I've been deteriorating and I live alone. I've recently had a horrible ordeal at my local hospital where I was told I had “no weakness”, by numerous professionals. They didn't even write down my symptoms accurately, for example “severe tiredness” as reason for admission (which wasn't what I'd explained). I am at home now but I am so weak I can not cope. I have carers come in for 45 minutes a day but this is not enough. I always wondered if it was a myth, people being refused help from social services unless they take a mental health referral. Well now I know first hand that it's real. During my hospital stay they said I had to take a combined social services and mental health referral because I didn't fit into any disease category and couldn't get long term social care & support any other way, which means I didn't really have that much choice even though they said it was up to me. So far this ultimatum of mental health referral or no social help has not been put in writing despite me asking them to do so. I am not saying all mental health workers are sinister however I am genuinely scared that I could be sectioned, and deteriorate rapidly, with no one willing to fight for me or my rights. I can't stand the noise in hospitals, it really makes me worse, but no one truly acknowledges these problems, they see it as a minor thing. My family don't see this as a physical illness, I don't speak to them any more except for one family member who I'm sure would not fight for my rights or challenge the powers that be. Even if I'm sent to an ordinary hospital I will deteriorate quite rapidly due to noise and other problems. I never said “I have ME”, doing so would have meant digging myself a deeper hole, besides I became disillusioned with such illness labels years ago, however it seems staying silent won't avoid psychosocial viewpoints and the problems surrounding them. I've tried to engage with what's been offered so far, I haven't dismissed them immediately (including physiotherapy) but my outlook is grim. I'm getting worse day by day, I am so weak by night time that I can barely manage to take my medications. I've never had recovery/remission cycles and only have bad days. I urinate into bottles next to my bed and struggle to open water bottles to stay alive. I'm only 29.