Clock changes disturbing sleep in ME/CFS

Discussion in 'Sleep Disturbance' started by boolybooly, Mar 31, 2025 at 10:04 AM.

  1. boolybooly

    boolybooly Senior Member (Voting Rights)

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    Twice every year I am forced to shift my circadian rhythm an hour and it messes me up for a week every time.

    I have finally written to my MP to ask her if anything can be done to stop this anachronism and took a moment to help her understand ME/CFS a bit better and why this is a particular bug bear for me.

     
  2. hotblack

    hotblack Senior Member (Voting Rights)

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    Same. It always messes me up, never used to.
     
  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Interestingly the clocks going forward seems to disrupt me much more than the clocks going back. I always joke that I end up with jet lag.

    It is strange that a relatively small change (1hour) seems to have a disproportionate effect, even for those of us like me that have no fixed timetable so can ignore the change in practical terms.
     
  4. Kitty

    Kitty Senior Member (Voting Rights)

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    I don't notice them so much because I stick to the old morning times, until I reach the point where I realise I've adjusted. I never know what time it is in the afternoon and evening anyway, I lose track.

    I would prefer it if we could just stick to BST all year round though.
     
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  5. Sparkly Unicorn

    Sparkly Unicorn Established Member (Voting Rights)

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    Same. My body and circadian rhythms get really messed up and it can take a while to recalibrate. It's not easy when trying to have the minimal contribution to family life.

    It's rubbish for families with young babies too.

    We don't exactly send kids and everyone to harvest the fields and therefore need more light so why keep it up?!
     
  6. Utsikt

    Utsikt Senior Member (Voting Rights)

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    I also notice that my eating rythm gets messed up.
     
  7. PrairieLights

    PrairieLights Senior Member (Voting Rights)

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    That affects me much more.

    For sleep I am tired all the time anyway and the clock change just feels like a bad day which happens randomly anyway.
     
  8. boolybooly

    boolybooly Senior Member (Voting Rights)

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    I would like it if I could sleep in but my sleep timings are easily upset by any cognitive events which involve planning, like deliveries etc which also includes changing the clocks. Unfortunately everyone in the world insists on reminding me the clocks are changing.

    So this morning, after I went to sleep on time for BST last night, I needed to sleep until at least 8:30am but woke at 7:00am instead (GMT 6:00am) and could not get back to sleep as is sometimes the case. Basically missed out a sleep cycle and this always affects me badly. Feel lousy.
     
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  9. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Ditto! I had been sleeping better than usual over the last couple of weeks. But last night I couldn't get to sleep until about 3am - 4am and today I am wiped out. Past experience tells me that it could take at least a week to adapt.
     
  10. Steppinup

    Steppinup Established Member

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    I agree, I have never understood why this condition has always made me much more inflexible when it comes to time zone changes or even trying to move my own sleep time back by even just half an hour... and trying to do something either physically, mentally or emotionally taxing at an earlier time in the day than I'm usually able can mess up the rest of my day so much! Ideally one wouldn't be so unwise as to try but as others have said we still need to cater to others' timetables. I always underestimate the magnitude of the impact as it doesn't make sense! I have always been a natural night owl but not inflexible when I needed to achieve things earlier in the day.

    Interestingly @Peter Trewitt, I always found it easier to travel west around the world, now if I could just continually do that on a private but fully staffed ocean liner somehow, with stops along the way, I could escape the "jet lagged" sensations I get just living in the same place but having to change the clock. :sneaky:
     
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  11. Kitty

    Kitty Senior Member (Voting Rights)

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    Maybe doesn't affect me so much because my sleep times vary so wildly anyway? I try not to schedule anything before 1pm, and it's later than that when possible—I have more choice over the time of supermarket deliveries than most things, so they're always after 4pm.

    If you get to sleep some time roughly between 1am and 7am, you're already on a different schedule to the rest of the world. Maybe not surprising one hour doesn't make a big difference.
     
  12. Steppinup

    Steppinup Established Member

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    I'm similar to you @Kitty except my sleep time fairly regularly starts ~1am and I find that extra hour in the late afternoon while you are on the same time as others makes a big difference. I mostly don't function well enough for interactions until after 3pm and most carer organizations and other departments I am reliant on close at 4pm so when that extra hour doubles my functional time available for calls and other interactions. Often the schedule setting etc staff I need to contact finish at 2pm so 4pm is actually better than that at least.

    Also, my friends are larks and as a night owl I hate DLS as it reduces my functional window for calls or visits.
     
  13. Denise

    Denise Senior Member (Voting Rights)

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    From what I understand, time changes can be really awful for people with narcolepsy --- I wonder if it might be worth seeing if an org related to narcolepsy would get on board with helping...?
     
  14. oldtimer

    oldtimer Senior Member (Voting Rights)

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    I wish I had enough grip on what time of day to the nearest hour it is to be affected.
    I presume those people bothered by the time change aren't affected as the days shorten and lengthen by an hour over the few months that it happens normally.
     
  15. jnmaciuch

    jnmaciuch Senior Member (Voting Rights)

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    Exact same here! I've been saying this to my GP for years. Any time change really messes me up. Even having to wake up a half hour earlier than normal for an appointment would make me feel like I got run over by a truck (which is saying something, considering how bad I would feel normally).

    I have some pet theories about this that I've been trying to see if I can measure experimentally. Turns out that mitochondrial and cytosolic NAD/NADH ratios are directly connected to circadian rhythm regulation.
     

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