Jessica Phillips guest posted on SUM a few years ago, talking about her first 500 days with diabetes.  (Which prompted me to do the math, and as of today, I’ve lived approximately 9,097 days with type 1.  Weeee?)  And today, she’s back to talk about how her perception of sleep has changed for her since her diagnosis in 2008. Thanks for posting today, Jessica!  

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Jessica Phillips, guest posting again on SUM.  Happy to have her!!

There has been a topic of debate in my mind recently, and it revolves primarily around sleep and diabetes. Thinking back to my childhood, I fondly remember the arguments I would come up with whenever I was prompted by one of my parents to go to bed. My protests against what I now deem as the most glorious of all activities included: “No, I am not sleepy/tired/ready” or “I am just resting my eyes right now.” In futile protest I would also rebuttal with “just one more TV show,” or “just five more minutes.” My younger self was so adamant that going to bed was an inconvenience, and I’d keep putting off until it could not be put off any longer.  Sleeping seemed like a chore! Diabetes continually brings these childhood memories to surface and I have to laugh because I wish so badly for the simplicity of those memories from years ago where just going to bed was so easy, and yet I fought against it. Now that I am older, as well as a person with diabetes, I of course wish for an unreachable goal at the end of a long day – to just go to bed.

For the first 26 years of my life, my bedtime routine only consisted of, well, going to my room, getting into bed, and closing my eyes. I was diagnosed with Type 1 on January 25th, 2008, and since then my routine has developed into an elaborate to-do list. I now long for the days when sleep was so simple and the steps to reach such euphoria were just a pajama-change and a teeth-brush away. 

My nights require me to not only stab myself in multiple areas of my body, but also include worrying about several things, including (dramatically), an accidental overdose or unintentional miscalculation possibly leading to very scary things. Adding to my nightly routine of removing my contacts (stupid nearsightedness), brushing my teeth, and sometimes washing my face, I now add: the testing of my blood sugar by pricking one of my fingers (or several if they’re not cooperating) on one or more test strips (those suckers really love to Error 5 sometimes), deciding based on that blood sugar reading what happens next, injections of two types of insulin (Novalog and Lantus), thinking about the last time I ate and what it was that I ate, calculating in any recent exercise/alcohol/food/medication (and by calculating, I mean guessing), batting away anxiety about possibly taking too much insulin or not enough, and worrying that I might wake up a few hours later either in a cold or hot sweat wondering what went wrong. Or even on the rare occasion I will, (now very dramatically), wonder if that night will be the night that I don’t wake up and my body decides to stop alerting me of hypoglycemia and I will become a victim of the feared “dead-in-bed syndrome.”

For those of us with type 1 these nightly checklist items are all normal, because this is what we have to do in order to stay healthy and living. For myself, I notice a lot of the differences between a diabetic and non-diabetic lifestyle.  I have been living with Type 1 for 3 ½ years and I am still becoming adjusted to the fact that I have a chronic, and mostly intangible illness. I often wish for the ability to just go directly to bed without the worries and tasks involved with diabetes. I want to simply become tired, turn my alarm on, and go straight to bed. No worries, no anxieties, no fear … just blissful sleep. Of course, if this were a diabetes wish list I would wish for a lot more than the ability to skip the nightly routine (Hello, cure!) but it’s hard to not miss the little things sometimes. 

I will admit there have been several occasions where I have had to indulge in an irresponsible trip straight to my bed where I didn’t bother to check my blood sugar, take even my basal insulin, or allow myself to think about diabetes-related thoughts. I feel as though diabetes forces the need to establish such a high level of constant control over my life that it is necessary to sometimes just take a night off in order to not go into the crazy deep-end of psychosis. I always find solace in reading about other people’s experiences with type 1, especially pertaining to the emotional side of dealing with this disease because to simply put it, it’s a pain in the butt (and the hip, and the fingertips…). I can see why the depression rates are typically high with this illness because it’s such a never-ending chase to reach near-perfection, and the reality remains that it’s impossible. 

Numbers rules our diabetic lives: A1C, mg/dL, carbohydrate counts, insulin-to-carb ratios, hours of time spent doing things that will affect the aforementioned numbers … also known as “everything.” If we diabetics had a hip-hop anthem it would definitely be called, “Numbers Rule Everything Around Me”.  [Editor’s note:  Holy Wu-Tang reference!]  As I go off to bed, I try to remain grateful for everything I have in order to gain a more balanced perspective, but I’d be lying if I didn’t say that my wish is to run straight to my pillow and fall asleep. 

So here’s to waking up to 100 mg/dL, and good night! 

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Jessica Phillips is a California native living in San Diego, CA. She was diagnosed with type 1 on January 25th, 2008 and her goal is to stay connected with the T1 community both locally and online. Jessica has a Bachelor’s in Art History, as well as a Master of Arts in Public Administration and is completing her schooling in February 2012.  She currently works as a graduate school counselor, and hopefully she’ll be sharing her thoughts on SUM again soon.

As a PWD or the caregiver of a PWD, is your bedtime routine impacted by diabetes?  For me, I always have this compulsive need to check the insulin-on-board on my pump.  That, and I keep a jar of glucose tabs on the bedside table.  Without these two things, sleep is restless.  (Pun sort of intended.)