Here we go.
It’s about a week away from a beach trip with my family.
My work colleagues are excited for me. My friends ask me over and over, “Are you just ready to stick your toes in the sand or what?”
Oh, I’m ready. Except my toes can never touch the sand again without a complete battery of checks and balances. And that goes for the entire trip. The traveling, the packing, the eating, the sleeping, the walking, the beach itself.
The challenges are all I can think about. A beach trip for a type 1 diabetic can be anxiety inducing and scary. It sounds strange. Thinking about the beach, for most people — including my own family — is relaxing. It is the ultimate getaway. But for me, with my foot numbness and pain, eating habits and medication schedule, it just isn’t.
I have diabetic neuropathy. It is caused by the nerves in my feet being damaged by blood sugar levels for two decades while battling type 1 diabetes. I have diminished feeling in my feet. I can’t feel the difference between hot and cold. As a result, I can’t always tell if I have a cut or blister unless I check my feet nightly. Despite my lack of feeling through touch and pressure, I am in constant pain as my nerves shoot pain signals to the brain and back to my feet.
I also wear an insulin pump. It provides me with what my pancreas cannot—insulin. The pump cannot be submerged in water, and will not work if it gets even a grain of sand or dirt in it’s battery chamber.
To put it into perspective, let me share the routine I have to endure just to walk out on the beach.
•Prick my finger to check my blood sugar. Wrap blood sugar monitor in towel to protect from heat. (Sometimes I use my Dexcom. It checks my sugar on my arm and sends it to my phone. But then I have to keep my phone cool somehow.)
Whew. I think that’s it. I’m ready to walk out into the sun. Everyone else has been out in their beach chairs for an hour.
I’ve got my bag. I’ve got my gear. I’ve got high blood sugar and really just want to go back to bed. But I walk outside anyway.
The sun feels grand. It’s warm and soft on my face. A little smile comes to the corners of my mouth. This will be a good day despite, I tell myself.
My shoes hit the sand. Suddenly I have a deep, desperate longing to feel the sand between my toes. I want to run in it. I want to run barefoot into the ocean, too. I want to do what I did so many times before diabetes.
But careful is the name of my game. It has been for a very long time.
I could run like that. I could let myself go. But I’d be putting myself at risk for small cuts. Cuts I don’t see that can cause infection. And that infection can lead to an amputation.
So here I am at the beach. I’m not relaxed or carefree. I’m stressed. All the time. But I also accept this. I’ve learned to just make it part of my routine. I’m not sad on this day. I just want to be accepted by those I love. And understood, of course.
And then a family member asks… “What takes you so long? I don’t understand.”
And my heart hurts.
You’re right. You don’t understand. And that is a huge part of what makes living with chronic illnesses so difficult.
I know my family loves me. I do. But sometimes you have to go beyond love to understand.
My plea is simple. It is: If you love someone with a chronic illness, don’t judge. And please educate yourself. It is the one thing that will most benefit your relationship. Not knowing and remaining ignorant on the subject will only make it harder.
Life is beautiful. And living with chronic illnesses helps me see that beauty in even the smallest things.
But I also have a very empathetic heart. I now know the challenges so many people face that others just don’t see. And I ask that you try to see them, too.
Open your eyes to a new way of thinking. We all have our way of living. Sometimes by choice, and sometimes by careful checks and balances.