🧵 No pity party please! I’m lucky compared to others. If there was one thing I would change, it would not to have intimate care. It was easier when I was younger because that’s natural for someone to help. Adulthood feels more of a bug bear. 1/2

https://twitter.com/goddesstobyxx/status/1772986924472410306

21 - 26 I was paralysed neck down, non-verbal and reliant on someone to do everything for me. Fortunately I improved but still need 24/7 intimate care. Becoming non-verbal, I realise the increased vulnerability - can’t scream, shout, call someone if a man turned up. 2/4

🧵 Had PEG check up & care plan form proved again how much the @NHSuk has let G.I poison it. 1st Q ‘are you female or male?’ 2. ‘do you identify as either?’. I don’t identify as either, I’m a woman. No mention of sex which is what matters. Why is this important with PEGs? 1/5 PEG tube enters stomach through the abdominal wall. Procedure requires sedation & drugs during/after - dosage based on sex. Complications inc. aspiration & bowel perforation. Aspiration risk factors inc. structural differences between the sexes. 2/5

🧵 Using my knowledge & my own experiences - I aim to improve things for non-verbal (NV) patients & those who need same-sex care in hospitals. Most of what I endured was no courtesy, respect, privacy or dignity. If those who are affected don’t try & improve things, who will? 1/4 I’m fortunate: Have people who care. Friends & followers who were ready to rescue me! Mum around. I’ve facial expressions & enough hand movement to gesture. Palliative & hospice teams on side. I know many aren’t as fortunate. I feel immensely worried, more than I was for me. 2/4

🧵 Nightmare continues. I wasn’t sure about sharing what went on y’day as it was horrific but people should know what I’m about to say. Wednesday evening I decided, with realistic & honest chats with my team that I wanted to leave. 1/5 I’d be no worse off at home. I’m in a lot of pain and can’t manage too much down my tube, trying my best. Disgracefully I wasn’t told (though the nurse lied that she told me. I write everything down due to memory loss) that I’d been placed on 24hr section so I couldn’t leave. 2/5

🧵 Using my knowledge, what I’ve learnt 2nd hand on here & my own experiences - I aim to improve things for non-verbal people in hospitals. Whilst much of it is lack of courtesy, if those who are affected don’t try & improve things, who will? I’m aware that I’m fortunate: 1/4 Fortunate to have family & friends. Friends who were ready to rescue me! My mum who’s been there most of the time. That I have facial expressions & some hand movement to communicate. Finally, good palliative & hospice care teams on side. I know many aren’t as fortunate. 2/4

🧵 Don’t want to bang on about being non-verbal but I think it’s only right I’m honest. None of my friends are non-v & if it helps others/raises awareness by talking about it that can only be good. Not that I consider myself the Queen Oracle or anything! 1/2 I’m due to have my first serious procedure later today all being well which is to have my PEG fitted. Whilst I’m chuffed it’s a step towards going home I can’t pretend I’m not nervous. Being non-v is manageable but feels like a loss of control at times. Times like this. 2/2

🧵 The most degrading experience since I was non-verbal. Actually, I’ll say what happened. Not for pity but to show how horrible it can be, especially from medical people who should do better. Never had the same from a member of the public by the way 😌 1/3 Starts asking my mum what’s HER name & HER dob. My mum tells him to read it out & she’ll nod. He asks again & whacks me on the arm saying HELLO to try get my attention when I already had smiled. My mum tells him ‘she can understand everything you say she just can’t speak!’. 2/3

I don’t want pity and although I’m honest on here I try not to talk too much about my condition apart from the basics. Not out of embarrassment but I know people are worse off and I’m by God’s grace, a naturally positive person & tough. But this afternoon the changes hit me. 1/6 Went to the pub with my family for a special occasion, I wanted to go. However, not being able to speak at social things is isolating and even with speech apps, my brain can’t keep up with conversation to then type which is hard when can’t think of the words. 2/6

🧵 If there was ever a ‘disability visibility day’ I’d want no part in it. I’m not keen on the splitting of minority groups up by days/months. I’m ok with international disability month (IDM) as it’s international - not just because I’m disabled. This is why I’m ok with it: 1/6 The UK isn’t perfect but compared to other counties, we aren’t in chains locked in our houses excluded from society or killed for witchcraft. The abuses in some countries, not exclusive to non-developed counties disgust me & make me feel most fortunate to be born in the UK. 2/6

🧵Tonight’s #Dispatches is heartbreaking and makes me angry. Having been in a psych hospital with a physical disability, there for my mental illness, it was awful enough. To lock away autistic women & girls indefinitely is cruel. 1/3 The friend I made when we were inside, she’s an autistic female. Been in and out for 10+ years. Yes she needed mh treatment but she doesn’t cope in the environment. These places are noisy & chaotic. As this is showing, sexual abuse, assault and rape sadly isn’t uncommon. 2/3

🧵Tonight’s #C4Dispatches is heartbreaking and makes me angry. Having been in a psych hospital with a physical disability, there for my mental illness, it was awful enough. To lock away autistic women & girls indefinitely is cruel. 1/3 The friend I made when I was there she’s an autistic female. Been in and out for 10+ years. Yes she needed mh treatment but she doesn’t cope in the environment. These places are noisy & chaotic. Also, as this is showing, sexual abuse, assault and rape sadly isn’t uncommon. 2/3

🧵 Since writing about my experience of psych hospital the women who’ve told me their stories proves these places aren’t safe for women. Women at their most vulnerable with no escape, with various other issues & often have male induced trauma. As a result of our experiences.. 1/6 We don’t trust authority or those who are meant to care if we need support or are in a crisis. Me & other women purposely avoid asking for help or tellingly told by medical professionals that psych facilities are best avoided even when very unwell. 2/6

🧵 My friend who I met in the psych ward is back in. We were 18. The hell hole we were in, every waking minute of the day surrounded by aggressive sexualised men who were much older & physically dominating. Now my friend is not safe from them at night, thanks to Annex B. 1/4 We often talk about how we know few people care about women like us in those places. We’re not women in sport or in respected careers where men are intruding. That’s naturally easier for people to understand. We’re thought of as ‘damaged’, ‘messed up’. 2/