Q&A With Erin Spineto: Adventures With Type 1 Diabetes

Erin Spineto is an athlete, adventurer, and author with Type 1 diabetes. She has completed a five-day solo sailing expedition and a relay swim around the Florida Keys, paddled 100 miles along North Carolina’s Intracoastal Waterway, and written the books Islands and Insulin: A Diabetic Sailor’s Memoir and Adventure On. I recently had the chance to speak with Erin about her experiences.

AM: What are the tools you use to manage diabetes?

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ES: I use a hybrid system of the long-acting insulin Levemir (generic name insulin detemir) for 75% of my basal, and a Tandem t:slim pump for the other 25% and my bolusing. I changed to this system when I started long-distance swimming, since my pump at the time wasn’t waterproof. It meant that I was covered with basal insulin during my long workouts, but that I also had the flexibility to reduce my basal on the fly and to bolus on demand without having to remember to bring my insulin shots with me.

I also love and need my Dexcom CGM (continuous glucose monitor). I never go without it and freak out when I have to start a new sensor and be without my data for those two hours of warm-up. The data that it gives me is amazing, but even more important are the alarms. When I paddle or swim long-distance, I will wear my Dexcom in a waterproof pouch made for iPods, and I don’t have to worry about checking my blood sugars. If I go out of my safe zone, an alarm will sound and I can stop to take care of it. Otherwise I don’t think about my sugars, so it’s one less thing to worry about.

AM: Were there ever moments during your sail or swim or paddle that you thought maybe you’d pushed yourself too far? If so, what did you do to combat those fears?

ES: I usually have the moments of thinking I’ve pushed myself too far and that I have bitten off more than I can chew midway through my training phase, when my workouts have gotten longer and harder and I can barely make it through another one. And yet I still have so far to go.

I have about a week or two of freaking out and thinking that I am going to humiliate myself and have to quit before I even begin. But then I always seem to have a great workout that goes so well, and the tide turns and I become totally confident in what I am doing.

For sure, there was a moment during my sail. It was on day three and I had missed the small craft warning on the weather radio the night before. A small craft advisory is a weather statement that says it’s probably not safe for smaller vessels to go out for the day due to waves and wind speeds. I went out anyway, and was at the end of what was safe with my current skill set. I almost got knocked down and had never been so scared in my life, but I had no other choice than to continue. You can’t really throw in the towel in the middle of the ocean. And there were no viable ports before my planned port 20 miles away. And I know, because I checked every single place on my nautical chart. So, I leaned on my training and did what had to be done. I remember laughing about halfway to the front of the boat because my mouth went totally dry from fear. Before that moment I thought that was just a phrase that writers used to pump up the suspense in their writing. But it is a real biological reaction to fear. And for some reason that made me laugh, which helped my fear.

AM: What was your favorite adventure?

ES: That’s a tough one. I loved going solo, so my first 100-mile solo sail has to be up there. I had just come out of having two kids and then dealing with five years of hyperthyroidism and it was the first moment when I felt I was finally digging out of that huge dark hole.

I also loved the multiday 100-mile standup paddle trip. That was the first time I realized that I may never be fast — in fact, I am embarrassingly slow — but my body really likes the multiday endurance adventure.

AM: What is your next adventure?

ES: This June, four of us will be covering 120 miles in the Caicos Islands. It will be 50 miles of standup paddling over the first two days with some camping on deserted beaches. Day three will be 20 miles of hiking, wading, and swimming over a string of cays from North Caicos to Provo. Day four will be 50 miles of cycling on beach cruisers seeing every corner of the island of Provo.

AM: How has becoming a mother changed the way you manage and think about diabetes?

ES: I got diabetes when I was in my idealistic, invincible college phase, which I think is a great time to get diabetes, at least for me. I kind of thought it was no big deal. I had very few responsibilities. I was living on my own and only had to think about myself. I had tons of time to work on my diabetes.

After I had kids, diabetes became really, really hard. All of my attention and focus moved to keeping another human being alive. And it took everything I had. I had no time to think about myself.

Sometimes as I would collapse into bed at ten at night, I would realize my meter was still on my nightstand, untouched for the day. I would finally test and realize I was 400. (These were in the days before Dexcom.) I had no idea why I was 400 or how long I had been that way. I had no energy left to take care of myself. And you put that on top of the changing insulin needs of post-pregnancy and nursing and it was a total disaster. And because I wasn’t taking care of myself and doing horribly, I sunk into a pretty substantial depression, which made the whole process even harder.

As my kids got older and I started to recognize the new patterns that had evolved, I was able to change the way I did things, and a majority of that change was propelled by planning my first solo sail. It forced me to think about myself and find a new balance of self-care and dependent-care. If I failed to take care of myself, I wouldn’t build the skills I needed to keep myself safe and I wouldn’t be healthy enough to do it. Putting myself last wasn’t going to cut it anymore. It’s so easy to lose that part of yourself when you become a mom, but it is so vital not to, not only for sanity, but for quality diabetes care.

AM: If readers are interested in getting involved or finding adventures of their own, what is your advice?

ES: To start dreaming first. Find out what kind of adventure would make their heart soar. What excites them? And then go search for what other people have done. Learn from their experiences. Try to build relationships with those who are doing things similar to them. Read, study, learn everything they can so that they will be safe. Plan well for every possibility. Train hard to be prepared and ready. And then enjoy and share their adventure with others to inspire them to join in.

How can apple cider vinegar help with blood sugar control? Bookmark DiabetesSelfManagement.com and tune in tomorrow to find out from nurse David Spero.