To want to discuss future possibilities?

[atrcts]

I have MS and have many brain lesions, one of which sits on my spinal cord.

Recently my legs have been weak like jelly and 'buckle' under me slightly when I stand or walk for too long, especially at the end of the day.

Sometimes 'too long' is only five minutes.

So I've been worried about what happens to us if I end up using a wheelchair in the future. We currently live in a house with such a tiny staircase that there is no way a lift could be installed so we'd probably have to move.

I voiced this concern to my husband who at first said "of course we wont have to move house" and then refused to discuss it with me, saying "oh you know what, we will just cross that bridge web we come to it. I'm not going to talk about it".

I can see he uses denial about my condition, but I don't! For me, the time to plan is before it becomes an acute problem which can place people in shock (obviously you can't in too much detail until you get there, but I can't help think its better to have a lose idea as people in shock don't always think straight).

Was I being unreasonable to try and discuss this?

Would I be unreasonable to ever bring it op again?

YADNBU at all.

I'm sorry you're having to deal with this. I hope your symptoms subside soon and you have a period of remission.

Of course YANBU to want to plan for your future. I completely understand why your DH is unwilling to discuss it. You're right about denial I suspect.

If you're getting nowhere with him, do you think he would engage more if you used shock tactics by telling him that whether he gets involved or not, you intend to make plans for the future, and if he wants any sort of input into where you'll be living next, he'd better take his head out of the sand and start getting real?

Could he join a support group maybe?

I think we're getting to the stage where we need to have some level f support for this; only last week he said my MS was a burden to him and everyone else who knows me. He was mad at the time, and since then has said he didn't really mean that, but over the past few months I've suspected it to be the case because of his behaviours.

So now I am beginning to think I have to deal with this all alone, which is so unhealthy. Of course I don't want him to suffer any more than he has to, but by the same token if he's married to me there's a certain inevitability that we have to share the burden together. I think we both could use some outside help to deal with this, though not sure where to turn. I might have to check out an MS site somewhere.

My dad had MS and stress can make everything worse. Him and my mum did move into a bungalow as his walking became bad. Once he was in a wheelchair the carers came in to hoist him into wheelchair and help with personal care. You need to discuss your needs with an occupational therapist who can assess your home to see if it is suitable for lifts and hoist etc. Maybe also contact the MS society they are great with information and support. My mum was trying to get travel insurance just after my dad was diagnosed (still able bodied), they actually refused to insure him at every company she called. She spoke to MS society to see if they could tell her where she could get insurance. The society guy was outraged 'what do you mean they won't insure him? That's illegal and discrimination'. He then called every company she had threatening them with legal action. One company called back and insured my dad for £20 more than my mum. Good luck with your future and get your vitamin D supplements.

How long were you together before you became ill, and how long after that before you were diagnose? Do you have a long or short history together pre illness?

He's obviously finding it quite difficult to adjust and cope, but neither should you have to carry him because you're the one actually going through it. It sounds to me as though you have your head thoroughly screwed on and have a loose game plan as such. I suspect you're right that you will have to be the one who puts this into action alone initially. What you can aim for though is to involve him more.

The MS Society are great for putting you into contact with local support groups. I know they're not everyone's cup of tea, but they're a superb way of networking - not just to get contacts for various types of support, but also just to make friendships with people who actually understand what you're going through (whether sufferer or spouse), and you can maintain those friendships outside of a group situation.

Best of luck.

We weren't together very long web I fell ill, so I actually ended the relationship so as to free him from the burden of living with someone who has MS. At the time he wept and sincerely believed he wanted to stay with me, MS or no MS. So I stayed with him.

That was over 5 years ago now, and the illness has probably got worse recently due to having given birth this summer. The sleeplessness is horrendous and I don't think that's helping my legs at all. But of course along the way we've had skirmishes about my medical needs, usually my need for rest when it doesn't suit him because he is exhausted too (hence the argument last week).

I've tried to 'not disappoint' at my own detriment but as time goes on my ability to mask my symptoms to protect him are fast disappearing, and I think he's finding it hard to face up to it.

I should add that he tells me (without being asked) that he "signed up for this" and still wants to me with me.

Just remember to take care of yourself first. If you are knackered then rest or it will hit you like a tin of bricks whether he likes it or not. Make sure you stay hydrated as dehydration makes you very ill, that caused a bladder infection in my dad and he went into hospital fairly ok and came out unable to walk and senile. Please look after your health x

Really sorry about your Dad. I suppose my need to start looking after myself more is why I am asking for advice along the way. This is such new territory and I honesty feel like a shadow of my former self because of this disease, so I've lost confidence in whether I am being reasonable in what I am looking for or not.

I've been to the website and got the MS society 0800 number to call in the morning.

His ms was fast progressing and he didn't fight or look after himself he just let it take him over. If you are tired you rest, try to eat well even if appetite dips and drink plenty. It is a horrible illness and so sorry you have this struggle to go through. A girl at work who is pregnant told me she had ms and a Heart condition and I have bloody cheek to complain I have a headache when I at least for now am in ok health. I have a 20% higher chance of developing ms with a family history. The neurologist explained that 1in 1000 people develop it. I am in a group where 20 in 1000 will develop symptoms, just hope in one of the lucky 980.

Seriously contacted society for help and advice they are great x

Hello,

I'm sorry to hear about this. I am afraid that I have no specific advice to give.

People deal differently with things.

Your DH may not be ready for it yet, although he may well be if the situation gets worse.

You are not unreasonable to wish to discuss about things. You may be unreasonable to discuss things that he is not ready to talk about just yet.

Leave it for a while - maybe 1-2 weeks and then bring it up again? Voice your concerns to him - tell him why you feel your condition is getting worse.

It is a difficult situation for you and also for him. He needs to support you of course but never underestimate a man's weakness... He'll need your support too.

I wish you all the best.

I give my children vitamin D to reduce their chance of getting it.

We were told its a 3% chance for normal population but 5% chance if you have one parent with it, and that it only happens to people who lived in places (like UK) that don't get a huge amount of vitamin D in childhood.

Do you think your Dad would have been better if he had rested more? I didn't know it works that way.

He didn't fight it he just sat and let it take over rather than testing and keeping active. His dehydration was bad as getting him to drink was a struggle and it can cause confusion bug he just seemed to not come out of the confused state. The brain needs hydration and good food to heal. We live in west Scotland where ms is highest in country son the support here is excellent x

Ignore spelling I'm using phone