Amy, this is SUCH OUTSTANDING COVERAGE and exactly what more of us need to see and read and experience. Thank you for putting the time, energy, heart, and devotion into all of it. It's valuable to so many communities, and I haven't found enough other sources doing this work.
And also thanks for being a friend, for putting my humble substack "interest" request front and center, and for promoting goodness all around. So many good feelings from all of this!
You always amaze me with your tenacity, your wit, and your razor-sharp writing. I learn so much about Long Covid from you -- you're my trusted source of information. (Luckily, I don't have Long Covid, but I have a strong desire to learn about and support those who do. I feel like our country has let so many people down.) Anyway, just here to say how grateful I am that you continue to share your journey. And pizza is great, but what about TACOS???
I don’t know why it still surprises me how similar all of our stories are. My 4 years is coming at the end of May and we have stunningly similar experiences. Helps me not feel alone, then angry because there’s still so much lack of knowledge in the medical community despite the similarities. Thank you for sharing your story. Puts words to my experience when I don’t have the strength to.
Thank you for sharing this epic story, Amy. What four years. I loved learning more about you, though I'm sorry it's happening in this particular way, and so sorry and angry to hear about the gaslighting from your primary care doctor. You should have been given much better support right from the beginning. And reading about the ups and downs of some recovery and then crashes, ooof — how hopeful and then how discouraging. Thank you for sharing all of this with us; it so helps bring greater understanding about Long Covid. Oh, and the texts and memes were hilarious! Laughter really is a salve in chronic illness and in life. I LOVE PIZZA too. 😂
Thank you for sharing your journey. I too have the unfortunate distinction of having ME/CFS and Long Covid and MCAS is my most recent addition to the mix, along with some heavy grief. Reading your story made me realize how isolated I’ve become. I feel like no one can understand what I’ve been going through. The MCAS has been the biggest challenge. I would love to hear more about what you’ve found to be helpful, lifestyle choices, supplements, etc. not in a prescriptive way, but maybe in a hopeful way. ☺️thank you, again! Julie
I'm not a LC patient and I'm no longer an ME/CFS patient. I hope that gives people with LC (and ME/CFS) a bit more hope.
When the pandemic started one of my first thoughts was that ME/CFS was going to finally get the serious attention it deserves.
I don't come back to these patient support spaces enough, to be honest because it triggers all the trauma that took place over decades of medical gaslighting.
I can't over state the importance of patients like Amy who use their limited energy to build and support community.
Hang in there (everyone) and never give up hope. And care for yourselves (physically and emotionally).🙏🏻
Thank you Amy for another great post. One thing that stood out was the estimation of improvement in LC. I really struggle with percentage of improvement. I’m no longer in a catatonic state completely breathless, hiding from all stimuli, and hoping I would suddenly die. I am able to attend my sons’ activities most of the time as long as I do absolutely nothing else. So big improvement from 2yrs ago and I’m grateful. But compared to the pre covid me, I’m at best 25% of that person. I traveled for work, speaking at a lot of conferences, while maintaining endurance training, an active social life & a sex life my friends were jealous of. My teenagers struggled to keep up with me. Now I look at my calendar for the week and strategize where to use my spoons, when I can rest, and what can I cancel if I’m not ok. If I explain this to people, the comment is usually, “but you’re better right?”. Umm yeah. I guess.
Yes please to there being a recovery in pictures! Outstanding article on illness in pictures…inspired to contemplate running something similar.
Thanks so much for sharing so many aspects to this stage of your journey, you incredible being.
I’m 6 years in this June and only walked my first ten mile (mainly flat) walk last September. It occurred to me it had probably been ten years since I was last able to do that. This year I’ve climbed mountains I haven’t been able to climb in many years. I still have to time it with where i am in my menstrual cycle. But even on my most challenged times of the month, I can actually do stuff now like go out for the day on a bit of a (decent enough) walk. Whereas I couldn’t do that at all before this year.
I’d love to see more on how you approached what you’ve done in addition to what’s helped on your recovery journey. I am fascinated in chronic illness journeys so read as many as I can. And I’m starting to see those of us who have done all the things and are yet still chronically unwell. So I don’t know that it’s so much about what we’ve done but how we’ve done it and our approach to it. Like, for me, I’ve been interested in the part our belief system plays for a while. But also what happens when we learn to let our body lead the way. To listen to what it has to say and respond accordingly. This approach has led me to doing all the things but in a very intentional and one step at a time way. I was never looking for a cure, a way of controlling/managing or fixing. I did it with the least amount of pressure and stress I could (unusual for me). And I had some brutal lessons to learn along the way (no more pushing, striving, forcing or driving myself forwards being one of them). I’m becoming more and more interested in this aspect of our journeys and am rewriting my book so that it comes from this angle.
Thanks for the reflections and updates and hoping that you continue improving each day! You have a way with words that draw the reader in and makes me think about and appreciate what I have in life!
This is one of my favorite posts of yours Amy! You do an amazing job of bringing your reader along on your journey. I’m glad to hear there’s been some improvement in your condition, and I really hope it continues for you. I think the combination of personal stories with factual content is really helpful for everyone - not just those with Long Covid. xo Paula
Hiii I'm a newer follower, with a pretty similar origin story of being in care provision and being sick with longcovid since acute infection in the first wave. Always happy to hear what has worked for you and also incredible to see photos of your journey -- I try to stay anonymous in mine but you're welcome to snoop since you like to know who your followers/readers are! https://couchcrafts.wordpress.com/
I really appreciate you sharing your story. This is such a great post full of resources.
I have some of these weird symptoms too - the eczema just on the right arm!! Why is it just on one side?! And little clots. This actually really helps to feel less alone. Thank you.
Oh your story of your doctor being useless is hitting home right now. When they say you have to be your own biggest health advocate they sure as hell mean it. Some notes
1. Remember that song “with arms wide opppppeeennn” it’s playing in my head now with those hiking photos
2. I will only ask you what you are reading and how are the babies
3. Speaking of babies, Zira Bowie is looking good!!
4. Flesh prison lol
5. Thank you for sharing your stories. Health and our bodies can be a mysterious thing and we need each other to make sense of it sometimes
Thank you so much for using your spoons to share your experiences with us Amy. It really helps me thru my own journey. I would love to see “part two” and hear what has worked for you. I am 21 mos in, and always happy to hear positive stories. Plus, you make me laugh! Thank you, thank you, thank you.
Amy, this is SUCH OUTSTANDING COVERAGE and exactly what more of us need to see and read and experience. Thank you for putting the time, energy, heart, and devotion into all of it. It's valuable to so many communities, and I haven't found enough other sources doing this work.
And also thanks for being a friend, for putting my humble substack "interest" request front and center, and for promoting goodness all around. So many good feelings from all of this!
You always amaze me with your tenacity, your wit, and your razor-sharp writing. I learn so much about Long Covid from you -- you're my trusted source of information. (Luckily, I don't have Long Covid, but I have a strong desire to learn about and support those who do. I feel like our country has let so many people down.) Anyway, just here to say how grateful I am that you continue to share your journey. And pizza is great, but what about TACOS???
I don’t know why it still surprises me how similar all of our stories are. My 4 years is coming at the end of May and we have stunningly similar experiences. Helps me not feel alone, then angry because there’s still so much lack of knowledge in the medical community despite the similarities. Thank you for sharing your story. Puts words to my experience when I don’t have the strength to.
Thank you for sharing. You look amazing and I'm glad your recovery is headed in the right direction.
This switch that was flipped and managed to create havoc on our lives sucks. Then again, we made it to celebrate another spoon day.
Rosemary
What a four years for sure. Thank you for sharing all of this. Also, you have awesome hair 😊
Thank you for sharing this epic story, Amy. What four years. I loved learning more about you, though I'm sorry it's happening in this particular way, and so sorry and angry to hear about the gaslighting from your primary care doctor. You should have been given much better support right from the beginning. And reading about the ups and downs of some recovery and then crashes, ooof — how hopeful and then how discouraging. Thank you for sharing all of this with us; it so helps bring greater understanding about Long Covid. Oh, and the texts and memes were hilarious! Laughter really is a salve in chronic illness and in life. I LOVE PIZZA too. 😂
Thank you for sharing your journey. I too have the unfortunate distinction of having ME/CFS and Long Covid and MCAS is my most recent addition to the mix, along with some heavy grief. Reading your story made me realize how isolated I’ve become. I feel like no one can understand what I’ve been going through. The MCAS has been the biggest challenge. I would love to hear more about what you’ve found to be helpful, lifestyle choices, supplements, etc. not in a prescriptive way, but maybe in a hopeful way. ☺️thank you, again! Julie
I'm not a LC patient and I'm no longer an ME/CFS patient. I hope that gives people with LC (and ME/CFS) a bit more hope.
When the pandemic started one of my first thoughts was that ME/CFS was going to finally get the serious attention it deserves.
I don't come back to these patient support spaces enough, to be honest because it triggers all the trauma that took place over decades of medical gaslighting.
I can't over state the importance of patients like Amy who use their limited energy to build and support community.
Hang in there (everyone) and never give up hope. And care for yourselves (physically and emotionally).🙏🏻
Thank you Amy for another great post. One thing that stood out was the estimation of improvement in LC. I really struggle with percentage of improvement. I’m no longer in a catatonic state completely breathless, hiding from all stimuli, and hoping I would suddenly die. I am able to attend my sons’ activities most of the time as long as I do absolutely nothing else. So big improvement from 2yrs ago and I’m grateful. But compared to the pre covid me, I’m at best 25% of that person. I traveled for work, speaking at a lot of conferences, while maintaining endurance training, an active social life & a sex life my friends were jealous of. My teenagers struggled to keep up with me. Now I look at my calendar for the week and strategize where to use my spoons, when I can rest, and what can I cancel if I’m not ok. If I explain this to people, the comment is usually, “but you’re better right?”. Umm yeah. I guess.
Yes please to there being a recovery in pictures! Outstanding article on illness in pictures…inspired to contemplate running something similar.
Thanks so much for sharing so many aspects to this stage of your journey, you incredible being.
I’m 6 years in this June and only walked my first ten mile (mainly flat) walk last September. It occurred to me it had probably been ten years since I was last able to do that. This year I’ve climbed mountains I haven’t been able to climb in many years. I still have to time it with where i am in my menstrual cycle. But even on my most challenged times of the month, I can actually do stuff now like go out for the day on a bit of a (decent enough) walk. Whereas I couldn’t do that at all before this year.
I’d love to see more on how you approached what you’ve done in addition to what’s helped on your recovery journey. I am fascinated in chronic illness journeys so read as many as I can. And I’m starting to see those of us who have done all the things and are yet still chronically unwell. So I don’t know that it’s so much about what we’ve done but how we’ve done it and our approach to it. Like, for me, I’ve been interested in the part our belief system plays for a while. But also what happens when we learn to let our body lead the way. To listen to what it has to say and respond accordingly. This approach has led me to doing all the things but in a very intentional and one step at a time way. I was never looking for a cure, a way of controlling/managing or fixing. I did it with the least amount of pressure and stress I could (unusual for me). And I had some brutal lessons to learn along the way (no more pushing, striving, forcing or driving myself forwards being one of them). I’m becoming more and more interested in this aspect of our journeys and am rewriting my book so that it comes from this angle.
Thanks for the reflections and updates and hoping that you continue improving each day! You have a way with words that draw the reader in and makes me think about and appreciate what I have in life!
This is one of my favorite posts of yours Amy! You do an amazing job of bringing your reader along on your journey. I’m glad to hear there’s been some improvement in your condition, and I really hope it continues for you. I think the combination of personal stories with factual content is really helpful for everyone - not just those with Long Covid. xo Paula
Hiii I'm a newer follower, with a pretty similar origin story of being in care provision and being sick with longcovid since acute infection in the first wave. Always happy to hear what has worked for you and also incredible to see photos of your journey -- I try to stay anonymous in mine but you're welcome to snoop since you like to know who your followers/readers are! https://couchcrafts.wordpress.com/
Amy, thank you so much for the shout out!
I really appreciate you sharing your story. This is such a great post full of resources.
I have some of these weird symptoms too - the eczema just on the right arm!! Why is it just on one side?! And little clots. This actually really helps to feel less alone. Thank you.
Oh your story of your doctor being useless is hitting home right now. When they say you have to be your own biggest health advocate they sure as hell mean it. Some notes
1. Remember that song “with arms wide opppppeeennn” it’s playing in my head now with those hiking photos
2. I will only ask you what you are reading and how are the babies
3. Speaking of babies, Zira Bowie is looking good!!
4. Flesh prison lol
5. Thank you for sharing your stories. Health and our bodies can be a mysterious thing and we need each other to make sense of it sometimes
Thank you so much for using your spoons to share your experiences with us Amy. It really helps me thru my own journey. I would love to see “part two” and hear what has worked for you. I am 21 mos in, and always happy to hear positive stories. Plus, you make me laugh! Thank you, thank you, thank you.