Specific ways brain fog affects everyday life activities

[Ingold12]

I've had ME/CFS-like symptoms for around 5 months, they started mostly with non-cognitive issues like fatigue and muscle pains while the brain fog/ cognitive dysfunction came in a second moment, quite abruptly.

I find it difficult to describe to others what exactly the cognitive issues entail as oftentimes family or friends will remark that, from their outside prospective, they don't notice anything very different in my behaviour.

From my point of view, I notice that I'm more forgetful and lightheaded in everyday activities and activities that were previously automatic, like knowing in which drawer is some kitchen equipment, where I left my phone or where the light switch is when I enter a dark room, require conscious thinking before I act (and produce more mental stress).

The feeling is as if for my brain some information is temporarily unavailable until, some instants later, it clicks (and in the meantime I may have poured water in my cereal).

I've never had a great memory, but I also noticed that remembering a shopping list or the day's tasks takes much more effort. Same with daily routine activities like watering plants or cleaning. It almost feels like my automatic or implicit memory has been faulty for a while. I noticed in addition that sometimes I am a bit dazed or "on autopilot" and I'm capable of listening to a whole conversation without remembering much about its contents.

I have been through some testing around 2.5 months ago, and the neurologist thought my issues were mostly with working memory and a general lack of attention. I suspect that the pain and malaise also contribute to the brain fog by

Does anyone here have similar examples of the ways brain fog affects everyday life activities? I'm mostly wondering if the kinds of issues caused by the cognitive dysfunction/ brain fog of ME/CFS are similar for other people who suffer from this condition.

Also wondering if, on average, the CFS cognitive symptoms tend to start before or after physical symptoms, and if they tend to remain the same even when the physical symptoms wane (I remember reading this in one scientific article).

 

[Rufous McKinney]

I think its hard to generalize about our varied experiences.

This is all new to you. People really vary hugely on how this affects them cognitively. And its all very relative.

I generally can no longer "do" the entirely normal things I did without thinking twice for much of my adult life. Hobbys don't work, skill is missing, things I could simply do without effort like paint or sew or knit or...read...I don't do any of it any longer.

and in the meantime I may have poured water in my cereal).

Yesterday- boiling water, I started to pour it into a small bowl wiht chocolate chips, instead of the coffee cup right next door. Oops.

My husband is forgetful for reasons of older age, we are both capable of burning down the kitchen and five smoke alarms went off twice in the last month. I am not allowed to leave the kitchen if the stove is on: I have to sit in the corner wearing a Dunce Cap. Why am I sitting here? OH the stove is on.

___

they don't notice anything very different in my behaviour.

"Others" are famous for Not Noticing. At least now on phone calls I' ve graduated to friends can tell I can't talk much longer because my voice sounds so horrible.

But the brain:

Its so intense internally. Externally, others just don't "feel the struggle" we feel inside when we think or concentrate. Concentrating is immediately energetically COSTLY.

So anything that requires me to focus, concentrate, plan, hold the idea of the plan together: well in my case that unravels rapidly. And I get intense PEM after from simple forms of concentrating.

I"m reluctant therefore to continue pursuing most pursuits.

Everyday Life:

I no longer do my simple taxes, due to serious math errors.
I only drive a few blocks, passing the DMV test last year was intensely traumatizing.
I feel very vulnerable out in public, mentally vulnerable.
Shopping is a problem more and more. I simply do not evaluate information well, and DECIDING is really hard.

I wrote many things. (reports, articles). Won the spelling bee as a child.

Well I misspell many words now, and I don't really care that much. Its really not that important. Is it?

And tense: I no longer seem to be maintain past present and future. Its all mixed up. I think a Jungian psychitatirst would have a field day with what all that means.

Does the past matter? is this now? What about tomorrow?

My main comment is: be kind to yourself. Because beating yourself up about these things is not helpful in my opinion.

The more I somewhat accept the situation, the less intensely awful it is.

Laughing can help.

 

[Rufous McKinney]

the CFS cognitive symptoms tend to start before or after physical symptoms,

I've been sick for probably my whole life, so can't speak to that. Others around hit more recently probably can.

 

[Rebeccare]

From my point of view, I notice that I'm more forgetful and lightheaded in everyday activities and activities that were previously automatic, like knowing in which drawer is some kitchen equipment, where I left my phone or where the light switch is when I enter a dark room, require conscious thinking before I act (and produce more mental stress).

That sounds very similar to my experience!

I have been through some testing around 2.5 months ago, and the neurologist thought my issues were mostly with working memory and a general lack of attention.

That's typical, I think, for someone with ME/CFS. The issues tend to mainly be with working memory, short term memory, attention, concentration, processing information, and executive functioning.

Does anyone here have similar examples of the ways brain fog affects everyday life activities?

• Looking down at my watch and not being able to remember the time a moment later
• Reading a book and not remembering a character who was introduced more than a few pages ago
• Not remembering whether or not I've locked the door
• Not remembering to respond to e-mails
• Not remembering words (the other day I had to mime the word 'clipboard' to my husband
• Not remembering to add items to my shopping list
• Trouble engaging in any sort of creative work, even simply writing an e-mail to a friend
• Difficulty remembering names, even names of relatives or people I have known a long time

Thankfully there are a lot of strategies which can help with many of these things! For example, I now keep my shopping list on my phone so whenever I realize something needs to be added I can do it immediately. Or when I lock my door I take a few seconds to pull on the knob, and then I say aloud "The door is locked" (if nobody's around ). Post-it notes are extraordinarily helpful. And I often just stop, breathe, and take an extra moment to calmly think and try to remember what I've forgotten.

 

[Rufous McKinney]

And I often just stop, breathe, and take an extra moment to calmly think and try to remember what I've forgotten.

Thats so important!

By creating a less pressured space, we often can come through or work thru the challenge eventually. Being realistic is also helpful. More flexibility and other tricks to reduce stressing about some of this is good medicine.

 

[hapl808]

So anything that requires me to focus, concentrate, plan, hold the idea of the plan together: well in my case that unravels rapidly. And I get intense PEM after from simple forms of concentrating.

I've had this for 25 years. And to be honest, I don't totally blame others for refusing to notice - because I refused to notice it up until it became totally disabling.

For years, I just avoided doing certain things with an intuitive knowledge of how awful they made me feel, but then I also didn't understand why I avoided things and I would just get frustrated. Then I would force myself to do the things, do a mediocre job, and be wrecked for days and weeks. But it seems so nonsensical, that I couldn't make the connection even when it was happening to me.

Even now, I cannot comprehend why any mental exertion crashes me so horribly. The more energy or excitement I put into something, the worse I feel and the faster I crash. That's an awful way to live life, as many here understand.

But how do I explain that to others when I couldn't even comprehend it when I was 10 years in. I think back sometimes to opportunities I had and think, "Why didn't I follow up when I was healthier?" Then I remember that I did follow up, crashed badly, thought I just got "sick" somehow, then life moved on. Or whatever.

So my long rambling is just: I have no idea. I can't even understand the ways cognitive difficulties have affected me because it's not uniform or always predictable. I can read a research paper carefully and feel okay, I can watch a YouTube video on something random and feel okay. But then editing a short video, or doing a videochat, or talking on a fun phone call - will all give me splitting meningitis style headaches, digestive problems (huh?), PEM crashes, etc. No clue why. Obviously I'd give anything to solve this, and I keep hoping I'll stumble across something or find an antiviral that'll fix it or a long Covid treatment that will fix it, but so far it's mostly just worsened over 25 years. I'm now 100% housebound and have been for several years.

 

[Ingold12]

I've had this for 25 years. And to be honest, I don't totally blame others for refusing to notice - because I refused to notice it up until it became totally disabling.

For years, I just avoided doing certain things with an intuitive knowledge of how awful they made me feel, but then I also didn't understand why I avoided things and I would just get frustrated.

I felt the same, for a while, when I first had symptoms. I avoided watching films or series because I somehow knew that the loud sounds and bright images would feel overwhelming, although with time I gradually managed to watch them again. And I'm also hoping that a treatment will be found in the near future.

 

[Ingold12]

Its so intense internally. Externally, others just don't "feel the struggle" we feel inside when we think or concentrate. Concentrating is immediately energetically COSTLY.

I agree, it's also harder to explain to others how concentration and cognition can cost energy. Even some doctors I've come across don't seem to get it.

 

[Rufous McKinney]

Even now, I cannot comprehend why any mental exertion crashes me so horribly.

totally. completely agree.

But how do I explain that to others when I couldn't even comprehend it when I was 10 years in.

totally. Get. It. (laugh, as if I get it)