- Messages
- 22
Ive been on here before about my daughter, I have to type this for my daughter, She has had chronic fatigue syndrome for 10 years now, the last three bedbound.
Things have deteriorated a lot,
Just the last year she has become light sensitive and noise sensitive and sits with dark glasses on all day and headphones,
She no longer listens to podcasts or music, cant watch tv, cant bear sound of washing machine or hoover, We have to stay very quiet,
Her legs and arms have now packed in, she cant stand more than a few seconds, Cant dress herself or feed herself, Has to lie down, cant sit in a wheelchair as bending knees hurts,
She lost her voice eight months ago and is permanently sore all over,
We are now looking at how on earth to feed her, as she cant hold a lightweight cup or tumbler and cant even suck from a straw,
Doctors, health professionals, psychiatrist think its all in her mind and we arent getting any help.
She is on loads of medications but nothing seems to help
Regular meltdowns, usually self harming in front of us and begging us to kill her,
She sees her body as an alien thing that she wants to destroy.
She says the real her is long gone, dead, and she hates this body.
It is very ,very upsetting, Myself and my husband arent coping too well , She needs round the clock care, We are both not that well ourselves and our mental health is starting to suffer with the strain
Things have deteriorated a lot,
Just the last year she has become light sensitive and noise sensitive and sits with dark glasses on all day and headphones,
She no longer listens to podcasts or music, cant watch tv, cant bear sound of washing machine or hoover, We have to stay very quiet,
Her legs and arms have now packed in, she cant stand more than a few seconds, Cant dress herself or feed herself, Has to lie down, cant sit in a wheelchair as bending knees hurts,
She lost her voice eight months ago and is permanently sore all over,
We are now looking at how on earth to feed her, as she cant hold a lightweight cup or tumbler and cant even suck from a straw,
Doctors, health professionals, psychiatrist think its all in her mind and we arent getting any help.
She is on loads of medications but nothing seems to help
Regular meltdowns, usually self harming in front of us and begging us to kill her,
She sees her body as an alien thing that she wants to destroy.
She says the real her is long gone, dead, and she hates this body.
It is very ,very upsetting, Myself and my husband arent coping too well , She needs round the clock care, We are both not that well ourselves and our mental health is starting to suffer with the strain