Having severe Long COVID was brutal. I didn’t find much medical help, but through trial and error I found my way back to life. I’m sharing my learnings, in the hope that they'll help others, too
Hi Nicole - I’m so glad you found me and my newsletter, so that I in turn could find you. I’m four years in and have had spurts of this non-linear recovery each year, but it’s only been in the last year that the work I’m putting into it is progressing and building on itself, albeit slowly. Adding in and testing out movement has been key, as you’ve said. I also very much appreciated your acknowledgment of the “privilege” you have had in experiencing a relatively shorter illness and recovery period than many of us. It meant a lot to me that you put that out there, so thank you. It makes me want to stick around for what’s to come in your newsletter, too.
I’ve been on Substack since last July (soon after your independence day 🎆), and recently I started a recovery tools series. I’m about at 60%, and like you, I don’t have all the answers, but some combination of things has definitely been working so I wanted to share what they are. I’m very curious to cross-reference our lists.
One question: are you back working? Same job you had before? I had to give up my non-profit executive job of many years. In fact, my SSDI administrative hearing is by phone in less than an hour, so I better get up and get ready!
Hi Amy, so glad you reached out! Hope the SSDI hearing went well. Your newsletter was in my suggestions today and I was so happy I found it, super impressed! Particularly building it while still in the middle of recovery - kudos to you.
Re work - I'm not back to working yet. My line of work (I'm in a leadership role in Tech) is very fast paced (aka high stress), and cognitively demanding. Sounds like yours is similar in that regard! I will devote the bulk of my energy to the healing process until I'm 100%, and not at risk of sliding backwards anymore (learned that the hard way). Again, a lot of privilege--I am well aware of how lucky I am to be able to do that. But while I consider myself lucky, it's also been a kind of identity loss to not be working in over a year, that I've needed to process and grieve. I imagine you can relate.
I'm also very curious to cross-reference our learnings. From the patterns I've noticed across various recovery stories, it's quite often the same broad themes. I'll share more in the next days, would love your thoughts!
Hi Nicole, thanks so much for sharing. I read this post now after your other posts. I too was at 0% last year, now I'm at 30%. Apart from the usual PEM after exercising, I developed severe light and sound sensitivity and was only able to overcome it (mostly) this year. I had to smile when seeing your fireworks picture with the TV tower. At that time, I was in bed, trying to sleep with headphones on and happy that I had just started medication that allowed me to survive NYE with just a minor crash afterwards. I find it beautiful to think that someone, on another part of the city, was actually enjoying the fireworks after having been in the same situation as me. Truly inspiring. Thanks for sharing all of this!
Hi Nuria, you're so welcome. Thanks so much for taking the time and energy to comment and share <3 Glad to hear you are on your way back to health, too, even if still a way to go.
It's beautiful indeed to think about that. It just made me teary reading your experience of the same night in the same city, and I shared it with my friends who were with me then. I remember not being able to believe I was there on that rooftop at the time. Thank you for sharing.
Nicole, thanks so much for writing this! Tearing up over here, 5 months into my LC recovery. Sounds like we have some of the same symptoms/conditions, excited to hear what worked for you. Thanks again for generously sharing and putting your precious energy into this!
Thank you for sharing your journey, Nicole. It was very difficult and truly inspiring to read. I signed up for the newsletter and will be looking forward to hearing more on how you came out of such challenging times. Lots of love.
I can relate to so much of this. I have found it to be a massive evolution in my human journey to be able to write the way I have, baring all and sharing the most vulnerable aspects of myself and journey.
I’m coming up to 6 years since finding myself waking up to complete disability by illness. With an illness I’d told doctors I’d been living with for 20years. Only to be repeatedly dismissed and gaslighted. I’m working on letting go of the anger and resentment I harbour over that but of course, it’s not easy.
For me, it was a full time (24:7) job invested into my recovery. But I figured you know what else is a full time job? Disability by chronic illness. It took 4 years to tip what felt like a 24/7 job for it to suddenly become my way of life, my way of being.
This year I’m enjoying the greatest health of my entire adult life. I’m also the truest to myself that I’ve ever been. (Wondering at the correlation between the 2?)
I have a particular interest in the role our belief system plays in our recovery so I’d love to hear about that side of it from you.
I’m also super intrigued (and also as mentioned in your last post, again, finding myself somewhat jealous), in the support you had and I look forward to hearing your take on its relevance and importance. I have found it to be utterly essential yet a lot for me to build up to and put in place for myself. I had many unmet needs and it was (in part) from this vantage point that I got started. It took a long time to put in place measures to support these needs and I’d love to understand the part this plays in recovery. Is recovery faster if you have your needs met from the off? Does it help speed up the process when you have family to love and care for you? I do feel there are times and circumstances where it may hinder (for example, if they don’t support your decision to research and make changes that for many of us are going against the medical model for example).
Anyway I’ve gone on one here! But I am seeing a faster recovery in those that have full care/support and a slower one in those that do not or do not allow themselves to lean into it fully. (Just my limited level of observation for now)
Hey Amber, thanks so much for your feedback, and I'm glad you found me on here :) A lot of what you write resonates with me, too. I do think the support system is absolutely crucial, and being believed by those closest to you. I had incredibly (life-savingly) supportive experiences there, and also very difficult ones. And yes, a support system is hard to put in place when there is (initially) no diagnosis, no common words to describe the symptoms and level of debilitation we experience, and while we don't yet have a concept of what's happening to us. While not having the energy to keep everyone around us informed, let alone to make a spreadsheet to coordinate help :) It taught me the importance of having people around me who didn't need me to have the exact right words, or even know what I needed, to show up for me <3 A life lesson if I've ever had one. Thanks for sharing your thoughts, and please keep them coming!
Wow. That’s quite a story. So sudden with no time to adjust. I’ve been living with ME for 33 years and it began very mild. I’ve declined over the years and have had lots of time to adjust. I’m glad to hear you’re getting better. “Yay!” is an understatement. Keep going! H
Hi Nicole - I’m so glad you found me and my newsletter, so that I in turn could find you. I’m four years in and have had spurts of this non-linear recovery each year, but it’s only been in the last year that the work I’m putting into it is progressing and building on itself, albeit slowly. Adding in and testing out movement has been key, as you’ve said. I also very much appreciated your acknowledgment of the “privilege” you have had in experiencing a relatively shorter illness and recovery period than many of us. It meant a lot to me that you put that out there, so thank you. It makes me want to stick around for what’s to come in your newsletter, too.
I’ve been on Substack since last July (soon after your independence day 🎆), and recently I started a recovery tools series. I’m about at 60%, and like you, I don’t have all the answers, but some combination of things has definitely been working so I wanted to share what they are. I’m very curious to cross-reference our lists.
One question: are you back working? Same job you had before? I had to give up my non-profit executive job of many years. In fact, my SSDI administrative hearing is by phone in less than an hour, so I better get up and get ready!
Glad you’re here!
Hi Amy, so glad you reached out! Hope the SSDI hearing went well. Your newsletter was in my suggestions today and I was so happy I found it, super impressed! Particularly building it while still in the middle of recovery - kudos to you.
Re work - I'm not back to working yet. My line of work (I'm in a leadership role in Tech) is very fast paced (aka high stress), and cognitively demanding. Sounds like yours is similar in that regard! I will devote the bulk of my energy to the healing process until I'm 100%, and not at risk of sliding backwards anymore (learned that the hard way). Again, a lot of privilege--I am well aware of how lucky I am to be able to do that. But while I consider myself lucky, it's also been a kind of identity loss to not be working in over a year, that I've needed to process and grieve. I imagine you can relate.
I'm also very curious to cross-reference our learnings. From the patterns I've noticed across various recovery stories, it's quite often the same broad themes. I'll share more in the next days, would love your thoughts!
Glad you're here, too!
Hi Nicole, thanks so much for sharing. I read this post now after your other posts. I too was at 0% last year, now I'm at 30%. Apart from the usual PEM after exercising, I developed severe light and sound sensitivity and was only able to overcome it (mostly) this year. I had to smile when seeing your fireworks picture with the TV tower. At that time, I was in bed, trying to sleep with headphones on and happy that I had just started medication that allowed me to survive NYE with just a minor crash afterwards. I find it beautiful to think that someone, on another part of the city, was actually enjoying the fireworks after having been in the same situation as me. Truly inspiring. Thanks for sharing all of this!
Hi Nuria, you're so welcome. Thanks so much for taking the time and energy to comment and share <3 Glad to hear you are on your way back to health, too, even if still a way to go.
It's beautiful indeed to think about that. It just made me teary reading your experience of the same night in the same city, and I shared it with my friends who were with me then. I remember not being able to believe I was there on that rooftop at the time. Thank you for sharing.
Wishing you all the best for the remaining 70%!!
Aiming for the rooftop this year! :D
Nicole, thanks so much for writing this! Tearing up over here, 5 months into my LC recovery. Sounds like we have some of the same symptoms/conditions, excited to hear what worked for you. Thanks again for generously sharing and putting your precious energy into this!
You're so welcome Maya - thanks for reading it and making the effort to leave me a comment :) Hope it'll be helpful!
Thank you for sharing your journey, Nicole. It was very difficult and truly inspiring to read. I signed up for the newsletter and will be looking forward to hearing more on how you came out of such challenging times. Lots of love.
Thank you! ♥️
Thanks for sharing this incredible story. Very lucky to call you my dear friend!!!!
Thanks for your support and your friendship, Caro!!! Very lucky to have you in my life :)
I can relate to so much of this. I have found it to be a massive evolution in my human journey to be able to write the way I have, baring all and sharing the most vulnerable aspects of myself and journey.
I’m coming up to 6 years since finding myself waking up to complete disability by illness. With an illness I’d told doctors I’d been living with for 20years. Only to be repeatedly dismissed and gaslighted. I’m working on letting go of the anger and resentment I harbour over that but of course, it’s not easy.
For me, it was a full time (24:7) job invested into my recovery. But I figured you know what else is a full time job? Disability by chronic illness. It took 4 years to tip what felt like a 24/7 job for it to suddenly become my way of life, my way of being.
This year I’m enjoying the greatest health of my entire adult life. I’m also the truest to myself that I’ve ever been. (Wondering at the correlation between the 2?)
I have a particular interest in the role our belief system plays in our recovery so I’d love to hear about that side of it from you.
I’m also super intrigued (and also as mentioned in your last post, again, finding myself somewhat jealous), in the support you had and I look forward to hearing your take on its relevance and importance. I have found it to be utterly essential yet a lot for me to build up to and put in place for myself. I had many unmet needs and it was (in part) from this vantage point that I got started. It took a long time to put in place measures to support these needs and I’d love to understand the part this plays in recovery. Is recovery faster if you have your needs met from the off? Does it help speed up the process when you have family to love and care for you? I do feel there are times and circumstances where it may hinder (for example, if they don’t support your decision to research and make changes that for many of us are going against the medical model for example).
Anyway I’ve gone on one here! But I am seeing a faster recovery in those that have full care/support and a slower one in those that do not or do not allow themselves to lean into it fully. (Just my limited level of observation for now)
Hey Amber, thanks so much for your feedback, and I'm glad you found me on here :) A lot of what you write resonates with me, too. I do think the support system is absolutely crucial, and being believed by those closest to you. I had incredibly (life-savingly) supportive experiences there, and also very difficult ones. And yes, a support system is hard to put in place when there is (initially) no diagnosis, no common words to describe the symptoms and level of debilitation we experience, and while we don't yet have a concept of what's happening to us. While not having the energy to keep everyone around us informed, let alone to make a spreadsheet to coordinate help :) It taught me the importance of having people around me who didn't need me to have the exact right words, or even know what I needed, to show up for me <3 A life lesson if I've ever had one. Thanks for sharing your thoughts, and please keep them coming!
Wow. That’s quite a story. So sudden with no time to adjust. I’ve been living with ME for 33 years and it began very mild. I’ve declined over the years and have had lots of time to adjust. I’m glad to hear you’re getting better. “Yay!” is an understatement. Keep going! H
Thank you! 😊🙏