My daughter, 24 yo, has been diagnosed with ME and POTS end of 2020
She is completely bedridden since Oct 2021. Hasn't showered since, lives on drinking food and a little fruit. No tv / phone as least as possible. Living in the dark and suffers from hyperacusis and more.
Communication got less and less because (fear of ?)PEM.
She removed her whatsapp and sometimes sends a message through SMS, no talking
And we have a writing board for short messages.
Goes to the toilet on her own which is beside her bed.
This started a while ago with the intention for her to get as much rest as possible, but it now feels like she's slipping away more and more. By no means do I want to disrespect anyone but when I read people mentioning they are severe I think "well, at least you are able to write this". I don't know...
Want her to do something, wash her face, change underwear, communicate a little, try meds (abilify) , but she doesn't want to. Reacts a bit angry last time I tried something, which is a while ago. So I stopped.
I am afraid if I ask to much I'll make it worse, but like I said, it only seems to get worse
Really, really don't know what to do
She is completely bedridden since Oct 2021. Hasn't showered since, lives on drinking food and a little fruit. No tv / phone as least as possible. Living in the dark and suffers from hyperacusis and more.
Communication got less and less because (fear of ?)PEM.
She removed her whatsapp and sometimes sends a message through SMS, no talking
And we have a writing board for short messages.
Goes to the toilet on her own which is beside her bed.
This started a while ago with the intention for her to get as much rest as possible, but it now feels like she's slipping away more and more. By no means do I want to disrespect anyone but when I read people mentioning they are severe I think "well, at least you are able to write this". I don't know...
Want her to do something, wash her face, change underwear, communicate a little, try meds (abilify) , but she doesn't want to. Reacts a bit angry last time I tried something, which is a while ago. So I stopped.
I am afraid if I ask to much I'll make it worse, but like I said, it only seems to get worse
Really, really don't know what to do