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Old 10 Aug 19, 04:44 PM  
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#51
JudyC
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Originally Posted by honeybun1989 View Post
Hi Consistent, I’ve been thinking of you lately and wondered how things are going? x
Same here, when I saw a new post I hoped it might be an update
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Old 10 Aug 19, 08:07 PM  
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#52
Consistent
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Aww thank you for posting asking.
Well we are having a good spell right now.
My son has some humour, he’s a bit more motivated regarding his health, he got a shock a few weeks ago as he weighed himself and was shocked he had put on 3 st since being discharged in Aug 2016 , so he’s eating healthy and doing well.

He still isn’t going out much, he’s only really wanting to go with me or his Dad.
It’s now 5 years next month since I posted the first post on here😲
He’s stable I would say on his injection which is 4 weekly.
Every now and then he will rant about these mental health staff and how’s they plan his demise and how they aren’t real professionals.

He actually wrote a very articulate letter to his consultant saying he wanted to see real proof of their credentials and qualifications etc.
His cpn told him it’s being looked into.
She has been great with him and at times there is some humour. She will say things like “I know you don’t want me to be here “ she’s really good but soon he’s being discharged from early intervention on psychosis team who only have them for three years.
That’s where I worry as if he’s taken off the CTO he says he won’t continue meds , we have no idea how it would go as he’s now been on some sort of med for 3.5 years and although we have had still some really testing times it’s never been that bad as it was before meds.

I tend to take one day at a time still and I’m still on my sertraline which helps.
At times I feel sad for the life he has, which is very restricting , feel sas that he’s not got job, car, friends , girlfriend etc but then I console myself he has us, he has a decent house, family that love him etc.
That’s the sertraline that helps me look at it rationally.

It’s strange as he come into a shop with me recently and he was worried he was wearing new trainers that he had bought a few months ago as they sold them in there, he was worried they thought he had stolen them.

I’m Trying to get him to apply for pip, as this really has hindered him from working , he has worked hard getting his degree etc and if this hadn’t hit him he would be so much further ahead in his life.
So far he wouldn’t let us claim saying it would be him admitting he was ill and it would let them take advantage of him and lock him up.
He clearly has suffered from his hospital stay etc, but how else could we have done it.

Anyway I really appreciate you all for caring. Thank you x
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Old 4 Sep 19, 10:42 AM  
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#53
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Thought would post again since it’s 5 yrs this month since I started this thread and five years since my son has been in work.
To think at that time I had no idea of this chronic condition.

It’s funny and feels surreal at times , for instance on Monday night he had some sweets , he didn’t eat them all and asked me to put them away . A few hours later he asked me for them so I told him where they were.
After eating them he said he felt weird and accused me of doing something to the sweets, putting something in them.
I asked did he really honestly think I would do that, he said yes well I felt ok then after he had the rest he felt weird , like it was his heart or something beating too fast. I said it was probably the 100g or s grams of sugar.

I would have been upset at that before but I just bat it off, I think my meds make me like that though, I’m scared at times I feel just “meh” to his whole situation.

Saying that , yesterday I asked him did he trust me, he looked at me said not now after those sweets.
I then asked could he help me by getting the washing in off the line. Two seconds later he goes and gets the basket and brings it all in.
Now of he didn’t trust me and thought I tampered with his food why would he do that for me.

He still links the professionals with something, the Eastern European psychiatrist is a “professional kidnapper”
The nurse is from a gathering of people who are against his religion.
The other dr is an Italian who “knew” my son like danother Italian football team .
The delusions are really mostly about these type of folk. Very rarely of at all will they be about random strangers.

The motivation is still a huge problem , as in he has none.
He keeps saying he wants these mental health team out of his life.
When I ask what he thinks will happen if and when they are, and he stops meds what will it be like? Ironically he said he would probably start seeing police all over following and keeping tabs on him... it’s as if he pre empty’s how his mind will actually work then.

He refuses all psychology and talking therapy, (he saves that for us)

Hubby and I are off on holiday soon so am looking forward to that.
Thanks again for all your support x
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Old 4 Sep 19, 12:13 PM  
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OMG what a situation. And five years! Wow. Thanks for updating us. I often wonder how you are all doing.

I understand about the sugar rush. Just a thought, I wonder if the sweets contained artificial colouring. I know that this can affect some people.

I truly hope you have a lovely holiday. Sending you lots of hugs.
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Old 4 Sep 19, 01:15 PM  
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Good heavens. 5 years! I wondered how you were coping. Enjoy your holiday. It'll do you good. Sending hugs. X
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Old 4 Sep 19, 04:58 PM  
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Gosh where has that 5 years gone?! I’m glad to hear you’re going on holiday, you deserve some me time. From your update things don’t seem as dark as they are, and I hope that it keeps improving, small steps lead to great strides x
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Old 4 Sep 19, 05:23 PM  
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Can I just say you have the admiration of not only me, but I’m sure of all the other dinners who have followed your journey over the last 5 years. As others have said, we hope your son continues to improve and you all enjoy a better quality of life. You are a shining example of parenthood. Best wishes x
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Old 4 Sep 19, 05:30 PM  
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Tough times, you’ve all been through the mill over the years.
I think the main thing to keep you sane (maybe the wrong expression to use) is not to take anything he says personally, as hard as any situation is. When we take things our loved ones have said personal, that’s when things start going wrong.
I understand this partly, well just a wee bit, because when my eldest is really angry at the world... himself ...us...me he can be extremely spiteful and personal . But for him it is just getting it off his chest, sometimes I can let it go over my head sometimes I can’t... it’s when I can’t we have more problems. Autism can do that.
I mean in no way to take away from the difficulties you have all been going through, but I’m hoping you understand what I mean.
I wish you all the best and really hope he’s ok when he is discharged, it’s such a worry for you.
Hope you have a really good holiday and are able to relax while you’re away.
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Old 13 Jun 20, 04:17 PM  
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Hi everyone thought I would pop in for an update,
Things are so so, my son has changed back to the med he was on a couple of years ago. He’s also taking fluoxetine (anti d)

We aren’t any further forward with him gaining insight though, he still mentions his fixed beliefs at times. He definately doesn’t want any input from the mental health team (no change there)

I’ve had a few low days recently (who hasn’t )
Just a lot of emotions , the feeling of it being like a treadmill and my mind wandering to the future , then there is the sadness -grief of his lack of a “normal life” that’s not moving forward like others his age, friends kids etc.

I do have a very close friend I “met” on an American forum for carers , amazingly she lives only 10 miles away and we meet often and text a few times each week.

We get each other, we understand and when we feel like escaping we talk and it helps us both.
Her son is a year younger than mine and so many similarities and so many differences too, Her son is silent whereas mine is often very vocal.

It’s difficult to try to understand him, at times my son will be on very articulate / logical and sensible , which is great yes and we can relate but then he will come out with something not true and it’s human nature to try reassure / contradict him but it’s fruitless because as unreal it is to us , well it’s that real to him.
So we have to adapt our ways and realise it’s not him being awkward and it’s really what he is feeling or thinking .

I have recently start talking / video calls with the lady who used to come see hubby and me , the family worker and she’s brilliant .
She is going to invite a new psychologist onto our next call as I said no one has ever explained some of these thoughts to us, so hope that helps me a bit.
I’ve taken ALL the help available while son has taken none.

Currently been waiting a year after claiming pip for him and getting refused so we are awaiting a tribunal now. How awful we submitted so much information and back up etc from dr, consultant etc and they still twist words, contradict themselves etc.
I think if he gets that then it will help me knowing that if he doesn’t work or have us then he will have at least some sort of support.

If you have read all this then thanks lol.
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Old 13 Jun 20, 04:51 PM  
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JudyC
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Hi there! thanks for posting the update. It must be a very worrying time for you all with the Covid-19 situation. I hope it's not having too much impact on your son.
I'm glad you hear you are taking all help you can, and its lovely you have found a friend who can relate to what you go through.
I hope the tribunal for PIP goes well, it's hard to see why he has been refused.

Edited at 04:52 PM.
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