ugh. i feel so much of this so hard. you are, among all the other things, a phenomenal writer. i think that that "inexhaustible" stubbornness (also a southern trait, maybe? she says, southernly stubborn) may not be manifested in your physical body any more but is still present in so many ways in your heart and brain.
Former indefatigable rebel here. I recognize and respect your anger and grief over the loss of that aspect of yourself. My fatigue issues started back in 2001 so I've had more time to acclimate to them but it's still hard. Idk if it helps to hear, but I think by refusing to give up you *are* (metaphorically) telling them you'll run it again. You just run differently now.
I felt all of this so deeply. I have ME/CFS and have been sick for 10 years. It’s so hard to accept myself and body as it is. I will drink lots of coffee some days so I can do activities I like (usually reading books or watching tv with my partner) instead of needing to rest and sleep/nap. I usually feel extra bad in the days following a coffee day but can’t seem to stop doing it.
I’m always trying to push past the pain and fatigue even when it’s harming me. I have to remind myself daily that being disabled isn’t a moral failing or something I have to fight to overcome. My life is so much better when I treat myself the way I would a beloved friend. I make myself some tea, get cozy in bed and don’t try to push past what my body can handle. I admire the way my cats are experts at radical rest. They don’t feel bad or embarrassed or guilty about taking naps all day. Thank you for sharing this. I’m grateful for your honesty and openness - it’s my default setting to stay quiet about these matters of chronic illness but I truly feel that it’s better to talk frequently about our lived experiences. 💜
This thing about being inexhaustible has me thinking about how when we laud someone for their passion or dedication to a cause or to a job, we call them “tireless.” I worked for 25 years in victim services and sat through enough awards dinners and galas where honorees were often referred to as “tireless advocates.” I turned to a colleague at one of these events and said, “please don’t ever let anyone refer to me as a tireless anything. I GET TIRED.” There’s nothing wrong with getting tired. When we start thinking we need to earn rest, capitalism has won. Until the day it disables us, that is. Then we’ve both lost 😞.
Love this. I do really believe we'll find the ways that we can help, even if we can't walk far/carry heavy things/go to far-away places etc etc. But whew, I have a lot of trouble with it too.
I feel this in my bones, Heather. Thank you for writing it. For me it has been a 15 year battle with chronic Lyme, most likely from a tick bite while hiking…bc I used to hike so much. I was in NC and it was my fave thing, having so much nature to explore with mountains and beach an easy drive away. At the same time I was working 100 hour weeks.
That all went away so fast and now there are no easy drives, much less energy for hiking. It took me years to build back to being able to support myself and I still have to work a 4 day week, literally sleeping or at least in bed most of my 3 days off each week.
Resistance looks way different now and that hurts. FWIW, it helps me to remember ‘doing what we can’ looks different for each of us…and that’s all we can be expected to do. It’s all we can expect ourselves to do. You bring joy to loads of us with your writing, cat pics, and online presence. I appreciate you and everyone in this thread. I believe in us, all still fighting and finding joy where we can.
god, this is just the realest damn thing. you are the best and i so appreciate how you've articulated all of this through your own history (and your own present). love you so, so much friend 🖤 (and thank you for reminding me to drop off the bags i have ALSO been collecting for the pantry!)
ugh. i feel so much of this so hard. you are, among all the other things, a phenomenal writer. i think that that "inexhaustible" stubbornness (also a southern trait, maybe? she says, southernly stubborn) may not be manifested in your physical body any more but is still present in so many ways in your heart and brain.
Remember the part of The Little Prince where he says, "What is essential is invisible to the eye" ? That.
Former indefatigable rebel here. I recognize and respect your anger and grief over the loss of that aspect of yourself. My fatigue issues started back in 2001 so I've had more time to acclimate to them but it's still hard. Idk if it helps to hear, but I think by refusing to give up you *are* (metaphorically) telling them you'll run it again. You just run differently now.
I felt all of this so deeply. I have ME/CFS and have been sick for 10 years. It’s so hard to accept myself and body as it is. I will drink lots of coffee some days so I can do activities I like (usually reading books or watching tv with my partner) instead of needing to rest and sleep/nap. I usually feel extra bad in the days following a coffee day but can’t seem to stop doing it.
I’m always trying to push past the pain and fatigue even when it’s harming me. I have to remind myself daily that being disabled isn’t a moral failing or something I have to fight to overcome. My life is so much better when I treat myself the way I would a beloved friend. I make myself some tea, get cozy in bed and don’t try to push past what my body can handle. I admire the way my cats are experts at radical rest. They don’t feel bad or embarrassed or guilty about taking naps all day. Thank you for sharing this. I’m grateful for your honesty and openness - it’s my default setting to stay quiet about these matters of chronic illness but I truly feel that it’s better to talk frequently about our lived experiences. 💜
Thanks for sharing. I keep coming back to these words from Rebecca Solnit:
"The fact that we cannot save everything does not mean we cannot save anything and everything we can save is worth saving."
I'm so heartbroken and sad, but trying to find things that i can do anyway (calling elected officials, passing along information to friends, etc)
I appreciate everything you're doing ❤️
This thing about being inexhaustible has me thinking about how when we laud someone for their passion or dedication to a cause or to a job, we call them “tireless.” I worked for 25 years in victim services and sat through enough awards dinners and galas where honorees were often referred to as “tireless advocates.” I turned to a colleague at one of these events and said, “please don’t ever let anyone refer to me as a tireless anything. I GET TIRED.” There’s nothing wrong with getting tired. When we start thinking we need to earn rest, capitalism has won. Until the day it disables us, that is. Then we’ve both lost 😞.
Sounds to me like you are still inexhaustible, just in a brand new way. Your fight might look different now, but it is still a fight.
Love this. I do really believe we'll find the ways that we can help, even if we can't walk far/carry heavy things/go to far-away places etc etc. But whew, I have a lot of trouble with it too.
I feel this in my bones, Heather. Thank you for writing it. For me it has been a 15 year battle with chronic Lyme, most likely from a tick bite while hiking…bc I used to hike so much. I was in NC and it was my fave thing, having so much nature to explore with mountains and beach an easy drive away. At the same time I was working 100 hour weeks.
That all went away so fast and now there are no easy drives, much less energy for hiking. It took me years to build back to being able to support myself and I still have to work a 4 day week, literally sleeping or at least in bed most of my 3 days off each week.
Resistance looks way different now and that hurts. FWIW, it helps me to remember ‘doing what we can’ looks different for each of us…and that’s all we can be expected to do. It’s all we can expect ourselves to do. You bring joy to loads of us with your writing, cat pics, and online presence. I appreciate you and everyone in this thread. I believe in us, all still fighting and finding joy where we can.
god, this is just the realest damn thing. you are the best and i so appreciate how you've articulated all of this through your own history (and your own present). love you so, so much friend 🖤 (and thank you for reminding me to drop off the bags i have ALSO been collecting for the pantry!)
That last line really resonates with me. I'll try to take it with me on this long, difficult, but important journey. Thank you.
🏆