i also love the sentiment of this blog and the comment from Frank. I believe having this disease has taught me to actually know what it feels like to be 100% present in the moment. So often in pre Covid life, being present in the moment was a fleeting feeling which was hard to hold on to for long as the next pressing task ruled our lives. I think having Coronavirus has taught us to recognise that feeling and so in the future we’ll be better equipped to hold on to it for much much longer.
This is so beautiful and so true! I think of mindfulness and presence as a muscle. We're learning to gently engage it for longer and longer stretches of time before we fatigue and revert to old patterns, and hopefully we're also learning to notice when our mindfulness muscle has gone slack and reengage it more quickly.
Thanks for this Lisa! Was having a down day and this really gave me a lift. It helped to jolt me back into awareness of my perspective. It’s sometimes easy to slip back into dwelling on what we don’t have, full health, rather than be grateful for all that we have. You write very well! I could picture the leaves in your yard- nice scene!
What I’m learning over all these weeks of sitting at home, is how to live with myself. Up until I got sick, it was go, go, go, always doing and never just being. I constantly here people say be kind to yourself. For some reason, for me that is very difficult, but I’m getting better at it and your “A New Season...” piece has really helped. Thanks! Best wishes for your continued recovery.
I can definitely relate to having down days! I think we all need that jolt from time to time - not because sadness isn't real or shouldn't be felt, but simply because it's never the whole truth of the situation. We aren't meant to stay stuck there. I love what you wrote about learning how to live with yourself. Like you, I was go, go, go before getting sick. So me and myself are also spending an unprecedented amount of time together right now. Definitely a good time to practice self-kindness! Wishing you better days ahead and self-kindness to guide you through the dark ones! Thanks so much for your comment!
Thanks for your reply Lisa. I would not wish this post-covid mess on anyone, but it is comforting to know others are going through the same thing and are having to manage life in a whole new way. You are very positive, and I'm working on trying to be that way too. Every day is a little different. I just made an appointment with a cardiologist for next Monday. I believe I have mild form of POTS if that's possible. GP says lying down and standing there is not a profound difference in heart rate and BP, but it could cause symptoms. (My main symptom is debilitating fatigue.) He prescribed a steroid, with many potential side effects, so I have put that on hold for now pending what cardiologist tells me. I don't ever feel faint or dizzy when I stand up.
Hope it's okay to enter so much detailed medical info. I am comfortable with doing so. I think we can all learn from each others' experiences. Be well and best wishes for good days ahead!
I'm not always positive. I also have days where I decide I just need to be sad for awhile. . . and that's okay, too. Please don't be hard on yourself if looking on the bright side doesn't always come easily! From what I've read, it seems like POTS can exist on a spectrum and can cause mild symptoms for some and more debilitating for others, so a 'mild' case sounds plausible. I read a comment elsewhere from an ME/CFS sufferer the other day that really resonated with me. She said that instead of trying to figure out our limits so that we can push our bodies right up to their edge, we should use what we know about our current limits to stay far from the edge - never pushing, say, past 50%. The energy that we don't use up can then be used for healing. I don't know if that would hold up to medical research, but I found it a helpful and common sense way to think about ongoing fatigue and other symptoms. I've gotten into a pattern lately of trying to ride right on the edge, and so I'm grateful for reminder that this is a marathon, not a sprint. I hope your cardiology appointment is helpful, Frank!
Funny you should mention that 50% guideline. My sister suggested the same thing. She said determine what you think you can do, then do 50% of that. The part about the other 50% going to healing is new to me but it sounds very plausible. Even if I have this mild POTS, I just don't believe it can account for the profound fatigue I experience. There must be something else going on. Spent all morning today watching YT videos, Dr Mobeen (Cool Beens), Paul Marik, John Campbell. I'm guessing you are familiar with them. Was taking detailed notes on my legal pad, then it just got too technical, and was exhausted after a while and just turned it off. Some days, I don't know what to do. I know there is no one-size-fits-all magic bullet, but no one is going to look for a treatment protocol for me, so I have to do it. Or, should I just continue to rest, eat good food, stay hydrated and increase activity as tolerated and I will eventually get better?? Just don't know sometimes. With me, sometimes I get no warning before a crash. I'm feeling okay, doing a few tasks, not tired, then bam! bottom falls out. Feels like every cell in my body/mind completely exhausted. Never felt that before getting the virus. So, rather than letting the fatigue guide my activity as my GP suggested (no offense against him, he just doesn't know), I just do an activity, and even if not tired, rest, then later do something else, rest. That seems to be working.
Some have suggested that this post covid fatigue can turn into ME/CFS, my GP says it won't, but again - he really doesn't know. Well, can't worry about what might happen, just take one day at a time for now. Thanks for the reminder that it's okay to be sad sometimes. And yes, looking on the bright side does not always come easy, but that's okay, as you say. Here's hoping you can break your pattern of riding right on the edge, so you can give yourself that 50% for healing, at least some days. My Ultima electrolyte powder arrives tomorrow, so thanks for that tip. Thanks, I hope cardiology appointment goes well too. Probably a good idea to get the ticker checked out anyway! Have a nice evening. : )
I think the challenges and questions that you're bringing up are challenges and questions that just about every long-hauler can relate to. You are 100% right: no doctor will ever care as much about your health as you do. At the end of the day, we each have to decide what is best for us, and unfortunately, we have limited data and research to base those choices off of. I see people making very different choices - some are pursuing every possible test and treatment, others are sitting back and hoping that time will heal, and then there are plenty of people who land between those two extremes. Personally, I've decided to hit the pause on further testing. I've already racked up thousands of dollars in medical bills, and it has yielded nothing helpful. I might change my mind as more data emerges, and maybe I would choose differently if I had better insurance and a doctor I really trusted. This doesn't mean I'm doing nothing. I already ate healthfully pre-covid, but I've taken it to the next level. I'm very dedicated to going to bed early now and to incorporating more rest into my day. I meditate and practice gentle yoga every day. I've started backing out of commitments that yielded more stress than joy. (Corona Cafe is not one of them!) I'm trying to create the context in which my body can do its best work, and I'm trying to trust in its capacity for gradual healing. This feels like the right choice for me right now. It is not the right choice for everybody. For example, sometimes tests turn up really clear issues that need to be addressed. That hasn't been the case for me, though, and frankly, it's nice to take a break from the stress of doctors appointments. Whatever path you choose going forward, we've got your back!
Thanks for your reply Lisa. I can identify with all you said. Woke with no energy at all today. No energy for longer response now, but I will say the sense of community from Corona Cafe helps a lot. Thanks.
Hi Kath, So sorry to hear you are also going through this. Thanks for your comment. It's good to know I'm not alone. There are some people who haven't even heard of post-covid issues/symptoms. When I first got sick, I didn't even know post-covid syndrome, long covid, whatever you want to call it, was a thing. Not that I was being careless. I always wore the mask, didn't go out much, washed hands, etc. Not sure where I picked it up. The news seems to focus on mortality rate and number of new cases, at least here in the US. I know some cities have opened up post-covid treatment centers for people like us, but there's not one in my city, unfortunately. Hope you are at least noticing some improvement as time goes by. I feel like I am, but it is just very, very slow. Best wishes for continuing to stay present in the moment, and for continued improvement. : )
i also love the sentiment of this blog and the comment from Frank. I believe having this disease has taught me to actually know what it feels like to be 100% present in the moment. So often in pre Covid life, being present in the moment was a fleeting feeling which was hard to hold on to for long as the next pressing task ruled our lives. I think having Coronavirus has taught us to recognise that feeling and so in the future we’ll be better equipped to hold on to it for much much longer.
This is so beautiful and so true! I think of mindfulness and presence as a muscle. We're learning to gently engage it for longer and longer stretches of time before we fatigue and revert to old patterns, and hopefully we're also learning to notice when our mindfulness muscle has gone slack and reengage it more quickly.
Thanks for this Lisa! Was having a down day and this really gave me a lift. It helped to jolt me back into awareness of my perspective. It’s sometimes easy to slip back into dwelling on what we don’t have, full health, rather than be grateful for all that we have. You write very well! I could picture the leaves in your yard- nice scene!
What I’m learning over all these weeks of sitting at home, is how to live with myself. Up until I got sick, it was go, go, go, always doing and never just being. I constantly here people say be kind to yourself. For some reason, for me that is very difficult, but I’m getting better at it and your “A New Season...” piece has really helped. Thanks! Best wishes for your continued recovery.
I can definitely relate to having down days! I think we all need that jolt from time to time - not because sadness isn't real or shouldn't be felt, but simply because it's never the whole truth of the situation. We aren't meant to stay stuck there. I love what you wrote about learning how to live with yourself. Like you, I was go, go, go before getting sick. So me and myself are also spending an unprecedented amount of time together right now. Definitely a good time to practice self-kindness! Wishing you better days ahead and self-kindness to guide you through the dark ones! Thanks so much for your comment!
Thanks for your reply Lisa. I would not wish this post-covid mess on anyone, but it is comforting to know others are going through the same thing and are having to manage life in a whole new way. You are very positive, and I'm working on trying to be that way too. Every day is a little different. I just made an appointment with a cardiologist for next Monday. I believe I have mild form of POTS if that's possible. GP says lying down and standing there is not a profound difference in heart rate and BP, but it could cause symptoms. (My main symptom is debilitating fatigue.) He prescribed a steroid, with many potential side effects, so I have put that on hold for now pending what cardiologist tells me. I don't ever feel faint or dizzy when I stand up.
Hope it's okay to enter so much detailed medical info. I am comfortable with doing so. I think we can all learn from each others' experiences. Be well and best wishes for good days ahead!
I'm not always positive. I also have days where I decide I just need to be sad for awhile. . . and that's okay, too. Please don't be hard on yourself if looking on the bright side doesn't always come easily! From what I've read, it seems like POTS can exist on a spectrum and can cause mild symptoms for some and more debilitating for others, so a 'mild' case sounds plausible. I read a comment elsewhere from an ME/CFS sufferer the other day that really resonated with me. She said that instead of trying to figure out our limits so that we can push our bodies right up to their edge, we should use what we know about our current limits to stay far from the edge - never pushing, say, past 50%. The energy that we don't use up can then be used for healing. I don't know if that would hold up to medical research, but I found it a helpful and common sense way to think about ongoing fatigue and other symptoms. I've gotten into a pattern lately of trying to ride right on the edge, and so I'm grateful for reminder that this is a marathon, not a sprint. I hope your cardiology appointment is helpful, Frank!
Funny you should mention that 50% guideline. My sister suggested the same thing. She said determine what you think you can do, then do 50% of that. The part about the other 50% going to healing is new to me but it sounds very plausible. Even if I have this mild POTS, I just don't believe it can account for the profound fatigue I experience. There must be something else going on. Spent all morning today watching YT videos, Dr Mobeen (Cool Beens), Paul Marik, John Campbell. I'm guessing you are familiar with them. Was taking detailed notes on my legal pad, then it just got too technical, and was exhausted after a while and just turned it off. Some days, I don't know what to do. I know there is no one-size-fits-all magic bullet, but no one is going to look for a treatment protocol for me, so I have to do it. Or, should I just continue to rest, eat good food, stay hydrated and increase activity as tolerated and I will eventually get better?? Just don't know sometimes. With me, sometimes I get no warning before a crash. I'm feeling okay, doing a few tasks, not tired, then bam! bottom falls out. Feels like every cell in my body/mind completely exhausted. Never felt that before getting the virus. So, rather than letting the fatigue guide my activity as my GP suggested (no offense against him, he just doesn't know), I just do an activity, and even if not tired, rest, then later do something else, rest. That seems to be working.
Some have suggested that this post covid fatigue can turn into ME/CFS, my GP says it won't, but again - he really doesn't know. Well, can't worry about what might happen, just take one day at a time for now. Thanks for the reminder that it's okay to be sad sometimes. And yes, looking on the bright side does not always come easy, but that's okay, as you say. Here's hoping you can break your pattern of riding right on the edge, so you can give yourself that 50% for healing, at least some days. My Ultima electrolyte powder arrives tomorrow, so thanks for that tip. Thanks, I hope cardiology appointment goes well too. Probably a good idea to get the ticker checked out anyway! Have a nice evening. : )
I think the challenges and questions that you're bringing up are challenges and questions that just about every long-hauler can relate to. You are 100% right: no doctor will ever care as much about your health as you do. At the end of the day, we each have to decide what is best for us, and unfortunately, we have limited data and research to base those choices off of. I see people making very different choices - some are pursuing every possible test and treatment, others are sitting back and hoping that time will heal, and then there are plenty of people who land between those two extremes. Personally, I've decided to hit the pause on further testing. I've already racked up thousands of dollars in medical bills, and it has yielded nothing helpful. I might change my mind as more data emerges, and maybe I would choose differently if I had better insurance and a doctor I really trusted. This doesn't mean I'm doing nothing. I already ate healthfully pre-covid, but I've taken it to the next level. I'm very dedicated to going to bed early now and to incorporating more rest into my day. I meditate and practice gentle yoga every day. I've started backing out of commitments that yielded more stress than joy. (Corona Cafe is not one of them!) I'm trying to create the context in which my body can do its best work, and I'm trying to trust in its capacity for gradual healing. This feels like the right choice for me right now. It is not the right choice for everybody. For example, sometimes tests turn up really clear issues that need to be addressed. That hasn't been the case for me, though, and frankly, it's nice to take a break from the stress of doctors appointments. Whatever path you choose going forward, we've got your back!
Thanks for your reply Lisa. I can identify with all you said. Woke with no energy at all today. No energy for longer response now, but I will say the sense of community from Corona Cafe helps a lot. Thanks.
Frank, I can relate to 100% of what you’ve written and so you’re not alone x
Hi Kath, So sorry to hear you are also going through this. Thanks for your comment. It's good to know I'm not alone. There are some people who haven't even heard of post-covid issues/symptoms. When I first got sick, I didn't even know post-covid syndrome, long covid, whatever you want to call it, was a thing. Not that I was being careless. I always wore the mask, didn't go out much, washed hands, etc. Not sure where I picked it up. The news seems to focus on mortality rate and number of new cases, at least here in the US. I know some cities have opened up post-covid treatment centers for people like us, but there's not one in my city, unfortunately. Hope you are at least noticing some improvement as time goes by. I feel like I am, but it is just very, very slow. Best wishes for continuing to stay present in the moment, and for continued improvement. : )