To look for more support than this?

[atrcts]

I have multiple sclerosis (for those who might not know it's an incurable neurological disease where lesions form on the brain, leaving scar tissue, and affect whichever bodily function that part of the brain they've damaged (in my case it's memory, balance and limb weakness).

This means my brain has to work about 3 times harder than anyone else's, to do the simplest of every day tasks.

For example, I have a weak and slightly numb arm, and so to lift a drink to my mouth takes 3 times the physical effort than it would for my partner. And my one sided weak and numb leg wears out 3 times faster than his, so being on my feet makes me very tired. Not to mention the extra hard work from the lesion causing the poor balance (double whammy effort there!).

So I live really tired. Abnormally tired. I am told by the hospital that I need to manage my tiredness and have a sleep to get though each day, to prevent myself going under.

My husband has to be told repeatedly that I need to lie down to reset my tired brain. If I don't, my symptoms get worse and eventually I risk growing more lesions through being physically stressed and run down. He seems to forget or ignore it, and questions whether I actually do need to rest. Today when I asked if he was ok if I nipped off o a half hour sleep before my hospital Physio appointment he got a bit hostile and said e was really busy preparing food and that he wouldn't be free for the baby. So no, in short.

I was so angry we had an argument about it. By this time he backed down but time had passed and besides I was too mad at him for making me feel bad that I need to physically rest.

Am I being unreasonable to expect him to be on board with me here?

Regarding the post about whether I would be more supportive in his shoes, I feel this is the truth because I am aware that I sacrifice and give more in the relationship than he does. I am not too drama'd by that because I do think that a lot of couples have one person that gives more than the other, it's just the way it can be sometimes. I would say that I give to a fault. I'm not saying that makes me perfect, but it just means that I give more than he does and that my faults lie elsewhere.

I talked to him at great length tonight.

He said that I worded it today in such a way as to invoke his response. Apparently, if I had said "I'm off to bed", he would have accepted that because he would have seen that as being an urgent need. By saying "is it okay with you if I nip off for 30 minutes sleep?" I was giving him the impression that it was a preference rather than a need.

I disputed this, saying that does he seriously think I would be asking to go for 30 minutes sleep in the morning if I didn't need to? He said that he understands by default if I need to sleep in the daytime it's because I need it, but says that today he dropped the ball. When I pointed out it's not the first time and that it is inconsistent, he said that he does occasionally dropped the ball he admits it.

We talked about his need for support to, and he did say that when he does go back to work he will be glad for some input. However he does want it to be from family and not from an agency. So we are trying to see what help from family we can get to accommodate this as much as possible.

the volunteer doesn't need to come into your house he can't bar you from seeing people love, I know you are trying to work it all out atm and the baby is quite young still but you need to take care of you before you can sort him out you dont need to sort him out first you need to sort you out,

I am not trying to have a dig at him he sounds in some way uncomfortable with your needs and the family needs he seems to want to fix it and have it all to click into place on his say so, but do keep talking do not disregard outside agencies on his say so alone perhaps there is a homestar/surestart group you could go to to get support I know it is physical help you need going for a nap and a rest but I do think you need some support perhaps talk to the MS folk and see if there is anything they can suggest, being disabled or ill with a small child is a challange sometimes dont struggle alone,

He might want it to be from family, but what if they're not willing/able?
It's your life and your home too, and the decision-making balance seems to be a little too skewed in his direction.

I suppose it is possible that I am being overly generous because the truth is I feel somehow responsible for the inconvenience that is caused! I know logically it doesn't make sense because I would never choose to have a disease like MS (or any other disease for that matter), and so it's not my fault. That is funny how my feelings feel somehow responsible even though they're not!

I suppose it would make sense for me to get some psychological support to get my head round having this awful disease. Because I know the way I feel somehow responsible for all of this is illogical and irrational, so needs sorting out.

I suspect if I can get my own head round it better I can then deal with other people with more backbone.

mrsjay I finally twigged what you're saying. You are suggesting I take the baby out to someone to look after and then return home to sleep? What a brilliant idea! I can't believe I didn't think of that myself!

Although I have to admit I hate the fact that I need to take my 12 week old baby out of the house to a stranger so I can survive! But needs must and it's not a perfect world.