Being brave is being afraid
. . . but doing it anyway.

. Katherine Marple

Published Articles

We Are Not Waiting

Posted on October 8, 2014 at 12:00 PM

Katherine Marple Oct 8, 2014 Originally Published on http://www.diabeteshealth.com/

 

I have a fear of Dead in Bed Syndrome. It’s an ailment which many diabetics are afraid of, but not everyone has experienced it. I, unfortunately, have been in more than fifteen insulin shocks in my 16 years with type 1 diabetes.

 

 

Some shocks came in the beginning, with inexperience and miscalculations. Others came from an allergic reaction thought to be from using Lantus. Most came during my extremely tightened control during pregnancies, which left little room for error.

 

 

I started using the CGM (continuous glucose monitoring system) in 2010. It wasn’t very accurate and would sound alarms when my glucose wasn’t actually out of range. After three months of having it as a constant companion and reminder of my disease, I set it aside. It was information overload for me and I was overwhelmed by seeing the many swings in my glucose trends. Using the CGM taught me a lot about how diabetes reacts in my body, so the short time spent using it was not in vain.

 

 

After giving birth to two babies within the past three years, I’ve struggled to regain the glucose control I once had. Partly because I’m distracted from two toddlers running around, partly because my body just doesn’t react chemically the way it did before pregnancy. Healthwise, I feel different and it’s a real battle just keeping my blood sugars in line.

 

 

I started using the CGM Dexcom G4 about four months ago. I’m not on information overload this time because I can use any help I can get to rein me back into each moment and focus on my health. This model of the CGM is also much more accurate in its readings, so even though I still test on my meter before medicating, I don’t have alarms sounding with misinformation.

 

 

Due to my history with insulin reactions nearly costing me my life, I still have a fear of Dead in Bed syndrome. Some nights, my husband is at work while I’m asleep, which leaves me feeling vulnerable to insulin shock. I worry and have anxiety nearly every night before I shut my eyes. During those prior fifteen or more insulin shocks, if my husband hadn’t been beside me to feel my clammy skin and change in breathing patterns, I would have succumbed to this syndrome’s fate.

 

 

While I need to find a way to defend myself from this sleep syndrome, I find comfort in my husband’s presence beside me. I am very diligent with my glucose trends and take every precaution against low blood sugar readings, but I still wake at times with readings below 40 and force myself to get up to treat it.

 

 

Since my husband works the night shift at times, we started researching whether he could somehow get notification from the CGM if I were to be in trouble during the night. He works several minutes from our home, so would be unable to check on me during breaks. Thus far, we have set up a system where he will call or text me every three or four hours after I tell him I’m heading to bed. For a reason I can’t explain, I wake to the phone signals more often than I do to the Dexcom “low” alarms.

 

 

This phone system we’ve enacted is just a Band Aid that gives us a little peace of mind. But, I recently came across CGM in the Cloud, which –if approved- would be the answer we have been hoping for, to ward off the Dead in Bed monster. CGM in the Cloud is a preliminary system which uploads the CGM readings into a Cloud where it then gets transmitted to an App on a phone. With this system, anyone from any place in the world would be able to have access to a loved one’s glucose readings, using a password and permission. If he checked my readings on his phone and saw I was in trouble, then called and I don’t answer the phone, he could send paramedics to help me.

 

 

CGM in the Cloud sounds like a miracle to us. Common sense meets technology meets an undeniable need for people like me. Once approved, I may finally be able to get a good night’s sleep in fourteen years after my first insulin shock. My body needs it and my family demands the safety net and peace of mind this system would provide.

 

 

CGM in the Cloud facebook group has over 7,000 members -https://www.facebook.com/groups/cgminthecloud/

 

#WeAreNotWaiting

 

 

Katherine Marple was diagnosed with type 1 diabetes at age 14 in 1998. She is the mother of two small children, has battled insulin resistance, Pre Eclampsia, and pump failures, leading to insulin therapy via MDI using Levemir, Apidra & Symlin, sometimes Metformin & CGM. She is the author of two diabetes related novels: "Wretched (this is my sorry)" and "Deathly Sweet." She can be found at www.KatherineMarple.com and www.facebook.com/KatherineMarple

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