“flares and crashes as “adjustment periods” that are actually necessary for recovery. “ it took me 2 relapses to realise that “relapse is all part of the journey” and then the 3rd to realise that it’s part of our healing on a deeper level. When I went into it this time last year, I intuitively knew that a big level up was coming. It was shit to experience a relapse as part of it but helpful to have such heightened level of awareness. It def makes it easier to navigate and not as brutal an experience.
It’s so fascinating, right? Resting day and night will not get you the adjustment periods necessary for recovery. It’s good for me to know that you expected a big flare and got through it as part of your recovery. Gives me hope!
The first one I experienced was massive. I could have ended it all. Didn’t know what was happening, it felt like the end of the world - add to that the invisibility…🤯🤯
Horror aside, it really is fascinating. We’ve come to teach everything as a linear experience. Nothing is linear. And the lack of understanding on this is painful, traumatising and makes it harder than it needs to be.
Thanks so much for the shout-out, Amy! Very appreciated. And why does it make me so happy that Dr. Epstein lived to be 102?! May he rest peacefully. I was never more relieved to know WTF was wrong with me than getting the diagnosis he helped reveal (though, no one "believed" it was real when I was tested...I had to demand the test); back then, it was known as "They Yuppy Flu". And I'm so for the 32-hr workweek. As I'm structuring my fantasy company, Fridays are off, and so is every holiday known to man (or at least the Federal government). LOL. Here's to getting better, feeling great and keeping our wits about us. xo
I remember the “yuppie flu”! So crazy. Sadly, there are still many docs who are so dismissive. And yes to 32 hours! The two day weekend is barbaric. By the time you run your errands, it’s Monday again 🙄
Amy, what an incredible list of resources and updates. I learn so much in every issue; I'm really grateful for your compilation. Thank you for including my post, too — what a sweet surprise!
4years! That changed so much and forced you into an early exit from a job you loved and was so good at.. .. so damn unfair and crazy! Always thinking of you! Thanks for the newsfeed!
It’s quite amazing, isn’t it? But ultimately, I have to be glad this happened. I’m going to head in another direction professionally when the time is right. One I probably wouldn’t have ever tried had my life not been so dramatically altered. It’ll be exciting!
Thank you for all the important resources you share in every post. I had no idea there was a Long COVID Awareness Day either. So glad there is, though I'm sure we all wish there was no COVID/long COVID period.
So many excellent topics here! I will be taking my time going over this.
A couple of things I will share now:
The brain fog does get better as the brain makes new neural pathways to compensate. I went from very limited screen time and almost no reading to more extensive screen time and paced reading. I have backslid a little as the effects of my second Covid infection have set in, but I'm not all the way back to Square One, and I will be pacing myself a bit more.
About orthorexia: I was actually under its influence from 2009-ish till 2015. I was obsessed with "clean eating" and was starting to go to extremes to ensure my food was totally "pure." Pregnancy, of all things, broke me out of orthorexia. Though I wound up miscarrying, I never got back to the obsessions. These days I'm content to be a vegetarian who treats herself to lavender frappuccinos now and again.
Thanks for reading as always and for sharing what you did. I’ve had the same experience with my cognitive symptoms getting better. The first year was really the hardest - trouble with word retrieval, using the wrong verb tenses, problems with my gait that were definitely neurological. It all got better. Also, I had a brand new brain lesion that I didn’t have before COVID. It hung around for a few years, and on my MRI last year, it showed it was dissolving. Thank goodness.
I’m glad your orthorexia resolved. I’d say the past year is the most obsessed I’ve ever been with “clean” eating. I just met with a nutritionist for the first time ever this past week and she immediately put an end to the super restrictive diet I’ve been on (which was one in a long line of those I’ve tried during my long COVID).
Oh yes, that pesky word retrieval process...and when the word finally came out, often it was a synonym for what I actually wanted to say! 🙄😜 Still happens now and again. That and my train of thought will still leave the station before I've boarded it.
“flares and crashes as “adjustment periods” that are actually necessary for recovery. “ it took me 2 relapses to realise that “relapse is all part of the journey” and then the 3rd to realise that it’s part of our healing on a deeper level. When I went into it this time last year, I intuitively knew that a big level up was coming. It was shit to experience a relapse as part of it but helpful to have such heightened level of awareness. It def makes it easier to navigate and not as brutal an experience.
It’s so fascinating, right? Resting day and night will not get you the adjustment periods necessary for recovery. It’s good for me to know that you expected a big flare and got through it as part of your recovery. Gives me hope!
The first one I experienced was massive. I could have ended it all. Didn’t know what was happening, it felt like the end of the world - add to that the invisibility…🤯🤯
Horror aside, it really is fascinating. We’ve come to teach everything as a linear experience. Nothing is linear. And the lack of understanding on this is painful, traumatising and makes it harder than it needs to be.
Great to hear of the discovery of EBV, as it's possibly at play in my ME/CFS (this and HSV)! Nice one on unearthing this gem and sharing.
🤓☺️
Thanks so much for the shout-out, Amy! Very appreciated. And why does it make me so happy that Dr. Epstein lived to be 102?! May he rest peacefully. I was never more relieved to know WTF was wrong with me than getting the diagnosis he helped reveal (though, no one "believed" it was real when I was tested...I had to demand the test); back then, it was known as "They Yuppy Flu". And I'm so for the 32-hr workweek. As I'm structuring my fantasy company, Fridays are off, and so is every holiday known to man (or at least the Federal government). LOL. Here's to getting better, feeling great and keeping our wits about us. xo
I remember the “yuppie flu”! So crazy. Sadly, there are still many docs who are so dismissive. And yes to 32 hours! The two day weekend is barbaric. By the time you run your errands, it’s Monday again 🙄
Amy, what an incredible list of resources and updates. I learn so much in every issue; I'm really grateful for your compilation. Thank you for including my post, too — what a sweet surprise!
I’m so glad to hear that these roundups are helpful. And, love what you’re doing here and so happy to boost your work whenever I can! 🧡
And whatever you do will be as wonderful as you!
4years! That changed so much and forced you into an early exit from a job you loved and was so good at.. .. so damn unfair and crazy! Always thinking of you! Thanks for the newsfeed!
It’s quite amazing, isn’t it? But ultimately, I have to be glad this happened. I’m going to head in another direction professionally when the time is right. One I probably wouldn’t have ever tried had my life not been so dramatically altered. It’ll be exciting!
Thank you for all the important resources you share in every post. I had no idea there was a Long COVID Awareness Day either. So glad there is, though I'm sure we all wish there was no COVID/long COVID period.
Hugs, Jackie 🤗🧡
So many excellent topics here! I will be taking my time going over this.
A couple of things I will share now:
The brain fog does get better as the brain makes new neural pathways to compensate. I went from very limited screen time and almost no reading to more extensive screen time and paced reading. I have backslid a little as the effects of my second Covid infection have set in, but I'm not all the way back to Square One, and I will be pacing myself a bit more.
About orthorexia: I was actually under its influence from 2009-ish till 2015. I was obsessed with "clean eating" and was starting to go to extremes to ensure my food was totally "pure." Pregnancy, of all things, broke me out of orthorexia. Though I wound up miscarrying, I never got back to the obsessions. These days I'm content to be a vegetarian who treats herself to lavender frappuccinos now and again.
Thanks for reading as always and for sharing what you did. I’ve had the same experience with my cognitive symptoms getting better. The first year was really the hardest - trouble with word retrieval, using the wrong verb tenses, problems with my gait that were definitely neurological. It all got better. Also, I had a brand new brain lesion that I didn’t have before COVID. It hung around for a few years, and on my MRI last year, it showed it was dissolving. Thank goodness.
I’m glad your orthorexia resolved. I’d say the past year is the most obsessed I’ve ever been with “clean” eating. I just met with a nutritionist for the first time ever this past week and she immediately put an end to the super restrictive diet I’ve been on (which was one in a long line of those I’ve tried during my long COVID).
Oh yes, that pesky word retrieval process...and when the word finally came out, often it was a synonym for what I actually wanted to say! 🙄😜 Still happens now and again. That and my train of thought will still leave the station before I've boarded it.
Ha! The workarounds were too funny. I remember pointing to the spatulas and telling my husband “the egg flipper thingies!”