What happens if I don’t… stay in bed?

Hello sleepy friends! Dawn here from Positively Narcolepsy and Going Beyond Coping. Today I’m talking about an experiment I did with my life by asking… What happens if I don’t stay in bed? If I don’t keep going back to sleep? You can either watch the video or read the text below it (they’re very close but not identical).

https://youtu.be/nPuVovBqqvM
What happens if I don’t stay in bed?

I love helping people cope, it’s my purpose and why I shoot these vids and do all my group, posts, blog, etc. Narcolepsy (and most chronic illnesses) is hard to navigate alone and the things I talk about are not the kinds of things you’ll get from a doctor or mental health professional. It’s only “my” experience of 38 years with narcolepsy and 8 other disabling issues but something in it might help you too.

Being sleep deprived often keeps me from noticing things that are so obvious once I notice them. Your brain needs a certain amount of processing power to operate (did you know that tiny organ called the brain uses up 20% of the energy for the entire body?) and when you’re sleep deprived you have to teach yourself how to help yourself by paying extra attention to things.

My asking myself this question came about from having misery every single morning where I’d wake up in the early morning hours and just go back to sleep. I’d get stuck in these loopy dreams or close my eyes just for the alarm to go off again – it felt like torture and it lingered.

Narcolepsy is a segmented sleep disorder. It’s easier to tell when a sleep segment has started than it is to tell when one ended. One clue is that your sleep efficiency is awful – you might be able to dose back off but it’s not “helpful,” it’s fitful or fruitless. See chart.

Segmented sleep disorder narcolepsy

At the same time I was running this particular experiment, I also had no time to myself. I would get up and run run run trying to take care of the kids getting to school, then work, then kids, then dinner then Zzzzz. By the time I got to the end of my day I was toast and had no quality time left for myself.

This left me feeling taken advantage of… like my whole life was for other people.

So, instead of going back to sleep, caught in that insufferable loop of dreams, I decided to get up early and just see what happened. What was the rest of my day like? What was the next day like? I started getting up at 5 when everyone else had to be up at 6. I’d sit and drink coffee, mess around on my phone, color, meditate, whatever I wanted to. My cognition was low but looking at funny pics doesn’t require much processing power and being able to laugh at 5 in the morning it truly a gift unto itself!

When it was time to wake the kids and get the day started, I was more awake and less harried than I had been sleeping until 6 right along with them… because I “could.” I had the time. I just didn’t realize it came with such a premium. The narcolepsy piper always gets it’s due.

What we can do and what we should do are not always the same thing!

The BEST thing you can do for yourself is run some experiments. You’ve got the REST of your days to deal with this! Narcolepsy (or sleep deprivation from apnea, insomnia or chronic pain) does not go away. You may have times when you cope better than others, and I hope you do! But, your meatsuit is faulty and there’s no operating manual for your individual model (or any model for that matter) so you gotta keep trying to figure out how to take care of it best for YOU.

Try to notice patterns in your sleep. That’s what inspired me to try it in the first place – going back to sleep made for a bad day, what did getting up do? I had no idea lol, how could I? I hadn’t tried.

Another example of this is scheduled napping. Many of us have a “tell.” I asked in the Positively Narcolepsy group if anyone else did and if they could describe it. For me, it’s a sense of disconnect. If I ignore it and don’t nap I go further into the sleep segment and start to deteriorate into restless legs, the nods, the yawns, brain fog, eyes losing focus and if I still don’t sleep I start heading into psychosis – it happens faster than people think it does when you’re already an average of 3 days sleep deprived. Others reported dropping things, brain fog, hard time answering questions, body temperature changes (the temp controls are in the hypothalamus which has been damaged by N), and ringing in the ears. You can try taking a nap once your “tell” hits and then just see what happens.

You can do what I call a “nap time test” where you take naps at varying durations over the course of a few days/weeks to see if any amount of time is “better” for you than another. So you try 10 min naps, then 20, 30, and 40. More than 40 is pretty unrealistic as most folks only get an hour for lunch and I’ve learned that some don’t even get that!

Many of us can stop ALL those symptoms with a nap. Even prevent the symptoms altogether once you’re tuned into channel YOU enough to notice them.

I ended up at 40 mins. I set my alarm and if I can’t “sleep” I call it a “rest nap” and just close my eyes, slow my breathing, quiet my mind and just rest. If you need help learning how to quiet your mind – there’s a piece on my blog called “Killing the monkey in your mind – learning to clear your mind without meditating” it’s available in text and video. Just go to GoingBeyondCoping.com and search monkey and it will come up.

Hopefully you’re starting to get the idea that you can do this with any question in your life… what happens if I don’t? Hesitance to change comes about from either not noticing, not knowing what to do about it, or being afraid to try. I suffered from all three of those for a very long time lol. So, instead of trying to make huge changes, or beating myself up for things, I just did some experiments and you can too… It’s really simple… just ask yourself the question, “what happens if I don’t?” and then go find out!

If you enjoy my videos please Like and/or Share them. Facebook and YouTube are very congested and the more “reactions” something gets, the more people they show it to which means the more people who might need it will get a better chance to see it. Your support means the world to me as I continue on my mission to help people with chronic illness learn to keep going beyond coping into thriving and loving their life. As always you can find me on Facebook on the Positively Narcolepsy page and in the Positively Narcolepsy group, on my YouTube channel – GoingBeyondCoping without spaces and on my blog at GoingBeyondCoping.com Make it a great day people! The choice is always yours!

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Dawn Super

I have a multitude of disabling disorders and this site is about how I'm going beyond coping into thriving and loving my life.

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