Thanks for your work. Thanks for reminding me,yet again, of how important it is to protect my baseline. I would love to see a list of gentle humorous tv shows and movies.🙏🤗
You’re welcome Carol! I’m glad to be able to remind people how important it is to protect their baseline.
Some shows I’ve really enjoyed lately are The Good Place, Dying for Sex, Tiny Beautiful Things, Superstore, Gilmore Girls, ER (always an old standby) and Friends is often what I put on in the background. Ooh Julia is excellent comfort tv if you have access to HBO
I absolutely needed to read this right now. I was pushing and had all the intrusive thoughts about “lazyness” come through so I reached out to two of my most precious friends who I consider sisters. They deal with disability and chronic illness and were my voice of reason to skip a dance class that would have made my flare worse. Because I internalized the message of “you would be better if you moved more!” And while I like dancing, I realize committing to a weekly dance class is not in the cards because my condition can be variable but mostly because I’m sick of the energy drained due to the mental gymnastics of fighting my own needs versus internalized ableism. So, how will I preserve my baseline? I’ll dance my own way when I’m able to (I also have POTS) rather than commit to a weekly class. Do it for the joy, when I feel able and want to. That’s one step toward maintaining my baselining: accommodating my love of dance to the body I have. This is such a good topic to engage with, thank you!
I love this approach Sherri! I took a similar approach with my love of theatre when I first became sick. I had to stop reviewing because I couldn’t commit to being able to attend & file on a deadline … but I would still go see shows on my good days and did it just for the love of it. Then I subscribed to some at home streaming theatre productions so I could enjoy from bed.
We have to adapt and change with our symptoms, otherwise our bodies will force the issue!
Thank you for this article. It really resonated for me. And, yes, please write about what set off this flare for you when you're able; I would love to know more and learn from you and your experience.
Thank you for reading, and I’m so glad it resonated with you! Will start working on a draft this week… I’m hoping writing about it will help me process it as well since I’m quite upset it happened (and that I didn’t see it coming)
You hit the nail on the head. We have to consider every movement through the prism of pain and disability. I too had a setback. I fell again. I was disappointed in me. The guilt eats me alive. The disability and fear of what's happening to my body. My neck is fucked. I don't have a scalene visible on the right side of my neck. Tons of vertigo. I tried low scale chair exercising. Innocent enough. But it disturbed my neck. Had to quit. I have to balance my life with passion and purpose. No one and I mean no one in my family asks me how I feel. Even when I fell my sister didn't say, How are you feeling after falling. All she said was time come get me. That's not compassion or caring. I start everyday at 5 a.m. I don't want to get up that early but my pain body has other ideas. I understand and I truly want to know how you feel.
I’m so sorry you fell Linda (and that you’re not getting the support you deserve from family).
I’m glad you’re here and I hope you feel support from the community. I took a fall earlier this week too and dislocated my shoulder. It’s so frustrating and easy to blame ourselves… but remember that we didn’t fall on purpose. We didn’t ask to be unsteady. We’re doing the best we can 💜
I'd love to hear what the trigger was. I'm still new to all this and collecting information. I've been feeling lousy since January and am just know getting better. It turns out protein is important. My knees feel so much better and standing is so much easier just one week into this idea of focusing on protein. I almost certainly was way too low before, and am just trying to hit 70 grams/day now. Thank you for sharing so much.
Glad that you figured out something that can help (and hopefully you’re finding it easy to meet your protein requirements). Will start working on an article about the trigger. As often happens, one thing tends to snowball and become multiple things… and the more that goes wrong the harder it is to recover.
Life's vicissitudes seem to seem to arrive to most, if not all, sooner or later. Once in a very great while there is then an ah ha! moment. "Oh, I get it now."
Good to see you here now ") I hope some good spring days hit now and then...
But me, too. The stress of Pres. Musk and his minions cutting/messing with all the programs that make my little life possible while a genocide (that same government funds) still rages has caused me to suffer big time as well.
After a month of serious expenditures (I can't afford this!) of chinese herbs and other nootropics I'm sleeping a bit more. But man, no sleep for weeks and weeks - not sure how I'm still here.
Hard to wrap my mind around how
We're all Palestinians now~
yes, thank you-check in when you can we'll be here ")
I love that you read your own words to remind yourself of what you need. It is always easier to know/say what can help, vs actually doing it. I always ask myself if I would say things to a loved one, before I say them to myself (obviously easier said than done). . I am glad you are taking your own advice of resting when needed. Congratulations on taking your own advice of resting when needed.
Regarding risk taking, I find that sometimes I have to risk my physical health to take care of my mental health, which adds yet another equation into the mix. For me it is always a balancing act between physical health and mental health, while knowing that one often affects the other
Thank you. It can be so hard to take our own advice and sometimes I find if I read my words and try and internalize them as though they were coming from someone else, I have more success.
I completely understand on balancing mental and physical health… that could practically be its own article! It’s so hard to find that balance because mental health will also take a hit if we lose significant physical function.
Thank you so much for this. I am a recovering stroke (caused by covid) victim. I try to lead a “normal” life but every so often (like last Friday) I have accidents. Your article came precisely at the right time.
I’m so sorry to hear about your stroke (and accident!) but I’m glad this article found you at the right time. I hope you can have a restful day and focus on recovery.
Thank you so, so much. I've been writing and re-writing this comment and still don't have the words right now to describe how helpful and validating your articles are for me. Please know they are.
Thank you so much Trina, you have no idea how much this comment means to me. It provided a much needed lift and possibly helped me regain a few spoons! I appreciate you taking the time.
Glad you're back and hope recovery is going well without any setbacks.
Thanks for the advice, although every time I try to rewatch something from the '80s or '90s I always end up thinking "Gee, that did not age well and is not as funny as I remembered." Maybe I'm just a cranky old man now though...
I’m always happy when I find the odd gem that did age well. I just finished watching As Good As It Gets and found it that as funny and touching as I did in the 90s. Jack is a classic!
I’m glad you’re feeling better and the worst of the flare is behind you. I appreciate this article and resonate with a lot of the thoughts and views.
To me, baseline is fluid and dynamic; shifting to a new or different level with each flare of the systemic inflammatory disease I have. After each of them, it took years to reach modest improvement to reduce pain and (re)gain function (which is at a lower level of function than prior to the flare - and voilà, new baseline 🙂). Recovery can seem such a misnomer in these situations.
Thanks for including the perspective about how the ongoing pandemic and efforts to protect one’s baseline by not willingly submitting to further risk of illness and life being harder can result in increased isolation.
Thank you for spending your energy to share your experience and tools. This is wonderful information, validation, and perspective. I will certainly refer to this again and again, to help me stay on track as well as to feel uplifted. As a pw ME/CFS, it's been hard to tell the difference between a possibly temporary setback and a shift in baseline.
Last year I experienced a 5 month PEM. A few months into 'recovery' it became clear that I had landed on a new baseline which was a downturn from my previous functioning. This, after decades of a slow, ongoing decline which I attribute to a lack of appropriate clinical care (and hence, a lack of tools to avoid PEM) and perhaps partly an inevitable decline. With an energy-robbing disorder like ME/CFS, protecting one's baseline has this added layer of shit. A setback/flare/PEM might not be temporary.
This is excellent. I have shared it with the people I live with. They know that I am chronically ill but don’t always understand the basics of maintaining a baseline.
Thanks for your work. Thanks for reminding me,yet again, of how important it is to protect my baseline. I would love to see a list of gentle humorous tv shows and movies.🙏🤗
You’re welcome Carol! I’m glad to be able to remind people how important it is to protect their baseline.
Some shows I’ve really enjoyed lately are The Good Place, Dying for Sex, Tiny Beautiful Things, Superstore, Gilmore Girls, ER (always an old standby) and Friends is often what I put on in the background. Ooh Julia is excellent comfort tv if you have access to HBO
I absolutely needed to read this right now. I was pushing and had all the intrusive thoughts about “lazyness” come through so I reached out to two of my most precious friends who I consider sisters. They deal with disability and chronic illness and were my voice of reason to skip a dance class that would have made my flare worse. Because I internalized the message of “you would be better if you moved more!” And while I like dancing, I realize committing to a weekly dance class is not in the cards because my condition can be variable but mostly because I’m sick of the energy drained due to the mental gymnastics of fighting my own needs versus internalized ableism. So, how will I preserve my baseline? I’ll dance my own way when I’m able to (I also have POTS) rather than commit to a weekly class. Do it for the joy, when I feel able and want to. That’s one step toward maintaining my baselining: accommodating my love of dance to the body I have. This is such a good topic to engage with, thank you!
I love this approach Sherri! I took a similar approach with my love of theatre when I first became sick. I had to stop reviewing because I couldn’t commit to being able to attend & file on a deadline … but I would still go see shows on my good days and did it just for the love of it. Then I subscribed to some at home streaming theatre productions so I could enjoy from bed.
We have to adapt and change with our symptoms, otherwise our bodies will force the issue!
Thank you for this article. It really resonated for me. And, yes, please write about what set off this flare for you when you're able; I would love to know more and learn from you and your experience.
Thank you for reading, and I’m so glad it resonated with you! Will start working on a draft this week… I’m hoping writing about it will help me process it as well since I’m quite upset it happened (and that I didn’t see it coming)
You hit the nail on the head. We have to consider every movement through the prism of pain and disability. I too had a setback. I fell again. I was disappointed in me. The guilt eats me alive. The disability and fear of what's happening to my body. My neck is fucked. I don't have a scalene visible on the right side of my neck. Tons of vertigo. I tried low scale chair exercising. Innocent enough. But it disturbed my neck. Had to quit. I have to balance my life with passion and purpose. No one and I mean no one in my family asks me how I feel. Even when I fell my sister didn't say, How are you feeling after falling. All she said was time come get me. That's not compassion or caring. I start everyday at 5 a.m. I don't want to get up that early but my pain body has other ideas. I understand and I truly want to know how you feel.
I’m so sorry you fell Linda (and that you’re not getting the support you deserve from family).
I’m glad you’re here and I hope you feel support from the community. I took a fall earlier this week too and dislocated my shoulder. It’s so frustrating and easy to blame ourselves… but remember that we didn’t fall on purpose. We didn’t ask to be unsteady. We’re doing the best we can 💜
I'd love to hear what the trigger was. I'm still new to all this and collecting information. I've been feeling lousy since January and am just know getting better. It turns out protein is important. My knees feel so much better and standing is so much easier just one week into this idea of focusing on protein. I almost certainly was way too low before, and am just trying to hit 70 grams/day now. Thank you for sharing so much.
Glad that you figured out something that can help (and hopefully you’re finding it easy to meet your protein requirements). Will start working on an article about the trigger. As often happens, one thing tends to snowball and become multiple things… and the more that goes wrong the harder it is to recover.
Life's vicissitudes seem to seem to arrive to most, if not all, sooner or later. Once in a very great while there is then an ah ha! moment. "Oh, I get it now."
Yes those “aha!” Moments are so important and often don’t come until someone experiences disability or chronic illness themselves.
My hope is that by writing about my experiences some people might have the “aha” moment in advance and be more empathetic as a result.
Good to see you here now ") I hope some good spring days hit now and then...
But me, too. The stress of Pres. Musk and his minions cutting/messing with all the programs that make my little life possible while a genocide (that same government funds) still rages has caused me to suffer big time as well.
After a month of serious expenditures (I can't afford this!) of chinese herbs and other nootropics I'm sleeping a bit more. But man, no sleep for weeks and weeks - not sure how I'm still here.
Hard to wrap my mind around how
We're all Palestinians now~
yes, thank you-check in when you can we'll be here ")
I’m glad you’ve finally been able to get some sleep! It makes such a difference to our overall health and can be so hard when chronically ill.
The stress of the world is a lot to cope with right now … I hope you’re hanging in and have some peaceful days to come.
I love that you read your own words to remind yourself of what you need. It is always easier to know/say what can help, vs actually doing it. I always ask myself if I would say things to a loved one, before I say them to myself (obviously easier said than done). . I am glad you are taking your own advice of resting when needed. Congratulations on taking your own advice of resting when needed.
Regarding risk taking, I find that sometimes I have to risk my physical health to take care of my mental health, which adds yet another equation into the mix. For me it is always a balancing act between physical health and mental health, while knowing that one often affects the other
Thank you. It can be so hard to take our own advice and sometimes I find if I read my words and try and internalize them as though they were coming from someone else, I have more success.
I completely understand on balancing mental and physical health… that could practically be its own article! It’s so hard to find that balance because mental health will also take a hit if we lose significant physical function.
Perhaps an important future topic!
Thank you so much for this. I am a recovering stroke (caused by covid) victim. I try to lead a “normal” life but every so often (like last Friday) I have accidents. Your article came precisely at the right time.
I’m so sorry to hear about your stroke (and accident!) but I’m glad this article found you at the right time. I hope you can have a restful day and focus on recovery.
Thank you so, so much. I've been writing and re-writing this comment and still don't have the words right now to describe how helpful and validating your articles are for me. Please know they are.
Thank you so much Trina, you have no idea how much this comment means to me. It provided a much needed lift and possibly helped me regain a few spoons! I appreciate you taking the time.
Maintaining a baseline is critical! Tough to do at times but essential - regards, Bob
Thank you bob. As you said, tough but critical!
Thank you for publishing this! Very helpful and I am sharing!!!
I’m so glad it was helpful Audrey! Thank you for sharing it!
Glad you're back and hope recovery is going well without any setbacks.
Thanks for the advice, although every time I try to rewatch something from the '80s or '90s I always end up thinking "Gee, that did not age well and is not as funny as I remembered." Maybe I'm just a cranky old man now though...
I’m always happy when I find the odd gem that did age well. I just finished watching As Good As It Gets and found it that as funny and touching as I did in the 90s. Jack is a classic!
I’m glad you’re feeling better and the worst of the flare is behind you. I appreciate this article and resonate with a lot of the thoughts and views.
To me, baseline is fluid and dynamic; shifting to a new or different level with each flare of the systemic inflammatory disease I have. After each of them, it took years to reach modest improvement to reduce pain and (re)gain function (which is at a lower level of function than prior to the flare - and voilà, new baseline 🙂). Recovery can seem such a misnomer in these situations.
Thanks for including the perspective about how the ongoing pandemic and efforts to protect one’s baseline by not willingly submitting to further risk of illness and life being harder can result in increased isolation.
Thank you for spending your energy to share your experience and tools. This is wonderful information, validation, and perspective. I will certainly refer to this again and again, to help me stay on track as well as to feel uplifted. As a pw ME/CFS, it's been hard to tell the difference between a possibly temporary setback and a shift in baseline.
Last year I experienced a 5 month PEM. A few months into 'recovery' it became clear that I had landed on a new baseline which was a downturn from my previous functioning. This, after decades of a slow, ongoing decline which I attribute to a lack of appropriate clinical care (and hence, a lack of tools to avoid PEM) and perhaps partly an inevitable decline. With an energy-robbing disorder like ME/CFS, protecting one's baseline has this added layer of shit. A setback/flare/PEM might not be temporary.
Thanks for your very good work. Best wishes.
This is excellent. I have shared it with the people I live with. They know that I am chronically ill but don’t always understand the basics of maintaining a baseline.