Should We Have a Better Term than Brainfog?

To me it really did start off feeling like a fog. I'm pretty sure early on I googled "brain fog" trying to figure out what I was experiencing, not realising it was an existing term.

However as I deteriorated from mild to severe the cognitive impairment definitely manifested itself in different ways. Some of which felt experientially like a "fog" and some less so.

 

That said, I did even classify it into types of fog, based on my subjective experience of it.


1. Foggy Fog (Whiteout fog)
When you get the sense that's its hard to "see" or "find" your thoughts, sometimes accompanied by a sensation of kind-of-like a mist descending. You can still find your thoughts but it takes longer and takes intense focus. The farther you walk into the mist the thicker the mist gets and the harder it becomes to find them.

2. Wall of fog
Like whiteout fog but instead of allowing you to walk through it at exponentially decreasing pace, it descends rapidly and you get the sense that 90% of your synapses have "road closed" signs posted on them. If you try to push through it, 90% gradually approaches higher numbers, until you literally can't read words. It can often feel less like a fog and more like a solid wall. Only subsides with complete brain rest. Frequency can be reduced by varying cognitive activities, and spacing them out with lots of rest breaks.


3. Drunk fog
Kind of like whiteout fog but more intense because your thoughts are not only hard to find, but are also less rational, as if you are walking through a drunk haze. Accompanied by an intoxicated feeling like the world is swirling or underwater a little bit — not vertigo but very unpleasant, impossible to socialise coherently in this state.

[For me this one was caused by gluten and stopped happening when I stopped eating gluten. (I don't have coeliac and prior to ME had no problem with gluten)]


4. Spaced Dream
When your whole life feels like a spaced dream. It's like you're not connected to your surroundings fully, like your head is not fully connected to your senses. In other words, some level of fatigue-induced derealization. Even though it doesn't cause confusion or hallucination, it is deeply unsettling.


5. Background fog
Like spaced dream but a constant low-grade, subtle derealization, accompanied by mental sluggishness. You feel connected to reality but also not connected. Like you can experience reality, but only through a window.


6. Thundercloud fog
- a heavy cloud of mental fatigue that descends quickly and hits you, welcoming you into nothingness as you surrender to it and your eyes close. If you fail to surrender, it may morph into 1-3, and/or result in an adrenaline boost which makes you especially wired-but tired. A sure sign that you need to stop or PEM will come with a vengeance down the line.


7. Fog et it.
Why am I here again?
you ask as you put the bottle of ketchup back in the microwave.
... pour cereal onto a plate.
... Put toothpaste on your toothbrush even though you just brushed your teeth already

Basically when you're so absent-minded because of fatigue that you do silly things and forget what you're doing.

(It's when the fog ate your thoughts :facepalm : )

 

Agree and yes I always assumed the term came from assuming they should minimise what we described (to something close to hysterical woman exaggerating her ‘bit if a headache’)

it’s also a major issue because there are very different quite specific symptoms that happen in reaction to different stimuli or situations that we describe that just get rolled into ‘yeah brain fog’ ie we’ve spent years describing scientifically then medicine has been told to train us out if trying to do that to the point it’s his hard to remember because the abuse to stop us trying and tell us to shut up cos no one cares has been so effective

politics in medicine eh twenty years of being told and trained im undesirable and why can’t I learn to shut up

I just want their behaviour logged as that’s what their ‘treatment’ was - and I don’t believe there was any good intention really behind it any way just a spiel to try and get away with it, that I was designated from nothing I did or was just luck of draw when I was born and demographics/ face fits that the getting no care extends to not even been heard or seen or the notes GPs etc take supposedly to admin all this care and alotting of funds and demand and need as a population would be gerrymandered so it wasn’t ’a need’ but was allowed to be put down as something else.

of course now it’s obvious that not being able to wake your brain like you’ve full on concussion would get rejigged into something ridiculous and if they could get away with pushing it into mental health - which was then bringing in that term to demedicalise any symptom they could get away with separating off and saying was ‘just mental’ from the real dualists the bps . But of course not waking up after a bang in the head isn’t mental health so how did they get away with it for us?

I think we need to be careful how we describe these eg I get tip of tongue memory issues when tired and have to circumnavigate for the word but it’s plain obvious it’s utter exhaustion

as above my ‘fog’ feels literally like I’d had a big lead weight dropped onto the top of my head overnight and can’t wake my brain . NOT ‘muzzy headed’ like either a hang over or can’t think straight person.

This ‘fog’ comes with literally not being able to move body not feeling like or perception. Yet of course there is something interesting in what Jonathan says where eg you think is there reflexes in your legs etc , could you move if there was a fire (would still take twenty minutes of brain forcing and finding a way to get body to slide off bed) so there not lack of effort/wish or really messaging (I think you get a message back saying body parts can’t move) because otherwise I wouldn’t have dealt with it by knowing I’d have to set alarm ridiculously extra earlier the tireder I am eg 4hrs early wasn’t uncommon even for an already early start because forcing the body to move and mind to wake took so much . And I’m ‘out of it’ in a different way to what those looking from the outside at me would perceive because it feels very much like locked-in and not ‘can’t think straight /out of it’ in the sense your brain knows high level things like consent and stuff going on around me - sometimes you might go off to sleep but when not it’s not a ‘dream world’ bit as far as that higher level thinking

whereas brain fog pitches it as the opposite- like it doesn’t affect the physical but the ‘thinking straight’ bit. I

I might be too exhausted when I’m mildly cognitive fatigue (by comparison to the wake up in PEm type - where I seen not to wake up) ten mins into a conversation to keep taking on info , process it, reply and so I will be being taken advantage of if forced to reply at someone else’s pace of conversation - where you end up having to just ‘say words’ so get them out in your mouth. But that’s not a competency thing as those only seeing that situation often assume. Weirdly I can often process the info and logic of that whilst I’m seemingly ‘out of it’ in PEM

The 'solution' is in stopping that person taking advantage advertently (yes, you find out 'who people are' with this illness because some really do 'up their game' when they see you like that, where a small proportion adjust and 'do the right thing') or inadvertently (rarer, and harder to really believe other than them being so caught up in getting what they want you are an 'object' so it's sort of the same thing), and NOT in questioning our capacity - stop the people tricking us at our worst moment and pretending they 'can't do the adjustments' and interrupting them so we don't have any 'good moments' because we are being antagonised by stimuli with no long enough gap to recover.

There needs to be a new term that to my mind would be what the definition of safeguarding should be, but doesn't actually cover for us. We need protecting so if someone isn't going to behave and give us a chance to be well by leaving us alone for a few days with peace and comfort, or even longer if they've just put us through something (and multiply that depending on how long it has gone on for before), those people don't get to pretend that didn't happen then waltz in and take advantage. Just like you'd expect them not to try and section someone by going 'ahhhh see you got that question wrong' by getting away with wandering into the room of a normal patient 1hr after they'd had a big op with general anaesthetic then speaking really fast deliberately.

it’s all just branding from them some of which is innate from the people taking it on ie they assume we are idiots to start with so hear something different to what we are saying.

but it’s missing some interesting phenomena- it’s just all that dismissing has made it sadly so much harder for me to describe because of that instrumental conditioning I’ve had for decades of various reasons to shut up or feel silly or scared/vulnerable when describing it.

 

If I think of it like the video of the Ocado robots (groceries stored in Index system then order comes in and robots go to fetch items from correct ‘locker’)

then I think* I agree. It’s not that the items were put on the wrong shelf. Although sometimes I will say a phrase naturally but wrongly ie the word wasn’t quite right to the actual specific one I would have naturally meant if I was ‘on form’ but a ‘close enough on some aspect if meaning or sound alike’ . From what my psych degree back then suggested if nodes and how neural networks works this makes sense

sometimes I’m actively aware I’ve tip or tongue (or nowhere near) on the word or term I need so I have to actively think if a way to circumnavigate what I need to communicate like a game of taboo (where you can’t say ‘the word’ but have to describe it to be guessed by others) - which in itself I’ve got pretty pro at to the point people think it’s a part of my character , but must be huge energy drain in itself and you feel like you are high-wire tap dancing

there’s something incredibly hard about summarising too - whilst retaining the start and end of a sentence if you don’t say it fast enough, get interrupted, distracted can be a ‘classic ME’ where you feel you’ve gif an egg-timer when you are in communication on ‘holding that thought - it feels like the ability to read a paper or a few and then ‘gather’ that overview and analysis can be ‘spot on’ when the brain is firing moment , and yet no amount of work or workaround will get you there when it’s not so doing work means you are always making notes of the points you think of in order to ‘have those’ when you have your next good moment, and can combine them to the more big picture stuff and just say it simply putting your finger on the issue.

it’s very much at the communication end rather than the ‘big concept’ end and so capacity isn’t affected because I can feel my intuition is still ‘ in tact’ (it’s sort of interesting having this because it makes it obvious his thee processes work) having read the same stuff, just not the ‘explaining it’ and ‘sifting which info to talk on’ . I’d say it’s like still being able to get the right maths answer but not show the working or explain why - except there are times where my brain can be so tired that simple maths just counting if adding i feel my body and brain crumbling with exhaustion. Like how many tablets you need to order etc. then someone asks another question on top of it like ‘two extra days for bank holiday’ and that little sun being get to the end-able is blown. So very executive function vs working memory ‘time can hold info’ vs processing vs exhausting body and brain related.