I’m about 11 months into my journey with LC and I’m just coming out of a pretty bad 9 day flare up so reading this seriously gives me so much hope. Thank you for sharing and I do hope you share more about your learnings. I can’t wait to have and enjoy “regular problems” again too. 😂
Hi, I was interested to hear about your recent flare up. I think I am experiencing one of these too. Please can you tell me do you use the Visible app and has your flare up shown up on that?
What I found to be most helpful was symptom tracking each day. That helped me recognize patterns in my flare ups like what was causing them, how often they were happening and how long they were happening for. Before I started pacing, I was getting flare ups pretty consistently about every other week. Once I learned to conserve my energy, my flare ups seem to only happen when I’ve really pushed myself. Looking back, the week before this most recent flare ups seem, I tried moving up to the next level of my physical therapy by adding in resistance bands and increased my walking time from 12 to 15 mins. I think the combination of those things were too much. Hope that helps. I wrote an article about the post Covid clinic I went to and what I learned about pacing. Check it out if you want a more detailed physical therapy plan.
This is so great to hear! Glad you are recovered. I look forward to taking walks sometime this year (or two least experimenting with how that looks for me) and working more. Please do keep up the writing here.
This is all such incredible read 🤩 I’m so happy life has turned out this way and you’re still here sharing your wisdom🙏
Fully recovered? What a wonderful statement.
I’ve kept all my changes up too, I love the changes I’ve made in my life! I’m thankful for the gift of disability by illness for this reason. Without it, I wouldn’t have had the space to respond to my body in the way I have.
It’s more of a remission status for me - for the past 18 months or so - and now I’m nearly 7 years in!
Though I am beginning to feel more fully healed (it’s happening on some level) and I always did believe in its possibility which has been huge.
Please keep writing, sharing all your updates. These are important for you to reflect on as well as share with your community.🩵
You’re right, the writing is important for me to reflect, too. Still hard to pause and do that, even after all this :) On the other hand, I also think it’s been important for me to focus on other things completely for a while and let go, as part of the journey. While continuing to listen to and take care of my body, of course. Balance, as always :)
“ These days, I barely think about long Covid…” THIS is my new goal. I’m two and a half years into this nightmare with a body that has so far not responded to any treatment or therapy. My goals have shifted from the full-on ‘Get my life back’ to the now more modest ‘20% reduction in symptoms’ but I have a new goal after reading your post.
Just imagine. Living your life without having to think about long Covid at all. What a wonderful dream. I’m so pleased you’re living it!
I’m at about 80% and leveling up each week. Can’t wait to write my version of this post. Thank you for putting this out into the world! And enjoy your good health and normal problems 🙃☺️
I don’t mask indoors anymore, haven’t done it consistently since I’ve been out of the worst phase (when I couldn’t leave the house regardless). I was careful for a long time, like not hanging out with friends when they had a cold, not being in crowds indoors (which was also still a lot for my nervous system for a while, anyway). I still mask on planes sometimes but not every time, and I usually don’t on public transport. I would if someone were coughing right next to me and I had a mask on me though. In winter I sometimes do on public transport, if it’s crowded, or if there’s a COVID or flu wave going on.
For me, it has been a careful consideration of balancing where I was in my recovery (and hence the likely effects of a new infection on my battered immune system), and now knowing that I’ll be ok and will be able to recover even if I were to get sick again. Balancing, on the other side, that I also want to live a normal life and enjoy it. I think everyone will come out differently on that calculation and I understand every single person who does mask.
This was probably more detail than you asked for - hope it’s helpful!
thanks for the honest response! can i ask what led to reducing community care and precautions like masking? unfortunately like other times folks with LC have said they’ve stopped taking precautions, i’m baffled. if folks understand that damage is cumulative and have experienced some of the possible horror show that LC is, i personally don’t understand why unmasking is appealing at all? especially in high risk places like airports, airplanes, medical offices, etc. I operate from a place of disability justice and treat those with covid and long covid in my work, and the ease of a face covering far outweighs the difficulty of even a mild infection. Here’s a video of current data, and some friendly encouragement to consider masking in high risk situations at the very least, as we know up to 60% of infections are asymptomatic and we could all be passing it on to others without knowing it. glad you recovered, and hope it stays that way, although idk how it could with an unknown number of asymptomatic infections potentially affecting immune systems, organs, heart, brain, vascular system, etc of those who take no precautions.
I teared up reading this. Thank you for posting your recovery story, I’m so happy for you ❤️🩹
I’m so glad to hear it’s meaningful to you, Talia. ❤️ all the best to you!
I’m about 11 months into my journey with LC and I’m just coming out of a pretty bad 9 day flare up so reading this seriously gives me so much hope. Thank you for sharing and I do hope you share more about your learnings. I can’t wait to have and enjoy “regular problems” again too. 😂
Crossing my fingers for you!! For “regular” problems :) ❤️🩹
Hi, I was interested to hear about your recent flare up. I think I am experiencing one of these too. Please can you tell me do you use the Visible app and has your flare up shown up on that?
What I found to be most helpful was symptom tracking each day. That helped me recognize patterns in my flare ups like what was causing them, how often they were happening and how long they were happening for. Before I started pacing, I was getting flare ups pretty consistently about every other week. Once I learned to conserve my energy, my flare ups seem to only happen when I’ve really pushed myself. Looking back, the week before this most recent flare ups seem, I tried moving up to the next level of my physical therapy by adding in resistance bands and increased my walking time from 12 to 15 mins. I think the combination of those things were too much. Hope that helps. I wrote an article about the post Covid clinic I went to and what I learned about pacing. Check it out if you want a more detailed physical therapy plan.
So important to gain an understanding. Thanks for sharing!
https://open.substack.com/pub/thewellnessaesthetic/p/my-experience-at-the-mayo-clinics?r=4e5la3&utm_medium=ios
Thank you!
This is so great to hear! Glad you are recovered. I look forward to taking walks sometime this year (or two least experimenting with how that looks for me) and working more. Please do keep up the writing here.
This post means a lot to me. Thank you for sharing. It gives me hope in my own recovery
You’re very welcome Joshua, thanks for leaving a note. All the best for your recovery ❤️🩹
I am so happy to hear this. Continued blessings to you ❤️🌹❤️🌹
Thank you Anne 🙏 I hope you are doing well, too. ❤️
This is all such incredible read 🤩 I’m so happy life has turned out this way and you’re still here sharing your wisdom🙏
Fully recovered? What a wonderful statement.
I’ve kept all my changes up too, I love the changes I’ve made in my life! I’m thankful for the gift of disability by illness for this reason. Without it, I wouldn’t have had the space to respond to my body in the way I have.
It’s more of a remission status for me - for the past 18 months or so - and now I’m nearly 7 years in!
Though I am beginning to feel more fully healed (it’s happening on some level) and I always did believe in its possibility which has been huge.
Please keep writing, sharing all your updates. These are important for you to reflect on as well as share with your community.🩵
Thank you Amber! 😊🙏 will do.
You’re right, the writing is important for me to reflect, too. Still hard to pause and do that, even after all this :) On the other hand, I also think it’s been important for me to focus on other things completely for a while and let go, as part of the journey. While continuing to listen to and take care of my body, of course. Balance, as always :)
Glad to hear it’s been a long remission for you!
“ These days, I barely think about long Covid…” THIS is my new goal. I’m two and a half years into this nightmare with a body that has so far not responded to any treatment or therapy. My goals have shifted from the full-on ‘Get my life back’ to the now more modest ‘20% reduction in symptoms’ but I have a new goal after reading your post.
Just imagine. Living your life without having to think about long Covid at all. What a wonderful dream. I’m so pleased you’re living it!
THIS POST ❤️🔥❤️🔥❤️🔥.
I’m at about 80% and leveling up each week. Can’t wait to write my version of this post. Thank you for putting this out into the world! And enjoy your good health and normal problems 🙃☺️
hi, i’m a new reader and am curious if you still mask indoors or take other precautions?
Hi Rebecca! Welcome, and thanks for reading!
I don’t mask indoors anymore, haven’t done it consistently since I’ve been out of the worst phase (when I couldn’t leave the house regardless). I was careful for a long time, like not hanging out with friends when they had a cold, not being in crowds indoors (which was also still a lot for my nervous system for a while, anyway). I still mask on planes sometimes but not every time, and I usually don’t on public transport. I would if someone were coughing right next to me and I had a mask on me though. In winter I sometimes do on public transport, if it’s crowded, or if there’s a COVID or flu wave going on.
For me, it has been a careful consideration of balancing where I was in my recovery (and hence the likely effects of a new infection on my battered immune system), and now knowing that I’ll be ok and will be able to recover even if I were to get sick again. Balancing, on the other side, that I also want to live a normal life and enjoy it. I think everyone will come out differently on that calculation and I understand every single person who does mask.
This was probably more detail than you asked for - hope it’s helpful!
https://open.substack.com/pub/thegauntlet/p/the-pandemic-has-been-a-portal-for
thanks for the honest response! can i ask what led to reducing community care and precautions like masking? unfortunately like other times folks with LC have said they’ve stopped taking precautions, i’m baffled. if folks understand that damage is cumulative and have experienced some of the possible horror show that LC is, i personally don’t understand why unmasking is appealing at all? especially in high risk places like airports, airplanes, medical offices, etc. I operate from a place of disability justice and treat those with covid and long covid in my work, and the ease of a face covering far outweighs the difficulty of even a mild infection. Here’s a video of current data, and some friendly encouragement to consider masking in high risk situations at the very least, as we know up to 60% of infections are asymptomatic and we could all be passing it on to others without knowing it. glad you recovered, and hope it stays that way, although idk how it could with an unknown number of asymptomatic infections potentially affecting immune systems, organs, heart, brain, vascular system, etc of those who take no precautions.
https://www.instagram.com/reel/DMS8Br8sIyF/
So happy for you! It’s encouraging to know that many people ARE recovering from this.