I know you’ve used the term subtle in a different way (ie talking scientifically) but in reality PEM isn’t something that is subtle when you see it in someone like me. I don’t know whether during glandular fever you had days where you’d be out of it eg fur 40hrs straight. Then move for an hour and back to the sane for days. Goodness knows what it looks like to outsiders but it’s completely and utterly out of it and debilitated when it’s accumulated and absolutely defenceless. I’ve had it for over a week whilst on a holiday so nothing to do with stress or preference when you’d rather have scraped out to a sunliunger if it was just tired. And there’s been no level of my illness where that severity of that has been different so I don’t get people describing PEM like being tired.
The important bit is that those who’ve had to keep pushing beyond this threshold not only had the most misery of a life doing so but ended up with deterioration from it . You keep having to live in a world of there always being some new undermining out their foot out ‘because think they know better’ no matter how ill you’ve been made from being tortured by not being believed or ‘just try and if it doesn’t works’ over and over until you can no longer fend gif yourself there is still a new awful person who comes in and say don’t help them
it’s a living nightmare of callousness and deterioration and being stared at fir the impact of that as pathetic to justify the next round of watching you scrabble with even more disability to survive whilst being ridiculed
so it does operate like a progressive dusease if you have to try and survive and you live in a world that acts as BACME and others suggest they either should or can . One where you beg for a break and just get your energy wasted.
I’m sorry but I jettisoned me for many years thinking I had the muscle but but wasn’t sure on the brain bit. But the reaction fir me is so extreme my life has been literally like watching the videos from the 90s of Kleine Levin or sleeping princess except being forced through cruelty to ‘make myself work’ so I’m that inside with twenty hours of planning and scraping and caffeine just to look ok enough people stop threatening me . And then being able to find some time I can hide from people and be safe and get that collapse into it for those days I can due to having exerted.
all I’ve had all my life is idiots standing round me talking nonsense about stuff I should do whilst I felt like I was scrabbling on the floor and their ideas summed up to treating me like I was behaving badly and threats.
then then being smug as if it was then as I faked at great pain to me and aftermath and long term throwing my body down the well . And now I’m stuck and can’t move or speak much still no one believes me and just runs to give their help to the ‘fatigued’ because they are easier to help and there are no services gif us still. They don’t even want to give us as much help as at least acknowledging there is no help and backing up our testimony we have nothing we can access.
I’ve never been able to escape being forced constantly above threshold and now I’m in a terrifying place.
cfs is a real problem because it’s permitting resource to go anywhere but us and fir us ti be treated like we are naughty rather than the ones who tried the hardest
it’s clear there is something medically very wrong with me but as soon as someone was allowed to put that label on me no one investigated with any proper gusto just that feeling of the odd but from someone doing their best but still helping the person who might be ‘functional’ . Whilst I was left to try and make people happy in a workplace by overworking to compensate by having a use desoite not being able to be reliable due to my body.
that we are getting conned back under BACME who the psychological harm of being controlled and having my voice when I tried and used all my energy to explain the symptoms over rude it with rumour. After all this struggle. Still no one knew who will just see or hear me and not try and control me. I can’t have that anymore I can’t tell you how horrific the impact that has been. And giving voices who had something twenty years after I was quietly struggling thru, git lots of space vs me and ‘recovered’ from whatever tiredness they had then expecting me to listen to their nonsense when if they did have the same thing the difference was both severity and how different our worlds were to us.
every day is how am am I going to manage to do something impossible otherwise I won’t survive now. And finding out no help is accessible to me then anyone I tell first doubting me then covering it up as if they don’t care or see it as my fault or it’s just a little thing ‘because others have cfs’ in their mind.
mots hard to describe the horror of how the world is to us. I think I have always had something quite different to others even when fir me it’s been more mild and I’ve been less debilitated between cycles but I don’t hear of others not being able to wake at all and scrabbling like a cockroach on their back whilst being shouted at, still out of it just desperately trying to find either somewhere safe to collapse or caffeine to drink fir ten hours to finally be able to speak fir a short time to defend myself. Whilst in agony with aches. Then some idiot telling me how to use my time I don’t have. The same ones responsible for the world I’ve been surrounded by.
Not the one the MEA was involved in; one that asks people newly referred to services to give a snapshot of their lives before they became ill.
