Er, quote it on what? I'm a little tired and guarded at the moment.
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Getting up late and the strain it causes relationships.
- Thread starter Misfit Toy
- Start date
Er, quote it on what? I'm a little tired and guarded at the moment.
Tammy
Senior Member
- Messages
- 2,185
- Location
- New Mexico
I totally get the part of having to explain again and again about my limitations..............there is only one person I know that I do not have to do that with.........that's pretty sad!
Sushi
Moderation Resource Albuquerque
- Messages
- 19,935
- Location
- Albuquerque
Good to be guarded on the internet! It is such a good phrase, I wanted to share it with some friends in private emails as I am also a late riser and I have other patient friends who are too. A little humor says it well.
Sushi
Misfit Toy
Senior Member
- Messages
- 4,178
- Location
- USA
@CantThink -you and I should have been roommates in college, we would've got along great! The only thing is, I don't drink coffee. 
That's nice that you had a roommate that understood you and you both understood her. It's very rare. And it's what's needed in this world.
A few years ago, I had a friend that was 20 years older than me and her husband was a psychiatrist. She was extremely well educated and very smart and also very open-minded except for when It came to illness. The two of us loved books. We would exchange information on what books we read that we're good to read.
We got together for lunch one day and I was telling her about me being perimenopausal. With all of the education she had, the fact that her husband is a psychiatrist, and the fact that she had once been a speech pathologist, she made this comment that surprised me.
She said to me as she laughed "I've never had any problems with menopause, what IS perimenopause! I have no clue."
With all the reading that she does and I mean she reads like five books a week, I knew she knew what hormonal disruption was.
The point I'm trying to make is that she reveled in the fact that she had never experienced it and she also reveled in the fact that she would wake up at five in the morning and go to the gym.
She felt better of herself because she did these things that in her mind made her an exemplary person.
Whenever I would tell her I got up at noon she would say "oh, well I woke up 5 AM and then she would declare all the 500 things that she had done after she woke up like it was some brilliant parade.
Send in the clowns!
We are no longer friends anymore and she's very upset about this, but I just couldn't deal with the self righteousness that she had going on.
That's nice that you had a roommate that understood you and you both understood her. It's very rare. And it's what's needed in this world.
A few years ago, I had a friend that was 20 years older than me and her husband was a psychiatrist. She was extremely well educated and very smart and also very open-minded except for when It came to illness. The two of us loved books. We would exchange information on what books we read that we're good to read.
We got together for lunch one day and I was telling her about me being perimenopausal. With all of the education she had, the fact that her husband is a psychiatrist, and the fact that she had once been a speech pathologist, she made this comment that surprised me.
She said to me as she laughed "I've never had any problems with menopause, what IS perimenopause! I have no clue."
With all the reading that she does and I mean she reads like five books a week, I knew she knew what hormonal disruption was.
The point I'm trying to make is that she reveled in the fact that she had never experienced it and she also reveled in the fact that she would wake up at five in the morning and go to the gym.
She felt better of herself because she did these things that in her mind made her an exemplary person.
Whenever I would tell her I got up at noon she would say "oh, well I woke up 5 AM and then she would declare all the 500 things that she had done after she woke up like it was some brilliant parade.
Send in the clowns!
We are no longer friends anymore and she's very upset about this, but I just couldn't deal with the self righteousness that she had going on.
Private messages, sure!
Misfit Toy
Senior Member
- Messages
- 4,178
- Location
- USA
@L'engle -Sushi is right!
That quote of yours is hilarious. I just went back and read it and I'm in hysterics. Reading books to blind dolphins and shoveling coal! Your CFS, on a cognitive level, is pretty good today because that's really an amazing quote.
So funny!
I keep picturing dolphins jumping in the sea with glazed over white eyes while books are being read to them! I don't know, maybe it's just the Percocet but that was a riot!!
Cheers!!!
That quote of yours is hilarious. I just went back and read it and I'm in hysterics. Reading books to blind dolphins and shoveling coal! Your CFS, on a cognitive level, is pretty good today because that's really an amazing quote.
So funny!
I keep picturing dolphins jumping in the sea with glazed over white eyes while books are being read to them! I don't know, maybe it's just the Percocet but that was a riot!!
Cheers!!!
When early risers pride themselves on being early risers it's usually because they haven't got much else to pride themselves on. It's a narrow view closely tied to a puritanical morality that invests with moral content certain mundane routines and habits that are in fact utterly devoid of moral content.
I know a family of early risers who beam with pride when they tell you (again!) that they get up at six, but are careful not to make much mention of their other habit of having a nap in the afternoon for an hour or two. And don't ever try asking them to stay up beyond ten; good grief: decent people don't do that.
Let's face it, there's a bigger issue here for PWME. Even if we leave aside the mayhem that has been done to our body clocks and the difficulty this brings with it of slavishly adhering to "normal" hours, and we leave aside also our need for far more rest than healthy people anyway, what on earth does it matter what time we get up? Our bodies are in a horrendously dysregulated and abnormal state, far more abnormal than any abnormality inherent in getting up a bit late. And whether we get up early or late, what practical difference does it make to our day anyway, when our window of activity is so short? Is getting up at a "normal" hour suddenly going to give us oodles of energy and have us back working full time again?
"Early to bed, early to rise makes a man healthy, wealthy and wise", the old proverb ran. If only the first of these three were true, I'd be the earliest riser on the planet.
I know a family of early risers who beam with pride when they tell you (again!) that they get up at six, but are careful not to make much mention of their other habit of having a nap in the afternoon for an hour or two. And don't ever try asking them to stay up beyond ten; good grief: decent people don't do that.
Let's face it, there's a bigger issue here for PWME. Even if we leave aside the mayhem that has been done to our body clocks and the difficulty this brings with it of slavishly adhering to "normal" hours, and we leave aside also our need for far more rest than healthy people anyway, what on earth does it matter what time we get up? Our bodies are in a horrendously dysregulated and abnormal state, far more abnormal than any abnormality inherent in getting up a bit late. And whether we get up early or late, what practical difference does it make to our day anyway, when our window of activity is so short? Is getting up at a "normal" hour suddenly going to give us oodles of energy and have us back working full time again?
"Early to bed, early to rise makes a man healthy, wealthy and wise", the old proverb ran. If only the first of these three were true, I'd be the earliest riser on the planet.
@Misfit Toy Strangely I get funnier when I am more tired and moody! I think my mind stops filtering out the sarcastic stuff and just lets it go
alex3619
Senior Member
- Messages
- 13,810
- Location
- Logan, Queensland, Australia
I have noticed this in online support groups. As we get tired we get zanier and zanier, and humour becomes the basis for everything.@Misfit Toy Strangely I get funnier when I am more tired and moody! I think my mind stops filtering out the sarcastic stuff and just lets it go
I gave up explaining things to people some time ago unless they have a genuine need to know.
I started out with bad insomnia, then a delayed circadian pattern making me a serious owl, and now sometimes it shatters and I either don't sleep at all or can only have an occasional nap. Its other people's problem if they cannot understand this once I explain it to them.
Gingergrrl
Senior Member
- Messages
- 16,171
Great thread and I now find it incredibly difficult to relate to healthy people as we have nothing in common (except for my husband and family.)
My three best friends in the world all have chronic health problems (epilepsy, lupus, and hydrocephalus/chronic headaches) and all are completely open minded and accepting of my situation and all knew me lifelong before I was ill.
Those who cannot accept my limitations or forced life styles changes are no longer my friends. I woke up every day at 6:30 am for 16 years for work before I was ill and would do it again in a heartbeat if I was well but it is impossible now and I accept that.
There will always be judges and haters and I don't waste my precious energy on them any more.
My three best friends in the world all have chronic health problems (epilepsy, lupus, and hydrocephalus/chronic headaches) and all are completely open minded and accepting of my situation and all knew me lifelong before I was ill.
Those who cannot accept my limitations or forced life styles changes are no longer my friends. I woke up every day at 6:30 am for 16 years for work before I was ill and would do it again in a heartbeat if I was well but it is impossible now and I accept that.
There will always be judges and haters and I don't waste my precious energy on them any more.
Martial
Senior Member
- Messages
- 1,409
- Location
- Ventura, CA
I like the humor in this thread lol, the only thing I will add personally. There is just no way for someone to understand the effect illness has on your sleep, unless they have it themselves they don't understand how much crummier; in turn more ill it may make you feel to mess with the sleeping schedule your clock is used to. Repercussions for lack of better words.
Most people think if I get up earlier I can just try and make myself go to bed earlier and get back to a better sleeping schedule. This makes sense if you are perfectly healthy and everything is well. If you are sick though it can really throw your system off and make everything flare worse. You definitely have a good attitude and this is a great place to vent. I hope you can resolve some of these issues and make an understanding and peace with those friends soon!
Most people think if I get up earlier I can just try and make myself go to bed earlier and get back to a better sleeping schedule. This makes sense if you are perfectly healthy and everything is well. If you are sick though it can really throw your system off and make everything flare worse. You definitely have a good attitude and this is a great place to vent. I hope you can resolve some of these issues and make an understanding and peace with those friends soon!
CantThink
Senior Member
- Messages
- 800
- Location
- England, UK
The point I'm trying to make is that she reveled in the fact that she had never experienced it and she also reveled in the fact that she would wake up at five in the morning and go to the gym.
She felt better of herself because she did these things that in her mind made her an exemplary person.
Whenever I would tell her I got up at noon she would say "oh, well I woke up 5 AM and then she would declare all the 500 things that she had done after she woke up like it was some brilliant parade.
Send in the clowns!
Argh! It must be a certain type of person!! One of the people I mentioned earlier is like that - when my mum had a hysterectomy and told her, she said: 'oh no, we don't do that [in our house]' (as if having a hysterectomy was some kind of option - in my mum's case it wasn't - and that she'd definitely never need one).
This person is someone who makes herself feel better through schadenfreude. I can't be around her myself as she thinks I choose to not do things (like work and live in my own place), and I feel on the defensive all the time.
Also that whole 'listing what they've done in the time you've been asleep' is what my dad does. In the past we've (mum and I) found ourselves entering into some kind of competition listing everything we've done, as if to prove our right to existence. It's ridiculous!
- Messages
- 2,566
- Location
- US
Schedule has been a problem for me in relationships. It's isolating like some of our other symptoms.
Like Ginger said I don't have anything in common with healthy people
It's not as bad with people who drag themselves out of bed just in time for work or school. They are the kind who want to sleep until 10 on weekends. While 10 am is way too early for us, at least it's not a complete opposite.
It's worse with the early birds who are up by 6 am. A lot of them don't want to start something new in the afternoon. They're half done with their day at lunch.
One thing I did sometimes was wake up with much less sleep for these people. Then nap in the afternoon. Some of these early birds would nap too. It was a disruption but I didn't see another way sometimes.
Unless they were also a person who slept less hours. Then they were still up at night and could have plenty of hours of overlap with my natural awake times.
If possible, make friends with people who sleep less or aren't early birds. For your existing friends, I would feel free to lie because they're not accepting the truth. I would tell them I was up all night with a stomach ache or something that they might understand.
Like Ginger said I don't have anything in common with healthy people
It's not as bad with people who drag themselves out of bed just in time for work or school. They are the kind who want to sleep until 10 on weekends. While 10 am is way too early for us, at least it's not a complete opposite.
It's worse with the early birds who are up by 6 am. A lot of them don't want to start something new in the afternoon. They're half done with their day at lunch.
One thing I did sometimes was wake up with much less sleep for these people. Then nap in the afternoon. Some of these early birds would nap too. It was a disruption but I didn't see another way sometimes.
Unless they were also a person who slept less hours. Then they were still up at night and could have plenty of hours of overlap with my natural awake times.
If possible, make friends with people who sleep less or aren't early birds. For your existing friends, I would feel free to lie because they're not accepting the truth. I would tell them I was up all night with a stomach ache or something that they might understand.
CantThink
Senior Member
- Messages
- 800
- Location
- England, UK
I have thought about this a lot over the years, but more so recently... I feel this too (very strongly). I don't know how to deal with it - it seems impossible to bridge the gap without always being the one to compromise and let things go. When I have done that, I've been the one to then be stuck in bed for weeks because I fitted their schedule and way of life, and not mine. So it seems pretty impossible.
SDSue
Southeast
- Messages
- 1,066
I just tell 'em I usually can't get out of the bathroom til after noon. That seems to do the trick. People seem more than willing to mess with my sleep, but they sure don't want poop in their cars! Of course, I'm not sure which is more embarrassing: sleeping til noon or pooping til noon!
Misfit Toy
Senior Member
- Messages
- 4,178
- Location
- USA
Lol!!!!
Am I being oversensitive? My friend who want to do something today just texted 'hey sleepyhead' at 10:30AM. I had a wretched night and was awake till after 5am due to magnesium problems so this is kind of hitting me the wrong way. Just not what I needed. What I needed was 4 more hours of sleep, not being teased about my need for sleep.
*GG*
senior member
- Messages
- 6,389
- Location
- Concord, NH
Am I being oversensitive? My friend who want to do something today just texted 'hey sleepyhead' at 10:30AM. I had a wretched night and was awake till after 5am due to magnesium problems so this is kind of hitting me the wrong way. Just not what I needed. What I needed was 4 more hours of sleep, not being teased about my need for sleep.
Yeah, your probably being sensitive. Maybe you could use it as an opportunity to educate/relate? How do they feel when sleep deprived?! Do they realize that this is common with sufferersm (opportunity to educate)?
GG
Misfit Toy
Senior Member
- Messages
- 4,178
- Location
- USA
I was thinking to myself....Oh, @L'engle brought up such a great topic and then I saw...it was my original post! LOL....I complain about this all of the time.
I slept awful or didn't sleep at all last night due to a migraine. I get it. I slept all day and will go back in a bit.
I have a friend that keeps asking me to lunch. I have explained to her that 1 pm is sometimes when life begins for me. If 3 pm would be considered lunch, I am in. I decided to ask her to dinner. No response.
I have decided I am not going to fit into everyone's world anymore; meaning, I am tired of bending, explaining and with no understanding. If this woman can't do dinner, I guess that's it for us. What is wrong with dinner? She has a husband and a daughter that is 30 years old. Her husband is away a lot for work. What is the problem...why never dinner?
Everyone always wants to do lunch. I remember in my 20's, everyone always wanted to do dinner and drinks. Those days are over.
No matter how many times I explain to my friends with children, I can't do breakfast at 8:30 am (because they have kids and some of them little and in school til 11:30 am)...they ask me to breakfast. Why? Their kids are in school, which equals free time for them. i understand their plight, but I really can't get up for an 8:30 am breakfast...not happening.
I have decided to explain to all of my friends----"Listen, do you want me to walk away from this experience having had a good time with you? Then stop pressuring me to do lunch, or breakfast unless of course lunch can be at 2 or 3pm. You know why? I will be in a brain fog and will be thinking the whole time I am with you, I can't wait until this is over so I can go home and take a nap or go back to bed. In other words, what is supposed to be a good time will be horrible for me. Do you want that? Not to mention, anything you will say I will completely forget due to exhaustion." BAM.
That ought to do it!
The lever drops again....GONG.
Again, I am tired of bending for others, they need to bend for me. I am always trying to fit into their world, not the other way around.
I slept awful or didn't sleep at all last night due to a migraine. I get it. I slept all day and will go back in a bit.
I have a friend that keeps asking me to lunch. I have explained to her that 1 pm is sometimes when life begins for me. If 3 pm would be considered lunch, I am in. I decided to ask her to dinner. No response.
I have decided I am not going to fit into everyone's world anymore; meaning, I am tired of bending, explaining and with no understanding. If this woman can't do dinner, I guess that's it for us. What is wrong with dinner? She has a husband and a daughter that is 30 years old. Her husband is away a lot for work. What is the problem...why never dinner?
Everyone always wants to do lunch. I remember in my 20's, everyone always wanted to do dinner and drinks. Those days are over.
No matter how many times I explain to my friends with children, I can't do breakfast at 8:30 am (because they have kids and some of them little and in school til 11:30 am)...they ask me to breakfast. Why? Their kids are in school, which equals free time for them. i understand their plight, but I really can't get up for an 8:30 am breakfast...not happening.
I have decided to explain to all of my friends----"Listen, do you want me to walk away from this experience having had a good time with you? Then stop pressuring me to do lunch, or breakfast unless of course lunch can be at 2 or 3pm. You know why? I will be in a brain fog and will be thinking the whole time I am with you, I can't wait until this is over so I can go home and take a nap or go back to bed. In other words, what is supposed to be a good time will be horrible for me. Do you want that? Not to mention, anything you will say I will completely forget due to exhaustion." BAM.
That ought to do it!
The lever drops again....GONG.
Again, I am tired of bending for others, they need to bend for me. I am always trying to fit into their world, not the other way around.