That is true and nice to hear. I always feel like a failure when I can't get myself up before noon. I need to accept that some days it will be before noon, some after.
We just need to live in a society that doesn't work 9-5. Where we wake and sleep and eat when we can. People who don't understand will think we live in some slothful way. I'm picturing hedonism bot from Futurama who is literally always in a bed. It would be nice to always be in bed that moves like that and have an assistant, but I don't um... Like the same things that Hedonism bot does...
I am in a special kind of hell because I have ADHD as well, and the only way to get things done with ADHD is routine and momentum. Which goes against pacing with the MECFS.
I’m also in that club and it is just madness, my head is doing zoomies and usually I would combat that with sports and getting that energy out whatever way I could so I could be able to focus, but now it’s just absolute hell being stuck in this all. Productivity, routines, all the tools I’ve built for myself and trained to keep myself healthy are useless. It’s such a trapped feeling
😊
I wish I had the capability to write more helpful posts on my experiences and what people can expect or collate a "So you've got CFS and ADHD" thing or something.
I made the sub because when I found out I had CFS, I could not find a medical professional who knew about CFS and ADHD in combination and how they interact, and I found a lot of the medical advice I was given was such a struggle to apply to myself and it was a long process of learning the hard way not to beat myself up for not being able to be a 'good' CFS patient.
I'm so glad it has helped and continues to help people; it warms my heart seeing comments like yours, thank you.
You can create a routine and momentum with pacing while having ADHD. You just have to shoot for much less and really be strict with pacing. I don't add activities to my routine until I am sure I can do them. I've also gotten better at allowing modifications in my routine.
I feel this so much. Nobody understands I can’t plan ahead for anything. I don’t even know how I’ll feel an hour from now. I’ve noticed some general patterns in how I feel during certain times of day or what my triggers are, but there’s still so much uncertainty.
I really feel this. Any self help, any general advice, anything that seeks to push you out of your comfort zone is generally horrible. And because of that it makes you feel like a failure -- Because surely if it helps everyone else, it has to be our fault right?
During my worst periods I have a few things that I have to accomplish in a day to feel like I am not a total loser. It is a very short list and on the bad days I don’t check them all off, but then I try to do the missed items the next day.
One of those items is exercise, but that exercise may just be the neck physical therapy exercises that I do to help with neck pain, on good days that could be 20 minutes of Pilates on the floor, but either way I try to do something like that.
So much life advice revolves around getting up early, exercising regularly, studying every day and being hyper consistent with your goals. It’s just not realistic for us. We need to tailor everything to our own understanding of our bodies and our limits.
I’ve been thinking about this so much lately. I’d love to follow those fun “get your life together” videos or Pinterest posts but it’s just not possible
After years of struggling why can't I just wake up at 5 and do everything, I am finally coming to terms with my body. We are no longer doing what our bodies are telling us not to anymore in 2023. Happy New Year folks.
That is true and nice to hear. I always feel like a failure when I can't get myself up before noon. I need to accept that some days it will be before noon, some after.
I was stressing about that just this morning. It's just so strange to be living in this weird reality.
We just need to live in a society that doesn't work 9-5. Where we wake and sleep and eat when we can. People who don't understand will think we live in some slothful way. I'm picturing hedonism bot from Futurama who is literally always in a bed. It would be nice to always be in bed that moves like that and have an assistant, but I don't um... Like the same things that Hedonism bot does...
Hahahahahahaha! Happy new year, and thank you for that.
The o\*gy pit has been scraped and buttered!! All ready for the new year!
I am in a special kind of hell because I have ADHD as well, and the only way to get things done with ADHD is routine and momentum. Which goes against pacing with the MECFS.
Same. Doing things in small chunks is so unsatisfying.
I’m also in that club and it is just madness, my head is doing zoomies and usually I would combat that with sports and getting that energy out whatever way I could so I could be able to focus, but now it’s just absolute hell being stuck in this all. Productivity, routines, all the tools I’ve built for myself and trained to keep myself healthy are useless. It’s such a trapped feeling
Same, I’m glad r/cfsplusadhd exists
😊 I wish I had the capability to write more helpful posts on my experiences and what people can expect or collate a "So you've got CFS and ADHD" thing or something. I made the sub because when I found out I had CFS, I could not find a medical professional who knew about CFS and ADHD in combination and how they interact, and I found a lot of the medical advice I was given was such a struggle to apply to myself and it was a long process of learning the hard way not to beat myself up for not being able to be a 'good' CFS patient. I'm so glad it has helped and continues to help people; it warms my heart seeing comments like yours, thank you.
same. it’s so hard!
Same. It's so hard to manage.
You can create a routine and momentum with pacing while having ADHD. You just have to shoot for much less and really be strict with pacing. I don't add activities to my routine until I am sure I can do them. I've also gotten better at allowing modifications in my routine.
I thought I was alone! I feel like a failure when I get nothing done, but some days it's all I can do to get up and feed the cats.
Ah yes. Me too. Spent all night yesterday doing *normal* things - things that make my life worth living.
Add anxiety disorder on top. Every treatment for anxiety seems to involve pushing yourself which means I'll crash.
I feel this so much. Nobody understands I can’t plan ahead for anything. I don’t even know how I’ll feel an hour from now. I’ve noticed some general patterns in how I feel during certain times of day or what my triggers are, but there’s still so much uncertainty.
Yup! Most general good life advice doesn’t apply to us.
I really feel this. Any self help, any general advice, anything that seeks to push you out of your comfort zone is generally horrible. And because of that it makes you feel like a failure -- Because surely if it helps everyone else, it has to be our fault right?
Very well put.
During my worst periods I have a few things that I have to accomplish in a day to feel like I am not a total loser. It is a very short list and on the bad days I don’t check them all off, but then I try to do the missed items the next day. One of those items is exercise, but that exercise may just be the neck physical therapy exercises that I do to help with neck pain, on good days that could be 20 minutes of Pilates on the floor, but either way I try to do something like that.
Yes. exactly. Different game, different rules.
So much life advice revolves around getting up early, exercising regularly, studying every day and being hyper consistent with your goals. It’s just not realistic for us. We need to tailor everything to our own understanding of our bodies and our limits.
All I know is fuzzy brain means PEM. Lol. No other rules than listening to our bodies apply.
I’ve been thinking about this so much lately. I’d love to follow those fun “get your life together” videos or Pinterest posts but it’s just not possible
I had such a good run for several weeks. Now I’m waking up at 5 pm again. It’s so hard.
It really is a special kind of loneliness. That's the hardest thing to deal with... being so utterly lonely.
After years of struggling why can't I just wake up at 5 and do everything, I am finally coming to terms with my body. We are no longer doing what our bodies are telling us not to anymore in 2023. Happy New Year folks.