sleeping longer than ever before

[Vlaminck]

Hey, in W&W. Just thought I'd touch base about something that is starting to get regular. I normally would get 6-7.5 hrs sleep, and have never in my life that I can recall slept as long as 9 hrs. But lately I've been sleeping close to or even well over 9 hrs a night (got 6.5 hrs the other day for a special reason and felt fine, I'm glad to say). Puzzled why I am consistently sleeping so long. I'm retired, so have more flexibility to do so but still. And I don't feel bad at all after getting 9 hrs, but rather quite fine. Just wondering why. Anyone else with CLL, esp if in W&W, experience anything similar? Thanks

[mrsjsmith]

If it’s very cold and dark in the mornings where you are in the US, as it is in London, that could be a reason. I have found I need to set my alarm otherwise I could sleep happily in a warm bed for longer now.

Colette

[Vlaminck in reply to mrsjsmith]

Yes, it is both here in US also. I'm sure that helps.

[ANewMe2024]

I've always loved my sleep. That being said I can sleep well over 8 hours without a problem, but I've chalked mine up to my mental state right now. It's easier to sleep and turn off my thinking. Normally I'm up at 5am for work but lately I've just wanted to keep sleeping.

[mrsjsmith in reply to ANewMe2024]

How interesting I am the opposite and my brain is in overdrive if I am worried and that keeps me awake.

[Vlaminck in reply to mrsjsmith]

I have been that way, in overdrive, much of my adult life, and being able to sleep has always been an issue. Not as much lately, when retired, but now to the opposite?

[mrsjsmith in reply to Vlaminck]

To be honest I wouldn’t worry about it and it could be your body’s way of saying you need that extra sleep. I have had a head/chest cold for ages so hot water, honey, lemon and ginger and sometimes a slug of whiskey has been my bedtime drink recently and I am sure that is aiding the extra sleep.

Colette

[Vlaminck in reply to mrsjsmith]

Ah, a hot toddy!

[mrsjsmith in reply to Vlaminck]

I will be preparing one in about an hour along with my hot water bottle, so combined with a good book I will sleep well 🤞

[Edalv]

I also tend to sleep more in winter months, with longer and colder nights the body needs that extra hour or two to recover. My sleep quality is relatively good considering my age, but occasionally I take 1mg of melatonin to help me fall asleep.

[wellbeingwarrior]

hi Vlaminck, yes I do sleep much longer than I used to. 👍

Average 9 1/2 hours a night of quality sleep, and that’s more than I used to need.

I have fatigue issues and manage it with regular cardio exercise. I am always incredibly tired in the evening and easily fall asleep earlier than I used to go to bed. But mostly, on waking I have the energy to get going again during the day.

When health professionals ask about my sleep .. I laugh and say “better than most!”.

The best way I can describe how fatigue impacts me is I wake up in the morning with a 75% charged battery (rather than the 100% it used to be). Then no matter what I do (active or non active day) it slowly drains during the day until it hits very low - usually late arvo, early evening and I start feeling like a slug.

The key for me is … remaining active doesn’t make me more tired (unless I really overdo it) in fact not being active does that!

Trying to explain that to Drs and it goes over their heads. 🤷

My new haematologist said “you probably feel tired because you exercise a lot and have a job”. No understanding that this is not a new thing for me … exercising a lot and having a job … without that daily fatigue that previously had always been my life. So what has changed? I have an underlying chronic disease is what has changed.

The fatigue was first noted during the year I was diagnosed (end of 2019) so before I knew of CLL in my body. It has been the constant topic of my specialist appts, and reported on in my notes, but understandably is not bad enough to be a reason to treat as I am still functioning in daily life, despite the fatigue.

My wee story about sleep, CLL and fatigue 😁

[Vlaminck in reply to wellbeingwarrior]

I am gathering from the nice responses that this is not known to us to be a particular CLL-related sign. Fatigue, yes, but sleeping longer like this hasn't been. That's good to know so I can just enjoy it!

[wellbeingwarrior in reply to Vlaminck]

My unproven theory/opinion is that for some of us.. the body turns up the sleep cell restorative process to help us along 😁

[Vlaminck in reply to wellbeingwarrior]

sounds good to me!

[LeoPa]

That problem is a good problem 🙂. There is nothing like a good night's sleep. Especially when you wake up well rested and happy. Children sleep like that. I'd love to sleep like that every day!

[Grammy3_USA]

Hi there I definetly have noticed I sleep way more than I have ever before starting about a year before diagnosis At work they call me sleeping beauty as I have no problem sleeping from the time I get home from work until the time I awake to get ready for work again. I work night shift On my days off it is not unusual for me to sleep from 10am to 5pm then again from 10pm to 10am I had been telling my doctors for a long time and none seem concerned I suppose it is better to get good sleep than none? Enjoy your rest!

[Deilginis]

Hi, my contribution isn’t really a reply to your question as I am on O&V for the last 7 mos. Before treatment I was suffering from fatigue, as you describe, even though I too work and (once the weather improves) walk daily. Oddly, like you, I find it extremely difficult to wake up before about 9 hrs, and I still have huge fatigue during the day anyway! 😕

[Hidden]

Hello Vlaminck, I am W & W and was diagnosed in 2022. I've always needed at least 8 hours of sleep. I am also sleeping more with CLL. I have found that I can manage CLL fatigue by increasing sleep. I just had a very long week at work and was exhausted by the end of it and slept 10 hours one night and managed to feel recharged.

Best, Emily

[TheaB333]

I’ve noticed my husband (in W&W) seems to sleep a little longer than he used to. It must be restorative sleep because his energy level during the day has not been affected. He also exercises (weights, cardio) 4-5 days per week.

[Vlaminck in reply to TheaB333]

That sounds great. At best, I do intense aerobics 2/week.

[Analeese]

I on the other hand sleep very poorly at night. I wake up often on most of the night. But during the day I have a tendency to nap because I’m very tired. It is quite a vicious circle. I am in remission so I can’t say it’s from active CLL.

[Vlaminck in reply to Analeese]

Sorry for your difficulty getting a good night's sleep. Naps can be very healthy, I understand. But no one wants to be dependent on them. I'm assuming you've explored medically your reason for not sleeping well, as that can be horrible, I know from having had bouts of that.

[22011]

I also seem to sleep a lot. I have to set an alarm or I would sleep around 10 hours so I make myself wake up in 8 ½ or 9 hours (have to walk the poor dog). I don't leap out of bed feeling chipper, but on the other hand once I am up and going I don't suffer from fatigue during the day (though not above taking a nap now and then). My hematologist says it is not related to CLL, which is what I see others are saying, So who knows? Plus I'm in my 80's so entitled to that 3pm nap time.