Glad Zira is healing, I’m sure somewhere (really) deep down she is grateful to her mom for sacrificing her own health.
And in another round of are we related, I have been committed to earth burial ever since I heard of it through the urban death project kickstarter. Love that for us
I mean, at this point I’m more shocked when we DON’T have something in common 🤯.
And that’s a toy mouse. There are dozens of them throughout the house and Birdie has taken to, errr, moistening them 🤦🏼♀️. Much to daddy’s chagrin, who wakes up first and has to deal with the crime scene 😂
Amy, I do hope that your absolutely gorgeous cat can take a moment to drop the attitude and appreciate how lucky she is to have you.
Take good care of yourself and best wishes that you pass through this AP (seems so less traumatic than "a crash" - all for less trauma) as quickly as possible.
"Adjustment Period" – this is such a good way to reframe apparent setbacks. Thanks for this video (and all the other incredibly useful resources you share). And I hope your (and Zira's!) equilibrium returns soon.
It’s a really great question that I’m not sure I have much of a helpful response to. For me, my belief that “I matter. My health matters” has been unshakeable. It’s never once waivered and I have been through some hideous times in the past 6 years. Life in the last couple of years has been a lot easier (I’ve been able to function to some extent through attack, it’s been over 2 years now since I last experienced pain to a severe/agonising extent that is around 50% more painful than childbirth - before that this pain scale was my norm - for over 20 years. I didn’t really know pain outside of that - certainly not the mild pain that has been my norm since). Though it did take me 4 years of just keep keep on believing. At the bear minimum I’d lose 2.5 weeks every month but my belief was so strong, I was (&still am) so determined. The world still tells me that what I’ve achieved is impossible (obv can’t have been that bad then to be as well as I am now) but all that keeps happening is my health continues to improve. I’ve received so much physical and energetic healing in the last week, yet the only way forward now is for me to not experience any symptoms at all from month to month. Irrespective of whether or not I fully heal myself (my life is great, I can function, so it truly hasn’t mattered for the last 18 months), I still believe I can heal myself fully. There’s no doubt in my mind at all whatsoever. Even if I don’t. (Maybe I am opening up this as a possibility for future generations of healers, who knows🤷🏼♀️). All I’ve read, digested, understood, experienced tells me I can. The only part that doesn’t is medical opinion. And I see this as it is, opinion. It doesn’t align with my truth.
Very interesting- thank you for taking the time to write all that. I’ll say during my eight years of chronic migraines, while I never stopped seeking help and trying new things to overcome them, I don’t think I had the full belief that they’d ever completely stop. And now with long COVID for four years, it’s only really within the last year or so that my belief in my recovery has been unshakeable. That’s why I’m so fascinated by those who hold onto that faith for years and years. It’s very inspiring!
I’m fascinated by the part our belief system plays in our recovery and wellness (or lack thereof). I don’t see it as the only thing of course but it feels like some type of foundation. I don’t even know where my belief came from but it meant when I went head to head with a “specialist” and he told me not to bother making any changes and that there was no support at all available to me, something inside told me very different (that I needed to make changes and it would take me a long time) and to take back the reigns of creation. I now have a new mantra “creation not control”. Hope to turn this into a blog title at some point because it’s something else I also adopted around the same time as I learnt to let my body lead the way and managed to drown out the noise of every
“Adjustment period” I bloody love that !! I found the affirmation I use at the onset to be very powerful. For me, it has been “this is a relapse and a small one at that” then this time last year, I had an awareness that a huge level up was coming. It meant another 3 month (mild) relapse. But, boy, did that level up come.
I can’t seem to access this link “MedPage Today: Be Wary of Flawed Diagnosis Criteria for ME/CFS” if you are able to resend x
I love that you called it a “level up.” It must have been so hard to view it that way when it lasted three months. Can you say more about how you kept the faith all that time?
Indeed, that link seems broken. Here’s one that should work. I’ll have to fix it in my post later; today is the day Zira’s stitches come out and I have to get a move-on!
There was an article in the NYT this week on the increase in school absences. They discussed culture changes from the lock down, decreased value in education and pretty much everything else except the reality of many kids living with long covid. So many children got covid repeatedly early in the pandemic without concern because we were being told they would be fine. They aren’t fine. It’s devastating seeing their lives ruined before they got a chance to begin.
That’s a glaring omission, considering it’s so damn obviously one of the reasons. I bet there’s even kids who don’t necessarily have LC but who are now picking up every bug out there due to lowered immunity after having COVID. SMH…
Hey Amy! I am glad to hear that Zira is on the mend—now it is definitely your turn!
Please don't use the phrase “adjustment period” in any context that others may use to judge your level of disability or the types of accommodations you should get.
I understand why it is beneficial to think about it that way, but you don't want to give bureaucrats any reason to downplay your disabilities. (end of gratuitous advice😊)
Excellent point, Teri! I wasn’t planning on doing that - especially not now, as I gear up for my SSDI hearing in May. To those fuckers, I’ll have to come up with an even stronger word than crash 💥. But always good to be reminded to be careful. Thanks very much.
I don’t have LC, but I have Long-everything else, leading to the same debilitating torment. Fasting has done more for me than anything else I have tried. That includes running 100+ miles per week during my younger years.
Fasting has helped a bit but it’s only gotten me so far. And I find when I’m in an adjustment period, I can’t push the fasting too much without getting worse.
WHAT IS THAT IN THE BOWL?
Glad Zira is healing, I’m sure somewhere (really) deep down she is grateful to her mom for sacrificing her own health.
And in another round of are we related, I have been committed to earth burial ever since I heard of it through the urban death project kickstarter. Love that for us
I mean, at this point I’m more shocked when we DON’T have something in common 🤯.
And that’s a toy mouse. There are dozens of them throughout the house and Birdie has taken to, errr, moistening them 🤦🏼♀️. Much to daddy’s chagrin, who wakes up first and has to deal with the crime scene 😂
😂😂😂
Amy, I do hope that your absolutely gorgeous cat can take a moment to drop the attitude and appreciate how lucky she is to have you.
Take good care of yourself and best wishes that you pass through this AP (seems so less traumatic than "a crash" - all for less trauma) as quickly as possible.
Ha! She’s actually a sweetheart (a little spicy when she doesn’t want to be handled or messed with). She just always looks pissed off in photos 🤷🏼♀️
"Adjustment Period" – this is such a good way to reframe apparent setbacks. Thanks for this video (and all the other incredibly useful resources you share). And I hope your (and Zira's!) equilibrium returns soon.
Thank you for reading and for your well wishes! 💛
It’s a really great question that I’m not sure I have much of a helpful response to. For me, my belief that “I matter. My health matters” has been unshakeable. It’s never once waivered and I have been through some hideous times in the past 6 years. Life in the last couple of years has been a lot easier (I’ve been able to function to some extent through attack, it’s been over 2 years now since I last experienced pain to a severe/agonising extent that is around 50% more painful than childbirth - before that this pain scale was my norm - for over 20 years. I didn’t really know pain outside of that - certainly not the mild pain that has been my norm since). Though it did take me 4 years of just keep keep on believing. At the bear minimum I’d lose 2.5 weeks every month but my belief was so strong, I was (&still am) so determined. The world still tells me that what I’ve achieved is impossible (obv can’t have been that bad then to be as well as I am now) but all that keeps happening is my health continues to improve. I’ve received so much physical and energetic healing in the last week, yet the only way forward now is for me to not experience any symptoms at all from month to month. Irrespective of whether or not I fully heal myself (my life is great, I can function, so it truly hasn’t mattered for the last 18 months), I still believe I can heal myself fully. There’s no doubt in my mind at all whatsoever. Even if I don’t. (Maybe I am opening up this as a possibility for future generations of healers, who knows🤷🏼♀️). All I’ve read, digested, understood, experienced tells me I can. The only part that doesn’t is medical opinion. And I see this as it is, opinion. It doesn’t align with my truth.
Very interesting- thank you for taking the time to write all that. I’ll say during my eight years of chronic migraines, while I never stopped seeking help and trying new things to overcome them, I don’t think I had the full belief that they’d ever completely stop. And now with long COVID for four years, it’s only really within the last year or so that my belief in my recovery has been unshakeable. That’s why I’m so fascinated by those who hold onto that faith for years and years. It’s very inspiring!
I’m fascinated by the part our belief system plays in our recovery and wellness (or lack thereof). I don’t see it as the only thing of course but it feels like some type of foundation. I don’t even know where my belief came from but it meant when I went head to head with a “specialist” and he told me not to bother making any changes and that there was no support at all available to me, something inside told me very different (that I needed to make changes and it would take me a long time) and to take back the reigns of creation. I now have a new mantra “creation not control”. Hope to turn this into a blog title at some point because it’s something else I also adopted around the same time as I learnt to let my body lead the way and managed to drown out the noise of every
“Adjustment period” I bloody love that !! I found the affirmation I use at the onset to be very powerful. For me, it has been “this is a relapse and a small one at that” then this time last year, I had an awareness that a huge level up was coming. It meant another 3 month (mild) relapse. But, boy, did that level up come.
I can’t seem to access this link “MedPage Today: Be Wary of Flawed Diagnosis Criteria for ME/CFS” if you are able to resend x
I love that you called it a “level up.” It must have been so hard to view it that way when it lasted three months. Can you say more about how you kept the faith all that time?
Indeed, that link seems broken. Here’s one that should work. I’ll have to fix it in my post later; today is the day Zira’s stitches come out and I have to get a move-on!
https://www.medpagetoday.com/opinion/second-opinions/109274
There was an article in the NYT this week on the increase in school absences. They discussed culture changes from the lock down, decreased value in education and pretty much everything else except the reality of many kids living with long covid. So many children got covid repeatedly early in the pandemic without concern because we were being told they would be fine. They aren’t fine. It’s devastating seeing their lives ruined before they got a chance to begin.
Did you see this? https://open.substack.com/pub/thegauntlet/p/nytimes-invents-increasingly-bizarre?r=o3zsi&utm_medium=ios
Thank you Amy! This article described my outrage from the NYT’s article so eloquently. The constant gaslighting from the media needs to end.
I agree - she made so many good points.
That’s a glaring omission, considering it’s so damn obviously one of the reasons. I bet there’s even kids who don’t necessarily have LC but who are now picking up every bug out there due to lowered immunity after having COVID. SMH…
Hey Amy! I am glad to hear that Zira is on the mend—now it is definitely your turn!
Please don't use the phrase “adjustment period” in any context that others may use to judge your level of disability or the types of accommodations you should get.
I understand why it is beneficial to think about it that way, but you don't want to give bureaucrats any reason to downplay your disabilities. (end of gratuitous advice😊)
Excellent point, Teri! I wasn’t planning on doing that - especially not now, as I gear up for my SSDI hearing in May. To those fuckers, I’ll have to come up with an even stronger word than crash 💥. But always good to be reminded to be careful. Thanks very much.
Hope you're having a good week - x
Not yet but I will ☺️. Thank you!
I don’t have LC, but I have Long-everything else, leading to the same debilitating torment. Fasting has done more for me than anything else I have tried. That includes running 100+ miles per week during my younger years.
Fasting has helped a bit but it’s only gotten me so far. And I find when I’m in an adjustment period, I can’t push the fasting too much without getting worse.