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Partner just been diagnosed with multiple sclerosis

(10 Posts)
wonderingwoman64 Thu 07-Aug-14 09:51:28

My partner of 25 years yesterday was diagnosed with MS. He refuses to discuss it with me in any real detail. We have a 16 year old dd who does not know. I am in a complete mess - I am worried about my partner's future, and my daughter's and mine. Yesterday during our brief conversation he asked me why I was upset as it was him with the disease not me.

He has had a number of really quite bad health issues in the last two years including heart failure as well as what can now obviously be attributed to the MS which doctors have told him he has probably had for around ten years. He has in the past been very unwell and refused to take responsibility (ie becoming very unwell and only seeking medical attention after days of feeling ill and collapsing in the street etc). I am worried that he will carry on doing this and will die. He is 48 years old.

I don't even know why I am posting this. I know I need to speak to him but I am scared he will tell me that everything is okay and that I shouldn't worry.

weird2014 Thu 07-Aug-14 10:11:20

I am sorry about your DH. I was recently diagnosed with MS. It was a massive shock and I am still working through it.

I think everyone deals with the shock of such a diagnosis differently. I couldn't stop telling everyone.

One thing I have learnt is that MS can mess with your head as much as your body. For a year and more before diagnosis I felt stressed anxious and depressed. My nurse has said that this is not uncommon. It is not just dealing with diagnosis itself it is part of the disease. So your DH is likely to have all sorts going on in his head.

This doesn't make it any easier for you and you also need to get some personal support. It must be really difficult if he does not want to talk to you and you also need an outlet for your feelings. Could you speak to your GP or an MS nurse if he has one.

Find out as much as you can but be careful as MS varies so widely and is so unpredictable. My MS nurse has been great so they are a good contact, for you as well as your husband.

All of this takes time. It is difficult and there are no easy answers. In the early days I was in complete denial I think (despite blurting it out to everyone) so you may need to let your DH get through this stage. Happy to share some of my experiences if they help. I have learnt that MS had made me rethink lots of things about myself. It is changing my life if I am honest. My confidence has suffered badly. However I am finding a way through.

I hope some of that helps a bit.

wonderingwoman64 Fri 08-Aug-14 10:07:42

weird2014 thank you so much for your post. I am sorry to read about your diagnosis. I am having some other family problems at the moment so really need to go away and think about all your advice. I will come back to you, if I may though. It was really useful to read about you felt emotionally as well.

Thank you x

weird2014 Fri 08-Aug-14 10:31:48

No problem. It helped me too to think I have moved forward (albeit slowly) a bit. Here anytime if I can help.

DealForTheKids Fri 08-Aug-14 11:04:18

Another one who wants to give you a little bit of hope. Your family set up sounds quite like mine, in that I was 17 when my dad was diagnosed with primary progressive MS.

My dad had always been hard working and a bit authoritarian. He was definitely head of the household and we had a difficult time when he was first diagnosed as he refused to accept the idea that he had to let other people in and look after him. As Weird says, depression and anxiety are part of the disease in itself, but diagnosis heaps a whole load of extra concerns on you.

However, he eventually came around to the fact that things had to change and his mentality had to change. I'm not going to lie, these realisations - that my mum was going to have to help him get his socks on, that he couldn't plan two busy days in a row because the fatigue from day one would put him out for a while - they don't come easily. I think your DHs' attitude will change once he realises that this means planning a different kind of life to the one that you originally planned. I'm not going to lie and say it's not a pile of utter shit, but once you start looking at things and saying 'it's not how I planned it, but I will make the best of this', life becomes so much easier. My dad is now far more 'go with the flow' than he used to be - he has to be!

What kind of support did you get from the doctor at the diagnosis appointment? You should be provided with information about local MS centres and supportive treatments - physio, etc. At first my dad said he point blank wasn't going to go to any kind of social centre or meet up because the whole idea of being around old, wheelchair-bound people was depressing and not applicable to him. Eventually, after the shock of realising that he needed trained physiotherapists to help stretch his muscles out so he could become more comfortable, my mum wore him down with enough nagging to consider going once. He grumbled and grumbled about it but over time he's come to enjoy it and there's a social element to it that I actually think he enjoys. Definitely look into the MS Society's website too, there's lots of support on there. It's also just as important that you are supported in this - this is a huge thing for you too. When your DH asked why you were getting upset 'since it's him that's unwell', he was kicking out, don't feel like you don't deserve or need support.

Something like this changes your relationship, but what I would say is that actually, in many ways, my parents relationship is better since DDad's diagnosis. After the initial rocky stage of acceptance, they are a closer team than ever. Dad's no longer the cold head of the house - he can't be, because he need's my mum's support - and together they manage to live as full a life as they can. They laugh a lot about it now, which I think is so important smile.

How are you planning to speak to your DD about this? If you're struggling with how to tell her, the MS Society website is again quite good for that kind of support.

Finally, as I said before, remember that you need support just as much as your DH and DD do. Don't neglect yourself at the moment - you need lots of looking after too. Your partner is going to have a really tough time at the moment and he will kick out and say and do things he doesn't mean - it's upsetting but this is all just part of processing something as big as this. You'll get through this.

Sending lots of un-MN hugs in your direction - feel free to carry on chatting on this thread if it helps smile Sometimes getting these things written down really helps you work through them.

juliascurr Fri 08-Aug-14 11:19:57

I've got MS - my best advice is join/read anything MS related and prepare to do all the leg work yourself. No professional has taken responsibility for any of it, from making physio appointments to getting a wheelchair or a ramp into the garden.
I've had to ask for any treatment I've had, which obv means I have to know it exists first
it's hard work; get involved with any sources of support you can

wonderingwoman64 Tue 12-Aug-14 11:22:12

Thank you all for your responses. I am not having a great time at the moment - having problems with my dd - so I haven't been able to really take all this on board. But I will come back to the thread soon I promise.

weird2014 Wed 13-Aug-14 19:32:28

Hope things are ok with your DD. It never rains but it pours. Things will get better.

wonderingwoman64 Fri 22-Aug-14 13:48:07

Hello all, back again.

Dp and I have chatted about this but feel as though it is all a bit "in the dark" at the moment. He has been given a MS specialist nurse and we are both meeting him early September hopefully. I don't know what sort of questions we should be asking. Dp says he has been told his MS is probably the "benign" type. I am not sure what that means - I still can't bring myself to look anything up on line.

I feel very selfish because I am worried what is going to happen to us financially if dp can't work in a few years. He is self employed, has no pension and we have no savings. I am scared that we will be in real trouble with regards to money.

LadySybilLikesCake Fri 22-Aug-14 13:55:30

I have relapsing remissive MS and it's been in remission for a year and a bit. 'Benign' means that it's been in remission for a long while, and they think it's stable.

There are different sorts of MS, ranging from really mild to progressive, so everyone who has has a different form. I'd steer clear of the web sites for a little while as you'll worry when you read the stories who have this really badly. Your partner won't have MS in the same way,

It's important that he looks after himself. Limit the stress, exercise is good and a healthy diet. Having MS doesn't stop you from living, and it certainly doesn't spell the end. He can still work, but it's best to make a back up. Not because he has this, but because all people should do it wink

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