I've had 2 bouts of COVID and am post-menopause. I noticed I started losing words. I'd be saying something, or typing something, and I'd lose the next word.
Everyone has this from time to time. "Oh, it's on the tip of my tongue" is a universal experience. But it started happening often enough that I began to wonder if I was experiencing early-stage dementia or something. Was it stress? Was it a lingering brain fog from COVID that hadn't lifted yet? I even considered getting a referral to a neurologist. It wasn't evident to other people, but I could tell. It's extremely frustrating, when you're a hyperlexic AuDHD with an enormous vocab.
And it's not even that the words are gone. It's like, I'm standing on this side of the street. My vocabulary library is on the other side of the street. I can see it. I can see through the windows where the words are hanging out in there, puttering around, shelving the books of lesser-used words, waving at me through the windows, etc. But I've somehow lost the route to get there myself. My internal map isn't giving me the direction to the specific word I need. UGH.
And then I ran across an article about a study that linked estrogen to brain function. And that's not even mentioning long-term symptoms of hypothyroidism. So a complex/combined neurodivergency, a natural loss of estrogen due to aging, a malfunctioning endocrine system, probably all of it exacerbated by a lingering fog from a viral infection has turned me into this tired, stressed-out wreck. Heh. And now there arre studies that show neurodivergencies have a higher risk of dementia-related issues. Isn't life fun?
Hormones are a thing…I don’t think most people realize how screwing with them can completely wreck you. And I can’t take certain hormones because of my cancer issues. So I just have to deal.
I have brain fog for sure. I cannot concentrate well on reading especially these days. I read this a few times and could not find the punch line of what caused yours...was it Lyme?
Auto immune disorder. Not going anywhere, but treatable. Some days I don’t even notice. But accompanying endocrine issues make this a lifelong problem. There are times I just don’t function very well. Most times, other people can’t tell. Staying off the internet helps. Social media is poison.
I can’t speak for others but some of the things you’ve mentioned in this piece I’ve had to deal with too. What really resonates though is the struggle particularly before we were diagnosed.
I had a wonderful memory. I could remember difficult trivia answers. I got straight A’s in all my classes. Until I couldn’t, and eventually turned out to be a medication I was on. That perfect memory didn’t return, but I was still pretty sharp, until I started having memory problems along with other physical problems, like exhaustion and numb feet. That turned out to be MS. There is a cure for MS, so I went to a clinic in Mexico, had my immune system rebooted, and went back to work. A couple of years ago I started having memory issues, which turned out to be caused by Gabapentin, so I stopped taking it. A lot of the nerve damage from MS is no longer being blocked, and my memory is still wonky. Life goes on.
I’m so sorry. I feel you. But life goes on. Like you, I feel lucky to have most of my capacity back. Memory used to be easy for me, now it’s not. It is what it is.
Big one for me is while rereading my older work, I take notes. Seems weird to do that when I’m the one who wrote it, but it helps me hang on to important points. My writing is much better than it used to be, but I have to be careful to get those plot holes…
Oh, I hear you. I keep detailed notebooks for every project. What kills me is I had three fiction sales right before the Gabapentin started acting up, and that came to a halt. I’ll try again.
We were talking about this yesterday in fibro support group - I think it was a general consensus that it’s the most disabling symptom. It has a special name, “fibro fog”, and as with all things fibro they aren’t sure what causes it. Monday, I remembered to follow up on a text that I couldn’t handle right away when I first got it. I was super excited!
A couple of things I can contribute to your list - do things right away or whenever you think of them. Don’t assume that you’ll get a second chance! And have some daily check-in activities for tracking your own condition - because part of the fog is not noticing how bad the fog is at any given time. I have a set of game-of-the-day solitaire variants that I go through - if I can’t handle Freecell, I’m in trouble. If I can’t handle Klondike, I’m toast. If I can’t handle Spider… I never was all that good at Spider.
I've been fortunate not to have major problems with brain fog, but I have had stretches of being "stuck". I too use various solitaire games as a sort of status check -- but when I'm "stuck", I end up playing endless solitaire. Stuck in a loop. Some months ago, last year, I learned that Ozempic (which I'd been on to maintain pre-diabetic numbers) suppresses dopamine. The purpose of that is to suppress addictive impulses.
But dopamine is what gets one moving and doing things. So, I would think a lot about doing something but then wouldn't get going on it. I would still be sitting playing solitaire, thinking about a project, a couple hours later. So, I've had a discussion with my primary doctor, and I'm going to see how I do sustaining my A1C by watching diet and getting more exercise. But, after something over a month off it, my get up and go has gotten much better. One of the things that has been happening is what you suggest, Clarissa -- the "do something when you think of it." It's rather exciting to feel that happening.
There are so many things that can mess up the workings of our brains. The balance between the psychological and the biochemical can be very tricky. I hope everyone struggling with brain fog finds the right solution for their particular needs!
It’s important for me to limit the noise to signal. So I can’t let myself drown on the internet.
I’m using TODOIST to handle a lot of my stuff. I like it because I can add details of my assignments and clients directly into the program. When I just use a journal, that is too difficult. On a regular calendar, it chokes the calendar and the clutter bugs me. Info HERE: https://get.todoist.io/m5hddcd7io36
I also write general tasks down in a planner pad, and also have a Levenger journal I take everywhere. If I get an idea, I can move the Levenger pages from one journal to the next. If I need to move a task, I just move the note or the page.
So I now have three different backups for my tasks. Two are written, one on the computer. I find writing things in addition to having them stored in TODOIST down REALLY helps. I’m doing all the little things that spark memory, like using colored markers. It’s helping a lot. Good luck to you!
I use TickTick. Been using it for years, the premium sub is very reasonable. But I gotta say, my executive dysfunction sometimes has me marking it done when it's not, because I know I'm not working on the thing that day (I mainly use it to schedule household chores.). It's more like, ok, I can't make myself do the thing, so let's do one of the other things and push this one off to the next scheduled day.
Wow - that had to be brutal. I can’t imagine dealing with that! I’m glad that you’re in a better place now, particularly since we all benefit (he says, looking at the beautiful Good Omens hardcover)!
Will confess now there were times working on Good Omens where it was just…not happening. Getting really sick with something other than just brain fog did not help matters, and general scandal turmoil on top. Just a rough couple of years. Much better now, though.
I think you wrote about that, at least at the end of recovery time. It’s hard when art just isn’t happening, and when your body is fighting you the whole time, it must even be harder.
When I’m on, I can’t waste a minute, I never know when the switch will turn off. It feels criminal to waste it. And when I’m off, it’s hard for others to understand. I may seem a bit spacey, but otherwise fine. But I can not even remember big chunks of time when things get bad. I’ll remember specific incidents if reminded by looking at old journals or emails, but I simply won’t have much connection to the experiences. I can always tell when I’m about to switch on, because sounds become very crisp. Like I’m watching an ASMR video. Everything gets very clean and crisp and I feel very aware of little things like when I’m opening a jar, it just feels epic, like a big, real slice of life.
Yes. So many health concerns can cause similar symptoms, and throw in a chronic condition or two, and little seems to be treated. Thank you for speaking about this subject.
Thank you for sharing this. I have a friend who, post-COVID, is dealing with migraines and who, once, was a creative story crafter (best DM I ever played DnD, etc. with), but the creativity went as he couldn't hold the stories in his head anymore. I hope they figure out something that works for him but so far no luck.
I count myself fortunate that thus far my health issues have not led to brain fog or that level of migraines.
My bout with mental and physical fog was more insidious and WAY more minor than yours. Also temporary. My M.D. ordered a routine blood test (I recommend highly) and found a stuck parathyroid that was pumping out too much calcium. Got two glands removed. I was already a fast walker, but I gained 30-40 minutes a day on my walking mail route!
It is wonderful that you are open and honest about these matters, Colleen. We ain't getting any younger! Get organized and stay that way. (I forget what else I was going to say!) :)
If I don’t write it down, it goes right out the window. But aside from just taking my medication, nothing works for me better than limiting internet use.
I've certainly shifted in my working method from scribbly thumbnails (that become meaningless and incomprehensible to me if I don't immediately upgrade them to layouts, pencils, etc. within 48 hours) and full script with maniacally detailed instructions (dialogue, visuals, psychology of the characters, etc.). That process began for me back in the 80s. If I have to set aside a project for any length of time, it's murder picking up where I left off unless I can read back my instructions in minute detail. That's more narrow than what you are talking about, Colleen. But it's getting to the point I need TTD lists before I can even make it to the drawing board. It's only going to deepen ... :)
That is VERY true for me as well, I do detailed thumbnails now and take notes when I re- read my writing. In the past I carried everything in my head, now it’s impossible. Avoiding social media helps a lot.
I don’t know if it’s a thing for everyone, but I often get pushed to do things in a performative way. I refuse almost all requests. And I get a lot of pushback for it. I’m not immolating myself so other people can warm their hands by the fire.
I’m sorry that you’re going through this, but I appreciate hearing from someone who gets it. if you haven’t been through it, it’s hard to understand. Otherwise, you can seem so normal.
I was taking a walk with someone who kept telling me something over and over, and I just couldn’t get it. This person knows I have this issue, I’ve described it 1000 times, but still they got frustrated with me. I finally burst into tears. “I can’t remember!” They were saddened by that, and I didn’t mean to snap, but I tell people I can’t process and they can’t process that I can’t process.
Last spring was pretty spotty, but now I am doing well and getting a lot done. But I am always running into people trying to pressure me into things like getting into online activism, and I know my limits. And they get pissed I won’t get involved in this or that. But I have no choice but to pick and choose. I have capacity limits.
I ended up in the hospital early last year with a complete physical collapse, vertigo so bad I couldn’t even move my head. I didn’t make a big public thing about it, but these symptoms are all related to my auto-immune disorder. I’m going to keep those strict barriers up, no matter what.
The only thing I like about it is I have to take notes about everything…and I have really pretty Levenger notebooks, LOL! https://amzn.to/4kmlCof
I've had 2 bouts of COVID and am post-menopause. I noticed I started losing words. I'd be saying something, or typing something, and I'd lose the next word.
Everyone has this from time to time. "Oh, it's on the tip of my tongue" is a universal experience. But it started happening often enough that I began to wonder if I was experiencing early-stage dementia or something. Was it stress? Was it a lingering brain fog from COVID that hadn't lifted yet? I even considered getting a referral to a neurologist. It wasn't evident to other people, but I could tell. It's extremely frustrating, when you're a hyperlexic AuDHD with an enormous vocab.
And it's not even that the words are gone. It's like, I'm standing on this side of the street. My vocabulary library is on the other side of the street. I can see it. I can see through the windows where the words are hanging out in there, puttering around, shelving the books of lesser-used words, waving at me through the windows, etc. But I've somehow lost the route to get there myself. My internal map isn't giving me the direction to the specific word I need. UGH.
And then I ran across an article about a study that linked estrogen to brain function. And that's not even mentioning long-term symptoms of hypothyroidism. So a complex/combined neurodivergency, a natural loss of estrogen due to aging, a malfunctioning endocrine system, probably all of it exacerbated by a lingering fog from a viral infection has turned me into this tired, stressed-out wreck. Heh. And now there arre studies that show neurodivergencies have a higher risk of dementia-related issues. Isn't life fun?
Hormones are a thing…I don’t think most people realize how screwing with them can completely wreck you. And I can’t take certain hormones because of my cancer issues. So I just have to deal.
I have brain fog for sure. I cannot concentrate well on reading especially these days. I read this a few times and could not find the punch line of what caused yours...was it Lyme?
Auto immune disorder. Not going anywhere, but treatable. Some days I don’t even notice. But accompanying endocrine issues make this a lifelong problem. There are times I just don’t function very well. Most times, other people can’t tell. Staying off the internet helps. Social media is poison.
Yeah, I spend too much time here. Looking forward to seeing you at LACon.
I can handle Substack, but the other social sites make me crazy.
I’m glad you’ve gotten ahold of it and are doing better Colleen. Reminds me of my struggle with Asperger’s/autism.
Interesting! I didn’t realize it had similar symptoms.
I can’t speak for others but some of the things you’ve mentioned in this piece I’ve had to deal with too. What really resonates though is the struggle particularly before we were diagnosed.
And depression, anxiety, and struggle to function. I still have real bad days too 🖤🫂
Yep. I feel ya.
I had a wonderful memory. I could remember difficult trivia answers. I got straight A’s in all my classes. Until I couldn’t, and eventually turned out to be a medication I was on. That perfect memory didn’t return, but I was still pretty sharp, until I started having memory problems along with other physical problems, like exhaustion and numb feet. That turned out to be MS. There is a cure for MS, so I went to a clinic in Mexico, had my immune system rebooted, and went back to work. A couple of years ago I started having memory issues, which turned out to be caused by Gabapentin, so I stopped taking it. A lot of the nerve damage from MS is no longer being blocked, and my memory is still wonky. Life goes on.
I’m so sorry. I feel you. But life goes on. Like you, I feel lucky to have most of my capacity back. Memory used to be easy for me, now it’s not. It is what it is.
We’re not dead yet…
Big one for me is while rereading my older work, I take notes. Seems weird to do that when I’m the one who wrote it, but it helps me hang on to important points. My writing is much better than it used to be, but I have to be careful to get those plot holes…
Oh, I hear you. I keep detailed notebooks for every project. What kills me is I had three fiction sales right before the Gabapentin started acting up, and that came to a halt. I’ll try again.
AGH! Good luck getting back on track!!!
Thanks!
We were talking about this yesterday in fibro support group - I think it was a general consensus that it’s the most disabling symptom. It has a special name, “fibro fog”, and as with all things fibro they aren’t sure what causes it. Monday, I remembered to follow up on a text that I couldn’t handle right away when I first got it. I was super excited!
A couple of things I can contribute to your list - do things right away or whenever you think of them. Don’t assume that you’ll get a second chance! And have some daily check-in activities for tracking your own condition - because part of the fog is not noticing how bad the fog is at any given time. I have a set of game-of-the-day solitaire variants that I go through - if I can’t handle Freecell, I’m in trouble. If I can’t handle Klondike, I’m toast. If I can’t handle Spider… I never was all that good at Spider.
I've been fortunate not to have major problems with brain fog, but I have had stretches of being "stuck". I too use various solitaire games as a sort of status check -- but when I'm "stuck", I end up playing endless solitaire. Stuck in a loop. Some months ago, last year, I learned that Ozempic (which I'd been on to maintain pre-diabetic numbers) suppresses dopamine. The purpose of that is to suppress addictive impulses.
But dopamine is what gets one moving and doing things. So, I would think a lot about doing something but then wouldn't get going on it. I would still be sitting playing solitaire, thinking about a project, a couple hours later. So, I've had a discussion with my primary doctor, and I'm going to see how I do sustaining my A1C by watching diet and getting more exercise. But, after something over a month off it, my get up and go has gotten much better. One of the things that has been happening is what you suggest, Clarissa -- the "do something when you think of it." It's rather exciting to feel that happening.
There are so many things that can mess up the workings of our brains. The balance between the psychological and the biochemical can be very tricky. I hope everyone struggling with brain fog finds the right solution for their particular needs!
Great post, thank you.
It’s important for me to limit the noise to signal. So I can’t let myself drown on the internet.
I’m using TODOIST to handle a lot of my stuff. I like it because I can add details of my assignments and clients directly into the program. When I just use a journal, that is too difficult. On a regular calendar, it chokes the calendar and the clutter bugs me. Info HERE: https://get.todoist.io/m5hddcd7io36
I also write general tasks down in a planner pad, and also have a Levenger journal I take everywhere. If I get an idea, I can move the Levenger pages from one journal to the next. If I need to move a task, I just move the note or the page.
So I now have three different backups for my tasks. Two are written, one on the computer. I find writing things in addition to having them stored in TODOIST down REALLY helps. I’m doing all the little things that spark memory, like using colored markers. It’s helping a lot. Good luck to you!
I use TickTick. Been using it for years, the premium sub is very reasonable. But I gotta say, my executive dysfunction sometimes has me marking it done when it's not, because I know I'm not working on the thing that day (I mainly use it to schedule household chores.). It's more like, ok, I can't make myself do the thing, so let's do one of the other things and push this one off to the next scheduled day.
Wow - that had to be brutal. I can’t imagine dealing with that! I’m glad that you’re in a better place now, particularly since we all benefit (he says, looking at the beautiful Good Omens hardcover)!
Will confess now there were times working on Good Omens where it was just…not happening. Getting really sick with something other than just brain fog did not help matters, and general scandal turmoil on top. Just a rough couple of years. Much better now, though.
I think you wrote about that, at least at the end of recovery time. It’s hard when art just isn’t happening, and when your body is fighting you the whole time, it must even be harder.
When I’m on, I can’t waste a minute, I never know when the switch will turn off. It feels criminal to waste it. And when I’m off, it’s hard for others to understand. I may seem a bit spacey, but otherwise fine. But I can not even remember big chunks of time when things get bad. I’ll remember specific incidents if reminded by looking at old journals or emails, but I simply won’t have much connection to the experiences. I can always tell when I’m about to switch on, because sounds become very crisp. Like I’m watching an ASMR video. Everything gets very clean and crisp and I feel very aware of little things like when I’m opening a jar, it just feels epic, like a big, real slice of life.
Yes. So many health concerns can cause similar symptoms, and throw in a chronic condition or two, and little seems to be treated. Thank you for speaking about this subject.
Thank you for sharing this. I have a friend who, post-COVID, is dealing with migraines and who, once, was a creative story crafter (best DM I ever played DnD, etc. with), but the creativity went as he couldn't hold the stories in his head anymore. I hope they figure out something that works for him but so far no luck.
I count myself fortunate that thus far my health issues have not led to brain fog or that level of migraines.
My bout with mental and physical fog was more insidious and WAY more minor than yours. Also temporary. My M.D. ordered a routine blood test (I recommend highly) and found a stuck parathyroid that was pumping out too much calcium. Got two glands removed. I was already a fast walker, but I gained 30-40 minutes a day on my walking mail route!
{{{hugs}}} What a bitch of a thing to deal with.
Yeah, super not fun, but I get by.
Oh, and I adore your artwork for Chivalry, and I love your comics work.
Very grateful for that note, thank you.
It is wonderful that you are open and honest about these matters, Colleen. We ain't getting any younger! Get organized and stay that way. (I forget what else I was going to say!) :)
If I don’t write it down, it goes right out the window. But aside from just taking my medication, nothing works for me better than limiting internet use.
I've certainly shifted in my working method from scribbly thumbnails (that become meaningless and incomprehensible to me if I don't immediately upgrade them to layouts, pencils, etc. within 48 hours) and full script with maniacally detailed instructions (dialogue, visuals, psychology of the characters, etc.). That process began for me back in the 80s. If I have to set aside a project for any length of time, it's murder picking up where I left off unless I can read back my instructions in minute detail. That's more narrow than what you are talking about, Colleen. But it's getting to the point I need TTD lists before I can even make it to the drawing board. It's only going to deepen ... :)
That is VERY true for me as well, I do detailed thumbnails now and take notes when I re- read my writing. In the past I carried everything in my head, now it’s impossible. Avoiding social media helps a lot.
Just as our characters proliferate and our imaginary worlds become more and more complex, it's a bigger challenge to keep track of it all
I don’t know if it’s a thing for everyone, but I often get pushed to do things in a performative way. I refuse almost all requests. And I get a lot of pushback for it. I’m not immolating myself so other people can warm their hands by the fire.
Boundaries are necessary and healthy. ❤️
I’m sorry that you’re going through this, but I appreciate hearing from someone who gets it. if you haven’t been through it, it’s hard to understand. Otherwise, you can seem so normal.
I was taking a walk with someone who kept telling me something over and over, and I just couldn’t get it. This person knows I have this issue, I’ve described it 1000 times, but still they got frustrated with me. I finally burst into tears. “I can’t remember!” They were saddened by that, and I didn’t mean to snap, but I tell people I can’t process and they can’t process that I can’t process.
Last spring was pretty spotty, but now I am doing well and getting a lot done. But I am always running into people trying to pressure me into things like getting into online activism, and I know my limits. And they get pissed I won’t get involved in this or that. But I have no choice but to pick and choose. I have capacity limits.
I ended up in the hospital early last year with a complete physical collapse, vertigo so bad I couldn’t even move my head. I didn’t make a big public thing about it, but these symptoms are all related to my auto-immune disorder. I’m going to keep those strict barriers up, no matter what.
The only thing I like about it is I have to take notes about everything…and I have really pretty Levenger notebooks, LOL! https://amzn.to/4kmlCof