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Wife of a meningoencephalitis survivor 2014 lonely confused and grieving ☹️

Hello all,

My husband survived with 20% of survival. We got sent home 3 weeks after recovery with no support about the effects and rehabilitation that would be needed. We struggled for 4 years with our 2 beautiful children, our family have now been pulled apart due to this my husband cannot love with us so is seeking his own home. We're still together and married as I'm not giving up on him but I've no one to talk to 2 children to raise and I've got rheumatoid arthritis myself. If anyone can offer some advice it'd be gratefully appreciated.

Many thanks x

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its tough living with someone with a brain injury, fortunately, my daughter is grown up and lives far away so i have very little contact with her.

my brain injury is the result of a stroke, at the age of 52, in 2012, i, like your husband was released from hospital, no support for myself or my wife, well as a result of my behaviour my wife had a melt down and i was referred to a psychiatrist who prescribed me medication for my mood swings.

this is my behaviours, do you recognise any, mood swings, aggression, noise intollerance, aggoraphobia, sociaphobia?

please feel free to ask more questions if the above apply to you.

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Good evening Steve,

Yes every single one of those, also much more. I've been married to a stranger for 4 years I'm only 35 hubby is 48 I'm just trying so hard to get on the best I can with my own health for our children.

I'd appreciate more conversation with you to help me understand him.

Many thanks for replying to me x

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my wifes one of those die hards, she put up with me when i was in the forces, girls when they were having problems with their marriage asked how she put up with me her reply was............i knew what he was like when i married him.

for us like you its hard, we look in the mirror, its the person we were looking back, but we re not that person any longer and until we can come to terms with that........well.

we found a monthly headways group, great for me, because i could mix with people who knew what i was going through, because they were further along on their journey and my wife, bless her, met other darlings who put up with us pain in the asses and learnt coping methods.

you can contact me anytime, maybe hubby might like to have a look to understand what hes going through is normal.

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My husband is only 6 months in since his last haemorrhage. Just like Steve55's wife I had a melt down which he couldn't cope with so he left me. We are still together but living apart.

I'm afraid I've no advice I can give. But I can empathise with you.

It's so hard living with someone with a head injury. Especially if they have no insight at all.

Although the situation isn't what I want I do feel happier than when we lived together. I'm not walking on egg shells any more frightened that he'll take offence to what I say or how I say it. I feel more confident and much more capable of dealing with his unreasonable behaviour. I don't take the crap any longer and stand up for myself.

Just because they have a bi it's no excuse for then to treat us badly. It's hard trying to step back and let him get on with it, but I know it's something that has to be done. I'm just taking every day as it comes. Hopefully with time he'll gain some insight and we will be back together.

Like you I'm not giving up without one hell of a fight. Good luck x

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Good evening Marie,

Many thanks for your reply, I understand you completely. Its been years of fear incase I say or do something he doesn't like etc. It got really really bad :-(

Im hopeful he gets the help he needs now he's accepted his bi.

Have you and hubby been married long? X

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Only 2 years, we've been together 4 years. So although neither of us knew it at the time he'd already had his first haemorrhage that wasn't picked up after a motor bike accident 10 years ago.

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marie i only know ive done wrong when my wife tells me off.

we were in a quiet area of a restaurant and it wasnt as quiet as it expected it to be and i took it out on the waiter, i didnt know until my wife told me and i had to apologise, its the not remembering thats the annoying part, at least i couldve had a smile on my face when i apologised ha ha ha.

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I daren't tell him off because he says I'm controlling him. So I have to sit embarrassed.

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Yep me too Marie :-( just want what's best for him x

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Steve, this is all too real for me too, he doesn't realise till he's done it xx I'm thinking of getting him a tbi identity card to wear xx

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marie/divine i think my wifes attitude these days is stuff walking on egg shells, ive got a life to lead and ive come to realise i dont know what id do whithout her.

i encourage her to go out with her friends and have a good time, she doesnt have to worry about leaving me because we live in a quiet area and when she went to see my daughter in dubai, i stayed in a raf home, which because of my brain injury, the first couple of days were a nightmare for the staff.

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Now he's not living at home I too say stuff it and say it anyway. He usually gets up and if he's at my house goes home. If I'm at his he says he'll want me to leave but I stay and he has to listen.

He has over the last couple of weeks said on more than one occasion that maybe he's got it wrong so fingers crossed he's beginning to gain some insight.

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unlike normal people, whos brain will tell them you cant say that, we dont have that option, we have a tongue and even if you tell us off we dont know why,so my wife tells me why shes telling me off, its like dealing with children i suppose.

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Definitely x

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This is something my Wife would help you with, it’ll really benefit you talking to her with my advice. In 2014 I was placed on life support at Nottingham Queens Medical Centre following an RTI, I was rescued there by Ambucopter I’m still recovering at home with my kids & Wife, her e-mail address is: [email removed by admin: please use private message feature]

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I’m so sorry it’s awful. It makes me so angry the way people are treated I was abandoned basically at 33. It just rips your life apart and your expected to get on with it I wish I could help. X

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Good morning Kez,

So sorry to hear you was abandoned. It must be awful for you :-( what kind of brain injury have you had? X

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Thank you I had a stroke caused by a blood clot. I nearly died I wish I had because well it’s a long story. I was just empathising with the abandonment it’s disgusting that there is no help or support. I really believe if I had been treated accordingly things might be different. I know I’ll never know but what I do know is it tore mine and my children’s life apart. Eleven years this year and it’s still raw.

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Sorry to hear this sweetie, life is just so cruel at times. I'm trying really hard with my own health, my children aren't ones to sit on technology all day they're little minds want to learn new things. I'm not actually sure what my painful body is running on at present xx

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Morning your right life is cruel but seems to pick the wrong people to be cruel too. You have a lot going on it’s hard on the little ones hope they are behaving lol. X

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Please ring Headway helpline first thing on Monday if you haven't already.

Thinking of you all.

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Please just remember everyone the person with the BI is not behaving the way they do spitefully or to annoy or anger you they cant help it. Their differently wired brain is making them behave that way.

They may have been the most considerate person in the world before but.....

And if they were to really truly understand how they are behaving they would be mortified x

Just saying

Janet x

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