Wife is ill and asleep

[pearses]

My wife has been ill for some time. Nothing massively serious, but pretty bad. She started treatment last week and it went wrong, they think something else is in play. We find out tomorrow, Jesus I am fearing the worst. I've no reason too but I just have this sickening feeling. The symptoms all match the worst case scenario - but they also march other things but they symptoms are so severe it seems unlikely to me, but then I no nothing. Sorry for posting here, I don't think I've ever posted but I've been here a long time. I can't tell her because she is in such a positive place, but I know ill not sleep tonight. Also it's not worth my life to wake her.

I'm not really looking advice, just wish there was someone to talk to right now.

I am genuinely sorry for you but seriously get off social media! It will set her back worrying about being seen.

Yeah, the bar actually took a pic and tagged her. She was adamant about no pictures. There is no escape!!! But you are right. We both changed our privacy so we can't be tagged without approving it. It's just shit that it took 6 weeks to get her out for a few hours and the one thing she dreaded happened.

Oh bless her and you, this sounds awful! I have had mystery illnesses that took ages to diagnose, the wait is awful and it was really tough for my OH too. You sound lovely.

That’s really bad about her work and FB. I would complain to the bar! I go into social media hiding if I’m off work for fear of stuff like this. I have approval for what goes on my wall too, it works quite well.

Have you heard of spoon theory? It might help her understand her limitations a bit better (like why she had to sleep after going out). I’ll add a photo. I hope the treatment helps soon.

Thanks for that @Faithinfinity. Yeah its awful, other than work there is no pressure on her. It's NHS so you get amazing sick pay and thats what she feels guilty about, but we can just about survive on my wage alone so I'd nearly prefer she was getting nothing and didn't feel the pressure.

I like that spoon theory, but again, she really hasn't needed to explain herself to anyone other than the NHS! The other side though is that she is isolating herself, the swelling in her face and body has just made her so paranoid about being seen. She thinks people will think she has put on weight. And this is not a stealth brag, it is an actual proper brag, she is really good looking. It has just hit her confidence. It's just shit and there is no end in sight.

I haven't updated this since June! my wife is still ill with no end in sight. They are now starting to think they have misdiagnosed her as none of the treatments have worked.

Things are getting very strained between us. Life just seems to be getting harder. I work from home and as she is off sick for a year now - with another year already booked off - we are getting in each others way. it's really becoming a nightmare and I'm worried that we are approaching the end. I left for a couple of nights to give us space, but she took ill again and had to go to hospital so I obviously came straight back. I'd hoped for a bit of a change over the last few days but its just back to normal. I am her carer as such and have to juggle work and all other responsibilities so she has no stress, but she is still stressed to the eyeballs about silly stuff.

I think her mental health has taken a big dive, which is understandable, but it doesn't make it any easier. she can be very cruel, which I can't get my head around when you have someone waiting on your hand and foot.

I am aware I sound like a dick as she is unwell. It is just getting hard. Totally feeling hopeless and worthless - I know she feels the same though.

I feel so guilty for even saying that out loud.

What tests have they done and what have they ruled out? How old is she? What are her symptoms? Maybe somebody on here might be able to relate and have been through similar

She was diagnosed with angioadema. she gets fairly bad swelling, it happens every day.

The first treatment was an injection once an month in her stomach, which was supposed to take the swelling down and regulate her histamine levels - but it takes 4 months to start working. After 5 months they said it wasn't working.

There was another failed treatment after, but I can't remember exactly.

The most recent one was a drug called dapsone. She got every side effect of it, but no benefit.

Recently her potassium, magnesium levels have been dropping to zero, then her heart rate goes to 170 / 180 and we ring an ambualance and its 5 days in hospital trying to get them regulated. Her lactic level hit 7, which apparently meant she was close to septic shock. I may be incorrect about some of the things I'm saying, I'm not in the medical field at all, so apologies if something doesnt sound right.

A doctor friend of ours suggested something completely different and tests have started for that. They take her in and get the levels back up and send her home and wait for the next episode.

Even reading this back I am realising how hard it is on her and I am being a dick. Thank god i didn't post this on AIBU.

Thanks for the reply @fit4more. Getting to the point where I don't see any other humans.

we are both 35

Ask for a referral to social services. You both need support and they can do an assessment and hopefully get you a carer to support your wife and give you a break. You BOTH need that.

I'm sorry it sounds awful for you both.

she is a social worker lol. We've both looked at counselling. talking about marriage counselling.

You're not being a dick at all, you're burning out because you've been coping for too long without support. If she's suffering with her mental health and being cruel to you, that doesn't magically have less impact on you because you know what's behind it, because you love her or because you feel compassion for her situation. It hurts just the same.

You NEED to get out and see other humans and have breaks from the claustrophobia and intensity of your wife's condition. For both your sakes, because you are not going to be able to do this indefinitely. You have a breaking point like anyone else.

Is there any way a carer could come and be with her for a few hours a couple of times a week while you go out and do something completely different/see friends? Would you consider counselling for yourself?

I wouldn't have thought so, I can't imagine it would be deemed serious enough for a carer to come in. She is fit to get up and go about her mostly normal life. I am trying to take the strain to afford her the time to get well. She isn't out of bed today, but could easily get up at 4 and say she's away to get her hair done. she might go herself or ask me to drive her and wait outside like a plank.

The swelling really gets her down and she doesn't like to show her face so hides away. I make enough that she doesn't have to work and that bit, honest to god, does not bother me in the slightest. If anything I'm proud to be able to support her. She just doesn't see it, I do everything all day then get picked on for the slightest thing. And she definitely has anger and paranoia issues which are getting worse. I feel like im going crazy sometimes.

She doesn't like me going for a drink. Over the last year I've started drinking once a week in the local bar, 2 minutes from the house. It's only ever once a week, 5 or 6 drinks then home and I feel refreshed. There is never a woman there, its an old man bar but the fight to be allowed to get away for a few hours and then the interrogation when I get back is soul destroying.

Recently her potassium, magnesium levels have been dropping to zero
Not a good sign OP.
But I really hope you can get some clarity on what on earth is happening.
She needs some serious counselling. And fast.
This is a lot for her to cope with as well.
She's no idea what is wrong with her.
What the prognosis might be.
What the problems might be.
That's a lot to deal with. She needs some professional help.
Right now she is taking it all out on you.
And this is not fair at all.
You certainly deserve a drink at least once a week.
Don't take any shit over that.
Tell her you are going.
When you get back don't allow her to interrogate you.
She needs to understand that you won't discuss it. It was a couple of drinks with the boys and she doesn't need to know any more than that.
I can imagine, with what she is going through. she is thinking you might be looking elsewhere.
Who can blame her. So many partners do look elsewhere.
As you know, it's soul destroying and lonely and so many reach out for some comfort.
So some counselling for you as well.
You sound so lovely. But you do need a break at times as well.
Does she have any family around who could look after her for a day or two here and there?

thanks @hellsbellsmelons honestly been refreshing this ever 2 minutes hoping someone replies. I'm so lost.

I don't even go with the boys, I talk to the old men. If the lads were there it would be a few and move on -which I am absolutely not allowed to do, or a lot more than a few.

But I know had hard it is. She is a hard woman at the best of times but she has got really harsh, some of the things she comes out with are just pure cruel. despite how that all sounds, I'm not a walkover. I don't mind giving all I have to her, but when she tells me I can't do anything, I do answer back and still go for the drink, but it's under a cloud. and it brought up all the time "I can't be controlling/paranoid because I allowed you go out." I don't like being told i am being "allowed" especially when I am encourage her to take any opportunity available.

I left for a few days last week and I really hoped there would be some small change this week in how she treats me. I'm making it all about me again though and I have to keep catching myself and remembering where her head is. I just know if the roles were reversed and someone give me the spare to take 2 years off work to get healthy, I'd be pretty grateful.

I can't even bring myself to say anything too nasty about her as I think its a betrayal. The reality of the situation and the cruelness is far far worse that I can bring myself to write down. My Councillor thought I should leave. I stopped going after she said that as I new I couldnt undo what I'd said and start back tracking.

her family are a nightmare and a lot of her issues stem from as bad a child hood as you can imagine. They do turn up and act like best friends. They are violent people, even her narcissistic mother. Her mum is the kind to hear that her daughter is in hospital and then go on about how hard this all is on her. But it is her family and I respect that.

You are in desperate need of down time. You don't need to be "allowed", she is not your mother and you are not a child and do not need permission.

Could you have a calm discussion (not on Pub day) to find out why she fears you going? If it were me I would tell her that you are going whether she likes it or not and I would not take any moodiness or sulking, it is controlling and abusive. She should be asking if you enjoyed yourself not berating you.

I'm sorry you are both going through this, but regardless of how ill she is, it does not give her the right to abuse you.

Sorry to hear about the latest issues. It must be hard on her being ill and not knowing. It sounds as if she's angry with the world just now. A feeling of helplessness and relying on you may be taking its toll on her. Nothing she can do about it, just angry at the world and unfortunately you're the only one around. Try and remember the woman you fell in love with and married, hopefully at some stage you'll get her back.

I’ll be honest, I don’t think you need marriage counselling. You need a correct health diagnosis and the right treatment. If she was fit and healthy, you wouldn’t be on here? Right? I’m wondering if you could self refer to somewhere like Guys hospital for genetic testing? Surely you need to know exactly what is wrong? That’s where your focus should be? Have you googled the symptoms and put out feelers on medical forums for anybody who might have gone through similar?

www.healthline.com/nutrition/potassium-deficiency-symptoms

Have they considered Gitelman syndrome OP?

rarediseases.org/rare-diseases/gitelman-syndrome/

OP, has she been tested for Lupus? How is her kidney function?
It took them years to diagnose my dad. This was back in the '80s and they misdiagnosed him and therefore gave him appropriate meds for what they diagnosed/totally inappropriate meds for what he had: Lupus (SLE). Look it up. The swelling and the high potassium (due to poor kidney function?) has me thinking autoimmune disorder, likely Lupus. Sorry, I haven't read through the entire thread so forgive me if you've already mentioned Lupus.

Hi all,

The OP has been identified in real life, so we've agreed to take this down.