Afraid of the Night

Ever been afraid to go to sleep?

Perhaps its nightmares that would keep you up? Something like Freddie Cruger haunting you? Perhaps you hear the song – 1,2 Freddies coming for you. 3,4 Better lock your door, 5,6 grab a crucifix, 7,8 stay up late. 9,10 Never sleep again.

Honestly as a teen the Nightmare on Elm Street movies scared me more than any other horror movie ever has. Just thinking of Freddies burned face and clawed hands gives me the heebie jeebies. And that song – along with images of a little one on a tricycle. Ugh. Well if there was a chance I was gonna sleep tonight – that chance has passed. I didn’t sleep much in the weeks after viewing any of those movies.

Or – perhaps like me prior to my move to CA, the weather channel has kept you up. Hours watching thin red and yellow blobs move across the screen while tickers race below alerting residents of various counties that funnel clouds have been spotted or worse that tornadoes are on the ground.

Before diabetes – basically before life had gone pear-shaped* – horror flicks and severe weather were the only things that would keep my head off my pillow.

Then enters diabetes, in the first few years there were the occasional nights in which I would keep vigil, read a book or watch TV rather than set an alarm. Mostly because it just seemed easier. But for the most part if blood sugars were not behaving I would set an alarm or two and cozy back into my bed. The alarms rarely failed me.

However, sometime in year four I realized I was finding it more difficult to hear my alarms. Solution – move my alarm clock into my bathroom, turn the volume way up and have heavy metal blast through the night. Problem solved. For a bit.

In the last year I have become completely numb to my alarms. I can set a half-dozen alarms at the most ear deafening volumes and I will not wake up. Or worse – I will wake up long enough to turn them ALL off without a clue I’m doing it.

My dear husband has always been alarm deaf. I’m sure it comes from years of me hearing them, getting up and taking care of business. I’m certain he hears them but he knows believes I’m on it. There are nights that I have said – if you hear my alarm make sure I get up, and he does. I mean he makes sure that I get up or at least that I become conscious.

I am now at the point that I cannot trust myself to get up to alarms in the wee hours of the night. My solution – stay up. I rarely go to bed before midnight and most nights its much later. I am afraid to sleep.

My kids blood sugars aren’t always crazy high or crazy low so there are nights that I can safely go to bed by midnight. Yet there is a little voice – no it doesn’t sound like Freddie but it might as well – that says “what if?” Am I finally loosing it?

Should I be looking at color swatches for my padded room? I wonder if they have blue?

I know what would help me. I know there is a wonderful device that monitors blood sugars and had the ability to alert me should danger present itself. Sadly those devices are costly – like car payment costly – and just not attainable for us without the help of insurance. And because the FDA has not yet given the green light on the devices to be used by those under 17 I am at their mercy. Our insurance is a stickler for the rules. There are insurance companies out there that recognize the value of continuous glucose monitors for kids despite the lack of FDA sign-off. I applaud those companies – clients before cost. Because lets face it the only reason a company would hide behind FDA approval on a device that can’t possibly hurt the user is the almighty dollar.

Yes it would mean I would have to hear the alarms but something tells me I would. I believe this because I would get more sleep overall which means I would not sleep walk to the alarms and shut them off before crawling back in bed unaware of my actions. At least in theory.

So dear FDA – please pick up the pace with the approval of the Dexcom G4 continuous glucose monitor for those under 17. You are my Obi Wan Kenobi – and my only hope.

*pear shaped – describes a situation that went awry, perhaps horribly wrong. (I love the UK – The British have the coolest ways of saying shit)

About Christina

Mom of 3 kids, all 3 have Type 1 diabetes - I blog to share stories. I am not a medical professional and my thoughts are my own. Please do not make changes to your medical care plan based on my stories - always consult your medical team. Hope you find something in my ramblings helpful and or amusing. You can find me on twitter @momof3T1s and on my Facebook page Stick With It Sugar. May all your dreams forever be bolus worthy.
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6 Responses to Afraid of the Night

  1. Alanna says:

    Have you considered setting alarms in your T1 kids’ rooms, having them test and come shake-wake you to report? At least the older ones? Is the older in high school? Can she help test the little?

    She will probably be doing that at summer camp, and you can work with her for the first few weeks throughout the night.. That way she gets used to testing herself & she can shake you awake!

    • Christina says:

      Alanna – I have thought long and hard about having my daughter set alarms. She is only 13 though and she doesn’t function exceptionally well without a good deal of sleep. I only get to keep her in the nest for another 4-5 years – after that it is all her. I guess I would prefer she rest now and let me deal with it at least for a few more years – she has a lifetime after that she will need to go it alone. I will transition her by the beginning of her senior year so that she is ready in college to care for herself. I can imagine the wonderful tools and toys technology will bring us by then too.
      As far as Sugarboy – he is only 9 and still needs to spend his time chasing frogs and flying spaceships in his dreams. I wouldn’t dream of asking him to interrupt his nightly adventures. Again – they have a lifetime to deal with it so it will stay on my plate while it can (at night that is – they are very independent during the day).

  2. Tim Brand says:

    I know the feeling. I wish the FDA would approve the G4 for under 17. That’s dumb your ins won’t approve you for the G4. Endo and Dexcom can market the G4 to the under 17 but you can get a script if you ask. Why would a ins company stand in the way. I would keep fighting. Maybe a letter of medical necessity? I hope something gives. The G4 is great.

    • Christina says:

      Sadly our insurance carrier is the same as our medical team – (same company). Thus no amount of begging, arguing, or educating will get me the Dex 4. At our last appointment the endo agreed that the G4 is the best product available and she recognizes the huge benefits – she is just unable to get it for us. I don’t mention the company name for good reason. Honestly I like our endo and her staff. They are knowledgable, kind and supportive. I believe if it was up to her she would have written the script already. I think we can change insurance companies in October and we may just have to do that even if it means higher premiums. Lets hope the FDA gets it approved before then so I don’t feel the need to switch companies.

  3. Scott E says:

    Wow, I can only imagine how hard it must be for you, being afraid to go to sleep.

    I can tell you this — I’ve slept through many of my own pump’s alerts and alarms (or, perhaps, silenced them in my sleep), but if my son so much as lets out a peep from down the hall, I’m jolted awake. I guess parents are programmed to respond to different kinds of alarms (sometimes those little cries have alerted me to my OWN pump issues, when the alarm has not!).

    Here’s hoping that someday you won’t NEED alarms to wake you up. And the FDA….well…. don’t get me started on that one!

    • Christina says:

      Thanks Scott. Its true – if I hear my kids I do wake up even if I didn’t hear alarms. Maybe I should put baby monitors in the kids rooms – surely my teenage girl would love that. 😉

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