The Weight of Invisible Illness: Type 1 Diabetes
On the trail we all have a pack to carry. As we prepare for a long trek, we obsess about our base pack weights. Counting grams, swapping out gear, minimizing necessity, we lighten our load to make the climbs less daunting, and the descents less painful. No matter how much time we spend on our physical pack weight, there’s often more to what we carry onto the trail than what we can weigh on a scale.
Every year I’m inspired as others use the trail to accept or overcome difficulties ranging from psychological, medical, past trauma, sexual misidentify, body dysmorphia, etc. Whatever excess immeasurable pack weight it is we are carrying with us onto the trail, I hope over the course of the journey it changes from a heavy burden. It will develop into something that lifts, inspires, and carries us through the challenges both on the trail and our lives after the trail. Whatever else it is we carry onto the trail, we have to remember we don’t have to carry it alone.
My Extra Pack: Type 1 Diabetes
My pancreas stopped making insulin when I was nine years old. For me that meant multiple injections daily and regular finger sticks to test my blood sugar. It also means focusing on my diet and trying to balance medication based on the total number of carbohydrates consumed. I don’t want to bore you with what diabetes is so I’ll keep this brief.
Type 1 diabetes is a chronic and invisible illness. Metabolic disorder caused by a mutation of my immune system. It wasn’t caused by my lifestyle choices. Over the last 23 years of living with diabetes, I have begun to accept how lifestyle choices can help reduce some of the burden, but at the end of the day, I will always require insulin to stay alive. When adding the challenge of strenuous hiking all day, I’m am destined to encounter some struggles both medically and emotionally as I try to find the right balance of food and medication.
The high blood sugars make me feel weak and lethargic. The lows make me feel confused and anxious, and affect my physical balance. Both scenarios can cause my internal monologue to become very pessimistic and counterproductive. Aside from the emotional side of managing type 1 diabetes on the Appalachian trail, there are added items that aren’t commonly found on thru-hiker packing lists.
How I Will Approach Diabetes on the AT
Reducing Needles in the Backcountry
Most everyone knows that injections are a part of diabetes. My primary goal for managing diabetes on the AT is the fewer needles the better. My insulin, medical device, and dietary choices all required consideration for making this happen. The backcountry is not sanitary. As hiker trash, I’ll be sweaty and dirty for days on end. So how do I reduce injections?
Until recently, it was either shots, or an insulin pump to provide our bodies with this magic hormone that keeps us alive. Two years ago, I began using a new product that is an inhaled insulin called Afrezza. Yes you heard that right, insulin that doesn’t require a needle!
Inhaled Insulin – Afrezza
I choose this as my option on my thru-hike for several reasons. First, no needles. The idea of making several injections a day doesn’t appeal to me. Its not that I’m afraid of needles, but when I’m dirty and sweaty in the backcountry, the less I have to worry about sanitation of pump sites and injection sites. I will still need to take one type of insulin by injection, but that sure beats six-plus injections a day.
The speed the inhaled insulin works was another deciding factor of my decision to use the inhaled insulin. Afrezza works fast and is done working fast. Since I can’t predict my hunger on the trail, I can eat when I want and dose insulin as I need it. Instead of trying to plan ahead, I can just react as needed and get back to focusing on the adventure, not the baggage.
What About Diabetes Technology?
The approach many have taken before me has been to use insulin pumps. An insulin pump is a device that delivers insulin continuously. The idea makes sense as every three days, and can give provide programmable options to help support tighter control. These devices often communicate with a constant glucose monitor (CGM) to automatically shut off and reduce dangerous situations.
Both pumps and CGMs are great tools, especially in the front country. In actual backcountry practice, sweat and dirt don’t mix well for the adhesive to stay put, and cleanliness is still an issue. Trying to keep two devices attached to me and clean carries weight of worry and uncertainty that I don’t want to bring with me on my thru-hike. I am opting for a different type of CGM.
Implanted CGM – Eversense
To further reduce the need to use needles in the backcountry, I had a procedure where I was implanted with a device that will provide blood sugar readings to my watch every five minutes. This device will last for 90 days without any fear of it falling out and needing replacement on trail. Sure, I’ll need to get off trail during the hike but I won’t need to carry as many just in case replacements in my pack. The “surgery” is not very invasive and am working with the company to get the sensor changed when I get near Harpers Ferry.
I’ve also figured out a way to share all this data to the cloud. I openly share this data with anyone, but especially for family and medical team. Feel free to check it out too: mjoycecgm.herokuapp.com
Diet on the AT
Diabetes doesn’t mean I can’t eat certain things. Depending on what I eat, it may cause me to spend more time thinking about the condition. Part of my goal of a thru-hike is to be more present. Because of this, diet is going to play a huge role in my journey. Reducing the amount of insulin I’ll need and minimizing the amount of time spent on diabetes, I will be following a strict, low-carb/ketogenic diet.
Over the last few months, I’ve developed a variety of mail drops with self-made freeze dried meals. Although I love honeybuns, the impact they have on my blood sugar is not something I’m choosing to take on during the hike. My meal planning is an entire post in itself and will be soon to follow.
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This is great!! Very inspiring for other diabetics! I am one too. And also an outdoorsy active one. I’m so curious about the implantable cgm! And the inhslable insulin. Look forward to following your. Journey. All the best!
T2D, trying lowcarb & keto, no honeybuns, no sodas, increase protein, as I go, without maildrops. GaMe,2020. Want to see what you eat. Good luck.
Wonderful, Mike! As the father of a Type 1 diabetic, and personally a Type 2 diabetic (non-insulin dependent), I’ll be following you closely. Thanks for your inspiration!
Really good to read this, Mike!