Getting up late and the strain it causes relationships.

[L'engle]

@Misfit Toy I think my friend works in a place where people tease each other a bit without meaning it. I should probably leave my phone off when I'm not well rested since I don't react well to a lot of the things people say without thinking when I haven't slept enough. Fortunately my friend does seem to be pretty understanding and was even comprehending the details that I relayed. She has a lot of her own problems and deals with judgment as well. So it turned out OK.

Your friend who really can't get it sounds like she is not even trying. That's where I draw the line too.

 

[Misfit Toy]

I thought what your friend said was cute. @L'engle. I never have my phone in the same room when I'm sleeping. I always turn it on mute. I think your friend was just joshing with you.

My friends mean well and I care about them and I always have to remind myself that I'm the oddball. That most people are not going to understand me, but sometimes it gets really hard.

It's not their fault yet at the same time I just wish more of them would listen.

 

[L'engle]

@Misfit Toy I think so too. I haven't known her very long. She seems pretty sweet. I had a bad experience with someone a few months ago so I have been kind of defensive since then!

 

[Eeyore]

One of the real curses of ME is that no one understands you who doesn't have ME. Even ME docs don't really understand. They try, and I appreciate that, but they don't get it.

My family is very supportive in general and does not question my illness or its effects on my life. However, they still say stuff sometimes that just makes me realize how alone we are and how they just do not get it, and can't, no matter how hard they try or how much we explain.

One area I've found impossible to explain to others is how we feel about our treatment by doctors, and just how disturbing this is for us. No one else gets what it's like to have an illness with this stigma. There are other unfairly stigmatized illnesses for sure (a lot of mental illnesses, STD's, etc.) but nothing quite like ME.

I've never been able to function in the morning. I make all my doctor appointments, if at all possible, for the afternoon. I don't know how people are able to get up at 5-6 am and function all day. I've never been able to do that - even when I was not yet sick - but since becoming ill it's now hard for me to function if I have to wake up much before 9:30-10. When I feel better, it can be earlier, and when worse, it can be later.

It's really annoying that our society places such virtue on being up early. I think it's a puritan thing, and may go back to the days when there was no artificial lighting, so if you wanted to get anything done, you had to get up early to have light. there is definitely a general stereotype in society that people who get up late are lazy. My mind is far more productive and creative at 2 or 3 in the morning, but employers aren't too interested in that and social acquaintances are not generally up then either. Stores are closed. You can't get much done outside the home.

I wake up every morning feeling lousy, and then progressively feel better as the day goes on most days. I have no appetitie when I wake up and can't look at food for several hours. I make constant bathroom trips in the morning until everything settles down. Then by afternoon I might look/feel half human.

 

[*GG*]

Can so relate with this, think I found someone who understands though, and is willing to be by my side!

GG

 

[redaxe]

Have you tried taking modafinil in the morning.

What you can do is leave a pack of modafinil/provigil on your bedside table with a glass of water. Set your alarm a few hours earlier than when you typically wake up - so if you wake up at noon set your alarm for 8-9am (you'll feel like a zombie), take the modafinil (100-200mg) and fall back to sleep. Hopefully by 10:00-11ish you'll feel more awake and able to get up a bit earlier.

This can help push back the tendency to sleep in during the day.

 

[lemonworld]

This thread is golden! And brings up a lot of frustration in me i didn't even realize I had lol. This thought that people that wake up early are better than those who don't is so disgusting and unnecessary.

I have gotten it so much from my family over the years, especially in the beginning of the illness, the sleepy years, i was still trying to go to school (aka being forced to school) so I woke up at 6 am the days I were able to. And then I would seriously crash in the weekends, and my familiy would come into my room and shout "time to wake up" in the weekends, when I had no plans anyways, just because they saw it as lazy to sleep for so long. it's like people think it's a sin to sleep. or that if you just wake up early you will somehow be better?

I also have gotten a lot of shaming because i was "up so late". Often I can't sleep until the early hours in the morning, even though it was not by choice. I would still force my self to go to school, even though I wouldn't always get enough sleep, sometimes just two hours. I used to go into the bathrooms and sleep, put the toilet seat down, rest feet on the toilet door and close my eyes.

One day I was so incredibly sick and struggled to think and I had to have a presentation for my class, and I didn't have any controll of what I was saying. I don't think I said a single sentence that made sense. And I felt so humiliated about it, and also scared that this was happening to me. I told my father about it when i got home, because i was so sad and scared, it was the beginning of the illness and i wasn't used to it. And he said "well, it might be your fault, as you stay up so late all the time"

I try not to hold on to any anger agaist the ignorance I've gotten from people (tryyy but sometimes it just comes back when I realize how unfair it all is), as I think people don't intend to be so unfair. i think it's just the culture that is messed up. that we don't learn how to relate to people that are having a hard time, it's all about pushing through it, "being sick is for weak people.."

 

[lemonworld]

@Misfit Toy Thank you for making these great topics! I love that you bring up these different challenges about the illness that maybe aren't talked about so often. And I love that you say it as it is. It gives me so much strength and motivation to know that other people face similar challenges. And nothing feels better than to went about it with people that understand

 

[Aurator]

Iris Murdoch put it most succinctly in her novel Nuns and Soldiers:
"There is a gulf fixed between those who can sleep and those who cannot. It is one of the great divisions of the human race."

 

[*GG*]

This thread is golden! And brings up a lot of frustration in me i didn't even realize I had lol. This thought that people that wake up early are better than those who don't is so disgusting and unnecessary.

I have gotten it so much from my family over the years, especially in the beginning of the illness, the sleepy years, i was still trying to go to school (aka being forced to school) so I woke up at 6 am the days I were able to. And then I would seriously crash in the weekends, and my familiy would come into my room and shout "time to wake up" in the weekends, when I had no plans anyways, just because they saw it as lazy to sleep for so long. it's like people think it's a sin to sleep. or that if you just wake up early you will somehow be better?

I also have gotten a lot of shaming because i was "up so late". Often I can't sleep until the early hours in the morning, even though it was not by choice. I would still force my self to go to school, even though I wouldn't always get enough sleep, sometimes just two hours. I used to go into the bathrooms and sleep, put the toilet seat down, rest feet on the toilet door and close my eyes.

One day I was so incredibly sick and struggled to think and I had to have a presentation for my class, and I didn't have any controll of what I was saying. I don't think I said a single sentence that made sense. And I felt so humiliated about it, and also scared that this was happening to me. I told my father about it when i got home, because i was so sad and scared, it was the beginning of the illness and i wasn't used to it. And he said "well, it might be your fault, as you stay up so late all the time"

I try not to hold on to any anger agaist the ignorance I've gotten from people (tryyy but sometimes it just comes back when I realize how unfair it all is), as I think people don't intend to be so unfair. i think it's just the culture that is messed up. that we don't learn how to relate to people that are having a hard time, it's all about pushing through it, "being sick is for weak people.."

This reminds me of my working years, hard to hold a job with this illness, harder when you don't have much flexibility with hours! My dad doesn't get this either, I'm back with my parents until my disability gets sorted out! Like I want to live with Negative Nancy at the age of 45!

Yeah, like that was part of my plan in life, get educated, land a good job, and then move in with parents because I am not really sick. LOL

GG

 

[L'engle]

I know people mean well but I just got another 'don't stay up too late!' helpful hint and it's just kind of... ugh. And I don't even feel like explaining that it wouldn't matter if I turned the computer and everything off right now, I will not sleep until these physiological processes wind down and I have no control over that right now.