How many hours of sleep a night do you need? - Now with Poll

@Wonko Although I'm very sorry that the above is your experience, you're not alone. I have felt worse, much worse, on awakening every single morning since onset almost 30 years ago.

The television series Star Trek: The Next Generation ran during my early ME years. I recall an episode called "Schisms" where several members of the crew were awakening feeling exhausted. It turned out aliens had been removing them from the ship overnight, and conducting medical experiments. I contemplated the possibility that the writer of this episode had ME, because it described my experience on awakening very well -- that I hadn't slept a wink, and had been badly beaten, with my limbs dislocated or broken.

I'm lucky in one respect. I rarely feel as dreadful later in the day as I do first thing in the morning, although it usually takes a few hours for me to completely wake up and for the pain and "ill" feeling to subside.

 

I know this episode (and all the others) well. I like the writer having ME, thats very clever
Also "Night Terrors" is a good one where they have no REM sleep and start losing their minds is a good one.

 

Snap! That describes me! My best time of day, by far, is usually evening. I know that I've had very high cortisol first thing in the morning in the past. I haven't tested it in recent years though. I'm pretty sure that people with very low cortisol first thing in the morning feel at their worst when they wake up too.

 

8.5 give or take.

 

Maybe add a poll?

 

Idea good, will do (not sure if i can add it to this thread or need to start a new one, i will try).

Edit: Poll added, thanks

 

The CDC recommends for ME/CFS, "Limit daytime naps to 30 minutes in total during the day."

They really have no clue about the variability of this disease, do they? It's not always appropriate to throw rigid sleep hygiene guidelines intended for healthy people at us.

 

err . . . the CDC also recommends this for M.E so . . .

• Avoid exercise right before going to bed. Light exercise and stretching earlier in the day, at least four hours before bedtime, might improve sleep.

 

I'm not doing exercise "at least four hours before bedtime", that seems like a slippery slope situation to me, if I were to ever achieve that it'd then be at least five hours before bedtime, then six etc.

Quite apart from anything else who has the time to change where they are lying down four hours before bed?

 

The problem for me is that doing a little more activity during the day will disrupt my sleep, this includes going grocery shopping.

 

That’s the problem isn’t it, if I do too much I don’t sleep well and then the following day it takes even less to do too much (even if there’s no PEM), so I’ll probably have trouble sleeping again...

This is the most idiotic part of the advise to exercise to sleep better. It’s not a way to sleep better, it’s a guarantee your sleep will get worse.

 

I think many of us are fed up with well-intentioned but misguided behavioral interventions that have little relevance to ME/CFS reality.

 

Long before i was diagnosed and i was "mild" i wondered like hell why exercise made me not sleep any better and seemed to be worse (sleep was worse, ME/CFS was getting worse but slowly at the time). Never got an answer of course...

 

Me too. I joined the gym twice. Each time, I'd go in raring to get fit and sexy like the gym bunnies in the clubs. And my body was like, 'Nope!'

The first day was always fine. But subsequent days were harder and harder. Grindingly hard. And then I'd get the flu a few days later.

I was relatively mild then. Not now, of course. I'm moderate and struggle with any exertion.

 

I wanted to join a T'ai Chi class early on. It's maybe a good thing that I couldn't get a lift. I didn't know then what I had (or did I?) or why I mustn't exercise. I still went for bike rides and long walks though.

 

Indeed, i could also never build up any muscle. Without realizing it i was still pacing where possible...
I wish i had known what i had and could have done things differently, i might not be so bad today

 

I'd get really dizzy and wobble a lot too.

 

If I overexert myself doing something quite physical I fall asleep when I rest afterwards during the day. I don't usually sleep in the day. It's like being a toddler napping after a trip to the park. So far so ok-ish.

Then that night I don't sleep well, followed by PEM including insommnia for however long it takes. There's no dodging the debt.

 

iff I am lucky I might get two hours of sleep before waking then take up to an hour to fall asleep again. my circadian clock is way out I can only get to sleep at 10/11 am and get up 5/6pm . never feels like a proper sleep should and I never remember dreaming during these broken sleeps . I think my sleep got worse after steroid injections in my shoulders 2 years ago the day it happened I went to bed just after tea and was there for most of 16 hrs a lot of that 16 hours was uninterrupted sleep.