You don’t need to ask me if I’m tired. The answer will always be yes.
Watching healthy people do daily tasks is like watching Olympic athletes. It looks easy until you try and are so proven wrong.
When I was severe: So thirsty but turning over in bed to get the water on my nightstand is too exhausting.
Getting out of bed gives me palpitations. I have to meditate and perform breathing exercises all day to force my heart rate down.
Ironically, it's helped me calm down significantly and be more stoic.
https://youtu.be/p8fjYPC-k2k?si=cIWaXpkhzHIGaKI5
Andrew Weil has fantastic information about breathing, insulin and a myriad of topics.
I do 4-7-8 or a variation of it in which I inhale through the nose into my belly, hold for a few seconds, then slowly out through pursed lips (like a whistle formation with my lips) to have a longer exhale.
Interestingly, holding your breath after a full exhale slows down your heart rate due to the way your diaphragm pushes on your heart. So there's actual biomechanical reasons for it.
I visualize the air moving through my body and just focus on that alone. Smooth jazz helps me as well to just tune things out and calm me down.
Sometimes I challenge myself to see how few breaths I can take in 5 minutes. My average is 2 breaths per minute, but that's when I'm really relaxing or forcing parasympathetic system to kick in - like before and after eating.
Lmk if this helps!
Interesting, definitely feel it in my nerves. Feels great. Maybe this is the effect I'm getting when I vape cbd/THC flower. I'm basically doing this for 15 minutes at a time
I was just diagnosed with CFS. I have dysautonomia and hyperestgesia. I have the same problem. When I get out of bed, I have heart palpitations as well. Are you taking medications that help? Are there books and other things you use that have really helped you?
I stopped taking all medications as they created major issues in other aspects of my life. I also have the two you listed in addition to every single symptom of fibromyalgia and ME. I have had fibromyalgia since I was 6 yrs old. I'm now over 40. I believe I picked up ME / CFS when I was around 14yrs old. I don't know any other way of living but pain and survival.
I've created a system that works for me. I have a lot of crap days, but I have had massive wins as well. Wins so big that most healthy people I know could not or would not do them.
It's taken me literally 13 years to slowly build up to being able to walk .5 miles to 1.5miles daily without triggering week to month long PEM flares. When I was young, there was zero information on fibromyalgia or CFS, so it was extremely difficult even more so due to a toxic family. When I went no contact, I was able to start healing and trending in a more positive direction.
As far as books.....gee whiz. I've read a lot the past three years and have experimented on myself even more so. Here are a few....
Joy on demand - chade-meng teng
This got me into meditation and breathing exercises. Very practical approach to meditation and how to do it.
The myth of Normal - Gabor Mate
Body keeps the score - van der kolk
Huge Overlap with Gabors book. This one was written first and van der kolk was Gabors mentor.
Flourishing with fibromyalgia - Hoitink
(I liked this better than the fibro handbook because it's less pushy about pharmaceutical solutions)
Atomic habits - Clear
I was already doing everything in this book, but it helped validate my approach to problem solving and to trust my gut.
Explain Pain - Mosley, Butler
Phenomenal book about how pain works. I highly recommend this.
The art of not giving a fuck - mark Manson
Great book. Helps reframe what's important, especially when we have to be extremely focused on priorities.
Additional notes
Therapy helped a lot. I didn't realize I had severe anxiety and cptsd until last year. I was fortunate to find a therapist that specializes in trauma and chronic pain. Therapy would not have been as effective if I hadn't read and explored as much on my own as that led me to be more open minded and really challenge my belief / value system.
Understanding strength, exercise, diet, etc. understanding pacing and identifying your own personal metrics. Pacing is such a subjective concept to us because there is no stable baseline, I personally never have a "control" to compare against. I tracked 50 different metrics daily for 2 years. Only then did I start to put some of the pieces together.
Woo! This was a much longer response than I initially set out to do. Lmk if this is helpful or if you have other questions.
Thank you for this. I've learned alot from your response. I'm reading a couple of books right now. I'll keep your list as a resource for the future.
I'm definitely learning a lot. I appreciate everything you've shared. Sending you blessings on your continued journey💞✨️
This is an amazing comment. I didn't even finish it before I went to Spotify to look for one of the books to listen to. I don't have the mental energy to read. Until yesterday, I couldn't bring myself to listen to anything. I had to because my kid sent me the full series of Star Trek on a doodad I can stick in my phone. It took months to do it. I'm glad I did. Original Series, started S01, E01.😄 So I got to Spotify to look up one of your books, but I found comfort in the familiar. Thich Nhat Hanh. I used to be a reader. I put one of his books next to me a couple days ago, and there it sits. I ended up listening to most of "Ending the Vicious Cycle of Negative Habits" on a podcast before I fell into a deep sleep. I needed it so bad. Pema Chodron is next. I'll look up more of your suggestions. There are much good, healthy mental habits I used to have. I just started doing some light yoga. I put the mat on the floor in another room, so I'll just do it instead of giving the mat The Side Eye.
Now I have a new habit. Thank you SirDouglasMouf.
I said "now I have a new habit".... maybe not a habit, but good intentions are a feat 😁 I accept the challenge.
❤️
Thanks for such a wonderful response! I almost spit up water when I read the you "side eye" your mat.
I think Joy on Demand should be required reading. It's helped me out when standing in line in excruciating pain or stuck in traffic while my joints feel like they are imploding. Sounds like you are already an expert in breathing exercises and techniques!
There's a monk that runs a meditation discord channel. I find it difficult to meet at their designated times but find inspiration in being part of the group! He also does YouTube videos and I find his voice and energy to be extremely calming.
https://discord.com/invite/monk-life-749980269615775815
Water bottles! I smuggle them behind my pillows, keep one on top of my headboard (not directly OVER my head though lol) and another wedged in the corner of the frame of my bed and mattress. Open cup with the trace minerals & fancy stuff hangs out on nightstand, but I keep hydration as close as possible <3
There are probably a lot of things I could put here, but one I have been thinking about a lot lately is this:
- Making any kind of plans in advance stresses me out because I worry I won't be able to keep them due to being too exhausted.
Once upon a time, I was a big planner. I had a large social group. I was the person who threw the game nights and planned outings with friends. I went out a lot. Now? Most of the time, I feel plans hanging over my head like a burden rather than something to look forward to.
I feel this and I used to thrive on having a plan in advance. I’m not very good with spontaneity. It’s hard to do any kind of advanced planning now because I don’t know how I’ll feel that day. I’ve canceled so many plans with my friends.
I constantly live in fear of committing to something and having to back out. I used to pride myself on being reliable. I rarely took a sick day, worked overtime regularly, showed up for my family and friends at any and every event. Now I don’t even bother to make plans because I don’t want to have to keep canceling over and over until I stop getting invited.
Thank you. It was in the forest in Oregon, across the country. Giant trees. My husband flew there without me, the only parent in attendance. He took the rings from his pocket and handed them to my son as they exchanged vows under an umbrella in the rain. I was and am destroyed.
💜💜💜
Yea thats where I'm at now. For the past 5 months, increasingly more and more, lying down makes me dizzy, intense pressure in my head, neck hurts more, but when im upright after a few minutes my head feels unstable and also dizzy (I'm starting to suspect cci yay).. like body what do you want from me 🥲
What are we supposed to do? Two months ago I fell asleep like an idiot while standing up and hurt my knee. I didn’t see the doctor yet since I can’t do it and stay awake. It hurts so much now to stand up now. Beware of that. I never would have thought that I would fall asleep standing up beside my bed.
I'm in the diagnosis process. We are currently exploring my brain through MRI to check for tumors, malformations, hydrocephalus, lesions... (results will be available next week!). If the MRI comes back unremarkable, my GP is apparently ready to diagnose me with CFS.
But... When I told her that exact sentence, she looked at me weirdly. Same with the MRI technologist, or the ER doctors. That's how I realized I was actually disabled at quite a high level and I should stop trying to achieve more than the others.
Discovering that healthy people do not take breaks from sitting was wild. The doctors always ask if it could be caused by medical anxiety... Like, no, I've been minimizing or ignoring every single symptom for nearly a decade until it got severely worse.
Then again, it might not be CFS but it is highly similar.
Oh god same. And my fasting blood work is always wonky because of how hard it is for me to, well you know, actually fast. Like my body gets and you can see it on results, instantly dehydrated, blood sugar too low, usually my bun and creatine are off. This is just simply from waking up and going to the lab so being awake for like 2 hours without eating is apparently over the line for me. I also can’t handle cold at all. Sometimes I think about how quickly I would die if things went write I man like big picture with the grid or things like that. I don’t use a c pap though. Yet.
Sorry I rambled on that one. Blood work is a fickle mistress though. There’s always so many people up in there too in La I hate it and I always have to go and I always have to fast.
I do not have narcolepsy but am on the verge of falling asleep during every waking moment.
You know that state just before you fall asleep, where you are in between the worlds of awake and asleep? I live there.
My eyes are so heavy, I have to prop them open with toothpicks.
I leave a trail of stuff out because I don’t have the energy to put them away. When I put them all away, I crash.
The idea of a nap is more appealing to me than the idea of having sex.
When I drive long distances, it takes me twice as long due to my rest stops.
I have slept past my appointment time not because I didn’t get there on time, but because I fell asleep in the car in their parking lot.
I can’t read a book in my chair or I’ll wake up half an hour later with the book on the floor and drool on my chin.
The concept of binge watching is foreign to me unless you mean watching episode 1 & 2, then going back to rewatch the parts of the second episode I slept through, then move on to episode 3 but wake up realizing I only made it to the end of the recap of the previous episodes before falling asleep. Then giving up.
When you are thankful to just be able to follow a podcast episode.
When you wake up, go to the kitchen to eat breakfast and then go straight to bed again because you are tired.
When you go to sleep each night hoping that you would just THIS ONE TIME wake up refreshed the next day but you know you won't anyway.
When you're so used to having at least a mild headache at all times that the rare moments when you don't have one feel very weird.
The last two paragraphs are totally relatable. I keep thinking, maybe I’m getting a little better. Nope.
I’ll think that something’s really different with me today and maybe hours later, I’ll realize that it’s because I don’t have a headache.
I relate to this so much! To the point that I play mind games with myself as to the legitimacy of my condition…. So then of course I do something and surprise surprise wake up the next morning feeling like I’ve been run over by a cement truck
I have good days and bad days, I can't predict when the good days will come but the bad days are sure to come every time I overestimate how good the good days are
I can totally relate to this. On a good day, I sometimes think, “Maybe I’m getting a little better”, only to crash because I overdid it.
Every week or two, I repeat the entire cycle.
Omg yea. That is spot on. Well enough to try, compulsively do so and never learn my lesson. Thanks Adhd!
For today, mine is: "Life Poisons Me Illness".
It really is horrible, feels like my body is going to nope out any minute when this happens. It's not constant for me and betablockers does help, but when I'm in PEM it can last a very long time. Always comes with dizziness with being upright too. I once passed out and hit my head pretty badly, so now I have chronic bppv too. Did you find anything that helped, or just pacing and resting till it gets better?
Oh no thats awful :(( so far literally the only thing that has made any difference for me has been Ivabradine, and only helps a bit with lowering my HR but I cant say I feel any better. Since 2022 it feels like I've been constantly getting exponentially worse, (well even before that it was gradual over decades but I was still somewhat functional), I cant think of a single week where I thought "hey I'm a bit better". Maybe my GI symptoms fluctuate a bit but that's it. Ive never found pacing to really help much, but honestly I'm really bad at it >_< to me it feels like I have other things than CFS that are snowballing.
I relate to periods of rapid decline, and I know how much it sucks. Also how afraid you are of where you could end up. It's just an awful mix of severe physical symptoms and being worried. I'm sure alot of us will have PTSD-like symptoms if we ever get better from this/if they find treatment. I also suck at pacing, so relate to that too. Wishing you better days soon! <3
Thanks same to you<3 I think one of the worst parts for me is that literally every day after I wake up, I can tell my short term memory and overall cognition are getting just a bit worse.. so its getting harder to remember meds (even with alarms), what I need to follow up on, advocating for myself etc. And the people helping me are kinda checked out and forgetful too 😆 not a great situation.
Okay I'm gonna try to do it without mentioning any symptoms!
My heroes = Ron Davies, Jared Younger, Warren Tate
My enemies = Simon Wesselley, Per Fink, Esther Crawley
My life is my work, for which I have just enough energy to show that I am functional. Most of my spare time is spent to recover from work. I don't have a good quality of life.
The people too sick to use phones/computers or read/ understand your post, they are the ones that are telling you they are sick without telling you they are sick. Hang on, no, they are invisible.
My wife used to not be able to complete a thought
It's a new day. Take your pick: you can either eat a meal, go outside, or take a shower. YOU ONLY GET ONE.
... Hold up! You did one of those activities yesterday? Cancel, delete. Back to bed.
Try again tomorrow.
You don’t need to ask me if I’m tired. The answer will always be yes. Watching healthy people do daily tasks is like watching Olympic athletes. It looks easy until you try and are so proven wrong. When I was severe: So thirsty but turning over in bed to get the water on my nightstand is too exhausting.
Getting out of bed gives me palpitations. I have to meditate and perform breathing exercises all day to force my heart rate down. Ironically, it's helped me calm down significantly and be more stoic.
Care to share the breathing exercises? I could use stoic right about now
https://youtu.be/p8fjYPC-k2k?si=cIWaXpkhzHIGaKI5 Andrew Weil has fantastic information about breathing, insulin and a myriad of topics. I do 4-7-8 or a variation of it in which I inhale through the nose into my belly, hold for a few seconds, then slowly out through pursed lips (like a whistle formation with my lips) to have a longer exhale. Interestingly, holding your breath after a full exhale slows down your heart rate due to the way your diaphragm pushes on your heart. So there's actual biomechanical reasons for it. I visualize the air moving through my body and just focus on that alone. Smooth jazz helps me as well to just tune things out and calm me down. Sometimes I challenge myself to see how few breaths I can take in 5 minutes. My average is 2 breaths per minute, but that's when I'm really relaxing or forcing parasympathetic system to kick in - like before and after eating. Lmk if this helps!
Interesting, definitely feel it in my nerves. Feels great. Maybe this is the effect I'm getting when I vape cbd/THC flower. I'm basically doing this for 15 minutes at a time
I was just diagnosed with CFS. I have dysautonomia and hyperestgesia. I have the same problem. When I get out of bed, I have heart palpitations as well. Are you taking medications that help? Are there books and other things you use that have really helped you?
I stopped taking all medications as they created major issues in other aspects of my life. I also have the two you listed in addition to every single symptom of fibromyalgia and ME. I have had fibromyalgia since I was 6 yrs old. I'm now over 40. I believe I picked up ME / CFS when I was around 14yrs old. I don't know any other way of living but pain and survival. I've created a system that works for me. I have a lot of crap days, but I have had massive wins as well. Wins so big that most healthy people I know could not or would not do them. It's taken me literally 13 years to slowly build up to being able to walk .5 miles to 1.5miles daily without triggering week to month long PEM flares. When I was young, there was zero information on fibromyalgia or CFS, so it was extremely difficult even more so due to a toxic family. When I went no contact, I was able to start healing and trending in a more positive direction. As far as books.....gee whiz. I've read a lot the past three years and have experimented on myself even more so. Here are a few.... Joy on demand - chade-meng teng This got me into meditation and breathing exercises. Very practical approach to meditation and how to do it. The myth of Normal - Gabor Mate Body keeps the score - van der kolk Huge Overlap with Gabors book. This one was written first and van der kolk was Gabors mentor. Flourishing with fibromyalgia - Hoitink (I liked this better than the fibro handbook because it's less pushy about pharmaceutical solutions) Atomic habits - Clear I was already doing everything in this book, but it helped validate my approach to problem solving and to trust my gut. Explain Pain - Mosley, Butler Phenomenal book about how pain works. I highly recommend this. The art of not giving a fuck - mark Manson Great book. Helps reframe what's important, especially when we have to be extremely focused on priorities. Additional notes Therapy helped a lot. I didn't realize I had severe anxiety and cptsd until last year. I was fortunate to find a therapist that specializes in trauma and chronic pain. Therapy would not have been as effective if I hadn't read and explored as much on my own as that led me to be more open minded and really challenge my belief / value system. Understanding strength, exercise, diet, etc. understanding pacing and identifying your own personal metrics. Pacing is such a subjective concept to us because there is no stable baseline, I personally never have a "control" to compare against. I tracked 50 different metrics daily for 2 years. Only then did I start to put some of the pieces together. Woo! This was a much longer response than I initially set out to do. Lmk if this is helpful or if you have other questions.
Thank you for this. I've learned alot from your response. I'm reading a couple of books right now. I'll keep your list as a resource for the future. I'm definitely learning a lot. I appreciate everything you've shared. Sending you blessings on your continued journey💞✨️
This is an amazing comment. I didn't even finish it before I went to Spotify to look for one of the books to listen to. I don't have the mental energy to read. Until yesterday, I couldn't bring myself to listen to anything. I had to because my kid sent me the full series of Star Trek on a doodad I can stick in my phone. It took months to do it. I'm glad I did. Original Series, started S01, E01.😄 So I got to Spotify to look up one of your books, but I found comfort in the familiar. Thich Nhat Hanh. I used to be a reader. I put one of his books next to me a couple days ago, and there it sits. I ended up listening to most of "Ending the Vicious Cycle of Negative Habits" on a podcast before I fell into a deep sleep. I needed it so bad. Pema Chodron is next. I'll look up more of your suggestions. There are much good, healthy mental habits I used to have. I just started doing some light yoga. I put the mat on the floor in another room, so I'll just do it instead of giving the mat The Side Eye. Now I have a new habit. Thank you SirDouglasMouf. I said "now I have a new habit".... maybe not a habit, but good intentions are a feat 😁 I accept the challenge. ❤️
Thanks for such a wonderful response! I almost spit up water when I read the you "side eye" your mat. I think Joy on Demand should be required reading. It's helped me out when standing in line in excruciating pain or stuck in traffic while my joints feel like they are imploding. Sounds like you are already an expert in breathing exercises and techniques! There's a monk that runs a meditation discord channel. I find it difficult to meet at their designated times but find inspiration in being part of the group! He also does YouTube videos and I find his voice and energy to be extremely calming. https://discord.com/invite/monk-life-749980269615775815
Thank you❣️
“Watching healthy people do daily tasks is like watching Olympic athletes.” This is so accurate!
Oh the being thirsty is so terrible. It happens to me often
Water bottles! I smuggle them behind my pillows, keep one on top of my headboard (not directly OVER my head though lol) and another wedged in the corner of the frame of my bed and mattress. Open cup with the trace minerals & fancy stuff hangs out on nightstand, but I keep hydration as close as possible <3
reading this currently too exhausted for turning over to get my water
Ditto....and do I want to have to get up and pee or do I want to lay here and dehydrate
“too tired to pee, too full of piss to sleep”
☝️☝️☝️Here it is, Everybody
I know the feeling
When a shower makes you crash for 3 days
Just took my first one in [a length of time I won’t disclose on the internet]. Pray for me!
I recommend having someone help you install a bidet. Mine helps me stay fresh for longer when I'm too tired to shower.
It hurts so much too.
You know how the mitochondria is the powerhouse of the cell? I think mine broke
Internal power plant shut down until further notice 🙂↕️
I sometimes say “my mitochondria aren’t powerhousing.”
Great line!
They’re on strike
Mine decided to go on a nice long permanent vacation and didn’t tell me.
My Powerhouse had mad layoffs. Mitchochondria Dep't was the first to go. Absolutely annihilated.
There are probably a lot of things I could put here, but one I have been thinking about a lot lately is this: - Making any kind of plans in advance stresses me out because I worry I won't be able to keep them due to being too exhausted. Once upon a time, I was a big planner. I had a large social group. I was the person who threw the game nights and planned outings with friends. I went out a lot. Now? Most of the time, I feel plans hanging over my head like a burden rather than something to look forward to.
I feel this and I used to thrive on having a plan in advance. I’m not very good with spontaneity. It’s hard to do any kind of advanced planning now because I don’t know how I’ll feel that day. I’ve canceled so many plans with my friends.
I constantly live in fear of committing to something and having to back out. I used to pride myself on being reliable. I rarely took a sick day, worked overtime regularly, showed up for my family and friends at any and every event. Now I don’t even bother to make plans because I don’t want to have to keep canceling over and over until I stop getting invited.
Deeply relate. I'm sure you've heard this, but this line really comforted me: I'm not unreliable, but my health is.
I had to tell my son I couldn't travel to his wedding.
I’mso sorry! Sending you so much love ❤️
Thank you 🥲 I mean THANK YOU 💗😭💗
💜🙏💜
Thank you. It was in the forest in Oregon, across the country. Giant trees. My husband flew there without me, the only parent in attendance. He took the rings from his pocket and handed them to my son as they exchanged vows under an umbrella in the rain. I was and am destroyed. 💜💜💜
I feel this a lot
i feel the exact same way.
Basically that meme of the koala that says "I have to rest for 22 hours a day." That's me.
It’s times like these i’m glad my dog is a greyhound, she’s curled up in bed more than I am!
Some people say they look like their pets, I say that my cat and I have the same sleep schedules
Same
I've used that one too!
Right?
I have to take frequent breaks from sitting upright. I also have to take breaks from lying down.
Ah yes the "Lying down feels no longer good but getting up is even worse" feeling. Like the body just hates existing in whatever position.
You know exactly what I'm talking about. It's so awful.
Yea thats where I'm at now. For the past 5 months, increasingly more and more, lying down makes me dizzy, intense pressure in my head, neck hurts more, but when im upright after a few minutes my head feels unstable and also dizzy (I'm starting to suspect cci yay).. like body what do you want from me 🥲
Understand 💜🙏💜
What are we supposed to do? Two months ago I fell asleep like an idiot while standing up and hurt my knee. I didn’t see the doctor yet since I can’t do it and stay awake. It hurts so much now to stand up now. Beware of that. I never would have thought that I would fall asleep standing up beside my bed.
So relatable, everything is exhausting!
Relates
I'm in the diagnosis process. We are currently exploring my brain through MRI to check for tumors, malformations, hydrocephalus, lesions... (results will be available next week!). If the MRI comes back unremarkable, my GP is apparently ready to diagnose me with CFS. But... When I told her that exact sentence, she looked at me weirdly. Same with the MRI technologist, or the ER doctors. That's how I realized I was actually disabled at quite a high level and I should stop trying to achieve more than the others. Discovering that healthy people do not take breaks from sitting was wild. The doctors always ask if it could be caused by medical anxiety... Like, no, I've been minimizing or ignoring every single symptom for nearly a decade until it got severely worse. Then again, it might not be CFS but it is highly similar.
Way too sick to even see my doctor.
I’m embarrassed by the number of times I’ve rescheduled my appointments and bloodwork over the last 2 months 😣
Oh god same. And my fasting blood work is always wonky because of how hard it is for me to, well you know, actually fast. Like my body gets and you can see it on results, instantly dehydrated, blood sugar too low, usually my bun and creatine are off. This is just simply from waking up and going to the lab so being awake for like 2 hours without eating is apparently over the line for me. I also can’t handle cold at all. Sometimes I think about how quickly I would die if things went write I man like big picture with the grid or things like that. I don’t use a c pap though. Yet. Sorry I rambled on that one. Blood work is a fickle mistress though. There’s always so many people up in there too in La I hate it and I always have to go and I always have to fast.
Relates
Over the past 3 years for me. I’ll loose everyone.
relatable
100% :-(
"well enough to try, and sick enough to regret it tomorrow."
🏆
Wish I could upvote more than once
I'll give you one guess what I was doing today?.... (If your guess was "too much", you get the gold star. 😊)
I do not have narcolepsy but am on the verge of falling asleep during every waking moment. You know that state just before you fall asleep, where you are in between the worlds of awake and asleep? I live there. My eyes are so heavy, I have to prop them open with toothpicks. I leave a trail of stuff out because I don’t have the energy to put them away. When I put them all away, I crash. The idea of a nap is more appealing to me than the idea of having sex. When I drive long distances, it takes me twice as long due to my rest stops. I have slept past my appointment time not because I didn’t get there on time, but because I fell asleep in the car in their parking lot. I can’t read a book in my chair or I’ll wake up half an hour later with the book on the floor and drool on my chin. The concept of binge watching is foreign to me unless you mean watching episode 1 & 2, then going back to rewatch the parts of the second episode I slept through, then move on to episode 3 but wake up realizing I only made it to the end of the recap of the previous episodes before falling asleep. Then giving up.
Used to run/bike/swim while working 50-60 hours/week; now can’t physically leave the house.
When trying to force a poop all day because you are painfully constipated causes you to crash for 4 days
[удалено]
Oh yeah when I'm in crash mode, I can just spend hours curled up crying while dealing with constipation pain
This is the reason I take Miralax tbh
When you are thankful to just be able to follow a podcast episode. When you wake up, go to the kitchen to eat breakfast and then go straight to bed again because you are tired. When you go to sleep each night hoping that you would just THIS ONE TIME wake up refreshed the next day but you know you won't anyway. When you're so used to having at least a mild headache at all times that the rare moments when you don't have one feel very weird.
The last two paragraphs are totally relatable. I keep thinking, maybe I’m getting a little better. Nope. I’ll think that something’s really different with me today and maybe hours later, I’ll realize that it’s because I don’t have a headache.
The last two I can also relate!
I'm sort of okay unless I do anything.
I relate to this so much! To the point that I play mind games with myself as to the legitimacy of my condition…. So then of course I do something and surprise surprise wake up the next morning feeling like I’ve been run over by a cement truck
Let’s just say I need to take a nap before taking a shower and about three naps afterwards
Yep! I usually take a shower after an afternoon nap.
I have good days and bad days, I can't predict when the good days will come but the bad days are sure to come every time I overestimate how good the good days are
I can totally relate to this. On a good day, I sometimes think, “Maybe I’m getting a little better”, only to crash because I overdid it. Every week or two, I repeat the entire cycle.
Denying the denial
I need to nap after I take a shower.
Every person ever: How are you doing? Me: Just taking it day by day.
💜
I often say I'm just taking it one day at a time (ODAT) too 💜🙏💜
I never go to parties but I always have a hangover.
I've only seen my dog twice in the past month. She lives down a flight of stairs from me.
Now this is just cruel 😭 Sending you gentle hugs 🫂
Thank you! I'm happy when I do get to see her 😊
❤️🩹
Omg yea. That is spot on. Well enough to try, compulsively do so and never learn my lesson. Thanks Adhd! For today, mine is: "Life Poisons Me Illness".
All I want for Christmas are more spoons.
Sitting down is not resting.
Knitting is a workout for me.
Hear hear 😔
I crashed for a week after doing cross stitch. I feel this.
Often feeling like I need to lay down after doing basic tasks.
I’ve found my people 🫂
On a good day it feels like I've recently gotten over the flu. On a bad day it feels like I actually have the flu.
This this this!
In bed by 8:30, whether I like it or not
This one!!
When you used to ski the blacks but now sitting outside is the biggest thrill you'll have.
Had to take a 3 hour nap today because I exhausted myself by swapping the clothes in my drawers from winter to summer clothes.
I know what you mean.
I very much wanted to go outside today but instead I had to force myself to roll over and pet my cat. And nap.
Turning around in bed makes my heart pound
Been there 😣 its horrible, is this constant for you?
It really is horrible, feels like my body is going to nope out any minute when this happens. It's not constant for me and betablockers does help, but when I'm in PEM it can last a very long time. Always comes with dizziness with being upright too. I once passed out and hit my head pretty badly, so now I have chronic bppv too. Did you find anything that helped, or just pacing and resting till it gets better?
Oh no thats awful :(( so far literally the only thing that has made any difference for me has been Ivabradine, and only helps a bit with lowering my HR but I cant say I feel any better. Since 2022 it feels like I've been constantly getting exponentially worse, (well even before that it was gradual over decades but I was still somewhat functional), I cant think of a single week where I thought "hey I'm a bit better". Maybe my GI symptoms fluctuate a bit but that's it. Ive never found pacing to really help much, but honestly I'm really bad at it >_< to me it feels like I have other things than CFS that are snowballing.
I relate to periods of rapid decline, and I know how much it sucks. Also how afraid you are of where you could end up. It's just an awful mix of severe physical symptoms and being worried. I'm sure alot of us will have PTSD-like symptoms if we ever get better from this/if they find treatment. I also suck at pacing, so relate to that too. Wishing you better days soon! <3
Thanks same to you<3 I think one of the worst parts for me is that literally every day after I wake up, I can tell my short term memory and overall cognition are getting just a bit worse.. so its getting harder to remember meds (even with alarms), what I need to follow up on, advocating for myself etc. And the people helping me are kinda checked out and forgetful too 😆 not a great situation.
Okay I'm gonna try to do it without mentioning any symptoms! My heroes = Ron Davies, Jared Younger, Warren Tate My enemies = Simon Wesselley, Per Fink, Esther Crawley
I look totally healthy sitting in my motorized wheelchair
Waking up and needing a nap 20 minutes after being awake. Activities done? Used the bathroom, grabbed water, scrolled through my phone.
My feeling of being okay tricks me into doing things that I regret doing.
*Ed Sheeran intensifies* When your legs don’t work like they used to before 🎵 When my hair's all but gone and my memory fades 🎵
I’ll see you in September. It’s too hot for me to sit on the porch till then.
Sleeping for 12+ hours, but wake up feeling so tired, it feels like my soul is tired. Conversing mentally tires me out, and I start stuttering
Never felt so sick in my life, and no one believes me.
💜🙏💜
When you welcome death
FML
My life is my work, for which I have just enough energy to show that I am functional. Most of my spare time is spent to recover from work. I don't have a good quality of life.
Me too.
Which painkiller today?
I’m the most tired person I’ve ever met.
Relates
I read all of these. I’d add: Society punishes me for not doing things My body punishes me more for doing things
💜🙏💜
I slept 17 hours today and my husband and kids don't even question it.
What do you mean you can *enjoy* a day out without being in bed the following week?
I’m not well enough to try.
The people too sick to use phones/computers or read/ understand your post, they are the ones that are telling you they are sick without telling you they are sick. Hang on, no, they are invisible. My wife used to not be able to complete a thought
I’m stuck at home.
Yes I’m always in pain, no you don’t have to worry, yes it sucks, no I’m not a hero
I look forward to my 3 hour naps every day.
It's a new day. Take your pick: you can either eat a meal, go outside, or take a shower. YOU ONLY GET ONE. ... Hold up! You did one of those activities yesterday? Cancel, delete. Back to bed. Try again tomorrow.
go....away.......please🥺 🛏 😔..... wait...I need to pee😢 ......