Hi. Want some advise if possible as I feel so confused and lost and sad atm…been with my bf for 6 yrs…we were soo happy before being diagonised back in April…dreams of marriage and kids and all that loveliness however everything has become so sad and depressing since my diagonisive…we just seem to be constantly arguing… he has lost faith in the world and he feels like all our dreams are gone and he is very down(even more so than me)
I’m starting to feel like maby we aren’t meant to be together and if he cnt cope now when things arnt that bad(my.main symptom being wobbly legs…cnt walk very far but manageable)how will he.cope if they and when they get worse…?
I’m just scared that maby the best thing to do is walk away from each other and if we r meant to work we will…but then I’m scared of being alone as he mite b happier without the hassle life with me brings and then I’m terrified I will never meet ne 1 else who accepts my ms…
how has others coped in similar situations or has ne one met their partner after being diagnosed?
I’m just having a very bad day…feeling so low in myself and any advice would help…
Thanksx
(Ps soz kinda rambled on hope all makes sense)…
Hi Anon
I haven’t been in the same situation as you as I had only just begun a relationship when I was diagnosed so I can’t begin to make comparisons about the relationship BUT
I was diagnosed in April '09 following a nasty relapse in the March which really affected my walking. My diagnosis had been very quick and really knocked my confidence. I think whether you are expecting the diagnosis or not it makes you question your whole future and in a way you grieve for the life you think you have lost. I know that I veered from anger to sorrow from one minute to the next and it was a roller coaster ride I wouldn’t wish on anyone. It does take time to come to terms with the fact that you have been diagnosed with a condition that isn’t going to go away (or at least not until they find a cure - and there is real hope of that now in the next 10-15 years).
However symptoms can continue to improve for up to a year after relapse and I know that for the following 3 years after diagnosis, I was in remarkable good health. That is something that I didn’t think was possible when I was first diagnosed or for the first 10 months or so after diagnosis. I’ve had two relapses this year but even so I have still worked 30 hours pw (with only the odd day off), been to parties, nights out with friends, football matches etc. I’m much too old to to be having babies now but many of the women here on Everyday Living are raising young children. Your dreams are not shattered; you can have all the things you planned before the diagnosis - you may have to plan some things a little more carefully but the MS does not have to stop you and your bf enjoying life together. I do hope you get lots more replies telling you the exact same thing with loads more examples of how we get on with life.
Perhaps you could order some of the publications from this website (or just download them) so you can sit and talk about things honestly. Could he perhaps sit in on one of your appointments with your MS nurse so she can help to reassure you both that life with MS can be rewarding and fulfilling? If this still doesn’t convince you both there is always the option of asking for a referral for counselling - many MSers have said it was invaluable.
Please don’t give up on your relationship just yet. One final thought - when I was first diagnosed, I thought that some people were behaving a little odd towards me but with hindsight I think there is the very real chance that because my emotions were so volatile people were ‘treading on eggshells’ and avoiding me because of my behaviour rather than because of the MS. Is there any chance that is what your bf is doing? Honestly?
Tracey x
Hi
Dealing with a diagnosis like MS is hard enough on our own, but taking into account how it can affect others makes it even harder. In terms of how it’s affected you both emotionally, I think things can improve - how you are each feelng now is not how you will always feel. As Tracey says, you both need to grieve the the loss of your pre-diagnosis health, and also the potential loss of your dreams & plans for the future. Grieving is a process and a journey, and there will be different stages you may experience - denial, anger, depression etc. It is possible to come to a place of acceptance though, when you can start to re-build your lives, dream again and move on. That process may take time and be hard work, but it is possible. Google ‘stages of grief’ and you might find some reading that explains how you & he are feeling.
I reckon all of us here in relationships have asked ourselves the question of whether our partner would be better off without us. It’s a massive question to ask - when I asked Kate to marry me (post diagnosis), I knew it would come with a huge cost to her, and in many ways I hate what I’ve asked her to do. However, my responsibility is to live a life as well as I can. If I’m doing things that I enjoy and bring me life & energy, then that will be good for her. Sadly that’s not something I’ve done enough of. The mistake I’ve made though is that I’ve been too dependent on her. I’ve relied on her to do too much, to create movement, and I’ve been a burden on her. It’s meant too often she’s been a carer rather than a wife, and I’ve been a dependent rather than a husband. Instead I need to live my own life, and to ask other people to help me when I need it instead of relying her to do everything for me. Wanting to be with him our of fear of being alone with MS probably isn’t the best reason for a relationship, and it might lead to him being resentful. Instead, choose to be with him because you’re good together (even if it doesn’t feel like you are right now).
One of the things that’s really helped us is to laugh together - to be stupid & muck about. We make each other giggle more than any other couple we know. And it’s vital to have people around you who understand & support you, both as a couple and as individuals. We’ve often lacked supportive community, and it can take its toll on the relationship.
That’s all turned into along ramble of a reply, but I want to say it is possible to have a happy life together. It’s flipping hard work at times, but it is possible.
Dan
i had been with my bf for about 8 months when i was diagnosed…
a year later we married and seven years later we had a baby…two years later we had another…i’m in a wheelie now with all thejoys of secondary progressive and nearly 16 years have passed, if hes’s the right man for you then he will be able to get past this. An MS diagnosis doesnt mean an end to your plans you just have to take a different route- good luck ;D
My first hubby left me 12 hours before being diagnosed ,leaving me with 10 year old twins,within a month lots of other life shattering events happened but i got through them and went on to meet and then marry my wonderful hubby He knew what he was getting into and looked at all the leaflets on MS It was hard when first marriage broke up but in all honesty id rather it like that than him staying for for me because of my MS( we had been together 17 years when we split) A break up is always a bad/sad time MS or not but someone is always out there for you,i was on my own with kids for 2 years before deciding i wanted another relationship Local MS groups give great support although i know they are not for everyone Get all the info you can and try and sit and talk about any issues you might find your partner is worrying about something but scared to ask a what if type of question Do you have a local MS nurse who could possibly sit with both of you to discuss any fears/worries? Why have all your dreams gone you can still get married,have kids,go abroad etc remember MS is a PART of you it is NOT you Hope things work out ok for you xxx
I am very sorry. But my hubby of 31 years is my carer bliss him, it looks like I am doing who is doing the caring for him , but honest he does look after me
I could not sleep, so I am back Hahaha