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new here - Carers UK Forum

new here

Tell us a bit about yourself here.
Hi there
I'm new here but so happy I found this forum...It's good to see I'm not the only one.

Well a bit about me: I'm 30 came to the UK almost two years ago as my life was quite a mess in my country. I had high hopes that things will be better and that I could combine caring and emploment and that maybe even my partner could find suitable employement.
Lets just say it has not been an easy road and I find myself at a very low point. I'm bearely getting by the day and yeat I have to keep caring and making sure things keep going . I'm not sure how much longer I can take this!!!
I whish I could hold a job, so people don't think I enjoy being on CA and other benefits!. I have no idea how to do everything and what's more I can't (it has taken me time to come to grips with this,ha)
I care for my son (8) ASD with severe sensory issues and comunication difficulties that I whish I knew how to get a diagnosis for. Currently in the process of appeling his statement going on since may last year. He's gone thought 5 assesments and now since we just moved county he has to undergo another set of assesments. Today he began in a new school and I just hope and pray he does well here and that he can begin to get the teraphys he needs soon. It's very difficult to see that months passing by and nothing getting done, professionals telling you different things, social workers saying they don't have funding, etc
I also have two other children ages 10 and 6 and three years ago I meet a wonderful man who also has some caring needs (epilepsy, left sided hemiparesis and heart murmur, memory loss...). About him I will just say I love him to bits but I'm finding it so difficult to find about his health conditions and how to manage them. He says he's fine, that he does not need a carer and wants to lead a normal life...but I feel so alone and not knowing what to expect. I tried to see he's doctor to talk about his health but because he is an adult they said they could not give me any info unless he is there in person, he does not want me to go to the doctor with him, and when I manage to convince him he ends up getting very angry if I say things and ask questions. Anybody else have this problem? I have not manage to see a neurologist but from what I have read online I think his epilepsy is not doing good and he might need a change in the medication or something.
Well I better stop now hope to get on here often...bye for now
ines
Hi Ines and welcome to the forum, i see you are in Ware, is your Son at Amwell View School, my daughter went there, fantastic school with some excellant people, my daughter suffers from epilipsy, although controlled at present. If you look further down the forum you will see forums for specific problems, again welcome. Image
As Paul said there are specific sections further down the board. A warm welcome to the forum from me.

Karen
Hi,
my wife has severe epilepsy and her seizures are uncontrollable, we also have a daughter who's 8 but she's fine.How often are your partners seizures?
Welcome to the forum.
Paul
Thanks for the welcome
Paulingreece, I visited Anwell View a few weeks back and got some excelent advice from the headteacher...he goes to the other special school Middleton which seems real good too, hope I found the place for him...

Paul72: It depends really, last month he did not have any seizures but the previous month he had three (tonic-clonic) two whiting a few hours diference, which put him in bed for days. And then previous to that he has having one every 2/3 weeks for about six months before it was less often. He takes medication so not sure why it varies so much.
Anyone knows if you can have more than one kind of epilepsy? I belive this is the case but this is not confirmed by doctor as he does not mention it Image

Happy weekend everyone!!
Welcome to the Forum - I'm sure you'll find some people with similar problems to yours and find the support you need x