A&E visit again: The kids found me face... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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A&E visit again


The kids found me face down my head was shaking but only my head, my left side I could not feel, not sure how I got on the floor though had a drunk feeling before hand, but been under a lot of stress lately. I have my doctor telling me to rest as much as possible and a social worker moaning about my housework, ( I think she is trying to kill me off as I keep telling her my kids don't help and im too tired and not to do half the stuff but falls on deaf ears.)

My friend who helps me with my housework complained to the social worker boss yesterday, as she found that its insulting to tell a ill person that they are not keeping their home like a show home and that she is pretty sure it was the failure to listen to me that put me in hospital. She explained as soon as I clean the kids make a mess and she is watching my health go downhill fast, they should be there for my daughters behaviour not to judge my house and how would they feel if they were ill and she come in and said about the house is not tidy or clean enough for her bearing im.mind that it was the first time she had met them. :-(

Hospital said my meds are on the change and next step warfin :-(

12 Replies

If I was you, I would complain about the social worker. She seems completely unaware of how the condition affects you. Its not her place to complain about your standard of housework. If anything she should be identifying a need and attempting to help to deal with it.

My housekeeping is atrocious but I have not got social services involved as I would not take kindly to interference.

I find its best to pace yourself and at the end of the day, if you are asleep you dont notice the mess.

Yes, I know. Urgh!

I should have read your post in full. I see that complaints have been made. Rightly so.

I swear that if I had social workers involved I would possibly have been taken into care at times.

They do not understand the full effects and how many adjustments have to be made.

They also are constantly aware of their own position and have a tick box mentality to cover their own behinds.

There are some absolute gems as well so I shouldnt really tar everyone.

A clean house doesn't mean it's a good home, you can only do so much.

Family should come first

I said to the head social worker to think of been tired after a busy day at work then times it by three then she may get how I feel every day. Most days im not there to clean up after my kids as im working or at appointments. I think you should never judge until they have the full picture. They need to read up on a condtion before opebing their mouth. Tiredness takes over my life and i'm fed up with people saying im lazy. My youngest one has ADHD and that is what I asked for help with, as she trashes the house most days :-( trying to catch up with myself is impossible :-(

Thanks, they put me under so much stress, I really believe they have no clue about APS, you would think they would read up about it. To come in and say about the house keeping standards, I don't think they any idea about how insulting they think they are helping but really they are stressing someone out. Stress and APs don't mix.


So sorry you've had this unnecessary pressure to deal with. Completely unfair of that social worker to say what she said. Rude and completely thoughtless!


I am most concerned to hear about these inappropriate attitudes, clearly there is no clue about your disease... you could perhaps email the person you complained to with articles and a film, gladly find you some if you need them. Please try not to worry, the priority is to sort your medication out, call in friends and relatives and minimize stress for yourself and the children. Let us know how you get on. Mary F x

So sorry. There is a lot of confusion in the intersecting world of sociology, medicine and politics. People tend to confuse chickens and eggs and point to whichever root cause projects their personal political ane emotional goals. We autoimmune patients know this too well as doctors often say our stress causes the autoimmunity, when we, know its the other way round. But when the docs can point to "stress" as "the cause'"then they absolve themselves of their own feelings of inadequacy when confronting a complex, chronic ailment that they, frankly, can't understand and can't always treat.

A "nutter" is someone who makes them feel like nuts.

My friends do help loads but still its not up to scratch for the social services. Its insulting, I hold down a job and am a single mum too and as quick as I clean my house my kids mess it up and dont clean it up, I don' t get to finish a full cup of coffee anymore as I fall asleep half way through, I finish work at two and by the time I get home from picking my daughter up I am tired and often fall asleep, a social worker don't get that. :-(

MaryFAdministrator in reply to KarenOR

If you want me to provide some papers information for them to read.. let me know, you could educate them with print outs.. you will not be the first... or the last. Mary F x

Thanks Mary xx

Hi I have left messages for the head of social services heard nothing back as yet. I tried emailing that person and the email address don't work something tells me they don't like the complaints

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