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Help and Advise Needed

Hi I’m new to the forum, my husband was diagnosed with Primary Progressive MS in July 2011. I am working full time and feel that when I get home the work starts again. He had to give up work due to this and the help that he gave me before now all lies with me. I don’t feel like I have a life anymore and I have forgotten who I am.

Is there anyone out there who has felt the same way?

Joby x

Hello Joby

Yes, you sound like me a few years ago. My husband has SP and was dx when his symptoms stopped him working. We went from sharing everything, including all the chores and things that go with running a house to it all being down to me.

It is difficult, I find it hard to imagine that there was a time when I did not even know what day the bin men came!

My husband has not been able to drive for 3 years so I can add taxi driver to my CV too.

Feel free to message me if you want to chat.

Best wishes

Hi there, I’ve been going out with my man a year, he is 4 yrs post diagosis.

We went out when we were in our teens, split up then 30 yrs later met at a re-union and have been seeing each other since, I love him to bits he’s the love of my life. We don’t live together, I’m a single Mum to three teenagers, but i was hoping one day we would move in. I do loads for him, clean his flat, cook and freeze meals for him (before he met me he was eating rubbish, now he’s eating much healthier and has lost loads of weight) I also persuaded him to give applying for DLA another try and he did and was awarded it which has made a massive difference to him financially. We have a great time together and laugh lots but in between dates I know he gets terribly depressed. Our relationship is very much on his terms, sometimes days can go by without even a text message, last week after several days of silence and him not replying to my messages or voicemails I sent him a text asking him to just reply and let me know he was ok and not trapped under something heavy! It did the trick and he replied. I only see him when he’s having a good day, he’ll text me and ask if I want to go out. We don’t have the every day nitty gritty but it doesn’t make things any easier, I long for the day when my kids are up and off and he and I can live together, then the bombshell came the other week. He doesn’t ever want to get married or move in, he doesn’t know how much worse he is going to get and he doesn’t ever want to be a burden. He doesn’t realise i am already in this for better for worse, in sickness and in health. Since he told me this I feel like the rug has been pulled from under my feet. I don’t think he and I will ever have a normal relationship or enjoy the things other people take for granted. I don’t know what to do, but I do know the thought of not having him in my life at all is unbearable. Reading your message has helped put things into perspective, I suppose if we were together 24-7 things could potentailly be even harder, I get the best bits of him. Doesn’t stop me worrying about him when I’m not with him, doesn’t stop me mourning what I’ll never have. EVery now and again he breaks down and I see that every day is a struggle for him. Yes life is hard for me but it’s 10 times harder for him. I get sick of having to be the strong one and I can never tell him of my struggles or hardships, not when he’s got so mcuh going on, but sometimes I really long for a little something back from him. I want to be in a relationship where I am looked after, supported…

He’s had to surrender his driving licence and is currently waiting for the DVLA to make a decision whether he is fit to drive or not, if they say he isn’t it will be another blow and rob him of his independance, he won’t be able to drive himself to the MS centre for his oxygen treatment or go to the gym, it’ll finish him off…

Girls make sure you are accessing all the help and support you can, I’m thinking about going to the docs for some anti depressants, also thinking about having some counselling. It’s so hard, I feel on the verge of tears all the time at the moment, but for me, the good bits outweigh the bad. Keep going and I’m with you in spirit.

Kate x

Hi Take it easy, it isn’t easy but try. See if you can get a p/t carer and use direct payment (you will need to apply) to ease your burden Take it easy :slight_smile:

If you need further financial hel apply for dla & I have stuff to help fill in forms, I will watch you post :slight_smile:

Kate

Seems to me that you should tell your partner how you feel, especially that you need his emotional support. It may give him the opportunity to feel that he is contributing to this relationship, which to be honest does seem rather one way at the moment. Being/feeling unwell does take over your life but there has to be something in it for you - love, companionship, support.

Re your children, well they may be in their teens but they never really seem to go away! If you ever do live together they will always be in an out of your life and sharing whatever comes your way. If you wait until they have flown you could still be where you are now a decade down the line.