As a life-long ambitious and highly motivated person, I had to build up an extreme level of self-restraint to recover. This was one of the toughest mental challenges in my yearlong journey.
I agree with Amy and Amber. Excellent post, and kudos to you for being such a fast learner of loving life at a snail pace.
I had heard of the 50% rule before and always was confused by it ("50% of what? what I did yesterday or what I think I could do if I was healthy?"). Thanks a lot for clarifying that for me. I also realized while reading your post that another problem was my broken gauge for my body - already *before* getting sick. People would say I was giving 120% at work, and I felt like 90%... so I am playing around with this rule now, as a way to get a better feeling of my spoons.
The way I've gone about this so far has been microdosing. Not doing baby steps, which ended up being too big for me, but micro steps. It requires a lot of patience, but it can be very satisfying to start reeeeeally small (thus without PEM) and then do tiny increments, and after a while be surprised at how far I've gotten. For example, when starting to read again, I started with one sentence a day. After a few weeks I was able to read a page without even noticing. Interestingly, now that I'm playing around with your 50% rule, I find that I dare to take a bit bigger steps and the combination works nicely.
My other rule is "one day more". The hardest thing for me is not doing tiny steps, but dealing with the ups and downs. I'm very constant, so it throws me off when I have an energy dip and I don't know how to build up the activity again. A fellow ME warrior told me about this: after a crash or energy dip, whenever you feel like you can do an activity again, just wait one day more. It's a nice way to pace myself a little, and I imagine Lin Manuel Miranda singing Les Miserables for an extra smile ;-)
Lol! Ok that carpool karaoke is INTENSE!!! I'm not one for musicals, so I didn't even get the quote haha 🙈 major cultural miss! But I love your one day more rule. I was definitely doing that, without having a clear concept of it!! I know I also did the "one more week" and "one more month" versions of that. Maybe I'll write about it in a future post and quote you (and Lin Manuel). Thx for sharing!!!
This post is excellent, Nicole. This series of lessons you learned took me three years to understand. Loosening my grip on my need to be productive has only really happened in earnest in the fourth year of my recovery.
I’d love to link to this post in my next recovery series post (coming out in a few weeks). I’ll be talking about the importance of pushing my boundaries, but your post was a really good reminder that people with these illnesses can’t start out pushing boundaries. You have to first stay well within them.
Thank you for sharing your experiences! I’m so glad your LC recovery was relatively short. This will really help people in the early stages not take years to get these lessons.
Thanks so much Amy. Really appreciate hearing your thoughts. And yeah it's a very difficult lesson to learn-- I'm still in the process of figuring out the new me haha :)
I would love it if you shared it! I've been reading your recovery series, and it's such a great overview. I'd be honored to be listed as a resource there. <3
I wasn’t far behind you Amy. It took for the pandemic to really drive home the message to slow the fluff down. And that came in the form of a massive relapse! This was over 2 years after my waking up to the severity of the illness.
This resonates with me so much. I am 1 year into long covid although only got diagnosis 3 months ago. I pushed too hard after 7 months and made myself a lot sicker so I have learned to stop and pace. It is so hard when you’re having a good day to not overdo it. This Christmas season I cut down a huge amount on what we were doing as a family and yet I know I have overdone it - I can feel a crash looming. I cannot wait for everyone to go back to work and school so I can just “be” without any pressure or temptation to push myself. My 2025 resolution is to say No to myself as much as to others, but to also be more consistent at doing small amounts when I have tried it and it works. Thanks for the article - it really has helped me to read someone else’s story who is through the other side.
I'm really sorry to hear. I clicked through to your profile and saw your post re LA fires. I truly can't imagine dealing with both at the same time. Crossing my fingers for you Reda!
Slowing down was up there with one of my greatest challenges. When it came to sharing this with my audience a good 3 years in, I felt physically sick admitting it out loud. I had no idea at that stage that it was extremely common. You seem to know what you’re doing with your writing and sharing - how it feels to me in any case. I feel like I’ve just been spewing out what comes up in sharing my story. No strategy, rhyme or reason. Its always a surprise what comes out next😆
Haha thanks, there's indeed a plan here :P I have a long list of (to me) important lessons, that I feel a need to pass on, because there's so little help out there from the medical system that we all look to. And I put them into a framework, because that's how my brain works lol. And the other side to it is that that structure is also a total crutch that I'm holding on to because I'm deeply uncomfortable with writing publicly (or at all, outside of a work context haha). Just spewing out writing is a skill I admire and that is still very far out of my comfort zone! So I hope you can value that skill and confidence in yourself :)
Aw thanks, I never looked at it like that! On reflection, it has been one heck of an evolution to write the way I write. I’ve felt sick and been shaking at some posts, a few vulnerability hangovers. It’s been a lot.
For any of us to go against societal norms and share what we are sharing, in whatever capacity is a huge deal. I couldn’t fathom why noone was really doing it when I started, why aren’t there books for us to read? Once I got going, I realised why. You can’t blame those who have recovered before us for wanting to return to their lives. My life will never be the same again.
Did you find the same as me? In that there is little to no interest in your recovery from a medical perspective?
I agree with Amy and Amber. Excellent post, and kudos to you for being such a fast learner of loving life at a snail pace.
I had heard of the 50% rule before and always was confused by it ("50% of what? what I did yesterday or what I think I could do if I was healthy?"). Thanks a lot for clarifying that for me. I also realized while reading your post that another problem was my broken gauge for my body - already *before* getting sick. People would say I was giving 120% at work, and I felt like 90%... so I am playing around with this rule now, as a way to get a better feeling of my spoons.
The way I've gone about this so far has been microdosing. Not doing baby steps, which ended up being too big for me, but micro steps. It requires a lot of patience, but it can be very satisfying to start reeeeeally small (thus without PEM) and then do tiny increments, and after a while be surprised at how far I've gotten. For example, when starting to read again, I started with one sentence a day. After a few weeks I was able to read a page without even noticing. Interestingly, now that I'm playing around with your 50% rule, I find that I dare to take a bit bigger steps and the combination works nicely.
My other rule is "one day more". The hardest thing for me is not doing tiny steps, but dealing with the ups and downs. I'm very constant, so it throws me off when I have an energy dip and I don't know how to build up the activity again. A fellow ME warrior told me about this: after a crash or energy dip, whenever you feel like you can do an activity again, just wait one day more. It's a nice way to pace myself a little, and I imagine Lin Manuel Miranda singing Les Miserables for an extra smile ;-)
https://www.youtube.com/watch?v=YshgmStEZh0 (minute 8:25)
Lol! Ok that carpool karaoke is INTENSE!!! I'm not one for musicals, so I didn't even get the quote haha 🙈 major cultural miss! But I love your one day more rule. I was definitely doing that, without having a clear concept of it!! I know I also did the "one more week" and "one more month" versions of that. Maybe I'll write about it in a future post and quote you (and Lin Manuel). Thx for sharing!!!
That is one of my favorite carpool kareokes ever!!
This post is excellent, Nicole. This series of lessons you learned took me three years to understand. Loosening my grip on my need to be productive has only really happened in earnest in the fourth year of my recovery.
I’d love to link to this post in my next recovery series post (coming out in a few weeks). I’ll be talking about the importance of pushing my boundaries, but your post was a really good reminder that people with these illnesses can’t start out pushing boundaries. You have to first stay well within them.
Thank you for sharing your experiences! I’m so glad your LC recovery was relatively short. This will really help people in the early stages not take years to get these lessons.
Thanks so much Amy. Really appreciate hearing your thoughts. And yeah it's a very difficult lesson to learn-- I'm still in the process of figuring out the new me haha :)
I would love it if you shared it! I've been reading your recovery series, and it's such a great overview. I'd be honored to be listed as a resource there. <3
I wasn’t far behind you Amy. It took for the pandemic to really drive home the message to slow the fluff down. And that came in the form of a massive relapse! This was over 2 years after my waking up to the severity of the illness.
Ooof, massive relapse sounds rough Amber-- really sorry you had to live through that! This illness is a tough, tough, tough teacher
This resonates with me so much. I am 1 year into long covid although only got diagnosis 3 months ago. I pushed too hard after 7 months and made myself a lot sicker so I have learned to stop and pace. It is so hard when you’re having a good day to not overdo it. This Christmas season I cut down a huge amount on what we were doing as a family and yet I know I have overdone it - I can feel a crash looming. I cannot wait for everyone to go back to work and school so I can just “be” without any pressure or temptation to push myself. My 2025 resolution is to say No to myself as much as to others, but to also be more consistent at doing small amounts when I have tried it and it works. Thanks for the article - it really has helped me to read someone else’s story who is through the other side.
I’m glad to hear, thanks for sharing. And yes to saying no and to consistently building up :) all the best to you!
This post made me so emotional, and I’m having such a difficult time right now. Thanks for sharing.
I'm really sorry to hear. I clicked through to your profile and saw your post re LA fires. I truly can't imagine dealing with both at the same time. Crossing my fingers for you Reda!
Nicole- Sometimes I wonder if certain symptoms I’m experiencing are related to this. A very important piece. Thank you for sharing.
You’re very welcome Thalia
Slowing down was up there with one of my greatest challenges. When it came to sharing this with my audience a good 3 years in, I felt physically sick admitting it out loud. I had no idea at that stage that it was extremely common. You seem to know what you’re doing with your writing and sharing - how it feels to me in any case. I feel like I’ve just been spewing out what comes up in sharing my story. No strategy, rhyme or reason. Its always a surprise what comes out next😆
Haha thanks, there's indeed a plan here :P I have a long list of (to me) important lessons, that I feel a need to pass on, because there's so little help out there from the medical system that we all look to. And I put them into a framework, because that's how my brain works lol. And the other side to it is that that structure is also a total crutch that I'm holding on to because I'm deeply uncomfortable with writing publicly (or at all, outside of a work context haha). Just spewing out writing is a skill I admire and that is still very far out of my comfort zone! So I hope you can value that skill and confidence in yourself :)
Aw thanks, I never looked at it like that! On reflection, it has been one heck of an evolution to write the way I write. I’ve felt sick and been shaking at some posts, a few vulnerability hangovers. It’s been a lot.
For any of us to go against societal norms and share what we are sharing, in whatever capacity is a huge deal. I couldn’t fathom why noone was really doing it when I started, why aren’t there books for us to read? Once I got going, I realised why. You can’t blame those who have recovered before us for wanting to return to their lives. My life will never be the same again.
Did you find the same as me? In that there is little to no interest in your recovery from a medical perspective?