Altered perception of time: Due to extreme... - CLL Support

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Altered perception of time

PaulaS profile image
PaulaSVolunteer
8 Replies

Due to extreme fatigue, for several years I've been having a sleep almost every afternoon (as well as sleeping well at night). And now I've noticed that when I look back at various events, they all seem much longer ago, than they really were. eg Our last summer's holiday feels like it was about 2 years ago.

I'm wondering if this is a thing of advancing age (I am 64), or the CLL, (diagnosed 6 years ago but still in W&W), or whether our brains assess the passing of time by the number of times we sleep. I sleep twice a day so does my brain interpret each sleep as a day passed?

This isn't a great problem, but I'd be interested to know if anyone else is experiencing the same thing.

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PaulaS profile image
PaulaS
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8 Replies
AussieNeil profile image
AussieNeilPartnerAdministrator

Interesting observation PaulaS and I like your theory of why it may be so for you personally. Like you, I need to sleep in the afternoons due to fatigue. If I try to stay awake I find I'm just wasting my time as I can't think clearly enough to concentrate, though being more active can help, but then it catches up with me in the evening.

I'd be interested how other people respond, but to me, the way we experience how distant the past appears is well explained by looking at a year's experience for a 10 year old (10% of their lifetime) compared to a 50 year old (2%). A year ago for a 10 year old seems ages ago, but recently for a 50 year old, i.e. time apparently goes by more rapidly the older you get.

The perception of the rate at which time passes and indeed the direction are very interesting topics. Physicists don't even agree on what underlies our perception of time and why it is only one way compared to spacial dimensions is of great interest too.

I think everyone will be in agreement with you in that holidays always seem further away than what they were though!

Neil

PaulaS profile image
PaulaSVolunteer in reply toAussieNeil

Thanks for your thoughts, Neil.

I too find I'm wasting my time when I try to stay awake in afternoons. Yes, I can push myself to survive those hours (especially if out walking), but they are no fun, and my evenings are much more bright and functional if I've slept in the afternoon. Without my afternoon sleeps, I'm rather zombie like in the evenings. Different people find different ways that work for them, of course.

And different perceptions of time and space can be fascinating -sometimes mind-blowing. I hear what you say though, re a year for a 10 year old being a much greater proportion of their life than a year for a 50 year old.

On the other hand, you are so right that holidays always seem further away than what they were!

Best wishes,

Paula

Cllcanada profile image
CllcanadaTop Poster CURE Hero

I napped every afternoon, due to CLL fatigue, for years. Then my doctor suggested rather than napping, I go for a walk if the weather was nice... ARE YOU MAD?!

I tried this... the first few times, I thought I was going to collapse, but after 4 or 5 weeks of afternoon walks instead of naps, I found I had more energy. Built a slight energy reserve.

Now each day, from 3 to 4 pm I'm walking, taking photographs and return to view the days 'photographic catch' on my iPad and sip a nice glass of red wine...

Might give something similar a try...

On the CLL space-time continuum matter.. changing from a prognosis of years to months, as has occurred in my case, certainly gets your attention...every nano second counts now. Things that occured a few months ago seem like years ago...

I now slice time finer and finer, so looking back there are more 'bits' of time, which makes things appear at a greater time distance.

Just my theory...remember hindsite is 20/20, things appear closer in a car's rear view mirror, and time, time, time, is on my side...yes it is! ;-)

~chris

PaulaS profile image
PaulaSVolunteer in reply toCllcanada

Thanks for sharing, Chris. I'm glad that walking in afternoons works for you. I'd be interested to see the photos you take, on your 3 to 4 pm walks. (I too am a keen photographer).

For me though, it doesn't work that way. For years I kept pushing myself to be active in afternoons, but I really couldn't function properly during those hours. Even if my feet could keep going (such as out on walks), my brain was in a fog. To make it worse, I'd be shattered every evening. When I finally "gave in" and let myself sleep in afternoons (for at least an hour), I got a new lease of life. It's a big nuisance (not having afternoons), but at least I am bright and lively most evenings now, and my overall energy levels are much better. My husband and I go out for a lot of evening walks - wonderful in the long summer evenings, to be out walking till 10 or 11 pm, taking photos of sunsets.

I'm so sorry that your prognosis is now a matter of months not years. I can see how every nano second counts a lot, for you. I see a lot of your postings on this site and really appreciate your knowledge and experience. Just so sorry it's because of such serious illness, that you've come to this knowledge.

Interesting that you now slice time finer and finer, creating more "bits" of time, and it's this that makes things appear at a greater time distance.

Wonderful that you can say time, time, time is on your side... May the months ahead be even longer and richer than you are expecting.

best wishes,

Paula

splashsplash profile image
splashsplash

Agreed, knowing that my time is finite has definitely made me use it more thoroughly. I cram loads more in since my CLL diagnosis. Exercise and taking VitaminD3 (the sunshine one) in oil capsules has given me more energy and helped with the fatigue.

PaulaS profile image
PaulaSVolunteer in reply tosplashsplash

Hi MollyFletcher, Thanks for your response.

Yes indeed, having CLL does help us see the preciousness of the time we have, and can give us a determination to make the best of it. A lot depends on our own attitude. I have been very impressed (and humbled) by the attitudes of most people on this site (including you, MollyFletcher). And maybe I will also try taking Vit D3 in oil capsules.

Best wishes,

Paula

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Paula..have your doctor run a blood test called 25(OH)D first... then you can get the proper dose of VITD3.

There is a 'sweet spot' in the level of this vitamin and you ultimately want to stay in it...

~chris

AussieNeil profile image
AussieNeilPartnerAdministrator

Hi PaulaS,

Good of you to take the time to respond individually to everyone that replied to your question. Further to some additional points that you've made:

1) Regarding afternoon naps, I find the way they can disrupt what would otherwise be a productive day most annoying, but like you, I find I don't get much choice when the brain fog closes in. I have however been trying Chris's suggestion of going for a walk rather than sleeping if I'm not exhaustingly tired (sometimes you just can't fight it). After about a month, I'm finding it is working - I've even been able to skip a nap a few times this week, though one evening was consequently a struggle. If I haven't been well, it is harder to achieve this though - I guess it is your body's way of saying it just needs the rest to recover.

I too found that a Vitamin D3 supplement helped - I reckon it made it possible to get over that hump of being able to do enough exercise to benefit from it by reducing the incidence/length of fatigue in days after exercising. You'll find there has been plenty already said on this site about this if you search for 'Vit D'.

2) Good to hear you are a keen photographer. I've noticed that Chris regularly includes photographs with his posts that I suspect he takes on his walks. I gather the imminent planned update of this site includes the ability to post larger images, so hopefully soon the community will be able to better enjoy photos from you, Chris and other keen photographers!

Neil

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