Thank you for making these videos! Just found your channel and it’s really helping me feel less alone. I live in NYC, I’m 32 years old and got covid the first time jan 1 2022 and experienced symptoms for months after. I then got covid a second time in may 2022 and experienced around round of symptoms. I have finally gotten an official diagnosis of long covid! Thank you for sharing your journey!!
I’m so sorry that you are also in this terrible club! Making these videos helps me feel less alone, and I’m so glad that watching them helps you feel the same ❤️
@@ksiberine thank you!!! I found your channel today and I’m watching as many videos as I have the energy to watch!! It very helpful thank you!!! I don’t know anyone else with long covid so it’s nice to virtually meet someone in the same boat!
Relate so much to what you’re talking about 💐 One of the great pieces of advice I got is to think about why stand when you can sit, and why sit when you can lie down? Doing the less-mainstream way often helps conserve that physical energy for something you’d rather *choose* to do later on rather than spending it physically on something that doesn’t matter as much in terms of changing whatever activity you’re trying to do in the moment. Have you tried using a physical planner book? I found that particularly helpful & enlightening, especially when blocking out travel time for different activities, which is often easily discounted and underestimated and the physical & cognitive spoon cost in doing so. I use an aqua-colored Pilot Frixion erasable pen to block out the travel time, and it’s amazing to see all the aqua on a weekly planner spread page, and knowing all of that, is travel time. Visually seeing those blocks has helped with better understanding the larger picture of how long something actually costs, spoon-wise (ex: more than 1/2 a day for something like a Dr.’s or rehab appointment when you include travel time, instead of thinking the Dr.’s appointment is only 10-15 min. and not fully factoring in the true cumulative energy cost for everything else that goes along with a Dr.’s appointment, like time spent commuting, then parking, walking to the lobby, checking in, waiting in the waiting room, getting labwork, seeing the actual Dr., scheduling a follow-up appointment, waiting at the pharmacy for meds, getting some food or eating a snack or meal, etc.). The most eye-opening realization for me is that everything that’s involved with cooking takes me now time over 4 days, as opposed to all compressed into an afternoon, like before long covid & brain injury, due in large part, to the cognitive and physical exhaustion. It took me a while to realize that it actually now takes me this long because of the cognitive dissociation with the idea I formerly had in my mind about how long something *should* take me, based on how things used to be for me or my fellow peers, vs. how long it *actually* takes me, based on how things are, as of right now. I’ve come to realize there’s a constant redefinition of self, everyday, although who I am, at my core, is still the same, just the way it’s expressed continues to evolve and change. Unsure if it’ll help you or not, but removing stimuli from the environment also has helped, not just the environment you *want* to be in, but also all the other environments you *need* to be in. Specifically, using noise-canceling headphones &/or earplugs, dark sunglasses, and laying down on a yoga map in a quiet, dark room, before slowly switching activities. Combined with arriving later after events start and leaving early, these modification strategies have helped to keep the cognitive & physical energy cost down lower to make it more likely I can participate in activities I *want* to do (like go to a museum event) despite doing other activities I *have* or *get* to do (like grocery shop) in the same day, or series of days. I sometimes feel a little self-conscious when I’m utilizing these accomodative aids, such as large noise-cancelling earphones and dark sunglasses, especially since I can feel self-conscious in noticing when others are staring, especially since I prefer not to have that kind of staring, voyeristic attention from strangers, but I try to actively counter that self-doubt by reminding myself that these devices are there to help me so that I can last longer doing the things I actually enjoy, want to do, and with those I love, and when I actually started seeing that they did empirically allow me to function better for longer in my chosen environments, I came around to embracing their utilization more because they made such a meaningful difference in terms of quality of life, & I’m incredibly thankful for them & glad. Sending lots of good wishes ✨ Keep up the great work!
Thanks again for the inspiration! I wrote a blog post about it here: www.howtotbi.com/post/rtv-respond-to-video-my-long-haul-covid-journey-crashing-and-post-exertion-symptom-exacerbation
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Thank you for making these videos! Just found your channel and it’s really helping me feel less alone. I live in NYC, I’m 32 years old and got covid the first time jan 1 2022 and experienced symptoms for months after. I then got covid a second time in may 2022 and experienced around round of symptoms. I have finally gotten an official diagnosis of long covid! Thank you for sharing your journey!!
I’m so sorry that you are also in this terrible club! Making these videos helps me feel less alone, and I’m so glad that watching them helps you feel the same ❤️
@@ksiberine thank you!!! I found your channel today and I’m watching as many videos as I have the energy to watch!! It very helpful thank you!!! I don’t know anyone else with long covid so it’s nice to virtually meet someone in the same boat!
So very sorry 😞 I'm doing same. Try to keep faith 🙏 blessings
Thank you for your kind words ❤️Sending prayers for healing your way.
We are praying for you. See psalm 91:4.
Relate so much to what you’re talking about 💐 One of the great pieces of advice I got is to think about why stand when you can sit, and why sit when you can lie down? Doing the less-mainstream way often helps conserve that physical energy for something you’d rather *choose* to do later on rather than spending it physically on something that doesn’t matter as much in terms of changing whatever activity you’re trying to do in the moment.
Have you tried using a physical planner book? I found that particularly helpful & enlightening, especially when blocking out travel time for different activities, which is often easily discounted and underestimated and the physical & cognitive spoon cost in doing so. I use an aqua-colored Pilot Frixion erasable pen to block out the travel time, and it’s amazing to see all the aqua on a weekly planner spread page, and knowing all of that, is travel time. Visually seeing those blocks has helped with better understanding the larger picture of how long something actually costs, spoon-wise (ex: more than 1/2 a day for something like a Dr.’s or rehab appointment when you include travel time, instead of thinking the Dr.’s appointment is only 10-15 min. and not fully factoring in the true cumulative energy cost for everything else that goes along with a Dr.’s appointment, like time spent commuting, then parking, walking to the lobby, checking in, waiting in the waiting room, getting labwork, seeing the actual Dr., scheduling a follow-up appointment, waiting at the pharmacy for meds, getting some food or eating a snack or meal, etc.).
The most eye-opening realization for me is that everything that’s involved with cooking takes me now time over 4 days, as opposed to all compressed into an afternoon, like before long covid & brain injury, due in large part, to the cognitive and physical exhaustion. It took me a while to realize that it actually now takes me this long because of the cognitive dissociation with the idea I formerly had in my mind about how long something *should* take me, based on how things used to be for me or my fellow peers, vs. how long it *actually* takes me, based on how things are, as of right now. I’ve come to realize there’s a constant redefinition of self, everyday, although who I am, at my core, is still the same, just the way it’s expressed continues to evolve and change.
Unsure if it’ll help you or not, but removing stimuli from the environment also has helped, not just the environment you *want* to be in, but also all the other environments you *need* to be in. Specifically, using noise-canceling headphones &/or earplugs, dark sunglasses, and laying down on a yoga map in a quiet, dark room, before slowly switching activities. Combined with arriving later after events start and leaving early, these modification strategies have helped to keep the cognitive & physical energy cost down lower to make it more likely I can participate in activities I *want* to do (like go to a museum event) despite doing other activities I *have* or *get* to do (like grocery shop) in the same day, or series of days.
I sometimes feel a little self-conscious when I’m utilizing these accomodative aids, such as large noise-cancelling earphones and dark sunglasses, especially since I can feel self-conscious in noticing when others are staring, especially since I prefer not to have that kind of staring, voyeristic attention from strangers, but I try to actively counter that self-doubt by reminding myself that these devices are there to help me so that I can last longer doing the things I actually enjoy, want to do, and with those I love, and when I actually started seeing that they did empirically allow me to function better for longer in my chosen environments, I came around to embracing their utilization more because they made such a meaningful difference in terms of quality of life, & I’m incredibly thankful for them & glad.
Sending lots of good wishes ✨ Keep up the great work!
Thanks again for the inspiration! I wrote a blog post about it here: www.howtotbi.com/post/rtv-respond-to-video-my-long-haul-covid-journey-crashing-and-post-exertion-symptom-exacerbation