Advice for how to deal with this

[Tired2015]

I have a progressive disease. My DH knew before he married me, as I was diagnosed shortly before we got engaged.

The disease affects me physically, rendering me unable to; think straight, drive, or even walk properly when I'm having a bad day.

A normal day involves living exhausted, struggling to do normal every day tasks, and not managing with them very well. But its a largely hidden disease, and so isn't obvious unless I fall over and break a bone (which happened last year). If you met me in the street on a bad day, you'd have no idea I was struggling to remember my way home, or why I was in the high street in the first place, because it's just not apparent.

DH knows all of this, and luckily for me, loves to cook. So he does all of the cooking. When I feel able I will spring into action, but with 2 small DC, most of my limited energy is spent on them.

Every day I need to have a LOT of rest. DH resents this, and is always keeping a log of how much rest I get, and demands an equal amount. But the amount I have is not normal, I need much more than everyone else because of this awful, incurable, disease that I can't escape from, and that will never improve.

He says he can see that I need more, but every time I ask for more, he makes it difficult (tuts, sighs, grimaces), and begins to resent it if I don't offer the same to him.

The trouble is on a day like today. We take it in turns to have a lie-in while the other person does the school run. Today it took everything I have to make it to school and back, and I had to skip having a wash to be able to conserve the energy for this. DH didn't want to lie-in but wanted to go to the allotments and garden instead.

For some reason that really annoys me. I am shattered, but he is insisting on having 50% lie-ins, but then doesn't always take them, but uses it as a chance to have the morning away, leaving me caring for DC alone. It feels a bit of a piss-take when I am struggling to be honest, yet I'm not sure I am being unreasonable. I suppose I feel like he's tricking me into getting himself a "much needed rest", but then refusing to actually use it for anything other than a lovely hobby. It feels a bit dog-in-the-manger and now I am the one feeling resentful.

I know he's entitled to have some time for fun and hobbies, but it just feels a bit underhand to pretend he needs the rest and then not take it, while I struggle so he can, and then find that he's escaping for half a day on the allotment instead. I'd love to have spare time to have a hobby, but I don't have the energy or physical ability as all of my "down time" has to be spent sleeping in order to survive the rest of the day.

He's inherently selfish, doesn't like taking DC to birthday parties and swimming lessons, etc, because it gets in the way of his own hobbies. I know that can be something people struggle with if they have children later in life, like we did, as it can be too easy to get set in your ways and live for yourself.

But in spite of that, I don't want to LTB. I just want to find a way to feel ok and practically deal with this so I can somehow survive it myself too.

Any thoughts?

Bathtime,
regarding what I said about how he was blocking my paid helpers and now doesn't (within limits).

He said he'd turn them away at the door IF I organised for help to come. His argument was that we would cope, that it was going over the top and unnecessary. He kept saying he didn't want strangers in the home.

I had originally started with asking for cleaning help when I was pregnant and threatening to miscarriage. He refused, saying that it wasn't necessary and that I was just being house-proud. He watched a Horizon programme that mentioned how most households vacuum every 3-4 weeks. I don't believe that can be true with kids, I really don't. But he would say how I was being fussy asking for a weekly vacuum and mop, and laughed and said if it were up to him he'd change the bed only when it LOOKS dirty.

He said why should he have to clean according to someone else's preferences, why can't that someone else go along with HIS preferences instead? He made out I was being overly fussy and unreasonable to ask it of him while he works full time. Meanwhile I was bleeding and being told by my midwife not to vacuum and mop for a while. He didn't believe bleeding would be made worse by heavy housework, he felt it was some sort of weak women ganging up on him or something. In the end I won the battle, but it really was with a long, drawn out, fight.

It was the same with childcare. Luckily, my Mum was the most vocal, saying she can't do more. I don't know how I persuaded him to go along with it with my second DC, because my first he point-blank refused, saying "no child of mine is going to be palmed off on someone else." That hit my guilt button as my family are great believers in family looking after family until school age, so I didn't have them on side. The bargaining tool was to just look and see about a Nanny, someone who could become an additional family member. He agreed in the end, once he'd met her and quite liked her. But I pay for every penny of it with all of my benefits.

From your last post he definitely sounds abusive tired.

This man is not going to have a revelation and cease being abusive. If he treated you like that when you have MS and were bleeding during pregnancy and is still being an arsehole years down the line then he's a total lost cause and you would be far, far better off leaving: help could be available.

Twinklestein, he's in the profession or looking after people, believe it or not, which does also involve people with MS, but only on the extreme side of it, like those dying from it.

I think he does use denial as a coping mechanism, but thats all very well and good for a short while, no good when it rolls into decades. I can't seem to open his eyes and he's totally closed to any kind of counselling to help support him as a carer.

I think you've ht the nail on the head with what you say about his drinking. Part of his ability to drink and hide the booze so well, involved a life of lies and denial. He still operates that way an awful lot, even getting him to say what he wants to eat is a mammoth task!

He should know better, but I think he's convinced himself I'm playing the sick role unnecessarily, and doesn't quite seem to realise I am being bloody stoic most of the time, because although I don't talk about it all the time (it would depress me and the children if I did!), I do make it clear that my good day isn't even as good as someone else's bad day. All the time. However I look so well

Duck, I felt it was emotional abuse at the time, which was why I carried on plugging away. I suppose I was angry at his chauvinistic viewpoint, but also know that the older generations expected this sort of behaviour, and he's being very old fashioned to act like that in this day and age.

It's as though he's living in fear of being trampled on, and so does the opposite that I ask, almost just to prove that he can. In many respects he has lived in a bubble of selfishness with the drinking, and said to me once that he doesn't know how to be normal emotionally, its like he's learning it as he goes.

I suppose there was an element of doubt myself too, about whether I could "wing it" or whether I needed the help. The variability of MS is such that sometimes I feel fraudulent when I greet my cleaner. I am aware I look so well, and feeling wretched has become so much the norm, I feel like I should somehow be stronger instead. So if I have these self doubts, and I live in this broken body, how much more should I accept DH does too?

Even now, if you asked me to write down every little bit of help I need, I would really struggle. I'm not always aware of how one thing impacts on another. For example, someone further upthread suggested I increase the cleaner to twice a week so the bed changing and stuff can also be done by her and not me. Yesterday I changed all the beds, and felt exhausted, but I did it. Perhaps I wouldn't have felt numb on one side if I had not changed it, but I suspect I would just have just used up my energy on something else, either the children, or even a hobby, and still felt numb at the end of it anyway?

I sometimes just long for no responsibilities so I could just pace myself with no demands, no guilt, no expectations. It's hard to judge what I can or can't do each day, and being the independent type, I would hate for someone to do something for me if I could do it myself. I think I need to find a way to sort this out so it's more clear in my head, how I can best live with this illness.

Is there financial unfairness/abuse going on too?

Healthcarers and organisations and online fora for people with MS might well be able to help you identify what might help you day to day. If you try something and it doesn't quite work, you can change things again. Shut off his voice and views from your mind: this man doesn't have your best interests at heart so you need to doubly look after yourself!

And don't feel "a fraud", that is his bollocks in your head! Anyway I know plenty of fit and well people of both sexes with plenty of domestic help, some of whom don't work or have small DC to care for, they don't (and shouldn't) feel guilty!

From your most recent posts it's clear there's abuse going on.

I'm really sorry OP, it's awful.

If all of your benefits are going on childcare because he won't pay (I assume that includes DLA as well as ESA?) - that is financial abuse in my book.

Don't think he's chauvinist because he's 'old-fashioned': he's just a sexist arsehole with problems with women. My dad and all his friends are in their late 70s - they don't talk like that, they don't behave like that. It's nothing to do with age.

As regards the cleaning - you don't have to be ill to justify a cleaner. I'm fighting fit and have a cleaner twice a week. The house is hoovered twice a week, otherwise dust and dirt builds up and it wrecks the carpets.

It was me who suggested the cleaner doing the beds - I was ill when I was younger and I remember all the things that made me most tired. Changing beds was one of them. Cleaning is hard physical work. Why spend your precious energy cleaning when you could be with your children on doing a hobby that you enjoy?

However, getting your husband to 'agree' to more cleaning will be a nightmare for you.

I don't really know what to suggest. On the one hand, you need to get away from this man; on the other I understand how hard it would be to care for your kids alone, even with the help of carers.

Definitely get in touch with local MS groups. Some have advocacy services, which are work, benefits, health provider issues etc as I'm sure you know. Potentially you should be able to arrange a meeting with an MS advocate and SS to figure what care you need and what's available in the area. It feels like you need an advocate to stand up to your own husband, frankly.

Some MS groups also offer counselling. I think you could really do with talking to someone about the whole situation, who understands the illness.

Competing with you for rest and lie ins when you have a major illness is the behaviour of a selfish abusive asshat. I am at some of the posts saying you are unreasonable. It's horrible to think of you anticipating how useless (abusive ) he will be as you come to depend on him more. I'm worried for you and I would ask you to think about taking control of the situation so you don't end up in a really helpless position.