A friend’s son was recently diagnosed with Type 1 diabetes, turning their world upside down. Listening to their diagnosis story and the familiar fear and anxiety of navigating the unknown world of Type 1 diabetes made me think of my sister.
My sister Pearlsa has lived with Type 1 diabetes for several years now and frankly (as far as I’m concerned), is a badass at diabetes management (and she said, “noooo, don’t put that in there”).
In honour of World Diabetes Day, here’s an interview with Pearlsa on what it’s really like to live with diabetes and some advice for anyone newly diagnosed.
How did you find out you had diabetes / What type of diabetes do you have?
I have type 1 diabetes, what used to be called “Juvenile Diabetes” back in the day.
I was constantly thirsty and peeing frequently, I convinced myself that the more water you drink, the more frequently you pee, and it made sense.
I was always tired and hungry, and had lost weight. I had just started a new career and was working on a big project, so I thought it was just stress.
At a lunch to celebrate the project’s end, my boss pulled me aside and asked (demanded) that I go see her gynecologist – she thought I was pregnant! I knew I was not pregnant but I saw the doctor nevertheless, and the doctor diagnosed me. Christy, my ex-boss probably saved my life.
How do you manage / treat your diabetes (and does your pump have a name)?
I take several doses of insulin through an insulin pump and I consistently monitor my blood sugar levels using a Continuous Glucose Monitor (CGM). I try to stay active as well, physical activity helps my body use insulin more efficiently. Regular medical checkup also help keep me on track. My current pump does not have a name, the one before was called Gul.
How has diabetes changed you?
I would like to think it has not but it has, I have become a little more compassionate. I move through this world now knowing that there is more to people than their appearance, there are hidden truths behind beautiful smiles.
Be kind, for everyone you meet is fighting a battle you know nothing about.
What has been the hardest part about living with diabetes / And what is the best part?
The hardest part about living with type 1 diabetes is the fact that it’s 24/7 for the rest of my life (until there is a cure). There are no breaks or holidays from managing type 1 diabetes. It requires a non-stop act of balancing of insulin, exercise, food and rest, stress and hormones in other to stay alive. It impacts every part of my day, All day long, I am constantly thinking about insulin, blood sugars and carbohydrate count.
Imagine going through life while permanently juggling three or more balls. At school, at work, out with friends, on a walk and while you sleep, you must still keep juggling, ensuring that all your balls stay up in the air.
The best part about living with diabetes is that it can make you healthier. It sounds crazy I know but you become hyper aware of how your body works, how stress, dehydration and too little sleep affect your overall wellbeing.
Do you recognize your symptoms of a low/high blood sugar / How do you treat your lows?
I don’t always recognize my low or high blood sugar symptoms.
Some symptoms mimic other things; like am I hungry or low? Am I hungry or high? Am I sad or am I low? Is this movie really sad or am I just crying because I am low or high? Other times it’s tingling lips and tongue and often, I have nightmares when I am low. Gummy bears are my go to for treating lows.
What is a typical day for you like living with diabetes?
I wake up, lance my finger to check my blood sugar level, if I have my Continuous Glucose Monitor (CGM) on, check to see if they match. Depending on the number, correct (take a little insulin) or treat (eat couple of gummy bears), then get ready for work.
I check my blood sugar on my CGM to ensure I’m safe to drive, I eat more gummy bears if I’m low or trending towards low, I wait to ensure my blood sugar is coming up, then drive.
I give myself breakfast insulin (Insulin taken for meals, snacks or to correct a high blood sugar is called bolus), then eat breakfast at my desk – Usually a 16oz latte (15grams Carbs) or 16oz ½ sweet Mocha (30grams Carbs) and homemade bread (30grams Carbs).
I check my blood sugar again mid-morning, then correct (take a little insulin (bolus)) or treat (eat couple of gummy bears)
For lunch, I check my blood sugar, give myself lunch insulin (bolus) and eat lunch at my desk while I work – Today’s lunch was plain Greek yogurt with honey and mixed nuts (66grams Carbs). I usually go for a post lunch walk with a co-worker afterwards.
I check my blood sugar a couple of times throughout the day to ensure that my levels are normal or treat accordingly if it’s not.
After work, I check my blood sugar again to ensure it’s safe to drive.
Around 6:30 PM, I lance my finger to check my blood sugar, give dinner insulin and then eat – Today it’s roasted vegetables (60grams Carbs). Yum!
I go for another walk in the evening, then it’s a quick shower, I change my insulin pump site every three days
Just before bedtime, I check my blood sugar levels once more, then go to bed and hope for an peaceful, non-eventful and restful sleep (no low blood sugar episodes, please!).
Do you eat a restrictive diet because you’re living with diabetes?
No, I try to eat a healthy balanced diet. I don’t eat meat or chicken because I can’t stand the texture and I don’t like seafood. I’m also allergic to (anaphylaxis) to soy protein so I have to avoid anything with it.
I guess, I do eat a slightly restrictive diet because I am picky and allergic, but that’s not because of diabetes.
What advice would you give to someone who has just been diagnosed with diabetes?
Become a constant student of type 1 diabetes and of your own body. Just as in nature we all vary and “Your Mileage May Vary”. A lot of things affect blood sugar besides insulin, food and activity. Stress, too little sleep, dehydration and hormones are among some in my case. Learn how your individual body react to things and situations.
Diabetes management does get hard at times but you are worth whatever it takes. Approach your management and care with that in mind (“I am worth it”)
Blood sugar reading is information not a test result and every day is an experiment. Think of it as a compass that helps you on your journey to either stay the course or course correct.
It is very important to find an Endocrinologist / Diabetes Specialist who is the right fit for you. If you are not comfortable with the way they manage your health do not be afraid to change, remember, you are the one living with diabetes this is yours and no one else’s.
Are there any particular misconceptions about diabetes that annoy you?
Yes there are several of them unfortunately, below are my top three:
I love the one about getting diabetes from eating too much sugar.
Type 1 diabetes is autoimmune disease cause by unknown factors that trigger the onset.
2. Type 1 diabetes is the really bad kind.
There is no really “bad kind” of diabetes all types of diabetes are bad.
3. You can be cured by … – Eating raw almonds, eating zero carbohydrates, cinnamon, Guru Healer, Pastor Prayer warrior, grandma’s special potion etc.
There is no cure for Type 1 diabetes, insulin is not a cure, it is life support.