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?

He sounds like a total wanker. How do you foresee this getting easier for you?

I really feel for you OP. I too have a condition (AS) which limits my energy levels and seriously affects my cognitive function if I don't sleep. My DH hasn't had a lie in since DS was born. I've offered to do the early shift at the weekend many times but he won't hear of it. But then his attitude has always been happy wife = happy husband.

Mostly I would say that you should both be getting the same amount leisure time/me time/child free time once working, childcare, housework is out of the way. How you choose to spend that time is up to you.

Will your illness get progressively worse? His attitude doesn't bode well for the future, tbh.

Maybe make up a schedule. What needs to be done and what each of you is doing hour by hour through a week. You can then get a good picture for yourself and maybe share it with him during a conversation about division of labour. It almost seems like he's determined that your illness shouldn't 'cheat' him out of any free time.

Twinklestein, I really feel that you've got the insight about this. I know that I am shouldering the guilt, responsibility and burden of the whole thing. DH uses denial to deal with life's hard knocks, and while there is a place for that, it's counter-productive if the denial stage is not left eventually.

It doesn't help that I look fine and that my body isn't. Yes, it is Multiple Sclerosis.

FredaMayor, I also agree with what you say about it being his duty of care not to block my assistance. However, I had to fight tooth and nail to get the help I currently have with DC. Initially DH said he's turn everyone (including family) away at the door. Nobody would go against that, and social services would not be legally allowed to. Apart from leaving him, I didn't know what to do, so just muddled through and kept trying.

In a sense I can understand his viewpoint. I also wish with all my heart that I could have the old person back, and carry on with life as normal. It's easy to try and trick myself into thinking that they must've made a mistake on my brain scans, and that I'm just being a weakling. But deep down I know that's not my character, I'm a fighter, and am just trying to come to terms with living with a horrible illness. Just like my DH is.

MerryMarrigold, in answer to your question, I knew MS is progressive but the relapses can either be fully recovered from, or partially, or in some case not at all. The blind optimist in me hoped so much for the first option that I didn't see it coming when my recovery has left lasting damage. Damage that will get worse over the years. And I certainly didn't expect to suffer the awful brain fatigue that is a bit like having no sleep for 3 days, then trying to run a marathon with an elephant on your back.

EhricLovesTheBhrothers, I don't see it getting easier because the illness is progressively degenerative.

I told him last week that I don't feel safe with the way he'd care for me, and the sad truth is I can see us going our separate ways when that time comes. I can only hope its a lot further down the line when DC are more grown up.

A tiny part of me hopes that he might learn to be different over time. When I first met him, he was alcoholic but now is dry, he was smoking and now doesn't, he was blocking my paid helpers and now doesn't (within limits).

hedgehogsdontbite, I dont envy you the AS, but I do envy your support! When I was first diagnosed we split up because I felt it wrong to make him live with someone who has MS. He begged me to take him back. When I agreed to stay with DH, I had believed he would offer that level of support, but in reality it's been quite the reverse.

wafflyversatile, I suggested your idea today and he said it seemed a good idea. Bt he did also say he's doing really well at the moment and so can offer a bit more. The trouble I have is that he's said this before and gone back on it with a vengeance, I am not sure I can face trusting his word to find it bites me in the butt again.

shattered77, thanks for telling me the level of help you get as a normal person. You made me feel so much better about the guilt I carry. I don't think I'd feel half as guilty if I was still completely able-bodied, which is a bit ironic.

I had discussed taking him to my clinic appointments at the hospital, but DH knows - he is a healthcare professional himself. There is something different about it happening to you, but he just puts the blinkers on and carries on regardless.

I wish my nose grew like Pinocchio when I am struggling physically! The it would be painfully obvious and indisputable.

I wouldn't have faith that I could rely on him if / when your condition worsens and if he'd made promises to address things before and nothing changed, and perhaps had tried counselling, would probably end the relationship and focus on sorting out your own living arrangements and "back up" and encouraging him to be a decent co-parent and be there for the DC if you are ill in future.

Some people don't do well with the reality of "in sickness and in health".

It's very unfair and selfish of him to seek equal time to your rest time which is due to your MS.

He doesn't sound like a good husband even if you didn't have your condition, tbh.

I think I'd have a very frank conversation with him, explaining that how it's going, you will give up on him and he will have to be a full time single parent because you won't be able to take care of the children by yourself.
You should establish what you are prepared to accept and what are his minimum contributions to you and the children. Importantly, he must assume that you will do your best and if you need to rest, or you can't do something, then he must do it or accept help.

But if he resists this, I'm afraid that it will only be downhill and you would be better off splitting up at this stage than when (unfortunately) you are poorer.

If necessary get your family on the case, regardless of what he says.

OK, MS makes it clearer. Whilst it is 'invisible', it also is conclusively proven with tests etc. so he can't argue that you are not really ill. He does sound like he is in denial. Can you take him to the GP with you or a consultant appointment? Can they have a serious chat with him. Would he listen to a doctor's advice or explanations on what you can/ can't do, and what it is like?

The treatment I had is called The Lightning Process and they do also do it with MS patients with success. It's not a cure, but it can help with managing it and dealing with relapses. Look it up if you can. It really helped me a lot.

Good Luck. I really feel for you. That feeling of not having slept for 3 days and then running a marathon with an elephant is familiar - but must be a lot worse for you. I used to describe it as being whacked very hard over the head with a large plank of wood, and then having to function.

I have some experience of this. It's incredibly frightening and lonely when your spouse has a degenerative illness. You realize your not going to have the life you thought you were. Everything tends to revolve around the ill persons needs and its hard to not occasionally feel resentful. It's my experience that many carers want to battle on alone. The appearance of outside support can make you feel like you've failed .

Your husband must have time out , although trying to get a 50/50 deal is ridiculous. It sounds like he's in denial and doesn't want to really acknowledge that things are getting worse. Possibly this comes from a place of fear. In what way was he blocking your paid carers ?

Lweji sounds spot on - do you think you could have that conversation?

Lweji, I'm interested in why you think he wouldn't be much of a good husband even without the ill health part?

I'd hate to have that conversation as the idea of leaving my precious children to be cared for mostly by him fills me with dread. I'd hate it with a passion. The truth is that its more likely they'd be with me and id have extra external help.

But at the moment id hate to take them away from living with their daddy. They ask where he is every day that he works and they dote on him completely. It would have to be really extreme for me to break that up for them, which is why I said I envisage us parting in the future (hopefully when DC are older or even left home)... unless anything changes. But not yet.

I'd hate that tit for tat, keeping score on lie ins, and hardly doing anything at home, apart from cooking.
And you said it yourself, he is inherently selfish. Selfish people don't make good husbands or parents. (yes, we are all selfish to some point, but realise we can't give in to it)

Of course you'd hate it if the family got split, and can't contemplate it, but unless he changes tack that's what will happen. Or you will be very miserable.
But it may help if he realises what he is on course to. Or it won't help, but then you will also know what you should do.

This sounds really difficult. Because of having an illness, are you entitled to any extra support at home? Like someone popping in once a day to do the washing up and laundry? If your husband works this might be available but with financial contribution, depending on your income.

I have an autoimmune disease amongst other things and it takes all my energy to just look after myself so you do very well. I think you would feel better if you were using a little of your every on something you enjoy so if there's any way to get some extra support the would free up some time for you and also make the work load a little less for your husband. This is what a friend of mine does who has M.E. Someone comes in once a day to help prepare a meal and does a few of the household chores too.

I just saw your comment about your husband wanting payback for durations when you are bed bound and had to comment again :o

Has the reality of your illness truly sunk in for him do you think? The bed bound comment makes me think that he is maybe comparing how you feel to how he feels when a bit tired. I know myself how it is to sleep for ten hours yet still feel totally fatigued. And being bed bound is not a choice or anywhere near as fun as it sounds to someone with good health.

I was diagnosed with RA the same month that I met my boyfriend two years ago. When things aren't good for me he does all the laundry, brings me cups of tea, does the washing up, changes the bed and vacuums all on top of working full time. he's never once made me feel bad and certainly never suggests any sort of compensation. We don't have children so he gets some hours in the evening and most of the weekend to do his hobbies but still.. I don't think your husband gets it :o

P.s. My emoticon was supposed to be an expression of shock not a grinning idiot :\

he was blocking my paid helpers and now doesn't (within limits).

Hang on, so you paid for help with your benefit, and this fucker "blocked" them?

And he prevented you from getting help from your family?

And you are now using the benefit you are given to help with your illness exclusively on childcare, and this is something you had to "fight tooth and nail" for?

I'm amazed at the responses you're getting about how hard his life must be and how he's in denial.

From what you've written here he sounds an out and out bastard and his behaviour towards you sounds abusive.

I think you should seriously think about getting away from him.

I'm wondering whether he is maybe 'pretending' to need rest to actually get you to do stuff even if you are tired; to keep you active. I don't know if there is much benefit in you being active but could be a thought of why he is trying to 'split the time' ..could this be a possibility?

^^this.

Thanks Lweji for clarifying. I've mentioned how I (like the rest of us) am not designed to live in a one-way-street relationship like this, and I can't sustain it forever.

The problem I have had is that his Mum says terrible things but doesn't mean them, and I think he passes it of as me not meaning what I say.

I showed him a diary Ive kept. Ages ago he invited me to keep record of where he's being selfish and not stepping up to the plate, and I did. It was actually for my own purposes, to be able to safely vent and work out what is going on. But it makes for hard reading. Since reading some of it (I don't think he could stomach very much), he seems to be taking it a lot more seriously and has been much more considerate today. Of course only time will tell whether he will relax and revert back when he thinks he's got me back where he wants me.

Alice, he did say once, a long time ago, that he wasn't going to let me get "like that" meaning disabled. So perhaps there is an element of what you say in there. However a lot of it is pure selfishness as he's like it with the kids too.

He's not trying to help you with his competitive 'rest' requirements, only himself.

I have to agree with Bathtime that preventing you getting the help you need is bordering on abusive. Blocking access to medical treatment would be out and out abuse. Blocking access to non-medical support you need due to your medical condition is getting there. I'm not suggesting he's abusive generally, simply that this aspect of his behaviour is unpleasant and unacceptable. What kind of healthcare professional is he that he thinks this is ok?

If you invited SS in yourself, while it may not be illegal for him to refuse them entry, it's not legitimate and it's morally odious.

I think it's interesting that he's an ex-alcoholic. Because addictive capacity never really goes away. And I wonder whether after your diagnosis he begged you to take him back because he was dependent on the relationship.
You would think as he works in healthcare, that he knew what he was doing when he stuck by you. But perhaps his immediate thought was that he needed you and any real consideration of how you and he would be affected, he put to one side.

I agree with Lweji that he wouldn't be a good husband even if you were well.

I think you need to explain (presumably for the nth time) how ill you feel much of the time and that when you're lying down you're not 'resting' so much as ill. And that if he's not ill, and as he's not pulling his weight he doesn't need that rest.

As regards your diary of his selfishness, I think you should also write a detailed diary of how you feel every day and the effect of activities and getting overtired. Not just physically but mentally and emotionally too. How distressing it is having to deal relentlessly with your symptoms. This would be useful for any DSS applications too, so it wouldn't be wasted.

Just to add - when analysing his choice to stay with you - I hope it didn't sound like I was implying that he didn't stay with you out of love. I didn't express myself very well. Obviously, he decided to stick by you because you loves you. But I am trying to understand how that love didn't extend to taking on board then and now what that diagnosis was going to mean for you and for him.

I wonder if he thought 'I can't live without Tired I need her,' and the long term implications he just blocked out.