Yes, a member of my family was on a neurology ward for several months following a stroke. The 24hr noise was almost intolerable - and included nurses gossiping at 4am about their boyfriends in loud voices at the observation station. If you have leukaemia and have to be in isolation facilities are provided, but not for anyone else much.
If you make a request immediately then you can be considered for a side room when one becomes available.As I said, it’s not asking for something unreasonable like a private ward just for one person!
We know that in this case the Psychiatrist is coming into the room opening the curtains on purpose. He shouldn’t be doing that. Whether on a ward or side-room.
It’s reasonable that people minimise noise and light around you where they can do so easily
The request for the adjustment is not based on any diagnosis, just on the ongoing symptom, so Pooh-poohing the MECFS diagnosis isn’t a “get out”
I think part of the problem is that for a healthy person lots of bustle & noise & clatter is unpleasant, but nurses (in general, as evidenced by their actions) dont care about whether your hospital experience is 'pleasant' or not. They dont expeience it as loud because they've gotten used to tuning it out and the patients arent humans equal to them they are in some way "them", they dont see themselves as gossiping loudly in the middle of the night in someones bedroom.
And to add to the problem where these specific cases are concerned... honestly, prior to my developing ME i would have seen Millie (for example, but i saw a video of Carla on the % news piece) i'd have see them in their black eye masks, lying there limp & thin, & whimpering when the curtain was opened &, depending on what mood i was in i'd have thought 'oh for F's sake a tiny bit of light like that cant possibly be that painful!', (to my shame i wasnt the most compassionate person to PwME when in my ignorance i believed it was 'extreme tiredness'. i'd honestly have thought this was a problem of 'teenage girl molycoddled by her parents' syndrome).
Or at best i'd have thought 'ah bless her, of course the light hurts when you're not used to it, i know its hard now but you'll soon get used to it, if i open the curtain it'll help you in the long run'.
(yes i know, prior to having ME i was an ignorant ____!)
I dont know how to get accross to them that its not that, it just not a problem of exposure - where you lie in the dark/silence so 'of course' light & sound are painful & extreme when you first reintroduce them.
But rather it is the opposite... the more exposure there is then the louder/brighter/more painful it gets. So the longer i have spent in dark & silence, the
more sound & light i can tolerate. ITs as i begin to 'tire'... its
as exposure continues that it becomes more & more painful.
So if i've been resting for long enough & then i turn the computer/light on, after the immediate ouch that we all get when turning the light on initially... but after a moment or 2 i can turn the main light on, and turn some music on too & enjoy it, but after a short while the sound & light
become uncomfortable, then painful, & then agony. If i turn the light off the sound goes from agony to merely painful & vice versa.
So Exposure reduces tolerance it does not improve it. IF only it made it better! but do they are think we are so thick as to still have the problem if exposure made it better?!... we are not imbeciles! even at age 12, and parents certainly arent. Of course every parent said 'you need to get used to it' to their kids before accepting that exposure was making it worse.
I dont know how to communicate that to doctors/nurses in a simple way they can understand, because they all just persist in
hearing 'you're sensitive because you're not used to it', regardless of how much you explain.
I think its not helped by the use of the word 'sensitive' or 'intolerant' but i haven't been able to work out a better term.
But i am just recovering from a 3hr trip onto a very small hospital ward (2 beds) for an investigatory procedure, i explained till i was blue in the face, they were otherwise kind & helpful, & they understood a wheelchair....
they did not understand any kind of sensory difficulties.
They dimmed a light but continued crashing about and shouting, and then turning the light back on... ''oh arent you used to the light yet?'', & i explained, but they just couldnt hear it.
It was awful, just awful it made me so ill, & i was only there a short while. What Millie & co are experiencing must be a hell of epic proportion.
