Recently I was filmed for a Diabetes NZ campaign. The four short videos of diabetics sharing their story would be used to encourage others to take action and better manage their type 1 or type 2 diabetes or get proactive about preventing type 2 diabetes. I enjoyed the day filming in Auckland, however as I flew home I felt jealous, pissed off, deflated and like I’d let down every type 1 diabetic in the world!
Julie Langlois, a type 2 diabetic shared her story. She was frustrated with the hypos she was experiencing and decided to do whatever she could to get off insulin. To achieve this goal her doctor said she’d have to lose weight and change her lifestyle. She did and now controls her diabetes with pills, diet and exercise, no longer needing insulin! It was great to hear about Julie’s new found zest for life and her determination to take diabetes by the horns, refusing to let it control her. She is an inspiration.
However the moment was bitter sweet. As a type 1 diabetic I was jealous I couldn’t make these changes too. I imagine the conversation with my doctor would have sounded a little different to Julie’s.
Me: “I’m pissed off with the constant hypos I’m having and think coming off insulin will eliminate these.”
Doc: “That’s a pretty ambitious goal Ruby, but if it’s something you really want to do I must warn you about the consequences. Without insulin your blood sugar levels will go through the roof making you feel like rubbish, you’ll lose a lot of weight and in about 7-10 days you will die. Research says the end will not be pretty.”
Me: “Right… thanks for the chat doc. I might sleep on it before I make any drastic decisions” (I quickly leave the medical centre, slightly terrified and head straight to the chemist to pick up my repeat insulin prescription). #gratefulforinsulin #insulinforlife
Never mind. It is what it is, but at times it seems extremely unfair!
Then it was my turn to share my story. (Check out the video above to see the end result.) I was interviewed by Dennis Katsanos, an experienced reporter from Sky TV. He was brilliant. He asked the right questions, put me at ease and let me ramble on knowing he could fine-tune the content later. After filming I worried I’d ‘sugar-coated’ what living with Diabetes was really like. I wondered if I’d put on a brave face and played it down during the filming. I know why I do this, but it does little to raise awareness of what it’s truly like to live with an autoimmune disease. It’s bloody hard work. Hindsight is a beautiful thing.
So here it is. I’m laying it all out on the table…
I’ve lost count of how many times I’ve said to my husband as we lay in bed “I hope I wake in the morning”. I worry I will die after sleeping through a hypo (low blood sugars), unable to treat it. I’ve recently connected with other type 1 diabetics living around the world via the internet. It’s been great to share our successes and challenges, but it’s also confirmed that I’m not being melodramatic; this is a cold hard fact. Many of us are not waking in the morning.
Getting sick terrifies me. If you have a tummy bug, please stay well away! Why you ask? Any kind of infection throws our blood sugars way out of kilter and high blood sugar levels can result in ketones and diabetic ketoacidosis. Never one to do things by halves, the last time I had a tummy bug I ended up in hospital with ketones in my blood. I was connected to a drip to re-hydrate and my heart was closely monitored. ‘Ketones can make your blood acidic. Acidic blood can cause a serious condition known as diabetic ketoacidosis (DKA). The most serious effects of DKA include: swelling in the brain, a loss of consciousness, diabetic coma or death.’ (http://www.healthline.com/health/type-2-diabetes/facts-ketones#Testing4) Three hours later I was sent home to recover. It was a long hard week, especially as 24 hours later I had to travel for work. The show must go on!
It’s also a morbid reality that my husband knows what songs I’d like played at my funeral.
I love eating out with friends and family but being unable to weigh the food or refer to nutritional information on the back of packets, I must guess the carb content and therefore my insulin requirements to keep my blood sugars in range. I worry about the effect guessing will have on my blood sugars. There’s a good chance I will get it right (I have a little bit of experience after all) but there’s also a chance I won’t. This could result in high blood sugar levels which I can easily correct with more medication or the humiliating experience of having a hypo in public. If you notice I order a glass of juice, please keep an eye on me. I am struggling. My brain is doing the best it can.
So there you have it. This shit is hard but I refuse to let it win and rob me of a full and long life.
I put a ‘she’ll be right’ spin on the enormity of living with this disease because I have to just get on with it. I can’t change it. The next time I’m asked “how’s the diabetes?” I guarantee you my response will be the same as always ‘’all good’’.
Every diabetic is working hard to prevent, manage or delay the consequences of living with this disease. When it gets tough, we dig deep and remember ‘we were given this life because we are strong enough to live it’. And if that doesn’t work, I find some fresh air, a good night’s sleep and laughter and wine with friends helps too.
Click the links below to hear more from Julie, Nickson & Raewyen’s about their journey with diabetes.