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Looking after myself

Been with my wife since I was 19 and she was 18, 6 months in her MS started - first by destroying her eyesight then her mobility issues set in as well as fatigue and bladder problems.

Because of these problems she’s never worked and we’ve lived together off my salary with a tiny bit of help with disability benefits.

11 years on and we’re doing our best to make things work, but financial restraints and not being able to go out and do things due to her limitations makes life difficult (something shared with most people on here).

But I now want to go travelling for two weeks but she has become nasty towards me over it, despite the fact that she will be guaranteed a large network of support and being taken care of during that time.

It may seem callous to go on holiday without her, but I’m struggling with the mixed messages of “I don’t want to hold you back” and then guilting me and acting emotionally hostile when I do pursue an interest she is unable to partake in.

I feel I must do what makes me happy so I’m strong enough to make her happy, but I find that is received with begrudgement.

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so sorry to hear this.

it’s ms brain causing it.

it is a fact that a unhappy carer won’t do a good job, or a unhealthy one either.

i’m the one with ms in my family but i really do relate to what you are saying.

the toll it is taking on your mental wellbeing can’t be ignored.

there are respite breaks available for people with ms and for their carers.

would she agree to go on one of those, which might make it easier for you to go away on your own.

hiya

i have ms and am fairly disabled now. i have always said that it is much harder for those who love us to cope/learn to live with ms. men espec want to fix things and some things cant be fixed and thats hard to accept.

its very easy to become self centred (with good reason!) but it doesnt help long term)

i understand the mixed messages and disagree with carole that its the ms brain-sounds more like ‘normal’ relationship stuff.

u need a break-it will help you both.

ellie

ps callous is a word that looked totally out of place when i read your post! caring considerate and other such c words more appropriate!

That’s tough. On both of you. It sounds like MS has robbed you both of some youth.

On the one hand I can understand her perspective. After all, she’s only young too and ‘its not fair’ must resonate through her head.

But actually Carole and Ellie are right. MS is hard on the person with it, but it’s at least as hard on the person who’s a genuine and caring partner to the person with MS.

So, ultimately, you should be able to go on a respite break without guilt. But that’s quite separate from the actual doing it.

Whatever you do, she’s going to feel a bit wronged and a bit like you deserve it. And whatever you do you’re going to feel a bit like you deserve it and a bit guilty.

But for the future health of your relationship, you should come to a decision together. If that’s possible.

I’ve not long ago said to my OH that I really don’t want to travel, but that if he wants to, he should. We just need to sort out how it’s to be done. So far he’s not taken me up on this, but I’d be OK if he did.

And btw, we’re a lot older than you, in a different place given age and relationship, but I am significantly disabled.

Best of luck.

Sue

Oh Man what a horrible situation for you (both)! My ‘breaks’ come in the form of triathlons, but since the diagnosis I’ve cut them down so am only racing three this year, and avoiding staying away. I suspect the guilt trip comes from just feeling pants, but the main thing is that it sounds like you need to look after yourself - if not then your ability to look after her will decline I would think. It’s a really tough one - I wonder if she’s worried about being apart from you for two weeks more than anything else? Sorry - probably nothing helpful here, just wanted you to feel less alone if nothing else!

if you had to go to hospital for two weeks nothing would be said - your wife would be looked after by the support network you have. So why is your wife concerned about you going on holiday - that you may not come back to her, that you may find someone else - perhaps she has concerns she hasn’t talked about.

Ok. I have MS, hubby doesn’t. He walks miles, I can not. He sometimes goes to the pub. I can not. He dearly would love to go on a whim, away, I can not. Do I feel resentful? bloody hell yes, would I deny him, no. Seems you need a compromise, you need time away, so you should we are bloody hard work, but your wife needs to not feel a burden as well. Hard to explain, if the shoe was on the other foot, what would your thoughts be? She needs reassurance in abundance, your not off to forget her, just to recharge. There are holidays your wife may go on, with support, that can also give you a break. It’s bloody hard being a carer, just reassure her, look at places away as well that can accommodate her. You both need time out.

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Brilliant advice from Tracey

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