I Wish People Knew That Diabetes…

Kelly Kunik, who blogs at Diabetesaliciousness, created the hashtag  #IWishPeopleKnewThatDiabetes, and the idea is that on April 20th of every year people share what they’d like others to know about living with diabetes so that no one feels alone on the T1D journey and that others are educated about a life with type 1.

It’s very similar to the project #IWishMyTeacherKnew, and last year over 17 millionTwitter impressions were created with #IWishPeopleKnewThatDiabetes. Sharing fears, hopes, and struggles as they relate to a life with type 1 is certainly raw, but also cathartic. It’s been two years since type one entered our home, and the longer it’s around, I realize that T1D will touch almost every aspect of our lives, but the real challenge is to learn that it will touch every aspect of our lives, and to move on despite it.

When our son was diagnosed with type 1 diabetes I knew that we didn’t do anything to cause it, that he would need to use insulin for the rest of his life, and lows and highs were dangerous. Now, I know more about diabetes, and in the spirit of advocacy, I’m sharing, in no particular order, ten things I wish people knew that diabetes…

  1. I wish people knew that diabetes makes me sad/upset/frustrated/exasperated when I’m at the grocery store.
  2.  I wish people knew that diabetes is often why I’m looking at my phone. I’m checking my son’s blood sugar remotely so that I can check back in on the task at hand.
  3. I wish people knew that diabetes occupies about an hour and half of my time per day, about $200 a month, and we’re lucky to have time and good insurance.
  4. I wish people knew that diabetes means I fear that one day my son will attempt to take his own life by purposefully administering too much insluin.
  5. I wish people knew that diabetes makes me monitor my other child’s water intake, weight, bathroom habits, and moods because I’m afraid that she too will develop type one diabetes.
  6. I wish people knew that diabetes forces me to sometimes trust people I don’t know very well with my son’s literal life, then after he learns to care for his own diabetes, I will have to trust a teenager to make mostly good and responsible life and death decisions multiple times a day, more or less consistently.
  7. I wish people knew that diabetes makes me afraid I might outlive my son.
  8. I wish people knew that diabetes is why I haven’t had a good night’s sleep in more than two years.
  9. I wish people knew that diabetes means almost every week I read about someone who died because they had the same disease as my son.
  10. I wish people knew that diabetes means I have to choose to believe that living with a chronic disease makes people stronger and not weaker, because that’s the way forward.

Please consider sharing your thoughts using the hashtag  #IWishPeopleKnewThatDiabetes on social media on April 20th.

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Sleep, Snow, & April

Earlier this week, Beyond Type 1 posted an article, “I Can’t Sleep,” by Sara Jensen. In the article, Jensen describes the lack of sleep, stress, and ceaseless work that create Caregiver Anxiety. I’ve had every experience that Jensen describes, from a doctor admonishing me that my health is being negatively impacted due to stress to worrying that if I sleep through an alarm my child could die.

She writes, “I lay back down and I breathe in, I breathe out, my mind tells me I won’t be able to fall back asleep, and when I do, the alarm goes off again. It feels like I never closed my eyes at all,” which perfectly describes the mixture of sleepless exhaustion and stress parents of kids with T1D often experience.

At our house, some nights blur by in a flurry of insulin, alarms, juiceboxes, and more alarms.

Recently, I traveled for work, and during that week, Henry was being cared for by his father, and my mom, a nurse. This wasn’t my first time away from him after diagnosis, nor was I afraid. I knew he was in good hands. Yet, 1,806 miles away I woke about every two hours, suddenly, as though a giant animal had jumped on my chest, forcing out all my breath. But instead of an alarm or lights blaring, there was just the night. It was quiet. I looked at Henry’s BG on my phone, it was usually in range, and I’d go back to sleep.

After about the fourth night of waking up in a state of emergency when there was no emergency, I realized how profoundly T1D care impacts the most basic aspects of life: sleep, not sleep, food, and how I think about my son. But profoundly realizing something doesn’t change it. I woke up the same way the fifth, sixth, and seventh nights because I’d been waking up this way for two years– the same animal feeling, but I wasn’t afforded quiet to think about it– there was an obligation or almost emergency to contend with, asleep down the hall, in need of insulin or juice.

When Henry was diagnosed with T1D, what I didn’t know about type 1 could fill the stratosphere. For example, I didn’t know that I wouldn’t be able to sleep through the night for the next two years. Now I wonder if I ever will sleep through the night.

Before I left for work this morning it was blustery, while a few wild snowflakes dashed down. I checked my phone before the workday began, and I laughed when this image from FB popped up from three years ago.

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I laughed because when I looked up from the screen, through the kitchen window I watched it snow on daffodils, but there was a time that I didn’t know what I didn’t know. Three years ago not a snowflake was in sight: eleven more months to live without T1D, to sleep through the night, to eat food without weighing it, without weighing so many vital daily decisions that have become necessarily mundane.

The thing about winter in the midwest is that snow turns to mud, turns to flower. It’s just a waiting game, like waiting for a blood sugar to rise or fall.