Hi Looby62,I'm sorry you and your daughter are going through this too
It seems to me that as there is no cure, which by the way I am sick of them telling me!, we are just taking up valuable time that could be spent on someone who might actually get better.
I'm with you on this. But I dont understand why they do it. With EDS/HMS 'No cure' does not mean the same thing as 'condemned to suffer with no chance of symptom improvement'. I get
that nothing can cure the underlying genetic mutation and that this is something I will have for life but the quality of that life isnt dependant on the EDS its dependant on how well thats managed which is exactly why I'm asking for help to manage it better. That isnt denial of the fact theres no 'cure'
Thanks for the suggestions.I've had a look at the Stanmore threads,and some blogs of peoples experiences of their three weeks there,and its way beyond my abilites to cope with their residential programme unfortunately. Its also the other side of the country from me so just not feasible for outpatients appointments. I know some people will travel as far as it takes to find a chance of help but practically and physically I cant,unless someone has a helicopter I could borrow...
Having a long term health condition dosn't preclude you from having or getting any other infections or problems
I know,it seems obvious doesnt it,and if someones long term health condition isnt being well managed its even more
likely the exhausted,rundown person will get 'normal' infections and health problems on top. Most of which I'd never bother going to the gp about,just like I dont bother going to her for the majority of EDS related things that would have a 'normal' person calling ambulances for. So when I do go to her it means the problem is ultra unmanageble and I need her help the way 'normal' patients need her help,as a gp whos supposed to know stuff and give a monkeys about her patients suffering. Just dont seem to be able to get that through to her though.
Make a complaint
Unfortunately (again,I know,its boring) I'm now in the position,that I suspect others here will recognise,of being seen as 'someone who makes complaints' rather than someone who has legitimate grounds and justified reasons for making complaints. The more you try to stand up for and assert your rights the more youre seen as a 'troublemaker' and ignored. And none of my complaints have ever helped or changed anything,however I've worded them and whatever channels I've gone through,so I'm left feeling utterly powerless and that isnt where I need to be to cope with my life at the mo so I'm trying to stay away from that route for a while. Which is very hard when I want to be complaining from the rooftops,but its picking the battles isnt it. I am planning to change surgerys but I need to find a gp who will work with me,from the limited choice there is in the back of beyond,and that needs energy and effort thats all being used up coping with this extra pain. Gah.
My support workers back tomorrow so I'm going back to the gp to try again. My ears bleeding now so maybe that'll get her attention
Its got mine but I'm deliberately not googling coz scaring myself isnt going to help and theres nothing I can do till tomorrow anyway She (support worker) always comes in to appointments with me,often she goes to my gp appointments without me coz we've found me not being there seems to work better all round.. She spends a lot of her time trying to get other professionals to understand that I'm a human being despite my diagnoses and visible disablities but it is like talking to brick walls when theyve already made up their minds that I'm an untreatable alien.
Thanks everyone for your welcomes. I do occasionally do things other than moan,honest..