DH working from home ALL the time; feeling absolutely drained by him

[Gotitthanks]

That sounds horrible but hear me out. DH is disabled. It’s fairly recent and we’re all still adjusting I dare say.

Work has adjusted to him working from home permanently. Because of his disability he has to sit in a specially adapted chair. There’s no room for it in any of the bedrooms upstairs so he’s in the lounge.

Since he’s sleeping badly at night he is working when he can. He was working until 8 o clock last night. We have young children and I am sick to death of having a husband who is there in all but name.

I know there’s no easy answers. I’m just sharing because it’s so difficult to talk about in RL without sounding an arse but truth is I’m sick of the sight of him!

@ThreadGuardDog I’ve read the OPs posts and it is quite obvious that she is posted here for support rather than professional or personal advice.

I’m sorry but you’re the one looking ridiculous foisting advice on someone that has made it very clear she doesn’t want practical advice. The most useful posts have been those which have taken the trouble to actually read between the lines about what is actually helpful for the OP. The least helpful ones are those where the posted thinks they know better than the OP herself what she needs and would be useful.

Agree. At the end of the day, I’ve tried to offer some practical solutions, as have others with professional experience, and I’m very open to private message if you feel I can help, or you want to chat privately, but at the end of the day this is the man you love and you’re watching him go through something life changing , and which for reasons best known to himself, isn’t ready to share with the rest of his family. And added to the grief and sadness there will be a feeling of helplessness that he won’t let you in. The natural reaction is to want to help and it’s very hard if he won’t let you.

As you said yourself, it’s very early days and hopefully he will come around a bit, but there are support services out there OP. This is a very lonely and isolating situation and you need that support. Don’t be afraid to crack some heads to get it.

My DH works from home very minimally (an average of half a day a week) and I find it sooooo bloody irritating (I'm always at home with the kids when he does WFH) that I have seriously suggested to him more than once that he just stay in the office.

It's the way he comes in (it's always late morning, he has to be in work first thing) and just cracks out his laptop(s) and starts bashing away at them with only a tiny acknowledgement of our existence. If he came in and spent five minutes saying hello to me and the kids and THEN dived into the computers I wouldn't be half so annoyed. So I really cannot comprehend what it must be like to have him there All The Time with no predictable end every day. (In my DH's case I suspect it's his neuro divergence that causes him to hyperfixate on work as soon as he's through the door - the morning meetings are very different to the work he needs to do by himself and I think by the time he gets home he's been thinking about it on the train and once he's in it just sort of bursts out of him. So I try to be patient and I don't think he's behaving this way because he's purposely ignoring us. He's a lot better at engaging with the kids if they come over to him, so there is that!)

Is that something that might help you, if he would agree to "clock off" at a certain time? Is the summer holidays starting a good opportunity to raise it with him? "Rob, now that the summer holidays are approaching I've been considering how we can accommodate everyone's needs in the situation we find ourselves in right now. I know that you need to be in the lounge to work. It would be incredibly helpful for me if you could stop work at five o'clock every evening and read with the kids while I make dinner. Is that something that you can do, and if not do you have any other suggestions for how we as a family can organise ourselves over the summer?" Apologies if this is way more than he could cope with at the moment, it's just I find the unpredictability massively difficult and it sounds like you do too. So I suppose I am suggesting you think on what aspects are worst for you and if there's anything that can be done about them (not a garden office or moving his giant chair!).

I have to admit I am absolutely lost at the indignation some are displaying about my posts. I’ve just read through them all. I made a slightly terse reply (and it really was very mild in MN terms!) which i then apologised at length for when I saw the poster was upset by it. I pointed out ‘go to the park’ is unhelpful and I used the word ‘fucking’ as a strike through when talking about the garden office, which I also took the time to explain at length was aimed at the suggestion rather than the poster.

I really do not think that any of the above is that bad, or that it means long posts lamenting my apparent rudeness are necessary! <baffled>

I was very sharp to a poster who said ‘your poor kids’ but if people can’t see why …

Is it even legal to give professional, medical, therapeutic advice online? Particularly to someone that hasn’t asked? Surely it’s not ethical.

I absolutely don’t know better than the OP and I’m not foisting advice. No-one knows her situation better than she does, but there is a lot of support out there. It’s knowing how to access it - especially in a situation as new as this. You think myself and others who are advising from years of professional experience look ridiculous ?

Is it a temporary disability or long term? If the latter then surely it’s worth investing in installing a bathroom in the garden room so he can work there.

Sorry that you and your family find yourself in this position. I have no advice. I can only share my perspective of a sudden diagnosis of a potentially disabling, degenerative condition. Luckily I was single. I was in total shock, disbelief and had to keep working as was contracting so no sick pay. I couldn’t really walk or move one side of my body. But I was bloody minded. It was my coping mechanism. The drugs your husband is on will also be having a massive impact on his mental state, his ability to be ‘present’, likely his ability to think straight and work. With hindsight I was totally away with the fairies. My head was totally elsewhere for many months.
You are in the worst of it now. The uncertainty that the life trajectory had shifted. I was relieved it was just me due to the impact on loved ones. Things will become clearer but it’s a slow process. You will both need to address the situation sooner or later. The medical team may also be able to refer to specific mental health specialists experienced in supporting patients through certain diagnoses.

My advice isn’t medical or therapeutic. It’s based on years of disability support, including support for newly disabled people. MN has a disclaimer at the top of each thread that they haven’t checked the credentials of people posting, so as an ex professional support worker I can only advise from experience, in exactly the same way as other professionals, including doctors and nurses come on to advise within their experience.

OP has asked that you stop. Are you able to respect that?

Thanks @SaltyCara . I agree with you … it’s that sort of ignoring your existence which is strangely disconcerting and if I find it so I imagine the children do too!

I can totally sense your frustration at the situation yous have found yourself in through no fault of either of you. Has his works Occ Health been out? Is there a charity specifically for his condition that could fund a 2nd chair for the house office? (i know youve said its lumbersome but cant remember if you said it would fit. I do think he is still in the denial phase because he is able to work, but in the long term, once life has settled a bit, he can't ignore the kids like he is doing. Its tragic how his life has changed but we just keep going, we adapt.

And definitely get the PIP paperwork done.

The thing is @ThreadGuardDog i find it very difficult to open up and trust you when you’ve made posts like this

I’m a retired disability outreach worker and have received much the same response as yourself to the advice I’ve offered. Think I’m probably out too because I’m not sure what OP is looking for beyond sympathy - and that’s not going to do her or the rest of her family much good if they’re going to cope

and

there comes a point when the advice offered from a professional point of view and with the best of intentions is thrown back in your face by an OP determined to alienate the very people she’s posting to. I’m at a loss to know what she wants from this thread

Would you feel like opening up to someone who made those two posts? Because I don’t, to be honest.

@CombatBarbie i am not really frustrated with it. I was, when I didn’t know what was wrong but I’d had months of DH wincing and groaning and an ever increasing workload and feeling like a single parent (yes, I am afraid I did!) When we got the diagnosis that frustration and resentment left and its sorrow that remains largely now.

We’ve gone from DH disabled and not knowing why to having answers albeit not very nice answers and I have taken time off and so am coping but this will disappear next week! So then have to adjust all over again.

Is the condition Ankylosing spondylitis?

I was responding to a couple of your replies that were sharp to the point of being rude in response to myself and others posters trying to offer advice. And I wasn’t the only one. But I agree, that’s fair enough, I’ll bow out of the thread. I hope things improve for you and your family and I wish you all the best of luck.

@OPit sounds as though you are grieving. And you’ve hit anger stage. You sound as though you have lost your husband as you knew him and you feel trapped by your circumstances.

id recommend getting some IRL support. A relative or a friend as well as professional support if you can.

personally I would surrender the lounge to him and put a bed in there for him. Then use your bedroom as a little haven for yourself and the kids.

obviously your DH is struggling too, and I’m sure his medical professionals can signpost for support, and of course his GP

It’s pretty understandable that you are tired, angry and frustrated in a situation where there is nothing to blame but the horror illness that has affected your husband.

Big hugs OP

Is that a real condition? 😂 No!

@Specialagentblond this is what’s baffling me, I’m not angry 🤷‍♀️ I’ve got slightly exasperated at best! Maybe I’ve been spending too much time on really combative threads but I really have been mild mannered enough!

gently OP, you are coming across as quite snippy. Which is understandable as you are holding the whole shitty situation together and having to put everyone’s needs before yours and be all kind and understanding while your insides are probably screaming for some respite.

Life has been cruel to me too. it’s shit. And I’m sorry.

@Gotitthanks sure is, the excruciating pain made me think thats what it was. My best friend has it, if it were I could have given you some hope that he now gets a biological injection which helps so much.

Well, just don’t contribute if I’m snippy then! Honestly that was snippy but I am so over this thread being a critique of me - it’s so tedious.

Thanks @CombatBarbie . It is serious but we still have much we are not sure of.

I don’t think you’ve been snippy but if you were, who could blame you?

He isn’t the only one who has to adjust though! Yes it’s going to be incredibly hard for him. But that doesn’t diminish how difficult it is for the OP. Or their children. It is horrid for all and everyone has to have a bit of compassion and consideration for everyone else in these situations and it’s rather cruel of you @ThreadGuardDogto dismiss and devalue the OP’s feelings and need in this situation. She matters too

Sending sympathy and support @Gotitthanks

Sorry that you've had some staggeringly unhelpful responses. Surely everyone can recognise the need to vent and for someone to just listen?