Someone pointed out that "brainfog" sounded like a trivial symptom. It really doesn't convey how much the symptom affects our lives, or the fact that it doesn't just go away the next morning ... or the next year or next decade. Something like "Brain crippling" might get a more appropriate response. Maybe someone will come up with a really good term.
"Fatigue" doesn't get much respect either. Everyone is familiar with regular fatigue that goes away with rest, or they might be familiar with regular fatigue from overworking--and expect it to go away at some point in the future--so it's not a "serious issue". I don't have any good suggestions, but it certainly can't help funding for ME research if our chronic symptoms are trivialized.
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.