Advice on how to cope with FND when you are autistic and have mh issues too

Swiftie00

Firstly I'd like to say I didn't read the 'Get Started ' page so didn't realise my first post would be in the say hello chat. I went more in depth on my story in there and I'll try not to repeat myself too much because I don't want to unintentionally spam this platform.

So I was diagnosed with FND (well, I was diagnosed with conversion disorder but I have recently learnt that is a wrong term used for FND) about 15 years ago I think. I experienced vision loss for a while, when I was at school, I experienced loss of mobility. I lost my hearing (but not for very long). My symptoms quickly faded and I hadn't had a severe flare up except losing my mobility but it would only last a few hours and wasn't a regular occurrence, and I've lost my speech sometimes too though I always thought that was because of verbal shutdowns (I am autistic) but I think it could potentially be because of my FND too.

Anyways my symptoms hadn't been bad for a long time until January of this year. My mobility went and my speech went and that both lasted for 3 weeks. And since then my mobility and speech have been fluctuating so rapidly. I also experience pain (though it is not my worst symptom) and fatigue and feeling generally unwell.

Since yesterday I have been in a flare up.

I have a history of mental health issues and recently my mental health has not been good and I really don't think my FND symptoms and the unpredictability of not knowing when my symptoms are going to flare etc doesn't help. And I really am not feeling ok.

I do have a good support network and after my flare up in January when I was living alone with support staff coming in for like an hour a day I got moved to a short stay respite and was there for a month and I have now been moved to a residential home with 24/7 support staff (though me living here is meant to be temporary). Unfortunately because I hadn't experienced severe symptoms re my FND for over 10 years I don't think my support team knew I had it and I am not sure my support staff etc know much about FND or know anything about it except for what I tell them so I do not feel like I am getting much supported. Physical support yes I am receiving - when needed staff help me with walking and personal care and they have put some hand rails in the home for me and I am able to use my wheelchair when I go out- but emotionally, mentally, knowing how to deal with the flare ups and the way my FND makes me feel mentally, that I don't know how to deal with.

And I guess I'm just wondering is anyone else in a similar situation or does anyone have any advice or anything?

Thanks so much.