Thank you for this. I am older and retired years ago, but, 3.5 years in with LC fatigue, cannot do what I used to do either - active volunteer work, Yoga 3x a week, and playing chamber music weekly in a Baroque trio.
I appreciate how calmly and clearly you describe our shared condition. My husband is your Beth and I have similar emotions about being taken care of. Yesterday he urged me to “just” accept it after I shared a different essay with him, which he found to be full of anger. He then gave me a YouTube link, one of many over the years, on using gratitude to recover from CFS. Right.
But it is the isolation, which you describe so well, that gets to me and adds so much grief. It is a hard, spiritual/emotional journey. I appreciate your writing, especially because you gave of yourself to share it. You didn’t have to, but you did, and it helps us.
Susan, I wish I had more in me right now to give this the response it deserves. I don't. But please know the kind words landed, and I'm grateful. I'm sorry we share this particular club. Sending good thoughts your way. Be well.
I had to skim this because I too am in a bad crash, not as extreme as yours but I've been unable to work for months. I really relate to what you said about not being able to do a "helpinf people" job anymore, and how tough that is. I was a support/afterschool teacher until my health collapsed from long covid in November. I spent every day working with children trying to create a fun and safe space for them, and now I don't interact in person with anyone except my parents and doctors. If I recover enough to work again, I will have to find new work, and it will look very different. Accepting help is something I needed to learn how to do, but losing so much of my ability to help others has been incredibly difficult, and I understand some of what you're feeling.
Thank you for this. Fellow LC here. Also hEDS and CCI and possible CSF leak. That gravitational force sucking all of your energy away - I relate to that so much. I just wanted to say thank you and I see you 💚
Thank you for this. Fellow traveler in the hardest sense. hEDS, CCI, possible CSF leak on top of LC, your body is fighting a war on multiple fronts and you still took a moment to reach out. That means a lot.
The gravitational force metaphor came from trying to describe something I couldn’t explain any other way. Knowing it landed for you is exactly why I write. You are seen too. 💚
Hi Fred. I’m so sorry this has happened to you. I have had similar experiences with very severe ME/CFS crashes. Last year in January, I moved to a two story house and within the first month I suddenly crashed into extremely severe. I lost my part time work from home job, I lost the ability to tolerate any light, phone use, completely lost the ability to walk or sit up. Hell.
Over the next six months of complete bedrest, I did slowly make improvements until I could handle a little bit of phone, read some again, sit up a little. Now that it has been over one year, I can finally walk a few steps again, sit up a lot, use my brain most of the day, although I am still stuck on the first floor, still can’t work, and I am not able to consistently walk all the way to the bathroom. However, I am still slowly improving.
I know how existentially horrific it can feel to be at the bottom of an extreme crash. I want my story to offer some hope but also a realistic timeline for a baseline-shifting crash. I’ve spoken to a lot of people who have managed to slowly come back out of very severe. I think it happens more often than many people think. A common timeline I see is 1-2 years to come back to moderate to mild. Of course, I hope that you will pull out of this crash faster than that. You will be in my thoughts.
Thank you for sharing this. What you described, I recognize it. I live there too.
What you said about timeline is something I genuinely needed to hear. I think the dominant narrative in these spaces sometimes skews toward either false optimism or permanent loss, hearing that there’s middle ground, that people do climb out of very severe ME crashes, but that it takes time and rest, is actually the most useful framing I’ve encountered. The 1-2 year window isn’t discouraging to me. It’s orienting.
I’m glad you’re still moving in the right direction. Slow improvement after a baseline-shifting crash is still improvement.
I’m going to hold onto that. Thanks again for sharing some hope and your perspective with me. Be well.
So very sorry you’re in this position. That grief is real and will hit you at odd moments (mine is those particularly glorious mornings where I would have headed out on a hike but no longer can) but it does get better as you learn new routines and limits. And rest is the way through to better function (at least I hope that will be the case for you).
Apply for SSDI. Find someone to help you. Expect initial denial and appeal. That’s their process.
And please please rest. Don’t push yourself. As difficult as that is.
If your wife is anything like my husband, thank her. Often.
Crossing my fingers that it does improve enough that you can at least get back upstairs.
I am so sorry this is happening to you! I feel every word of this. ME is a cruel disease. Do all that you can to prepare for the eventuality that you can’t return to work. I know that sounds terrible, but you may not have a choice. (Voice of experience here.) I don’t like to give unsolicited advice (even though I just did), but I’ve been where you are now, so please know that my words come from a place of caring. I wish I could spare you what you’re going through!
Thank you for this. I am older and retired years ago, but, 3.5 years in with LC fatigue, cannot do what I used to do either - active volunteer work, Yoga 3x a week, and playing chamber music weekly in a Baroque trio.
I appreciate how calmly and clearly you describe our shared condition. My husband is your Beth and I have similar emotions about being taken care of. Yesterday he urged me to “just” accept it after I shared a different essay with him, which he found to be full of anger. He then gave me a YouTube link, one of many over the years, on using gratitude to recover from CFS. Right.
But it is the isolation, which you describe so well, that gets to me and adds so much grief. It is a hard, spiritual/emotional journey. I appreciate your writing, especially because you gave of yourself to share it. You didn’t have to, but you did, and it helps us.
Susan, I wish I had more in me right now to give this the response it deserves. I don't. But please know the kind words landed, and I'm grateful. I'm sorry we share this particular club. Sending good thoughts your way. Be well.
I had to skim this because I too am in a bad crash, not as extreme as yours but I've been unable to work for months. I really relate to what you said about not being able to do a "helpinf people" job anymore, and how tough that is. I was a support/afterschool teacher until my health collapsed from long covid in November. I spent every day working with children trying to create a fun and safe space for them, and now I don't interact in person with anyone except my parents and doctors. If I recover enough to work again, I will have to find new work, and it will look very different. Accepting help is something I needed to learn how to do, but losing so much of my ability to help others has been incredibly difficult, and I understand some of what you're feeling.
I’m sending you good thoughts. Be well.
I just want to thank you for all you do to communicate the reality of this horrible condition. It matters so much.
Thank you for this. Fellow LC here. Also hEDS and CCI and possible CSF leak. That gravitational force sucking all of your energy away - I relate to that so much. I just wanted to say thank you and I see you 💚
Thank you for this. Fellow traveler in the hardest sense. hEDS, CCI, possible CSF leak on top of LC, your body is fighting a war on multiple fronts and you still took a moment to reach out. That means a lot.
The gravitational force metaphor came from trying to describe something I couldn’t explain any other way. Knowing it landed for you is exactly why I write. You are seen too. 💚
Hi Fred. I’m so sorry this has happened to you. I have had similar experiences with very severe ME/CFS crashes. Last year in January, I moved to a two story house and within the first month I suddenly crashed into extremely severe. I lost my part time work from home job, I lost the ability to tolerate any light, phone use, completely lost the ability to walk or sit up. Hell.
Over the next six months of complete bedrest, I did slowly make improvements until I could handle a little bit of phone, read some again, sit up a little. Now that it has been over one year, I can finally walk a few steps again, sit up a lot, use my brain most of the day, although I am still stuck on the first floor, still can’t work, and I am not able to consistently walk all the way to the bathroom. However, I am still slowly improving.
I know how existentially horrific it can feel to be at the bottom of an extreme crash. I want my story to offer some hope but also a realistic timeline for a baseline-shifting crash. I’ve spoken to a lot of people who have managed to slowly come back out of very severe. I think it happens more often than many people think. A common timeline I see is 1-2 years to come back to moderate to mild. Of course, I hope that you will pull out of this crash faster than that. You will be in my thoughts.
Thank you for sharing this. What you described, I recognize it. I live there too.
What you said about timeline is something I genuinely needed to hear. I think the dominant narrative in these spaces sometimes skews toward either false optimism or permanent loss, hearing that there’s middle ground, that people do climb out of very severe ME crashes, but that it takes time and rest, is actually the most useful framing I’ve encountered. The 1-2 year window isn’t discouraging to me. It’s orienting.
I’m glad you’re still moving in the right direction. Slow improvement after a baseline-shifting crash is still improvement.
I’m going to hold onto that. Thanks again for sharing some hope and your perspective with me. Be well.
So very sorry you’re in this position. That grief is real and will hit you at odd moments (mine is those particularly glorious mornings where I would have headed out on a hike but no longer can) but it does get better as you learn new routines and limits. And rest is the way through to better function (at least I hope that will be the case for you).
Apply for SSDI. Find someone to help you. Expect initial denial and appeal. That’s their process.
And please please rest. Don’t push yourself. As difficult as that is.
If your wife is anything like my husband, thank her. Often.
Crossing my fingers that it does improve enough that you can at least get back upstairs.
I am so sorry this is happening to you! I feel every word of this. ME is a cruel disease. Do all that you can to prepare for the eventuality that you can’t return to work. I know that sounds terrible, but you may not have a choice. (Voice of experience here.) I don’t like to give unsolicited advice (even though I just did), but I’ve been where you are now, so please know that my words come from a place of caring. I wish I could spare you what you’re going through!