What it feels like: Living with type 2 diabetes

'My kids know where I keep juice boxes that are just for me when I get to a low, they know where my tablets are, they knew where my tester is.'

Emma Jones 12 minute read November 12, 2021
type 2 diabetes

Nicole Cleaver, second from left, with her husband and children.

Nicole Cleaver had gestational diabetes during all three of her pregnancies. After the third, the diabetes remained, and she was diagnosed type 2 diabetes. 

Type 2 diabetes makes up approximately 90 per cent of diabetes diagnoses in Canada. It occurs when the body is unable to produce enough insulin to properly regulate blood sugar. Approximately half of gestational diabetes cases will remain as Type 2 diabetes after the pregnancy, according to the CDC. 

Just before the 100th anniversary of the discovery of insulin at the University of Toronto, Nicole sat down with Healthing to share her experience with diabetes. 

When were you diagnosed with diabetes?
I was actually first diagnosed with gestational diabetes when I was pregnant with my oldest, about 16 years ago. I was almost immediately put on insulin throughout my pregnancy. 

It’s routine to do screening around 18 or 20 weeks of pregnancy and my blood work came back showing that my blood sugar was high. Then I had to go through a three-hour long screening where you have to drink this sickly sweet orange drink, and then stay for three hours and get your blood sugar tested every hour so they see how your body deals with the ingestion of the sugar without adding any exercise — because exercise can lower the sugar level. So, I couldn’t move around, and it made me feel sick and very tired.  

I was pretty sure right away that this was something I was going to have, just from the way I was feeling. I ended up with gestational diabetes with all three of my pregnancies. It did go away after the first two — usually within a month or so after the delivery, your sugars return to normal. But after my son, it decided to stay around and that’s when I became a type 2 diabetic. 

What goes through your head when you’re pregnant with your first child and you find out you have this complication?
A lot of fear, a lot of wondering: What’s going to happen? How can I control it to make sure I have a healthy baby? My mother is a diabetic, so I already knew a bit about it, but it wasn’t something I thought would happen to me. 

It was scary. I did the best I could, trying to maintain readings in the proper level without having to use extra insulin to bring the numbers down. I was trying to eat the proper foods and get the proper exercise in, because I wanted everything as best as I could for my baby once she was born. I was extra diligent. 

[There were] a lot of finger pricks daily to check the sugar levels, because I would take insulin with meals as well as at bedtime when I was pregnant. I had to count my carbs and see how much I ate to determine how much insulin I had to take at the same time, which is a lot of work. There was a lot of finding out that what you thought was healthy you couldn’t eat because it spiked your sugar. Like, you’d think carrots are healthy, but carrots tend to spike my sugar up.  

You said the gestational diabetes went away after your first two pregnancies, but not after your third. How do you find that out?
Around the one-month [postpartum] mark, you go back for more blood work. [After my third pregnancy] I honestly can’t recall if I was still borderline pre-diabetic or if I was over the number and automatically diabetic. I can’t remember where I fell. But it was enough that I had to be monitoring myself. I didn’t have to be on insulin at the time, but I still [had to take] oral medication to help combat the numbers.

Are you using insulin now?
I’m back to insulin, for the last two and a half years. I was actually diagnosed with diabetic ketoacidosis, where your potassium drops dangerously low. I was grocery shopping and wasn’t feeling well. When I went home, my husband was like, No, you’re going to the ER right nowI ended up in the hospital thinking I was having a heart attack, but it was my potassium levels that were so low. My medication [made it look like] my blood sugar was lower than what it was.

The nurse said that she could smell the sweetness coming off of me, my sugars were so high. I was very lucky that they caught it in time, and I was in the hospital for only a few days.

I ended up having to go on nighttime insulin at that point. 

How does being diagnosed with diabetes affect your eating habits?
A lot. It’s really a trial and error, you have to be diligent to figure out how different foods affect you. You go through the highs and lows: if you miscalculated and had too much insulin with your meal, then your levels would go down, and the lows cause you to sweat — like, the back of your neck, your hairline. I think it was with my second daughter, my lips would tingle when I would have a low. It’s kind of different for everyone. It’s scary because it takes a lot out of you, and if you get too low, you could end up in a coma. 

You also learn how to plan your day, because you don’t want to deprive yourself. If I know I’m going out and there’s going to be a celebration and I’d like to have a little piece of something, I’ll try to have less carbs during my meal and up the protein. That’ll help balance out the sweet, but it doesn’t mean that I can go crazy eating a dessert — a bite or two will satisfy that kind of sweet tooth. When the sugars go too high, or go too low, it really affects the body and those effects can last a couple hours or longer. Like, you can be really tired, really headachy, and it affects your daily life. You’re trying to find the right balance. 

It sounds like it’s something you need to be thinking about all the time — I can’t imagine it’s easy to plan out everything you’re going to eat, every single day.
Right, it’s not like you can just go grab a quick takeout and not think about what you’re eating. I know I need my three meals a day, I need to start with something healthy. I usually have a yogurt that’s low in sugar with some granola to get me through the morning, or healthy oatmeal mixed with seeds and cinnamon to keep me full. You don’t want to skip meals because it can really affect your sugars throughout the day, at least for me. Everyone is a little bit different. But I find that having three meals and sometimes an evening snack, like a high protein snack, will help keep my sugar levels regulated. 

What does low blood sugar feel like for you?
It makes me really tired, and hot and sweaty. I have had an experience where I woke up and I was under three, and you need immediate treatment. Had I gone back to sleep, it could have kept going down to dangerous levels. You can end up in a coma if it gets too low. (Editor’s Note: In Canada, blood sugar levels are measured in mmol/L. Diabetes Canada recommends a target blood sugar level of 4 mmol/L, while blood sugar levels of 2.8 mmol/L or lower can cause seizures and loss of consciousness.)

If no one else is aware of what’s going on around you, they don’t know to help you. My kids know where I keep juice boxes that are just for me when I get to a low, they know where my tablets are, they knew where my tester was, and [now] they know how to pick it up on my cell phone and test my sugars. I always make sure someone’s aware if I’m not feeling well, just to help monitor me. 

Does that impact your energy levels at all?
Absolutely. When you’re trying to keep your sugars level — I try for at least 70 per cent of the day to keep them within range — your energy level stays balanced. It’s when you’re going through the highs and the lows, t can affect your body but it can affect you mentally as well. 

How does it affect you mentally?
A lot of depression can be associated with diabetes, as you’re going through all the different changes. So it’s just something to watch out for. I always find it’s important to let your family know what you’re feeling when you’re faced with the highs and lows, and how they can help you. It’s not something to hide and keep away from people. I make sure people know — my coworkers, my family. I’m not ashamed of it. I’m a normal person, I just have these special things. 

Did you experience depression from low blood sugar?
I have, absolutely. When you’re having a low or a high, you can dip down into depression because you kind of think, What did I do to cause this? Why is this happening to me? Sometimes you just want to be alone when you’re going through it. So it can be tough on the family. 

It must be hard for you too.
It is — especially when the kids were younger, it sometimes felt best for me to kind of remove myself a little bit. Like, go have a lay down in my room and let the older kids watch out for the little one, just because then I know they’re in a safe spot and I’m in a safe spot. I can’t focus on them when I’m suffering. 

You have to look after yourself as well.
Right. And sometimes as parents, or mothers, we don’t do that. I’m learning.

Was this just until your blood sugar came back up? Or would you feel emotionally low for a couple of days or weeks at a time?
Until the sugar came back up. It could take a couple hours for things to kind of regulate. You do the necessary steps to get the sugar to an acceptable level, but the effects still linger. 

It must be hard to manage parenting and also looking after yourself. How did you manage it?
I involve the family. My son took an interest early on from seeing me taking my nighttime insulin, and he liked to help me. I’d line it up and I’d let him press the plunger down to put the insulin in. Before dinner, they’d remind me: What’s your sugar? Did you check your sugar? And I would let them know what number I’m at, and they understand the numbers and what they mean, and they would react, like, Yay! Good number Mummy. They’re involved in it, and they make sure I stay on track. 

Do you check your blood sugar through stick-and-poke or do you have a monitor?
It was stick-and-poke for a long time. I’ve just recently got the arm monitor, where I can keep it on for two weeks and I can use my cell phone to test myself. It’s been wonderful; no more sore fingers or errors with the testing so you have to re-prick again. It’s so much easier and I can share the information with my doctor; I don’t have to send them stuff, they have access to all of my readings. I can [also] input what food I’m eating and what exercise I’m doing and they have access to that before I talk to them.

I just wish it was covered by more insurance. Every plan is different and it can get costly, but it’s so worth it to be able to keep track of everything. Because when you get to a certain age, your hormones change, and everything else too. For example, with menopause you get hot, but getting hot and sweaty is also a side effect of low blood sugar. It’s easy for me to wake up in the middle of the night and just grab my phone and check my arm and see where my sugars are and see if that’s causing me to be sweaty, or if its menopause-related.  

A lot of the treatment for diabetes isn’t covered by the Ontario Health Insurance Plan (OHIP), right?
That’s correct, and a lot of personal insurance doesn’t cover certain medications or the testers. It’s between $80 and $100 every two weeks for the monitor, I believe, so it adds up. Add the cost of the insulin on top of that, and then any extra daily pills that are required.  

Wait, insulin isn’t covered by the province?
Insulin is partly covered with the insurance that I have[, but it’s not covered under OHIP]. Luckily, I’ve been able to keep insulin to just once a day at nighttime, and not have to have it with my meals. Having it at nighttime helps carry me through the night and then I can help track throughout the day. 

I plan my day: when I’m eating certain things and how I’m exercising. I’ll test first thing in the morning and then decide if I can take the kids, walk them to school or take the dog for a walk, or if I need to eat before I go do that, because it depends on what level my sugars at. If I’m already at a good healthy range, I don’t want to drop too low. 

You must be a master at mental math.
I try, but I’m nowhere near perfect. I am not a little toothpick. But I tried to be healthy and I try to accept myself as I am and to stay as healthy as I can. 

Unfortunately, [diabetes] is hereditary in my family. My mom’s mom had it. My mom has it. I have it. I’m hoping my kids don’t get it later. But they’ll have the education if they do.

Your kids sound incredible — it seems like they’re really hands-on.
They are. They’re extremely helpful and caring and concerned. And it’s nice to know that they’ll know what to look out for in other people [with diabetes] as well.

And they’re understanding, because sometimes legally I’m not allowed to drive if my sugar drops below five, because if it drops there it can continue to drop. So, there have been times that are like, OK, I have to wait a little bit. Let me get my sugar taken care of. And then we can go. 

I’m grateful for the invention of insulin, because I know it’s the 100th anniversary coming up this November 14. And it’s kind of cool that it was the University of Toronto where everything was developed. Without insulin, the life expectancy was so much lower. It’s nice to be able to lead a long — and, hopefully, healthy — life. 

To find out more about living with diabetes and the history of insulin, visit Diabetes Canada and Insulin 100.

emjones@postmedia.com@jonesyjourn