Dear Naima! You carry the torch of your own recovery and help shed light for others along the way who need the same light on their own (and my own) challenging journey! Thank You!!! 🙏
Hi Naima, thank you for your content. You speak so calmly and precisely, it's very helpful. I'll definitely keep following your journey and hopefully learn how to manage my own symptoms in the process. Have a lovely day.
Hi Naima, I'm new to this Long Haul life (3.5 months) and I'm so glad I stumbled upon your UA-cam channel! Your gentle voice and spirit and your beauty are exactly what my exhausted mind and body need while learning about Long Covid and how you've dealt with things like pacing etc.. Thank you.
@@naimaella Naima, how did you deal with feeling like people don't get it? Like when people say stuff like " Oh yeah I'm tired too" Lol. Also, the mental health effects of having your lifestyle trashed- how did you deal with that? I'm feeling very low, which I'm sure is common to most Long Haulers.
@@sarahstewart1531 Hey - it's very hard isn't it and so isolating. Honestly my friendship circle has become much smaller to protect myself from those types of comments and the casual dismissiveness of what we are going through. The mental health effects are tough and for me it goes in phases- if I relapse then my mental health decreases as I improve because I finally have time to process how difficult this is. It can be disorienting and therapy has really helped. If you want to chat a bit more my email is naimaella@gmail.com. Sending you a virtual hug 💛
I have taken similarly detailed notes in the past, and have found that I can be briefer these days while still maintaining self-understanding. Wishing you a very happy 2023!
Thank you Naïma. This is helpful indeed! I've also been using Visible and I believe it's good for a pilot version. But I wish if it had a user chat forum. I think it'd also be great if the data I input is seen by the Apple Health app the same way it works with other health related apps. I use Notion for my academic research but I'm yet to explore templating for non-academic stuff. I also wish if Notes and Notion are connected. Thanks again for the time and effort you put each week into researching and creating this useful content, and thanks for the weekly kind reminder to pace. xx
I agree I think the data from the Apple Watch would probably be more accurate too - I'm sure they're exploring doing that. Thanks so much - hope you're having a good week 💛
I have been collecting much of the same data old-school style - in an excel spreadsheet. This seems to be an imporovement in that it is more organized. My doctors have been interested in seeing the data, especially the drugs I take throughout the data, blood pressure readings, pain level, etc to see if any correlation jumps out. Is there a file type associated with each app that can be sent and shared with your physciain? If not, how do you as a long hauler, inyterpret and use the data collected to inform your daily routine to make the small adjustments that might help you feel better? Do you review past inputs to look for such patterns?
I’m not sure if the data can be exported from Visible although I haven’t tried, but it can be from notion or my notes app. I use the data myself when I have what feels like a sudden improvement or deterioration of symptoms to try to piece together what might have caused it. It helps me whittle the cause down to a couple of factors in a way I couldn’t before. For example I used to think I worked four hours a day, but realised it was more like six. Then I lowered my number of hours and saw quite quick improvements.
Great video! I got the Visible app you mentioned, thank you for recommending it! Until now, I've just been making a master list each week to remind myself of what I need to do to care for myself to get through the week (I work and go to school), and writing various reminders in my planner to help me pace. I'm really interested to see what the app says over time. I'm sure that, like you, I'm doing a lot more than I realize.
Glad it was helpful. Yes it's so easy to overdo it without realising - I hope Visible is helpful for you. It's still in early stages, but really exciting what they're trying to do
Hi Naima, Sounds like you have been through so much. It is now possible to conduct a live interview with the brain in real time to eradicate viral infections, especially long-covid in 24-48 hours. Please feel free to reach out to me to learn how you can resolve your viral compensation.
Hi Naima….I can see why you are doing this. Earlier last year I got a Garmin Instinct solar 2 watch which does all the things your app does but it’s updated automatically. At any time you can see your sleep quality and your energy and stress levels which are reported in what they call your ‘body battery’ governed mainly by the reflection in your hrv. This records and shows your energy levels amongst many other things in real time, graphically as it syncs to your phone. My conclusion was that it accurately reflected my activities and energy, the trouble was that I was looking at it all flippin day and it became a complete nuisance because I realised that it was telling me what I could feel anyway. The danger with recording so much is that you live within your problems, is my tinnitus louder, is my brain fuzzier, am I fatigued plus lots of other things that you constantly monitor. We all do that but I try to think of looking out into a panoramic view of the lansdscape, hope for the future, pleasant things to do, feeling better and lots more. Basically get out of your situation as positively as possible. To me there are two things that are the most help, judging from all reports, and that is pacing and neuroplasticity. When you eventually realise that you must pace properly and that you can train your brain you can move forward…..Dump the negatives and live with the positives, its not easy but it can be done a lot of the time.
Thanks for sharing your perspective. I've heard a lot about the Garmin watch actually! I think there's a balance between staring at devices/ apps all day and using them as a guide for recovery. I think intense symptom tracking (especially in the early days) can keep you in a negative feedback loop and cause the nervous system to go haywire, but at my current stage using the Visible App had the opposite effect. It has made me realise how much my illness has changed and improved over time. Overall these systems have helped me to have more control over my time. I'm realising there are different tools for different stages in recovery and these probably wouldn't have helped me in the early months and they definitely won't serve me forever.
@@naimaella Yes, anything that helps is good. That was my 2 penneth from my experience and we're all different. Let us know how you get on, wish you success and good luck. Have you researched neuroplasticity? What are your thoughts?
@@dongee1664 Will do you too! So I have mixed feelings about neuroplasticity... I did Curable for pain management for about a year and really benefited from it. It helped me to get out of a pain fear cycle with my chest pains and overall think it helped. But I think some programs can blame the individual for not thinking about their illness in the right way. And many of the programs are $1000-3000+, which is not affordable for many of us. I also know how many people have really benefited from these programs, so I am open to changing my mind and maybe I haven't found the right program for me 😊. What are your thoughts? Has neuroplasticity helped you?
@@naimaella I haven't been on any programmes Naima, I understand the principle and follow routines for positivity. Does it help? Well it hasn't cured me but forever hopeful of change.
How many days does the PEM last? I've been there for 10 days and I'm desperate, I take magnesium busglycinate, coenzyme q10 and I'm getting worse every day. Help!
It's so horrible! PEM is usually for a few hours or a day after overdoing it. What you're describing seems to be more of a relapse and mine would last for a long time before I started pacing and doing the same amount every day. Hang in there, rest, be kind to yourself and I hope it improves soon.
Dear Naima! You carry the torch of your own recovery and help shed light for others along the way who need the same light on their own (and my own) challenging journey! Thank You!!! 🙏
Hi Naima, thank you for your content. You speak so calmly and precisely, it's very helpful. I'll definitely keep following your journey and hopefully learn how to manage my own symptoms in the process. Have a lovely day.
I’m glad you’re enjoying the content. Wish you all the best with your recovery
Thanks for this video, Naima. Visible seems a great way to keep track of day to day symptoms.
Wishing you and fellow Long Covid suffers well.
Hi Naima, I'm new to this Long Haul life (3.5 months) and I'm so glad I stumbled upon your UA-cam channel! Your gentle voice and spirit and your beauty are exactly what my exhausted mind and body need while learning about Long Covid and how you've dealt with things like pacing etc.. Thank you.
Aww Sarah your message has made my day. So happy you're finding my videos helpful - hang in there and hope things start to improve for you soon 😊
@@naimaella Naima, how did you deal with feeling like people don't get it? Like when people say stuff like " Oh yeah I'm tired too" Lol. Also, the mental health effects of having your lifestyle trashed- how did you deal with that? I'm feeling very low, which I'm sure is common to most Long Haulers.
@@sarahstewart1531 Hey - it's very hard isn't it and so isolating. Honestly my friendship circle has become much smaller to protect myself from those types of comments and the casual dismissiveness of what we are going through.
The mental health effects are tough and for me it goes in phases- if I relapse then my mental health decreases as I improve because I finally have time to process how difficult this is. It can be disorienting and therapy has really helped. If you want to chat a bit more my email is naimaella@gmail.com. Sending you a virtual hug 💛
@@naimaella Thanks so much Naima for your kind reply! 😇
Nicely done. I appreciate the personal examples and experience. Sharing with a couple loved ones.
Thanks Mark - Happy new year 😊
Thank you. This video is so useful not only for LC but for other chronic, debilitating conditions as well. I wish you well on your recovery from LC.
Thanks. Glad it was helpful! Wish you well too 😊
I have taken similarly detailed notes in the past, and have found that I can be briefer these days while still maintaining self-understanding.
Wishing you a very happy 2023!
Glad to hear it. Happy New Year to you too!! 💛
Thank you Naïma. This is helpful indeed! I've also been using Visible and I believe it's good for a pilot version. But I wish if it had a user chat forum. I think it'd also be great if the data I input is seen by the Apple Health app the same way it works with other health related apps. I use Notion for my academic research but I'm yet to explore templating for non-academic stuff. I also wish if Notes and Notion are connected. Thanks again for the time and effort you put each week into researching and creating this useful content, and thanks for the weekly kind reminder to pace. xx
I agree I think the data from the Apple Watch would probably be more accurate too - I'm sure they're exploring doing that.
Thanks so much - hope you're having a good week 💛
So helpful! I’m going to try following your advice.
I’d love to know how you made the activity calendar in Notion. So far, it’s beyond my ability to figure out. ❤
You are an inspiration in handling this situation and making the best out of it.
Ah thanks so much. So kind of you 🥰
I have been collecting much of the same data old-school style - in an excel spreadsheet. This seems to be an imporovement in that it is more organized. My doctors have been interested in seeing the data, especially the drugs I take throughout the data, blood pressure readings, pain level, etc to see if any correlation jumps out. Is there a file type associated with each app that can be sent and shared with your physciain? If not, how do you as a long hauler, inyterpret and use the data collected to inform your daily routine to make the small adjustments that might help you feel better? Do you review past inputs to look for such patterns?
I’m not sure if the data can be exported from Visible although I haven’t tried, but it can be from notion or my notes app. I use the data myself when I have what feels like a sudden improvement or deterioration of symptoms to try to piece together what might have caused it. It helps me whittle the cause down to a couple of factors in a way I couldn’t before. For example I used to think I worked four hours a day, but realised it was more like six. Then I lowered my number of hours and saw quite quick improvements.
Great video! I got the Visible app you mentioned, thank you for recommending it! Until now, I've just been making a master list each week to remind myself of what I need to do to care for myself to get through the week (I work and go to school), and writing various reminders in my planner to help me pace. I'm really interested to see what the app says over time. I'm sure that, like you, I'm doing a lot more than I realize.
Glad it was helpful. Yes it's so easy to overdo it without realising - I hope Visible is helpful for you. It's still in early stages, but really exciting what they're trying to do
you're amazing Naima!
Ah thanks gorge as are you! 💛🥰
Hi Naima,
Sounds like you have been through so much. It is now possible to conduct a live interview with the brain in real time to eradicate viral infections, especially long-covid in 24-48 hours. Please feel free to reach out to me to learn how you can resolve your viral compensation.
Naima did you have vertigo or dizziness during your long haul?
I have dizziness but only every so often when I stand up and not vertigo luckily
@@naimaella looking forward to your progress been following your videos for a while
Hi Naima….I can see why you are doing this. Earlier last year I got a Garmin Instinct solar 2 watch which does all the things your app does but it’s updated automatically. At any time you can see your sleep quality and your energy and stress levels which are reported in what they call your ‘body battery’ governed mainly by the reflection in your hrv. This records and shows your energy levels amongst many other things in real time, graphically as it syncs to your phone.
My conclusion was that it accurately reflected my activities and energy, the trouble was that I was looking at it all flippin day and it became a complete nuisance because I realised that it was telling me what I could feel anyway.
The danger with recording so much is that you live within your problems, is my tinnitus louder, is my brain fuzzier, am I fatigued plus lots of other things that you constantly monitor. We all do that but I try to think of looking out into a panoramic view of the lansdscape, hope for the future, pleasant things to do, feeling better and lots more. Basically get out of your situation as positively as possible.
To me there are two things that are the most help, judging from all reports, and that is pacing and neuroplasticity. When you eventually realise that you must pace properly and that you can train your brain you can move forward…..Dump the negatives and live with the positives, its not easy but it can be done a lot of the time.
Thanks for sharing your perspective. I've heard a lot about the Garmin watch actually! I think there's a balance between staring at devices/ apps all day and using them as a guide for recovery.
I think intense symptom tracking (especially in the early days) can keep you in a negative feedback loop and cause the nervous system to go haywire, but at my current stage using the Visible App had the opposite effect. It has made me realise how much my illness has changed and improved over time. Overall these systems have helped me to have more control over my time.
I'm realising there are different tools for different stages in recovery and these probably wouldn't have helped me in the early months and they definitely won't serve me forever.
@@naimaella Yes, anything that helps is good. That was my 2 penneth from my experience and we're all different. Let us know how you get on, wish you success and good luck. Have you researched neuroplasticity? What are your thoughts?
@@dongee1664 Will do you too!
So I have mixed feelings about neuroplasticity... I did Curable for pain management for about a year and really benefited from it. It helped me to get out of a pain fear cycle with my chest pains and overall think it helped. But I think some programs can blame the individual for not thinking about their illness in the right way. And many of the programs are $1000-3000+, which is not affordable for many of us.
I also know how many people have really benefited from these programs, so I am open to changing my mind and maybe I haven't found the right program for me 😊.
What are your thoughts? Has neuroplasticity helped you?
@@naimaella I haven't been on any programmes Naima, I understand the principle and follow routines for positivity. Does it help? Well it hasn't cured me but forever hopeful of change.
What template do you use?
How many days does the PEM last? I've been there for 10 days and I'm desperate, I take magnesium busglycinate, coenzyme q10 and I'm getting worse every day. Help!
It's so horrible! PEM is usually for a few hours or a day after overdoing it. What you're describing seems to be more of a relapse and mine would last for a long time before I started pacing and doing the same amount every day.
Hang in there, rest, be kind to yourself and I hope it improves soon.
Clearly she is very organised, for me I couldnt cope with the Notion app, far too organised for me.