrior is part of a whānau very well versed in the ins and outs of diabetes. First came her dad, then each of the kids. And then to top it all off, Bruno the dog.
The three Warrior kids’ diagnoses were spread out over a few years, with Lily kicking things off when she was eight. While the stress on the family at the time must have been palpable, she says by the time her youngest brother Jack was diagnosed the family was well into the swing of things.
Ironically, it was dropping off Lily and brother Charlie to a Diabetes Youth summer kids camp that prompted Jack’s diagnosis. He had been constantly thirsty, frequently heading off to the bathroom, and was very tired – all the classic symptoms of type 1. They tested Jack’s blood glucose then spoke to one of the doctors, who advised them to take him to hospital.
‘By then, we knew the drill. The signs were clear,’ Lily says.
The following year, all three Warriors attended the summer camp together. It was Jack’s first, but by that time Lily and Charlie were seasoned pros. ‘In a roundabout way, it almost makes it feel nicer if you’re not the only kid who has it in your family. You’ve got a sibling you can go along with.’
A decade after that memorable camp drop-off, much has happened. Jack is at college, and Charlie is studying product design at Canterbury. He was recently selected from his class to give a presentation to a panel about his new diabetes invention – a patch that attaches to pump sites that detects if insulin is leaking or if the site isn't working.
And Lily is now a paediatric nurse. When she was in her final year of college, she was reflecting on different parts of her life and what sorts of people had made an impression on her. She quickly came to the realisation that her diabetes nurses really stuck out, so she applied to study nursing at Massey University.
‘I knew even before I started that I wanted to work with children and diabetes, and the placements only confirmed this. I realised surgical is not for me. I like the medical side of things and along with that comes the new diagnosis of diabetes in children.’
Lily now works with the new type 1 diagnoses and welcomes the families into the diabetes community. ‘I have been able to become the diabetes champion for the ward, which means I now have input into new policies and forms used by people with diabetes whilst they are inpatient.’
Lily’s hope for the future is to eventually become a Diabetes Nurse Specialist, with the end goal becoming a Nurse Practitioner and running her own diabetes clinics for kids.
Lily is able to empathise with families coming through the ward. Having been through the same situation, she can offer reassurance. ‘There’s a lot of information to learn quite quickly. Depending on the patient, I’ll tell them I’m a type 1 too. And that you’ll turn out fine, you’ve just got to learn the stuff.’
A FAMILY
Rachel Blennerhassett says she knew nothing about diabetes until she was dating her soon-to-be husband. ‘My first exposure to diabetes was visiting his parents and seeing his mum taking her blood sugars on the glucometer. And then seeing her inject with a syringe.’
This was in 1991, and Rachel’s eyes continued to open a few years later when her husband, Noel, was diagnosed with type 1 diabetes. He had been constantly sick with colds and flu and chest infections, and seemed to no sooner get over one ailment when he was sick with another. ‘It was massively life changing because suddenly I'd gone from just getting a glimpse of it with the in-laws to actually living it with my husband.’
Fast forward another decade or so and the couple’s five-and-ahalf-year-old son Keegan was also diagnosed. Rachel explains, ‘The transition of partial caring for my husband to full-on caring and being a living pancreas for my son was hard. I felt like his life was in my hands, literally. There was lots of learning, like how to read his low or low symptoms.’
Rachel’s advice to anyone living in a similar situation is plain and simple – positivity. ‘Our children learn off us, so if we can (or at least to them look like we can) roll with this challenge and face and conquer the hurdles as they arise, our children will learn that tenacity and that resilience and just keep going.’
Over 10 years ago, wanting to reach out to parents new to this challenge, Rachel started the Facebook page Diabetes Parents Unite. ‘I thought, okay, I'm learning all this stuff, how can I help others?’ Her belief behind starting the social media page was that parents’ learnt and lived experiences could help and empower others. The action of helping others has a roll-on effect, she says. ‘It also helps and empowers ourselves and builds up our own confidence. Like, “I've helped this person get over this hurdle because I remember what it was like.”’
Eighteen years later, and Keegan is living independently, dairy farming, and managing himself beautifully, Rachel says. ‘My opinion is biased because he's my son, but he's amazing. He has this “shrug it off and get on with life” attitude, which just blows me away really.’
‘When Keegan was little and people would refer to him as ‘the diabetic boy’, I would say to them, “He is a boy who happens to have diabetes just like that kid over there that happens to be asthmatic or happens to have an allergy to peanuts or whatever. He is not “the diabetic”, he is a child who has diabetes.’
