The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Getting up late and the strain it causes relationships.

Discussion in 'Sleep' started by Misfit Toy, Mar 1, 2015.

  1. Misfit Toy

    Misfit Toy Senior Member

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    I, like many with Chronic Fatigue Syndrome or whatever name you want to call it now, get up late in the day. Especially since I've had surgery, I usually don't get up before noon.

    Every friend I have gets up at 6:30 in the morning. They are all well of course because I don't know people in my area that have this disease.

    No matter how many times I tell them that I don't wake up early and that I can't wake up early they don't hear me. I had a friend, the other day, ask me to go to a flower show in the city. They were going to be going on the train and I was to meet them at the train at 9 AM. I thought to myself, are you kidding me? I didn't go, of course.

    My best friend just emailed me and said that she would like to come over next week and help me to start making jewelry again. She said that she could come over on Thursday at 10 in the morning. This is a friend I've had for 13 years who knows I cannot get up early.

    I don't know what I have to do to make people understand that I do not wake up early. I would like to send everyone a flyer saying that I have a job and that job is during the night shift- I work from midnight until five in the morning so I will not be able to do anything until around 2 PM. If I had a job that was during the night shift they would understand, but because I have an illness, everyone thinks that I can just wake up and go and make myself do this.

    I don't understand it and I feel like it's a mental block on their part to not understand that I cannot get up. And I'm so angry about it that I could scream.

    This close friend of mine goes to bed at 8:30 every night. I don't know other people who go to bed that early. I respect that. I don't ever call her after 7:30 at night and I don't understand why she can't respect my need to get up late. It's not a choice, it's just something I have to do because of my condition. She has to go to bed early because she has to get up at 5:30 in the morning and she needs nine hours of sleep and I totally get it.

    I'm tired of defending myself because that's what they make me do and I'm tired of having to explain this over and over again. I am at my wits end about it and I am unsure of what to do.

    Before anyone says give them a pamphlet about this condition, at this point, that wouldn't make a difference because honestly they don't give a crap. That's what's going on here. They don't have it, they get up at 6:30 in the morning, they can't understand how other people don't.
     
    Last edited: Mar 1, 2015
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  2. August59

    August59 Daughters High School Graduation

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    I go through the same thing with family and friends. It eve ncause some problems doctor offices because I will not go to an appointment before 1:30pm. If I have to go to one at 8am I just stay up all night. I only get about 4 (maybe 5 hours) of sleep and I'm not about to mess it up unless it is an absolute emergency!
     
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  3. Rand56

    Rand56 Senior Member

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    If you think they can't handle being told about your illness, and if I was in your situation, I'd make something up. Tell a fib..who cares. Obviously it's stressing you. Anything to take some stress off you and to keep them from badgering you about it, sounds like a good plan to me.
     
  4. L'engle

    L'engle moogle

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    I get this. It's one of the things I feel most stigma about because it is such a marker of 'conscientiousness' in our society to get up early. For me there is no point in getting up early if I will not be able to function and will just feel incredibly ill. These days I can't sleep until at least midnight and need a good 11-12 hours downtime (in the dark, no stimulus) so i can't make any plans before one. It's one of those things people have a real perception about being some kind of a choice. I was a morning person before I became ill. Now it just isn't possible.

    I get the impression you aren't embarrassed about this, just angry, so you are several steps ahead of me! I feel embarrassed at the idea if I dated someone and stayed at their house and was in bed till noon while they got up and shoveled coal or read stories to blind dolphins or whatever other morally superior activities people do when they wake up early.
     
  5. snowathlete

    snowathlete

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    noon is an early start for me. It is common for people with ME/CFS/SEID to go to bed late and get up late. In my experience it messes with something - probably lots of somethings - and there isn't much you can do about it. My wife and I have had lots of disagreements about it, it does interfere with life in a big way, but it's just the illness.
     
  6. L'engle

    L'engle moogle

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    Also I finally met another chronically ill friend in my small town. We both have a limited window for getting out. We've met twice so far in the afternoon, hang out for an hour or so with food and conversation, then we both go home before the crash gets bad. It seems to work since we both have the same types of hourglass hanging over our time. So with the right friends it is possible!
     
  7. Misfit Toy

    Misfit Toy Senior Member

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    @L'engle -your response to my post cracked me up. No, I am not embarrassed by it. I don't think it's fair. Years ago I used to work the night shift at a radio station. I ran the board from 12 until five in the morning. I would go home and be in bed by seven and wake up at around 2 or 3 pm. People understood this and respected my hours. Friends would say okay, welll we'll get together at night.

    I think it should be that way with this situation as well. And if I did end up dating somebody and they had a problem with it I would break up with him. There's nothing I can do about it, it's written in slate, it is what it is.

    I just talked to my friend and told her that I am truly tired of this crap. That people need to realize, I just can't get up early and I'm tired of explaining myself and she said that she totally understood and it was her fault because she had forgotten. So she's going to come over at 12:30 next Saturday. That's still early for me but I can do it.

    I'm not embarrassed by it, but I so wish I could change it. I would love to get up early in the morning just like everyone else. I would give anything to be an early bird. But for whatever reason my brain comes alive at night.

    And you know what, even if I was well I would never want to get up that early in the morning on a weekend. What for? What is so great about being up at 6:30 AM on a Saturday? What does one need, or have to do that freaking early in the morning!? Good for you, you're an early bird who chirps. Barf! It's like they are heroic in their mind.
     
  8. L'engle

    L'engle moogle

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    @Misfit Toy Yeah, it's the hero complex that gets me! Ugh.
     
  9. Rand56

    Rand56 Senior Member

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    @Misfit Toy

    If I may ask, and tell me if I'm wrong..but do you care "too much" about what other people think of you? My situation, particular years ago when I was struggling even more with a deeper depression, was a bit different than yours, but there could be some similarities. It was different in that a few close friends knew what I was going thru. I did not feel the need to let anyone else know other than my family of course. In my younger years, I always cared a lot what other people thought of me, but that changed. It changed when I started caring less, in particular starting with casual friends who I would always makes excuses to if they asked me to do something with them, and of course, I didn't feel well enough for the challenge of socializing. Well, no telling what these people were thinking when I continued making excuses, but at that point, I really didn't care what they were thinking. I was more concerned about me. To this day, I don't care what other people think of me. It's less stressful being in this mindset. I guess this also has something to do with getting older as well, but I learned years ago that caring less about what other people think of me..takes some stress off.

    Don't know if this relates at all with your situation, but just thought I'd share this about myself.
     
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  10. CantThink

    CantThink Senior Member

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    :rofl::rofl::rofl::rofl:

    Oh my.... Hahahaha that cheered me right up @L'engle
     
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  11. Misfit Toy

    Misfit Toy Senior Member

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    @Rand56 -I don't think it's that I care about what people think about me. I think what bothers me is that I have to explain myself to people that I've already explained myself to. And...I will soon vaccilate!

    And why do I have to explain myself, because they have forgotten that I don't get up early or because they assume that because they do that I should as well and I'm just tired of having to repeat it over and over.

    Or who knows, maybe it is that I do care. Vaccilating! Maybe I just want to be understood and not to have to have it be asked of me all the time. Or for people to expect me to fit into a circle when I'm a square.

    I think I do care and I don't care all in one. I know this, I've let people go for this reason. If I keep having to explain myself over and over again I just completely disengage. And when they reach out to me, I blow them off. Done.

    Also, I have to add that I want people in my life. There are no Ill friends around me, in other words in my geographical situation. These friends I've had forever and I consider them good friends, they just don't get the sleeping aspect. And I'm not going to let them go that easily.

    The one friend that I mentioned who wants to help me with jewelry, she has been there for me with my recent wrist surgery that I had. Sent me gifts has come over, took me out for a brunch one day because I wasn't getting out at all. I have to care about her because she is someone who is worthy of me caring for. So, she's not so easy to dismiss or let go of.
     
    Last edited: Mar 1, 2015
  12. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I used to be a morning person, too. I didn't feel it was superior, and I had family who were night owls (in fact they couldn't understand why I would go to bed early: they thought something was wrong with me!)... but I agree that culture in general feels this is a mark of industry or responsibility or whatever. To the point of depriving high school students of sleep because they also can't fall asleep until later.

    As a healthy person I was like, what's the difference, everyone is awake for about the same number of hours anyway, who cares which hours someone else is awake?

    I don't have hardly any real life friends left, just a few I email or text, as I am almost wholly unable to go out. But it does sometime cause tension with family, and I do have one doc who will only schedule at 8am :sleep::meh: :ill:

    @Rand56 that's a good point and something I am learning to do.
     
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  13. Rand56

    Rand56 Senior Member

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    Yeah, sounds like you can chalk this up to these people being bad listeners. I think everyone knows somebody who is like this LOL. These are the kind of people who are too concerned about what's going to come out of their own mouth next, rather than listening to what you are talking about. :bang-head:
     
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  14. CantThink

    CantThink Senior Member

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    In my house there's 2 owls and 1 lark. The owls understand the lark is the way he is due to nature and not choice, and yet the lark can't give the owls the same respect and understanding.

    It leads to A LOT of tension and arguments in my house. Not so much from me as I'm currently too sick to give a rat's behind, but between my parents as they are the opposite and my dad wants everyone else to get up early and justify their existence. My sister who doesn't live here is also an owl... So literally the only early riser in our family is my dad (ha! It's funny how self righteous he is about it when he's so outnumbered).

    The thing is, people that get up early are usually either napping later in the day or go to bed early. It's not as if they actually do more...

    So if I get up early, I'm just back in bed earlier... Occasionally I have to get up early for a medical appointment... So I noticed that I basically use my energy by early afternoon and am in bed at lunch time instead of 4 or 5 p.m. I'd rather get up later as that way I get more night sleep as I normally fall asleep some time after midnight.

    I did some research a while ago and I think it's so unfair early risers expect the later risers to get up and follow the early schedule. For healthy people, it's a set thing... Nature has set when each person is naturally more energetic and when they naturally wake up. You'd think people would cut their sick friends and relatives a little slack!

    @Misfit Toy

    Hopefully if you meet a guy he'll not be an early riser! If you find an owl, I'm sure you'll not have a problem in that respect.
     
  15. L'engle

    L'engle moogle

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    I do care what people think. :) If I meet someone I like and respect it bothers me to have to explain my behavior and have them seem doubtful. And the problem is it is not just 'jerks' it is often very reasonable people who have these set ideas. It is their set ideas for sure but still it bothers me when people see it as 'not having your act together'.

    Interestingly I do turn the lights off before 11pm so being with a nightowl isn't easy for me either. I need a long rest sequence and shutting down early doesn't guarantee sleep physiologically but does stop the continued stimulus from draining me more. Lights and talking/noise late at night hurt my head.

    I guess it doesn't matter much anyway since I can't do much with my waking hours and there would be very little shared activity in any interaction anyway. I wish I could sleep more, at least it would be restful.
     
    Last edited: Mar 1, 2015
  16. CantThink

    CantThink Senior Member

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    That is exactly it. :thumbsup:

    They believe it is a negative reflection on the late riser, and judge accordingly.

    I'm a lot less tolerant of such people now. I think Why should I justify myself... If it were the other way around and I was asking these people to come out and do productive things late at night... They'd not justify themselves... They'd just say they can't do it.
     
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  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hey, can we quote that--pretty please?

    Sushi
     
  18. Misfit Toy

    Misfit Toy Senior Member

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    it's something that bothers me about people in general is that like you just said @L'engle -they could be reasonable people but how reasonable are they if they can't think that waking up late is the way it is for some people?

    To me, that's not being reasonable or rational! I end up looking down on them. I feel that they have a flaw in that they can't see that other people aren't like them.

    I think that's really what's bothering me about this whole thing is that we're supposed to feel like we have an issue or problem because we don't get up early but I think they are flawed for feeling that that's the way it should be.
     
  19. Misfit Toy

    Misfit Toy Senior Member

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    @CantThink -I love your story about the Lark and the owls. Great story.

    Go owls!
     
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  20. CantThink

    CantThink Senior Member

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    Yes. That's how both my mum and I feel. It seems, I have no idea why, that these people cannot see the other side/point of view... They are very set and stubborn on this...

    I am not sure about your friends but I noticed that a couple of the people I know who are early risers with this point of view seem to also be very opinionated and self righteous in general. They are points scorers... Measuring everyone by these random things like work ethic and getting up early!

    In contrast, I had a friend at college who was an early riser and she'd have gotten up, had breakfast, gone to the gym... while my friend and I would have just staggered to breakfast and be sitting there groggily nursing a coffee. Yet, our friend never criticised us or expected us to get up early. She'd be in bed at 9 p.m., yet we also didn't expect her to stay up late... She was a reasonable person without the self righteous aspect.
     

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