Feeling a bit isolated/not sure where to go

circsys

This is a bit of a downer for our first post but we need to get it out. Our name is Circulatory, we’re 22, and we’re disabled in lots of ways. We get a lot of support but some of our problems we don’t have support with because we regularly fall between services (being too high-needs for one and not high-needs enough for another).

We had it confirmed today that some of our sight loss is uncorrectable. We have correctable myopia and astigmatism that should get better again when we get new glasses next week, but that our FND is affecting our vision in a way that can’t be corrected. It’s hard to adjust to being able to see less, but because our prescription only details that our eye health is fine and our myopia and astigmatism are certain numbers, we’re not considered partially sighted and we feel like an imposter if we seek help with our sight. Our hearing loss is also uncorrectable for different reasons. We went completely deaf from malnourishment and our hearing never fully came back. We can hear, but we use subtitles and have to look at people when they talk. We can’t really see what they’re saying all the time anymore and it’s a bit scary. We were okay with our hearing loss when our sight was more manageable, but now it’s a bit harder to think about.

We’re autistic and we go to a once-weekly autism day service which is really good, but mostly we use AAC there and we’re struggling to see the buttons on our iPad more now. It is difficult to not be able to communicate in the ways we’re used to. It’s not all the time we can’t speak, and sometimes we can’t communicate in any way at all anyway, but it’s just hard to accept that things are likely going to keep getting more difficult.

We use mobility aids to walk too. We have two wheelchairs but one is broken and the other one isn’t suitable anymore. We worry about making ourselves seem “more disabled” than we are if we use more specialist/custom wheelchair tech and that people will judge us or think we’re faking. There is nothing wrong with using a wheelchair with whatever adaptations you need, but our parents/some other family don’t support us in this, they already don’t think we need a wheelchair, and they somewhat pressured us to use a manual chair instead of a powerchair (which was fine to begin with but is now unsuitable because we can’t push ourselves).

Our parents also don’t believe we should be considered able to make big decisions at the moment or possibly ever (particularly financial decisions or things like deciding where to live or deciding to get a cat, both of which we did) because we have mental health problems that cause us to find it hard to understand how things work in society or what people’s intentions are. We use a lot of easy read and talking to people and it helps, but we do understand that they’re worried about us. They don’t push it too much at the moment but also we try not to rely on them. Our siblings are also disabled in all different ways so we are not trying to take up space from our siblings when we have the most external support. We have never to our knowledge had a mental capacity assessment but also we have previously been subject to some seemingly illegal deprivation of liberty so 🤷 (shrugging emoji). That was a couple of years ago and we are better now even though we aren’t good. We haven’t been in hospital since then, which is awesome.

We go to a mental health day centre on some weekdays and there are lots of different people with lots of different disabilities. It’s really good and we’ve made really good progress (when we started, we were going to move into a care home and now we live by ourselves and our support worker just comes to our flat on some days, which is awesome), but there are some things that they can’t help us with (our mobility, particularly, because the centre isn’t wheelchair accessible, and we don’t really get listened to if we use our AAC). There is lots of day centres in our city, but the one we go to is the only one we meet the criteria for because we don’t have a learning disability.

Basically we just wanted to vent here really. We’re upset that there’s not a service or even group of services that can help us with all of our needs, and that because we don’t reach certain parameters that we aren’t eligible for some things while the services we are eligible for aren’t adequate to help us with all of what we need help with. We don’t really have anyone we can talk to about it and we needed to get today’s bad feelings off our chest.

“Why do you say “we” instead of “I”?”

We are plural, which means we are multiple people sharing one body. There is good information at morethanone.info if you want to learn more about it.

“Can I see your cat?”

Yes.

Her name is Sheba and she is 12. We adopted her from the RSPCA.

Traceybuk

I do hope you get some support, your post was very interesting and I did check the website out. I am a carer whom has never come across this before. Thankyou for sharing…

Bluebell21

Hi @circsys Welcome to the Community. Thank you for sharing your story. I hope you find the help you need. You might like to look in the Coffee Lounge for chats. Any questions just ask. I love your cat. Take care.

phil68

you will get the help you require. Just keep asking. Keep staying positive. I love the cat too. We have 2 and a dog and a tortoise whose over 100 years old.