@Amy2107

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Amy2107

MS and Relationships

I'm looking for advice on how to handle discussing MS with a partner. I've been diagnosed with MS for nearly 18 months now, and now it is starting to have a very negative effect on my relationship, to the point he wants to end our 2 and a half year relationship. He wants to end it because I don't talk to him enough about how i'm feeling, even though I don't feel as though I need to talk. However when I do talk, I don't think he fully understands how i'm feeling and takes it the wrong way. I guess this is probably why I don't talk, it's easier to deal with it on my own. It doesn't help that his mum is a nurse, and often suggests things like taking a tonic to help with the fatigue. Our sexual relationship has been suffering for some time because I'm often not in the mood, and when we do it's often uncomfortable which I don't always say because I don't want to hurt his feelings, but he can always tell. Maybe this is all my fault. Has anyone else gone through a similar situation and able to offer some advice? I've taken steps already by contacting my nurse for local support groups to talk to, to help me unlock my incapability of talking about how I feel with loved ones. Thank you in advance x

Stumbler

@Stumbler

@amy2107, it is difficult to maintain a relationship, when MS rears its ugly head. You may "own" the condition, but it can adversely affect anyone close to you. Life is a journey, which we choose to take with a partner. The introduction of MS will make that journey somewhat different to what you had planned, but can still be taken together. The operative word there is "together". You both need to own and manage the MS. Any other way just causes stress in the relationship, and this stress can actually make the MS worse! If your partner isn't involved. he'll be unaware of what you're going through. He won't know what to do or say to make it better for you. He probably feels quite helpless and out of his comfort zone. As to the physical side of your relationship, he could be concerned that he'll be hurting you and may need reassurance. The "elephant in the room" is the MS, which is located between you. You need some emotional closeness, before you can consider physical closeness. Otherwise, as you've experienced, it's uncomfortable and not satisfactory for either of you. Offer to educate your partner regarding MS. The MS Trust do some good publications, which can be read online or you can get hard copies. The "Newly Diagnosed" section is a good starting place:- https://support.mstrust.org.uk/shop MS can be very unforgiving to a weak relationship. It can also make strong relationships wobble. You do need to discuss what you both want and how to achieve that. All things are still possible.

Amy2107

@Amy2107

@stumble Thank you for this. He has already taken upon himself and ordered the all the materials you mentioned, and we’ve gone through them together. He feels I don't do enough for my MS, he can't understand why I take a form of medication which has no effect on my day to day symptoms, and aren't trying additional medications to combat these. I have one last shot at trying to keep my relationship this evening, but he's already said there's nothing I can say or do to change his mind! If this truly is the case, i'll need external support more than ever.

Stumbler

@Stumbler

@amy2107 , I've just read your profile. It seems that the Tecfidera has kicked in and is doing its job of reducing relapses. That's great. But, your partner may have a point about your day-to-day symptoms. And, that's part of the battle with MS, protecting our future with an efficient DMT, whilst managing our symptoms on a daily basis. Now, that depends on what these symptoms are. Some symptoms can be medically addressed with drugs, some need physical therapy, some need aids, e.g. mobility aids and some need lifestyle changes. I can see that you are a strong-willed person, exerting control and making decisions in your professional life. But, a relationship is a team game, as is dealing with the MS. Your partner is possibly concerned that you could be managing your MS better and needs to feel part of "the team". MS can be a bit of a MonSter and we all need help from time to time. It could be time to open up fully about your feelings about MS, your fears and the future. Embrace the team game and see if your relationship has a future. There's plenty of support here that understands these challenge that you're facing. :wink:

TracyD

@TracyD

@amy2107 There is no easy way with something like MS coming into your life. In a way it's a bereavement for everyone in your family because to a certain extent it's the end of the old you and start of new MS you - the one constant is whether you're wearing a label that says 'My name is Amy and I have MS' or it says 'My name is Amy and I like knitting and baking' - it's still YOU - the same person you were the day before diagnosis, 5 years before diagnosis. I know I've changed since my diagnosis, I've become quite 'hard' and 'intolerant' of a lot of things and a lot of people - I call it my over developed 'fuckwittery tolerance level' and my poor husband has been on the receiving end of that shitty stick more often than I comfortable admitting. I'm strong, so very self controlled, okay - as everyone here will happily tell you I'm a complete and utter control freak who is very uncomfortable with anything that I don't completely understand and very OCD about making sure that I fill those gaps. I don't need anyone to have to take care of me or be responsible for me - however I do need that husband of mine to just be there even because I love him, and he gives great hugs, he's funny, he's a idiot, he's MY idiot and besides who else can I hit with that shit stick when I'm in bitch-mode that won't just up and leave me for someone who's 'nicer' than me ? The first time I yelled at my husband in the car telling him to pull the F*** over now because there was a high chance I was about to wet myself all over his car seat was kind of liberating in a way, I'd spent so very long trying to cover it up and hide it or just playing it down and saying 'opps cut that fine'. In reality I was terrified to be in an unfamiliar environment unable to get to a bathroom really quickly, I wouldn't go out to the pub anymore because it was a 20 minute walk - what if I didn't make it ? I certainly would drink when I was out I didn't trust my nether regions sober I certainly wasn't going to do 'pissed in public' the risk was too high. The foot drop, collapsing, words all coming out in the wrong order so I sounded like Yoda were things he could see, the loss of sensation to 85% of my body wasn't something he could see. How could he know that actually I couldn't feel it when he rubbed his fingers cross my skin in a romantic way - in fact what I could feel was a little like getting an unpleasant electric shock - not at all what we had been aiming for. The fog in my head that made it so hard to just get things done, I knew things were getting away from me it made me mad, but how do you explain that something so simple to organise and arrange one day was suddenly a bigger problem than world peace the next ? I wanted to cope with it all - it's my problem I'm managing very well thank you very much, no I don't need to talk about it. The thing is HE needed to talk about it It wasn't about what I needed, it was about what HE needed because he loves me and he needed to understand all of it too. It didn't come out in one of those 'lovely sharing moments' that you see in the movies - it was like the scene from The Exorcist with my head spinning round and everything that had ever even niggled at me slightly all this rage came spewing out in one absolutely god awful deluge of 'everything' and dammit it was his fault - he wanted me to talk about it - well don't complain about the form the communication came in - you wanted me to share ....... here it was ...... you wanted it - you've got it baby - bet you wish you hadn't asked now right ? Someone once told me that true strength isn't just managing everything on your own, it is about recognising that sometimes you need to share because someone else needs to carry some of the load too not because you're weak but because they need it to help them feel strong If you love him open the door and let him in even if you're not comfortable with it. If he's worthy whatever he finds on the other side of the door might shock him but he will be okay with it xx You have a friend request, I'm happy to share contact details if you need to talk xxx

Stumbler

@Stumbler

How did things go, @amy2107 ?

Amy2107

@Amy2107

@stumbler & @tracyd Thank you both for your advice and support. Unfortunately I was too late to save our relationship. I had shut him out too much and not realised. I've never been one to open up emotionally to people even when I was younger and at school, I was the one people came to with their problems, so I never wanted to burden them with anything I may have been feeling. Since then I've dealt with stuff on my own, to some extent i've even shut my parents out at times. In doing this I pushed him away and made him feel lonely and isolated. I'm hoping the self-referral I completed for counselling will help me to be able to unlock the barriers i've put up and enable to talk openly about how I feel. However it wasn't just the emotional side. When I was first diagnosed I sat him down and told him what could happen over the years and what the future with MS could look like, he said he'd stand by me no matter what. He underestimated how quickly I may deteriorate. In his mind he thought we'd have at least 10 years of me being perfectly "normal" with the MS being an issue. He wants to do things, but doesn't feel i'm capable of doing them so he hasn't. He doesn't want to spend the money on going out somewhere for me to turn round after a couple of hours and say i'm too tired to carry on. He wants to be able to go to theme parks with friends without having to constantly stop so I can rest for a bit. After he said this, I realised that no matter what I did and how open I became with him, it wasn't going to save our relationship because he feels the MS is preventing him from going out and enjoying things in life. So I accepted that relationship is over and we parted amicably. The hard part now is working with him every day, where he wants to still be friends and support me that way instead.

Stumbler

@Stumbler

@amy2107 , I'm so sorry that it has ended this way. You may well be having a problem accepting your diagnosis. Keeping it to yourself, whilst not openly admitting it. This is an understandable response. However, you have joined this community and been quite open and frank about your situation. So, you're a good way towards being able to do this in a face-to-face situation. Don't be too hard on yourself. a diagnosis of MS is a tremendous thing to take on board. It does take time and you'll learn to be more open about it. The prognosis of living with MS is never clear. What has been seen to date is no indication of what will happen in the future. Medical science has moved on and is still moving forwards, making MS a much more manageable condition. This forum has a motto, "MS doesn’t mean giving up on your ambitions, just rethinking how to achieve them. " :wink: