Type 1 Diabetes Q&A
Finishing off Diabetes Awareness Month (a little late...we will blame it on wedding planning ;)) with a Q&A with my fiancee, Kevin! Kevin has had type 1 since the age of 9. As much as I may understand the science, I will never truly understand what living with this challenging condition is like. My hope is that the insight from Kevin in this post will help to further raise awareness and educate those that want to learn more as well as provide encouragement and tips for those also living with the disease and their loved ones. Please feel free to share with anyone that you think would benefit from this read!
What was your diagnosis like?
Kev: I was 9 and it was winter time. I remember getting sick in the grocery store with my mom (ralphing at Ralph's, in fact) shortly before ending up in the hospital. Thinking back, I did have other signs and symptoms leading up to the diagnosis like excessive thirst, frequent urination, having a hard time keeping up at sporting events, weight loss and extreme leg cramps at night. I remember several times my dad had to wake up and help me stretch out a cramp in my legs. Now I know all of these things that were happening were due to my body being unable to get glucose into the cells but they all happened so gradually it was hard to tell.
The nurses we had the opportunity to interact with were absolutely amazing. Essentially, my family and I had a crash course in advanced anatomy and physiology to understand how the pancreas worked and how to manage blood sugar levels without one. We went from being completely unfamiliar with type 1 diabetes to having to make complicated dosing decisions that my life depended on several times a day. It was intense, but the education we received and the love and support of my family made it possible to settle back into normalcy. Having a loving and supportive family with me every step of the way was incredibly helpful.
Do you have any tips for playing sports with Type 1?
Kev: Educating yourself and finding the foods/drinks that work well for you. It's going to be different for everyone and sometimes it will get you down to have to take a 15 min break in the middle of your sport to recover from a high or low but there's no reason we can't succeed like any other athlete does. Talk with others who have dealt with it, and experiment with different fueling/dosing options. It took me a while to find what works for me but the important part is to not stop doing the activities that you love. It helps in so many ways to stay active and not let type 1 side line you - it helps mentally, emotionally and helps keep blood sugar under control.
What dietary or lifestyle changes have made the biggest positive impact?
Kev: Realizing that I needed to study things outside of the typical endocrinologist's education. Immersing myself in nutrition: what foods make me feel good, what foods don't impact my blood sugar favorably, what foods support a healthy digestive tract, and filling in nutrient gaps with a solid multivitamin and fish oil. Like I mentioned in the last question, staying active has had a hugely positive impact on my health and management of type 1. Also, getting enough sleep is huge!The combination of all of those things has given me better control of my blood sugar and has really strengthened my immune system.
How has CrossFit with Type 1 been going for you?
Kev: Whew, it is difficult at times! Since the nature of CrossFit is about varying intensity/duration/type of exercise, no two workouts are the same and it makes it tough to plan for. Sometimes disconnecting my pump during workouts will help prevent going low during a longer WOD, but sometimes disconnecting will result in a post-workout high since the intensity of the exercise can sometimes raise blood sugar levels. My best tip here is to keep detailed notes of what works and doesn't work under different settings. I now have a pretty good idea of what to eat before hand (see pic below of some workout carbs), whether or not to keep my pump plugged in and what needs to be done immediately after exercise to keep blood sugar stable. The most frustrating part is if I am mentally in the right place to really push it during a workout but then my blood sugar doesn't cooperate and I have to stop or reduce my intensity. Unfortunately, that is just going to happen from time to time and learning to roll with it has helped me keep a positive outlook at the gym.
What is something you wish everyone knew about type 1?
The biggest thing would be understanding the difference between type 1 and type 2. Type 1 always gets overlooked because it doesn't impact as many people. The lack of understanding here leads to some frustrating and inaccurate misconceptions. (If you need more info on this check out this post). Also, trying to understand what a type 1 diabetic goes through in a day would be helpful too, especially if you have someone with Type 1 in your life. The most extreme version of that was the nurses that I met with all wore insulin pumps and checked their blood sugars for a period of time to learn what that responsibility is like.
Any tips for family members?
Kev: Having a close group of family and friends is hands-down the most important thing. Giving your child/friend/etc support and making sure they know they're not alone in the diabetes situation is huge. Trying to get as much nutritional and exercise education as you can on top of your regular endocrinologist will help you help your loved one. If they are kids, get them involved with groups of other kids with type 1. This was a game changer for me because no one understands it like someone with it, you feel an instant connection with fellow type 1s because you know what they go through and it made me feel less alone. It's like learning another language and it's life or death - so soak up all the information you can find, especially in the realm of nutrition and exercise above and beyond the endocrinologist's recommendations.
As for helping your loved one get through a challenging day: ask questions, try to understand, educate yourself as much as possible. That support is everything. Pay attention to how you word things too, if your loved one seems like they are experiencing a high/low, instead of saying "it seems like your blood sugar is low" say "when's the last time you checked your bs?" That simple change in wording goes a long way because you have to remember that unstable blood sugar has a dramatic impact on mood and emotions. When your loved one is experiencing a high or low they do NOT feel well at all. Remembering that will help you help them in a loving way.
I was very lucky to have parents that were with me every step of the way and I've had access to the best technology.
Any tips for newly diagnosed individuals?
Kev: I can't stress enough the importance of learning about diet and exercise and keeping a log of blood sugar/insulin levels. Educating yourself puts you in the driver's seat of your life and wellbeing. Keep doing what you love to do - try to live your life as normal as you can. Type 1 is a limitation in certain respects, but you can live a full life just as well as anyone else can. Getting into a routine with foods/timing that make you feel well can help quite a bit. The other big thing that helps is to get involved in a community of other people with Type 1. You can learn from the community and get incredible support.
Any tips for getting through the tough days?
Kev: Those are hard. The most important part of getting through rough days is finding good support - your parents, your friends, others with type 1. Go to various events and get involved with the community. Being around others that know your pain can help. Aside from that, just don't give up. It's a lifelong battle but we are only here for a certain amount of time so you've got to make the most of it! And try and help as many others as you can. Always remember that it could be worse. Tough days happen whether you're diabetic or not and it is simply a part of life.
What's the most important thing you've learned about diet And exercise?
Kev: I've learned that exercise is good for everything - physically and mentally it's fantastic. It's just the best thing you can do with diabetes.
As for food, playing around with how different foods impact me has been eye opening. As much as we are always told that 50g of carb is 50g of carb - different carb sources seem to impact people differently. I've spent a lot of time experimenting and keeping a journal of how different foods impact my blood sugar/how they respond to insulin to figure out which foods fuel me the best without massive highs or lows in glucose. This has given me more stable blood sugars and better control over how I feel. I've also got to recommend working with a Dietitian (or marrying one if you're lucky)! I've had the opportunity to do some advanced testing and nutritional interventions to optimize micronutrient status, gut health and reduce inflammation.
In your opinion, is there a silver lining?
Kev: As challenging as it was, the education involved in understanding the condition and understanding my body has been a very positive thing. I feel more in tune with the way my body works and how different foods impact my body than most people. I went from having no idea what type 1 diabetes even is, to understanding the anatomy, physiology and difficult math involved in estimating carb contents, dosing and delivering the right variety of insulin at a very young age. Having this condition gave me the motivation to dive into the research and learn everything I can about many key functions of the body. It has sparked a passion for helping others as well.
What do you hope to see in the future?
Kev: First, I hope that there is a greater understanding of what Type 1 is and a bigger conversation started. Without that, we can't hope to find a cure. I also hope to see more research looking at promising interventions that aren't just new drugs, but looking at targeting the root cause instead.
Thanks for reading! Please feel free to submit questions below if you have any that you would like Kevin to answer!