Thread by @Fighting4M_E

After 6 weeks in hospital with severe gastro issues and needing my PEJ tube resited. They believed I was drug seeking the first 2 1/2 weeks because I was asking for antiemetics that worked. Even though they saw my PEJ wasn't right, they didn't apologise they booked it in before

the media ran my story which they knew about. Being ignored and then suddenly rushed in on a Saturday night? Erm ... not worrying at all!
So they have got 2 psychiatrists involved regardless of I want them in the background or not. This I was told didn't need my consent!

I mentioned I had ME to the consultant and next thing I have 2 pysch, the head quack actually told me the PACE trial wasn't flawed and that pyschs just wanted to help PwME!! He didn't like that I was a campaigner for those of us living with disabilities! He also told me that I

I didn't have medical PTSD within 5 minutes of meeting me. He'd not read my notes and didn't like it when I said I was diagnosed last year by a therapist. He was gaslighting and to be honest the smidge of trust I did hold onto was totally broken. It's medically proven my GI tract

has peristalsis dismotility all the way through. I can have as much of Oxycondone and Diazapam as I want but can I get them to give me antiemetics that stop me throwing up? I've been told I've go to live with it, ok but make it bearable is my argument. I live with chronic pain

but when I get a bad flare then I'm stuffed. I was lied too over and over, I bruised the ego of a consultant Dr De Silva who was able to get advice from a professor who specialises in EDS/ME and cases like mine. Arrogant man said he wouldn't take the advice and being a prof means

nothing. I told him he was a trigger and I didn't trust him. He didn't care about the medication errors or the fact another consultant had taken me off a profalaxis for UTI's and put me on a medication for my liver. I have no issues with my liver!! Apparently 'he said he didn't

know what he was thinking'. Still had to turn it down with the nurses everytime because I know I shouldn't take it but no profalaxis either! NO patient should be told by nurses 'oh you know what your doing with your meds, I jave patients to wash'! I mean yes I'm suppose to be one

Of those patients but kindness is taken out of context and being treated like a mug because I have covered a lot for them. I've helped nurses out who have got my meds wrong but it shouldn't happen. Like it wasn't down to me to console crying nurses because they made the error.

I consoled them because I'm bloody human and some of those nurses and all of the doctors. They don't care. They have targets and their own agenda to push. They don't believe in working together but for the patient just to do as they are told. We'll I'm not that patient.

I was not safe that I discharged myself as I would prefer to die at home than in hospital surrounded by docs who and I quote Mr Simmonds "messing around in the dark really when it comes to the gut as we really don't know enough and that's in general and without complex health"

I'm home and now I have to decide what to do. I was friends with Merryn Croft and Kara Spencer who have both passed away from ME. I refuse for this to be my time. In the mean time please note that EDS is now being treated using the biopyschosocial model
#EDS #MEACTION #MECFS

Now the Royal Berkshire Hospital in Reading is very negligent towards a lot of gastro patients that I have witnessed in the full 17 week stay with a pause in between. I'm refusing to die and I don't know how but I'm going to fight with my last fibre to live regardless. I just

need your help. I need get tertiary care and a new GP. Please help me by retweeting and lets get some important issues out there. ME and EDS are very real and can be fatal. I don't want to be another name linked to a death we can prevent now.

#EDS #DisabilityTwitter #BerrysArmy