I've been holding it all in for weeks. But now I feel ill and desperately tired and frightened. She doesn't see that. She sees me being her rock, an 'amazing' Mum. The irony is that I used to work in an EDS inpatient service so I've seen alot.
It's all come as such a shock and I haven't slept properly for weeks. I have just tired to phone BEAT but their helpline doesn't open til 5. So I will email them.
There are currently no inpatient beds. She is open to the local EDS intensive support team. She has been re-fed in the local AMU but is still losing weight and struggling. All the light and life she used to have has gone.
I don't know what I want from the thread really. I just need to be able to say how I feel and receive some kindness.