Thursday, June 17, 2010

What Are Your Thoughts on Sleep??

To morning or not to morning?  That is the question that is often debated by the ME/CFS crowd.

For a long time, I subscribed to the theory that you should work incredibly hard to maintain a specific sleep routine.  This means going to bed at the same time and getting up the same time EVERY SINGLE MORNING AND NIGHT.  It is virtually impossible for anyone to follow this lifestyle and have a social life.  The worst thing I have found about this method is how hard it is to go to sleep at night, especially without a pile of drugs to knock me out.

I swear sometimes it is like my energy system is wired backwards.  Sadly, that ends up with me being violently sick from lack of sleep.

After that time period, I got into the habit of sleeping whenever my body told me to sleep.  This works pretty well too, other than the fact that I am asleep for short periods of time all over the place, and that no real restorative action is happening in my body.

So here is my question to the Fibromyalgia and ME/CFS crowd - which lifestyle do you choose for sleep??  I get the feeling that I'm not the only person who is wondering which routine is more useful.

(Images from WeHeartIt)

Strict routine or sleep at whim?  Do tell!!!



Diana Lee said...

I aim for a regular routine because it makes it more likely I'll be able to do an activity or two that keeps me functioning at a higher level each day. Of course, that's much easier said than done. On a good day I find that it's best if I get up by 9 am and then take a nap in the afternoon. Sometimes a very long nap. Sometimes that interferes with my ability to get to sleep that night, but usually it doesn't make a difference.

DrSnit said...

I know we are SUPPOSED to have standard hours. I TRY to go to bed around(ish) the same time and get up(ish) at the same time.

That's all I can promise. I take lots of naps. That's all I can promise.

I work with a neuropsych who said, "I don't CARE of you sleep in the morning noon or night as long as you're trying to establish some sort of regular schedule."

So maybe if you stop TRYING to get up in the MORNING and maybe worked towards the crack of noon or something. LOL

meanwhile-- I often stay up till 2-4 a.m. and sleep till noon.

I suffer only when I have early morning doctor's visits (which is frequently meaning I suffer).

elisabeth said...

As an insomnia sufferer, as well as being on several medications that mess up my sleep cycle, I've been working on this issue for a while with my doc. I have the added frustration of needing to be up early for work, so going to bed at a set time is extremely important. However, I hear from my friends with CFS and other RA sufferers that they need to find their "natural" body clock, which generally runs a few hours after standard bedtimes.

My hubby (who is thankfully free of these issues) is definitely a 2 a.m. bedtime kind of guy. He forces himself into his work hours however, so he generally runs short of sleep until weekends, when he catches up (something my doc says is a big no-no, but he mostly gets away with it). For years my dad stayed up late, worked early, but then took a nap when he got home from work, and that worked really well for him. Everyone is a bit different, and it takes a while to figure what your base sleep schedule is.

If I had my druthers, I would stay up a bit later (10/11) and then sleep until 8. I seem to function best on that schedule, and am most productive in the mornings. Unfortunately, I can only get away with that on weekends.

Dawn said...

I'm currently still working which doesn't give me quite as much flexibility at the moment - so this is my current sleep schedule:
In bed by 9pm / weekends I might stay up until 10pm - weekdays I'm awake at 6:30 (yes it's dreadful), then I take a "hidden" mid-day nap at work for about 30 minutes and take another nap for about one hour when I first get home. On the weekends or my days off work - I sleep as late as my body wants too (normally 10am) and then nap on and off all day.

I've also heard its best to get on a regular sleep schedule but right now I'm listening to my body out - hoping it doesn't fall apart.

Anonymous said...

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PJ said...

I'm somewhere in the middle. I let my body dictate when and how much it needs to sleep, but I try to go to bed & nap close to the same time each day. I typically wake up at the same time, too, but will sleep extra if I've overdone it in some way.

rlee8235 said...

I guess I'm too late! I think Jolene left a blog award for you already! I love your blog and hope others enjoy it as much as I do!

Annie said...

Awww, thank you for the blog award!!! <3

All your sleep suggestions are really helpful too, it is really wonderful to not feel alone in the world.

Toni said...

What works for me is the strict schedule, but then I don't have a social life :-)

I turn out the lights at 10 p.m., listen to an audiobook until I fall asleep, whether it takes 15 minutes or two hours (the "rule" that says if you're not asleep in 15 minutes, you should get up does not work well for me). Then I don't allow myself to get out of bed until 7:00 a.m. even though I may not be sleeping from 5 a.m. on. So, that's what works for me: From 10-7, I'm in bed either sleeping or pretending to sleep!

Alex said...

I've tried everything that my "specialists" and "sleep clinicians" have recommended.

The first, when I was 14, was to go to bed at 1am and get up at 1pm. (I was basically bedbound that year, so I couldn't attend school.) My sleep pattern changed from sleeping between 11pm - 3am and 5am - 7am to waking every hour, and staying awake until 2am.

Then, a few months later, I was told to get up at midday every day, when I wasn't at school the next year. (With no set bedtime, but only being allowed to read 2hrs before bed and whenever I woke.) This didn't work either, but my sleep had started to recover, and I was 15.

Then I went into an inpatient ME/CFS "treatment" program [read: crazy amounts of exercise, no rest, even if you're passing out on the treadmill or lifting weights.) And I had been confined to a wheelchair the previous year! Bedtime was at 9pm, and I had to get up at 8am. I lay awake until 3am, then woke every hour, sometimes staying awake for hours.

When I was nearly 18 I saw another sleep clinician, who diagnosed me with Idiopathic Hypersomnolence. (essentially Narcolepsy, without REM sleep.) She claimed she could cure me, and I would be out "going to parties, meeting boys, and graduating this year." (That was 2009) I had to get up at 10am when I didn't have school, and could go to bed when I wanted. But by now, I was awake until 8am some days, and couldn't get out of bed because of the nausea, disorientation, dizziness and severe headaches. I stopped seeing that doctor!

Now I am trying to get into some sort of routine, where I am in bed when I'm sleepy, as long as it's after 10pm, and by 2am at the latest, unless I'm wide awake. I get up by 2pm most days, sometimes midday if I sleep.

Lately I sleep between 7am-9am and 11.30am-4pm, waking at least every half an hour, of course. Sometimes I get up at 10am, and nap between midday and 3pm. This has worked best for me.

My main problem is that my body clock has completely reversed, and I cannot get to sleep easily or stay asleep. Unfortunately, the medical profession is at a loss! I have tried drugs, sleep hygeine, everything, but I welcome suggestions.

I hope my (bad) experiences help when choosing a sleep regime. (If choosing one at all. Sometimes listening to your body is best.)