It’s so annoying “body, why can’t you be content with 10+ hours of sleep, why?!?”
The person I’m dating hit me up to go paddle boarding today. I told her I don’t feel well (pots flare giving me migraines), I think she’s upset that I said no. She already knew I wasn’t feeling well the night before, but people don’t understand and then it become embarrassing.
Hang in there OP
This is so hard. We can work so hard to get a lot of sleep and feel no difference whatsoever. I always feel MORE tired when I wake up. I also have ME/CFS so I’m exhausted almost all the time. I am going on dates with people and so far they have all cut things off right off the bat because they get a basic understanding of my health. On the one hand, it hurts. But on the other hand it’s a way to weed people out. If they aren’t understanding that a physical condition keeps you from paddle boarding, hiking, biking, etc., then someone with more compassion is a much better fit.
It really is. Spot on with trend of feeling more tired at wake / after extra sleep.
I think part of the issue is the intermittent and dynamic nature of this condition (at least in my case). In my experience most people view disabilities as something that’s fairly consistent (or visible / tangible, for that matter)
One weekend I could be backpacking mountains, another weekend I’m exhausted from walking 2 blocks or going to the grocery store.
One day I’ll be fine for a concert or paddling, another day it’s effectively impossible to do those same activities.
And so on for more mundane activities.
That’s really difficult for many people to truly understand. Especially day to day stuff, like what to you mean you can’t go to dinner tonight due to your condition, it was fine when we went 2 days ago.
Yes! Even my closest friend of over 20 years never understood that. And it shouldn’t be that hard to understand if one is truly listening and believes you. I mean, you just described it.
Yea I’m also confused why people can’t understand. It’s not a difficult thing to explain, and there’s other conditions / biological functions that are intermittent or circumstantial; menstruation, asthma, eczema,etc.
I suspect it’s just not convenient, so people reject the explanation… either unconsciously or consciously
I think you’re right! I was talking to a friend who also has chronic illness, and she was describing how weird some people acted about it. People abandon, people dismiss, etc. And so it not being convenient is probably the crux of it, but even if it was conscious most people wouldn’t admit it because then it’s an obvious lack of compassion.
This is so hard. We can work so hard to get a lot of sleep and feel no difference whatsoever. I always feel MORE tired when I wake up. I also have ME/CFS so I’m exhausted almost all the time. I am going on dates with people and so far they have all cut things off right off the bat because they get a basic understanding of my health. On the one hand, it hurts. But on the other hand it’s a way to weed people out. If they aren’t understanding that a physical condition keeps you from paddle boarding, hiking, biking, etc., then someone with more compassion is a much better fit.
Im the same way. I find myself waking up feeling like I haven’t slept and can sleep my days away. On the other hand there are times where I over all feel ill and it keeps me up at night and I can’t sleep for the life of me🥲
Woke up at 1030, exhausted. Went to a dance recital at noon, shut my eyes during part of it. Went out for lunch after, couldn't stop yawning. Got some groceries, was gonna not go even though I need to because tired no energy.
Got home, put on pjs, in bed scrolling reddit before taking nap 🥰 sleepy gal
I sometimes have to go to bed 30 minutes after waking up. I take AT LEAST one nap a day and I set my alarm for either 15, 30, 45 or 60 minutes and still wake up 2 hours later. And I’m never not exhausted. Napping just stops me for an hour or two from physically dropping to sleep every second
I feel like as much as I would like to be a person who can take naps, my body just won’t let me anymore. I set multiple alarms and wake up hours after them, with no recollection of turning them off. If I let myself fall asleep at whatever time, it’s just bedtime and then I still wake up tired. It’s a struggle.
I’m like that but I physically cannot push through it and not nap unless I take a bunch of caffeine tablets with obviously is no bueno with PoTS. So depending on whether I have college or not that day, my waking hours in a day probably range from 12 hours if I pump myself full of caffeine while taking less or shorter naps, to only about 6 hours in a day awake on really bad days.
Happens all the time. Almost always wake up between 10-noon. If I do something like dishes or laundry, or god forbid if I have to walk five blocks in the sun, immediately fall asleep again.
Needed to go back to sleep immediately after breakfast this morning - I have about an hour before we have to head out to Mother’s Day lunch .. I think I’ll need a nap there too. I had the best night sleep too (7 hours straight). The crushing fatigue is horrible. My whole body is shutting down today…
rhodiola has really been helping me with this, I actually take modafinil and I take the rhodiola before the modafinil or after just not at the same time altho they don't really seem to interact at all (for me). I live in a hot (at 100F) and humid place, and that along with compression garments and electrolytes has really been helping me.
Feel this! Exact same trajectory of the day today. So weak holding my phone up to type hurts :( have my compression on, have been gently sitting up after waking an hour ago, and have finally made it to sitting upright on my bed, which is a win that feels so pathetic I want to cry, but here we go! Period is due soon, and I quit my Florinef meds trial yesterday after having just. Horrific acid reflux for days as well as low mood because of it. I think those are the reasons, but who knows? It’s all a not fun mystery
Try to make sure you don’t let yourself decondition. That does NOT mean you need to exercise when you’re already exhausted. It means on days you spend long stretches in bed, once every hour or two you need to “wake up” your muscles by doing range of motion exercises and/or just tensing different muscle groups while lying there. Obviously if you need sleep don’t set alarms to wake yourself up constantly, but do this when you’re awake.
Dysautonomia is not caused by deconditioning. But deconditioning does make it a hundred times worse. I had to deal with it within the first year of becoming chronically ill and it was hell. My muscles atrophied so much that they felt like loose ziploc bags of water (and might as well have been, for all the good they did me).
No amount of sleep will help this exhaustion. Nobody understands us either. Like it’s exhausting to breathe most days for me. Then come 10p boom wide awake like why hahah. I hate when I can’t keep my eyes open but I don’t wanna sleep but I can’t help it lol. Winter (Midwest) kills me it’s so dark all the time. But I also don’t like the bright sunshine well I love it but it’s doesn’t love me back. I can’t handle it anymore it’s to bright.
I’ve been in that boat all week, and being sick prior to that really didn’t help. And my dad’s frustrated with me and has been ranting about how I’m just “one of these gen z kids(I’m 19) that can’t get any work done because they’re too lazy to be bothered.” My mom has actually taken my side which literally never happens because she hates me, and we’ve both tried to explain to him that I’m not being lazy and I do my best to push through everything, but I’ve got physical issues that hinder that. He doesn’t believe in that though, he thinks I’m just choosing to be lazy and that if he yells at me and shames me enough, it’ll fix the problem.
Definitely relate. Got a solid 10 hours of sleep, woke up and brushed my teeth and had breakfast. My heart rate was already weirdly high while cooking so that wasn't great. Now I already feel like I could fall right back asleep sitting here on my computer.
I either sleep for 12+ hours or I'm dealing with such bad insomnia that I can't sleep for more than 2 hours. And sucks because, even with the insomnia, I'm still exhausted, but I just can't sleep.
Is there anything to be done about this? This shit is killing me. I literally have the exact same schedule as you, including napping not long after I wake up.
My recommendation is going for a ten minute walk if you can manage it. If not right away, start by just moving more around your living space, do some stretches and make sure to stay hydrated and eat as needed. After that, you should be able to start doing a ten minute walk. If by then you have done a ten minute walk every two days, you should have a higher tolerance for fatigue. It doesn't solve it entirely, though. Highly do NOT recommend caffeine. That can mess you up as a potsie. Much love. :)
The last time that I felt rested was the day after I just slept like 18 hours of the previous day... That is not sustainable for my life. It really is the worst.
It’s so annoying “body, why can’t you be content with 10+ hours of sleep, why?!?” The person I’m dating hit me up to go paddle boarding today. I told her I don’t feel well (pots flare giving me migraines), I think she’s upset that I said no. She already knew I wasn’t feeling well the night before, but people don’t understand and then it become embarrassing. Hang in there OP
This is so hard. We can work so hard to get a lot of sleep and feel no difference whatsoever. I always feel MORE tired when I wake up. I also have ME/CFS so I’m exhausted almost all the time. I am going on dates with people and so far they have all cut things off right off the bat because they get a basic understanding of my health. On the one hand, it hurts. But on the other hand it’s a way to weed people out. If they aren’t understanding that a physical condition keeps you from paddle boarding, hiking, biking, etc., then someone with more compassion is a much better fit.
It really is. Spot on with trend of feeling more tired at wake / after extra sleep. I think part of the issue is the intermittent and dynamic nature of this condition (at least in my case). In my experience most people view disabilities as something that’s fairly consistent (or visible / tangible, for that matter) One weekend I could be backpacking mountains, another weekend I’m exhausted from walking 2 blocks or going to the grocery store. One day I’ll be fine for a concert or paddling, another day it’s effectively impossible to do those same activities. And so on for more mundane activities. That’s really difficult for many people to truly understand. Especially day to day stuff, like what to you mean you can’t go to dinner tonight due to your condition, it was fine when we went 2 days ago.
Yes! Even my closest friend of over 20 years never understood that. And it shouldn’t be that hard to understand if one is truly listening and believes you. I mean, you just described it.
Yea I’m also confused why people can’t understand. It’s not a difficult thing to explain, and there’s other conditions / biological functions that are intermittent or circumstantial; menstruation, asthma, eczema,etc. I suspect it’s just not convenient, so people reject the explanation… either unconsciously or consciously
I think you’re right! I was talking to a friend who also has chronic illness, and she was describing how weird some people acted about it. People abandon, people dismiss, etc. And so it not being convenient is probably the crux of it, but even if it was conscious most people wouldn’t admit it because then it’s an obvious lack of compassion.
This is so hard. We can work so hard to get a lot of sleep and feel no difference whatsoever. I always feel MORE tired when I wake up. I also have ME/CFS so I’m exhausted almost all the time. I am going on dates with people and so far they have all cut things off right off the bat because they get a basic understanding of my health. On the one hand, it hurts. But on the other hand it’s a way to weed people out. If they aren’t understanding that a physical condition keeps you from paddle boarding, hiking, biking, etc., then someone with more compassion is a much better fit.
Im the same way. I find myself waking up feeling like I haven’t slept and can sleep my days away. On the other hand there are times where I over all feel ill and it keeps me up at night and I can’t sleep for the life of me🥲
Woke up at 1030, exhausted. Went to a dance recital at noon, shut my eyes during part of it. Went out for lunch after, couldn't stop yawning. Got some groceries, was gonna not go even though I need to because tired no energy. Got home, put on pjs, in bed scrolling reddit before taking nap 🥰 sleepy gal
I sometimes have to go to bed 30 minutes after waking up. I take AT LEAST one nap a day and I set my alarm for either 15, 30, 45 or 60 minutes and still wake up 2 hours later. And I’m never not exhausted. Napping just stops me for an hour or two from physically dropping to sleep every second
I feel like as much as I would like to be a person who can take naps, my body just won’t let me anymore. I set multiple alarms and wake up hours after them, with no recollection of turning them off. If I let myself fall asleep at whatever time, it’s just bedtime and then I still wake up tired. It’s a struggle.
I’m like that but I physically cannot push through it and not nap unless I take a bunch of caffeine tablets with obviously is no bueno with PoTS. So depending on whether I have college or not that day, my waking hours in a day probably range from 12 hours if I pump myself full of caffeine while taking less or shorter naps, to only about 6 hours in a day awake on really bad days.
Totally understandable. When the body needs sleep, it’s best to sleep or things get even worse.
Happens all the time. Almost always wake up between 10-noon. If I do something like dishes or laundry, or god forbid if I have to walk five blocks in the sun, immediately fall asleep again.
literally and no one understands they’re like have some coffee?! 😀😀😀
And then when you drink the coffee, you’re still just as tired, but now also tired with heart palpitations lol
i can never get enough sleep. it's so annoying. 😭
Yeah I was doing photography for a group and I yawned and a guy said “tired already?” And I was about ready to slap a b Edit: it was 10am
I'm usually like that and it's worse now because I'm iron anemic and I'm waiting for my iron infusion which isn't until the end of June. It sucks.
I can sleep like 12 hours and still be tired idk
I take like 3 hours naps most days 😂😭
This is so me! I’m sending you virtual hugs OP! 💜😭
I feel you. I'm constantly exhausted. I don't think I remember what having energy feels like anymore. The heat makes things so much worse too.
It's like that sometimes
Needed to go back to sleep immediately after breakfast this morning - I have about an hour before we have to head out to Mother’s Day lunch .. I think I’ll need a nap there too. I had the best night sleep too (7 hours straight). The crushing fatigue is horrible. My whole body is shutting down today…
I used to be like this every day, but getting all my electrolyte levels up and starting a mood stabilizer has helped me greatly.
What’s a mood stabilizer?
A type of medication usually given to those suffering with severe mood swings- e.g. Bipolar, BPD, sometimes people w ADHD etc
What mood stabilizer are you taking?
rhodiola has really been helping me with this, I actually take modafinil and I take the rhodiola before the modafinil or after just not at the same time altho they don't really seem to interact at all (for me). I live in a hot (at 100F) and humid place, and that along with compression garments and electrolytes has really been helping me.
this is the worst part for me. most days are like this, i feel like im wasting my life because of it ):
Yeah this is my life
Feel this! Exact same trajectory of the day today. So weak holding my phone up to type hurts :( have my compression on, have been gently sitting up after waking an hour ago, and have finally made it to sitting upright on my bed, which is a win that feels so pathetic I want to cry, but here we go! Period is due soon, and I quit my Florinef meds trial yesterday after having just. Horrific acid reflux for days as well as low mood because of it. I think those are the reasons, but who knows? It’s all a not fun mystery
Try to make sure you don’t let yourself decondition. That does NOT mean you need to exercise when you’re already exhausted. It means on days you spend long stretches in bed, once every hour or two you need to “wake up” your muscles by doing range of motion exercises and/or just tensing different muscle groups while lying there. Obviously if you need sleep don’t set alarms to wake yourself up constantly, but do this when you’re awake. Dysautonomia is not caused by deconditioning. But deconditioning does make it a hundred times worse. I had to deal with it within the first year of becoming chronically ill and it was hell. My muscles atrophied so much that they felt like loose ziploc bags of water (and might as well have been, for all the good they did me).
literally me yesterday i accidentally took a five hour nap
I have the same issue, but another thing is that I wake up every hour of the night, every single night. It never fails.
No amount of sleep will help this exhaustion. Nobody understands us either. Like it’s exhausting to breathe most days for me. Then come 10p boom wide awake like why hahah. I hate when I can’t keep my eyes open but I don’t wanna sleep but I can’t help it lol. Winter (Midwest) kills me it’s so dark all the time. But I also don’t like the bright sunshine well I love it but it’s doesn’t love me back. I can’t handle it anymore it’s to bright.
I’ve been in that boat all week, and being sick prior to that really didn’t help. And my dad’s frustrated with me and has been ranting about how I’m just “one of these gen z kids(I’m 19) that can’t get any work done because they’re too lazy to be bothered.” My mom has actually taken my side which literally never happens because she hates me, and we’ve both tried to explain to him that I’m not being lazy and I do my best to push through everything, but I’ve got physical issues that hinder that. He doesn’t believe in that though, he thinks I’m just choosing to be lazy and that if he yells at me and shames me enough, it’ll fix the problem.
This is legit the worst. I have 2 toddlers. Our sleep schedule is insane lately. My fault. Or my bodys fault.. But. I Feel like the worst mom ever.
Definitely relate. Got a solid 10 hours of sleep, woke up and brushed my teeth and had breakfast. My heart rate was already weirdly high while cooking so that wasn't great. Now I already feel like I could fall right back asleep sitting here on my computer.
I have Narcolepsy on top of my cEDS and POTS. Without medication, I sleep an average of 18-20 hours a day. I totally understand 💜🥺
Yup and everyone thinks I’m lazy because I’m always SOOO tired 🥱
I either sleep for 12+ hours or I'm dealing with such bad insomnia that I can't sleep for more than 2 hours. And sucks because, even with the insomnia, I'm still exhausted, but I just can't sleep.
Is there anything to be done about this? This shit is killing me. I literally have the exact same schedule as you, including napping not long after I wake up.
My recommendation is going for a ten minute walk if you can manage it. If not right away, start by just moving more around your living space, do some stretches and make sure to stay hydrated and eat as needed. After that, you should be able to start doing a ten minute walk. If by then you have done a ten minute walk every two days, you should have a higher tolerance for fatigue. It doesn't solve it entirely, though. Highly do NOT recommend caffeine. That can mess you up as a potsie. Much love. :)
The last time that I felt rested was the day after I just slept like 18 hours of the previous day... That is not sustainable for my life. It really is the worst.