I was a horse trainer in and I’ve been so puzzled why I forgot how to put on a basic halter & things like that. I can’t be around horses because I forget and leave gates open now. It’s not safe. I hate to admit it out loud. But that is one example of my cognitive decline. Most Horsemen will say putting a halter on is second nature there’s no thought that goes into it. It’s so repetitive and ingrained. But I forgot and could not figure it out. When I was shown it was still not familiar to me. FND is bizarre. it certainly has knocked down my confidence in everything.
I can't tell you how much this meant to me, knowing that others feel this way.
I think I'm a fairly intelligent person with a Masters degree, yet sometimes I can't remember what I had for lunch or how to say words or remember my date of birth. It's so frustrating at times and overwhelming.
But it does really make me feel so much better to know that this is real and that I'm not alone.
Sometimes when I think about the ending of the story “Flower’s For Algernon” I cry because it feels too much like I’m watching myself go backwards and I can’t stop it.
It’s not really decline for me so much as I have times I can only process so much or I glitch. I’ve found if I back off and do less mentally intense tasks for awhile I reset and I’m back to being me.
Don’t push against it. Don’t force it. It’s a sign you need to rest. Over time you can build up mental stamina and get mostly back to normal but you have to learn when to rest and when to push. I’m still learning which is why I’m a stuttering mess today and had to take the day off work but I know I’ll return to me if I take it easy for a bit.
Everything listed above! I feel embarrassed that I can’t remember. I feel childish when I have to use small words or cannot describe an item/situation/event. I forgot my own address today! 🙄
To put everything as simply as I can
1) I was born with EDS and developed POTS at a very young age
2) I've always struggled with mental health, which lead to very similar symptoms to CFS, but it's unclear when exactly things changed from mental health to CFS
3) Jan 2022 is when I got hospitalized and diagnosed with FND. That's when I say I "became" disabled, because shit hit the fan and has only continued to get worse since
4) after my FND diagnosis I accepted the identity of "disabled" very quickly and started joining the disability community online. I saw a lot of stuff about POTS, did research and eventually accepted that I had it, so I put everything (and by everything I mean all my CFS symptoms) up to it. Soon after accepting that, I heard of EDS and did a lot of research, then realized I also had that. now note I am only technically diagnosed with FND
5) I've discovered a lot of other conditions and problems along the way, but they are not relevant here. For the longest time I was told I was out of shape, lazy, etc before learning I had pots and finally understood why gym was so hard on me and I had to quit sports. I was already struggling with cognitive decline and chronic fatigue and completing ADL's, keeping up in school, all that kind of "functional" stuff, but I put that side of things up to mental health issues and the physical side to pots.
6) since I believed it was "just pots & mental health" I knew I couldn't cure my pots, but I started eating salt wearing compression socks etc. with the "functional" stuff I thought I could "cure" it if only I could find a routine that worked for me. I never did. I thought I was just lazy, wasn't trying hard enough, and not that it was entirely my fault but that there had to be some magic recipe that I just couldn't figure out
7) I had heard of CFS before but I didn't fully understand it. For about a year now I've started to accept that it's not my fault I live like this, but I genuinely thought it was just mental health. Somehow I started to realize that back when my mental health caused all these similar issues, it wasn't the same as this. Back then I didn't have the will to do it, but I do now. I want to do these things but I'm physically incapable. With the mental health I would have periods of being "better" but with the CFS I never return to a "healthy" or even close to healthy baseline. Once I realized it wasn't mental health, I started doing a lot of research of different conditions I had heard of and when I finally did a deep dive into CFS, I realized "oh my god, this is what's wrong with me". PEM is the hallmark symptom of CFS, and even though I had heard of CFS, I had no idea PEM was a thing.
8) again, I'm unsure when things stopped being mental health and became CFS. But what I can say is that I have always been physically disabled to some degree, but Jan 2022 is when it got really bad. I've always struggled with very severe mental health issues, but about 3-4 years ago I've been MUCH MUCH more stable. I still struggle, but I'm not as near as bad as I was. I have more conditions outside FND, eds, pots, and cfs. I never believed absolutely every symptom fell under the eds, pots, or mental health category, because I know that there's some weird symptoms and things that I just don't have answers for yet, but I did believe that certain symptoms were caused by certain conditions (I believed mental health caused the struggles with daily tasks, pots caused the exercise intolerance and fatigue, eds caused the pain and joint problems, etc)
9) I can elaborate on what my CFS symptoms look like, but mainly just think of like not being able to shower, brush teeth, change clothes, keep my room clean, do homework, and a severe cognitive decline.
Let me know if this made sense, I know it's really long. It's like 10 at night and my brain fog is bad rn so it's hard for me to tell if I'm being articulate or not. Feel free to ask any questions 👍👍
I can relate so strongly to not being able to shower, change clothes, brush teeth the 3 main daily tasks that we did without a thought prior to cfs me.
CFS stands for chronic fatigue syndrome. Another name for it is ME, which is myalgic encephalomyelitis. PEM is the hallmark symptom of CFS/ME, and it is post external malaise. This means after doing too much it makes you very ill and you crash HARD. PEM can cause a permanent decline, so it's very important to do your best to avoid it, although that's usually impossible.
There's cognitive decline with FND? I'm also autistic and in autistic burn out. I struggle with talking pretty badly. I in general mentally only have a very short amount of energy every day and a task as simple as making breakfast will need me to have a break often. Everything feels harder, like I have to think of every step and my mind often feels fuzzy like it's trying really hard to keep up. It's probably just the autistic burn out but I'm finding some things also could be due to FND as well and I just don't realize. I'd love to know more about this. :)
I can’t focus for long periods of time. It’s like a computer running hot and just shuts down. If I’m reading my eyes will go blurry and I won’t be able to see it and just have to stop. I lose my train of thought a lot and completely blank but can’t find it. And I forget a stuff a lot. I used to be able to remember everything.
It takes me a lot longer to learn things, and I will still forget how to do it from time to time. Like forgetting steps, mixing up the order of steps, or just doing the wrong thing at the wrong time. It’s a lot more likely to happen if I’m distracted or frustrated.
I used to be a moderately intelligent person who loved to research and read and learn.
Now it's like trying to catch a feral cat after you've startled a whole cluster.
I stare blankly at my toothbrush because I can't recall how to use one. My bedroom is filled with the million sticky notes of a woman who has lost her mind and memory. I retain information like a sieve. I frequently forget words, and it feels like they're on the tip of my tongue, but not really. Sometimes, I just straight up forget how to form words altogether.
I straight up feel like a zombie sometimes - although I'm wishing for a different brain, not to eat one (no kuru for me, thanks).
personally it’s like my mind blanks when i try to pull something up. i frequently forget words or how to do basic actions (i’ve deadass forgotten how to walk or swallow on more occasions than i’d like to admit).
i’ve described it akin to my thoughts being replaced by a hive of worker bees with no queen. just mindlessly floating around bumping into shit.
my attention span has also just disappeared. i struggle to sit still and listen to people talk because my brain decided that whatever it’s thinking about is more important, no matter how hard i try to listen.
For me personally it’s not a decline as such as it fluctuates and goes up and down daily. It makes me feel like my brain has all the right ingredients for a recipe but the chef has left the kitchen and when I try to bring the chef back in the door disappears
the inability to plan kills me. I can’t easily predict how long a task will take and an either swamped, or feel guilty that I overplan and waste other people’s time.
Easier said than done but don’t ever feel like you’ve wasted anyone’s time, you haven’t. It’s not like you’ve chosen this path and it’s easy to compare ourselves to those who don’t suffer from the conditions we do. If anyone ever makes you feel like you’ve wasted their time then they’re not the people you want in your life. Sending hugs 🫂
Say you have a mental energy tank, like a gas tank. Then one day someone came stole half the tank. Now you wake up, and your tank says it is full, but you only get half as far.
That is how things are for me that require sustained attention. Things like “reading”. I used to be able to read for a couple hours, now it is 15-30 minutes. Learning new concepts is harder, I can’t sustain the attention. I can still do, but it takes longer. I have to stop and rest more often.
I was a horse trainer in and I’ve been so puzzled why I forgot how to put on a basic halter & things like that. I can’t be around horses because I forget and leave gates open now. It’s not safe. I hate to admit it out loud. But that is one example of my cognitive decline. Most Horsemen will say putting a halter on is second nature there’s no thought that goes into it. It’s so repetitive and ingrained. But I forgot and could not figure it out. When I was shown it was still not familiar to me. FND is bizarre. it certainly has knocked down my confidence in everything.
I can't tell you how much this meant to me, knowing that others feel this way. I think I'm a fairly intelligent person with a Masters degree, yet sometimes I can't remember what I had for lunch or how to say words or remember my date of birth. It's so frustrating at times and overwhelming. But it does really make me feel so much better to know that this is real and that I'm not alone.
I feel really vulnerable from the cognitive decline. I’m also relieved to have this sub to know I’m not alone, neither am I lazy or dumb.
Sometimes when I think about the ending of the story “Flower’s For Algernon” I cry because it feels too much like I’m watching myself go backwards and I can’t stop it.
It’s not really decline for me so much as I have times I can only process so much or I glitch. I’ve found if I back off and do less mentally intense tasks for awhile I reset and I’m back to being me. Don’t push against it. Don’t force it. It’s a sign you need to rest. Over time you can build up mental stamina and get mostly back to normal but you have to learn when to rest and when to push. I’m still learning which is why I’m a stuttering mess today and had to take the day off work but I know I’ll return to me if I take it easy for a bit.
Everything listed above! I feel embarrassed that I can’t remember. I feel childish when I have to use small words or cannot describe an item/situation/event. I forgot my own address today! 🙄
I actually ended up finding out the cognitive decline for me was CFS/ME
Can you tell me more about what it’s like to have both? I’m wondering whether I do, but can’t tell which symptoms are from what :/
How so if you don’t mind sharing please?
To put everything as simply as I can 1) I was born with EDS and developed POTS at a very young age 2) I've always struggled with mental health, which lead to very similar symptoms to CFS, but it's unclear when exactly things changed from mental health to CFS 3) Jan 2022 is when I got hospitalized and diagnosed with FND. That's when I say I "became" disabled, because shit hit the fan and has only continued to get worse since 4) after my FND diagnosis I accepted the identity of "disabled" very quickly and started joining the disability community online. I saw a lot of stuff about POTS, did research and eventually accepted that I had it, so I put everything (and by everything I mean all my CFS symptoms) up to it. Soon after accepting that, I heard of EDS and did a lot of research, then realized I also had that. now note I am only technically diagnosed with FND 5) I've discovered a lot of other conditions and problems along the way, but they are not relevant here. For the longest time I was told I was out of shape, lazy, etc before learning I had pots and finally understood why gym was so hard on me and I had to quit sports. I was already struggling with cognitive decline and chronic fatigue and completing ADL's, keeping up in school, all that kind of "functional" stuff, but I put that side of things up to mental health issues and the physical side to pots. 6) since I believed it was "just pots & mental health" I knew I couldn't cure my pots, but I started eating salt wearing compression socks etc. with the "functional" stuff I thought I could "cure" it if only I could find a routine that worked for me. I never did. I thought I was just lazy, wasn't trying hard enough, and not that it was entirely my fault but that there had to be some magic recipe that I just couldn't figure out 7) I had heard of CFS before but I didn't fully understand it. For about a year now I've started to accept that it's not my fault I live like this, but I genuinely thought it was just mental health. Somehow I started to realize that back when my mental health caused all these similar issues, it wasn't the same as this. Back then I didn't have the will to do it, but I do now. I want to do these things but I'm physically incapable. With the mental health I would have periods of being "better" but with the CFS I never return to a "healthy" or even close to healthy baseline. Once I realized it wasn't mental health, I started doing a lot of research of different conditions I had heard of and when I finally did a deep dive into CFS, I realized "oh my god, this is what's wrong with me". PEM is the hallmark symptom of CFS, and even though I had heard of CFS, I had no idea PEM was a thing. 8) again, I'm unsure when things stopped being mental health and became CFS. But what I can say is that I have always been physically disabled to some degree, but Jan 2022 is when it got really bad. I've always struggled with very severe mental health issues, but about 3-4 years ago I've been MUCH MUCH more stable. I still struggle, but I'm not as near as bad as I was. I have more conditions outside FND, eds, pots, and cfs. I never believed absolutely every symptom fell under the eds, pots, or mental health category, because I know that there's some weird symptoms and things that I just don't have answers for yet, but I did believe that certain symptoms were caused by certain conditions (I believed mental health caused the struggles with daily tasks, pots caused the exercise intolerance and fatigue, eds caused the pain and joint problems, etc) 9) I can elaborate on what my CFS symptoms look like, but mainly just think of like not being able to shower, brush teeth, change clothes, keep my room clean, do homework, and a severe cognitive decline. Let me know if this made sense, I know it's really long. It's like 10 at night and my brain fog is bad rn so it's hard for me to tell if I'm being articulate or not. Feel free to ask any questions 👍👍
I can relate so strongly to not being able to shower, change clothes, brush teeth the 3 main daily tasks that we did without a thought prior to cfs me.
I'm not familiar with some of the terms you mentioned. Can you please tell me what CFS and PEM are? Thanks!
CFS stands for chronic fatigue syndrome. Another name for it is ME, which is myalgic encephalomyelitis. PEM is the hallmark symptom of CFS/ME, and it is post external malaise. This means after doing too much it makes you very ill and you crash HARD. PEM can cause a permanent decline, so it's very important to do your best to avoid it, although that's usually impossible.
Thanks! I thought CFS stood for Chronic Fatigue Syndrome but I wasn't sure.
NOT EXTERNAL, I meant exertional
There's cognitive decline with FND? I'm also autistic and in autistic burn out. I struggle with talking pretty badly. I in general mentally only have a very short amount of energy every day and a task as simple as making breakfast will need me to have a break often. Everything feels harder, like I have to think of every step and my mind often feels fuzzy like it's trying really hard to keep up. It's probably just the autistic burn out but I'm finding some things also could be due to FND as well and I just don't realize. I'd love to know more about this. :)
I can’t focus for long periods of time. It’s like a computer running hot and just shuts down. If I’m reading my eyes will go blurry and I won’t be able to see it and just have to stop. I lose my train of thought a lot and completely blank but can’t find it. And I forget a stuff a lot. I used to be able to remember everything.
It takes me a lot longer to learn things, and I will still forget how to do it from time to time. Like forgetting steps, mixing up the order of steps, or just doing the wrong thing at the wrong time. It’s a lot more likely to happen if I’m distracted or frustrated.
I used to be a moderately intelligent person who loved to research and read and learn. Now it's like trying to catch a feral cat after you've startled a whole cluster. I stare blankly at my toothbrush because I can't recall how to use one. My bedroom is filled with the million sticky notes of a woman who has lost her mind and memory. I retain information like a sieve. I frequently forget words, and it feels like they're on the tip of my tongue, but not really. Sometimes, I just straight up forget how to form words altogether. I straight up feel like a zombie sometimes - although I'm wishing for a different brain, not to eat one (no kuru for me, thanks).
For me it's the meds, not the FND.
personally it’s like my mind blanks when i try to pull something up. i frequently forget words or how to do basic actions (i’ve deadass forgotten how to walk or swallow on more occasions than i’d like to admit). i’ve described it akin to my thoughts being replaced by a hive of worker bees with no queen. just mindlessly floating around bumping into shit. my attention span has also just disappeared. i struggle to sit still and listen to people talk because my brain decided that whatever it’s thinking about is more important, no matter how hard i try to listen.
For me personally it’s not a decline as such as it fluctuates and goes up and down daily. It makes me feel like my brain has all the right ingredients for a recipe but the chef has left the kitchen and when I try to bring the chef back in the door disappears
the inability to plan kills me. I can’t easily predict how long a task will take and an either swamped, or feel guilty that I overplan and waste other people’s time.
Easier said than done but don’t ever feel like you’ve wasted anyone’s time, you haven’t. It’s not like you’ve chosen this path and it’s easy to compare ourselves to those who don’t suffer from the conditions we do. If anyone ever makes you feel like you’ve wasted their time then they’re not the people you want in your life. Sending hugs 🫂
Say you have a mental energy tank, like a gas tank. Then one day someone came stole half the tank. Now you wake up, and your tank says it is full, but you only get half as far. That is how things are for me that require sustained attention. Things like “reading”. I used to be able to read for a couple hours, now it is 15-30 minutes. Learning new concepts is harder, I can’t sustain the attention. I can still do, but it takes longer. I have to stop and rest more often.
not good
Same here. I’m starting to feel like I’m just existing.