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Guest Post: Sleep, Perchance to 100 mg/dL?

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.)

Comments

Sleep/bedtime is forever changed for me as a caregiver of a PWD.

Bedtime routine I imagine is like many others. "What is your number" and "How much active insulin". Prior to the pump bedtime always included a small snack.

Not every night but often I set my alarm to test in the night. We are so active that there are times I am just worried my daughter will drop low in the night even with a temp basil. I don't normally catch lows in the night so maybe it's just to make me feel better.

Great post Jessica. Nothing is simple with D and bedtime is no different. Often I change my sites and insert sensors before bed...and for me there is always the calculation/guess if the IOB means I need to have or avoid a bedtime snack. Most of all, I want to thank you for voicing your concern about the "dead-in-bed" issue. I, understandably, hear it a lot from PWD caregivers, but I've had T1 for 13 years and am in my 30s and sometimes I can't help but think about it. It most often presents itself as the unspoken opposite of my morning prayers of thanks - that I made it thru the night, that I get to see another day... but it's there...

i used to be afraid of nighttime lows, so i very rarely took my levimir at night. bad, bad diabetic! i got over that on my way to becoming a pumper! now i do bedtime blood tests, and bolus if necessary. i set my pump to remind be to check at around 4am. i keep skittles on the night stand, and i'm not afraid to use them!!

I always check right before I fall asleep and I also do check my active insulin. I have my glucagon, juice, and glucose tabs in my nihtstand and my meter stays on my bed.

Just last night I was up THREE hours later than I wanted to be just trying to get my blood sugar up. I saw a slight upturn so I fell asleep. Turns out I was below 70 all night!

and so exhausted I didn't hear any Dex alarms?

I sleep with my meter on my bed, right next to me (and right next to my phone, which I'll explain in a minute). A juice box also lives permanently on my nightstand (my current one is Apple).

I usually check my blood sugar before I go upstairs to see if I need a snack. Then I go through a "normal" nightly routine (contact lenses, face-washing, brushing teeth, etc) and go to bed. I test again when I finish reading, so I'm usually half asleep by that point. Then, depending on the number, what my number was before I went upstairs, and when the last time I ate was and what I ate, I might set an alarm for later so I can test again or maybe go downstairs for a preemptive snack. Of course, whether my phone's alarm actually wakes me up or not depends on how tired I am...

And though "dead in bed" is technically a term reserved for people with diabetes, I, too, fear a low bad enough for me to die during the night. Even worse, I'm afraid no one will know!

dollar dollar bill ya'll! i feel that this whole song is ripe for a re-imagining for diabetics, someone call carey potash!

thanks for this post, jessica, from a former san diegan. :)

as for my nighttime routine, as a PoCWD it's all about the overnight routine, but we definitely keep an eye on the IOB when she hits the hay.

Ah, diabetes . . . fun and games! I'm as mystified by the fact that I'm NOT having 4 AM lows anymore as I am by WHY I was having them in the first place and WHAT made them go away. All I know is, on the occasions that I'm too tired to test at bed, I usually pay for it in the morning, usually with the kind of numbers I'd rather not admit in public.

My husband is "the diabetic" but both of us deal with it. It is so difficult for him to keep his blood sugars anywhere within a normal range and now, even with a Dexcom sensor he does not hear the alarms in the night. "We" had a 36 a few nights ago and it took a long time to get him back. It has helped us deal with all of this by reading the postings on many of the D-Blogs. I thank all of you for all you share with us.

My night time ritual consists of a blood sugar check, an insulin on board check and a site check. On my night stand is my meter several bags of fruit snack and my phone. I keep the phone in case i'm low and home alone and need to call someone. I am 28yrs old and have lived away from my mom for 10yrs but sometime still call her when i'm low and disoriented. When ever i stay somewhere away from home i have to have all my equiptment with in an arms reach or sometimes in the sleeping bag.

I (mostly) always check blood sugar at night before going to bed. Have learned to NOT brush my teeth prior to checking this, because, inevitably, this will mean I need a snack. And, since I am a dental hygienist, that would mean I need to brush again. Super annoying, especially when I JUST WANT TO GO TO SLEEP!! I do not keep my meter and stuff by my bed...but am thinking that maybe I should. I have been known to wake up feeling "funky" and woken up the hubby to go trek tot he kitchen and get my meter and milk, juice, whatever! And, yes, there is a vague, usually unspoken fear about going to sleep. Tried to explain it to my husband once, and although he was sorta sympathetic, I could tell he just didn't get it. That's why I LOVE these blogs, and even started one of my own. Just knowing that others feel and think the same things is amazing for me!! Thanks for the guest post!

Great freaking post Jessica! You totally need a blog...

And thank you, Kerri, for inserting Wu-Tang's CREAM into my head. Did you know Ghostface Killah is one of us?

As someone diagnosed out of the blue with Type 1 at the age of 42, I know well the huge life upheaval that it causes. I long to sit and eat a bowl of pasta, or pizza or ice cream without feeling like I'm cheating. I miss the smooth lines of my waistline when wearing a dress - that insulin pump isn't the fashion accessory I always longed for. And I fear my impatience with the disease and how it makes me a little too reckless at times. At the same time, I see people around me dying of diseases that have no treatment, at at too young an age. And that makes me grateful that I live in the day and age that I do, and that it can be managed if I put in the effort. I had an aunt and uncle that I never knew because they lived with Type 1 at a time when the insulin was crude and the tools didn't exist. They didn't live past their early 30s' and that's just sad. So, like with most things in life, I try to keep perspective. And hope that I can balance a healthy respect for the disease with my desire to live a "normal" life. Feel free to remind me of this next time I complain about wanting to be like everyone else.

I have had type 1 for almost forty years! I am so glad to see type 1 comments. Type 2 is all you see. Type 1 is an itty,bitty minority. We need more type 1 comments!

Terry

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