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MS and relationships

Hi all,

I hope you’re all in good health.

i was diagnosed with MS about a year ago and have started treatment not too long after. I’ve been in a relationship with my partner, who is also my best friend, for the past 3 years. I was always been so honest and open about my MS, and he has been so supportive and caring through the difficult years. However, he has been in denial and really struggled to accept the diagnosis and is very scared about what the future may hold. He recently told me that he doesn’t know if he can be with me because he’s scared. I’ve encouraged and supported him and done everything I can to help him understand that things will be okay. I just don’t know what to do. Any advice would be highly appreciated.

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but are you in denial? - you say ‘things will be o.k.’ - they may be o.k. or they may not - m.s. is a massive game changer. I don’t know if anyone who doesn’t want to be with someone else with m.s. actually change their minds - maybe other posters have thoughts on this. My gut feeling is that he’s wanting out.

the trouble with men is that they like to fix things. fortunately i’ve been with my husband for 38 years so i was prepared for that. i had to put my foot down and say that it was MY ms and i needed to handle it my own way. he took heed and i do it my own way. nobody knows what the future may hold. traffic accidents can be fatal or cause life changing injuries. strokes, heart attacks etc. are you on a Disease Modifying Drug? explain what the rational behind them are. we are lucky to be around at this point in time. my auntie who was quite glamourous and a career secretary had her whole life fall apart when she got ms. that was in the 1960’s and the drugs weren’t available. maybe that’s the kind of story he thinks could play out with you. is he often scared? or is it because he is aware that it will impact on his life? to be honest it WILL have an impact on his life. nothing major but slight differences. i used to be able to drink mine under the table but now i’m a proper lightweight. keep the fun side of life going. take him to the pub. i’m taking mine later! book a weekend away. appear calm yourself because he’ll be watching you like a hawk to see if you’re going to fall apart. when he sees you taking it in your stride he may calm down. look after yourself xxx

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Hi Anon,

You say… hope we are in good health! We msers are on a permanent rollercoaster with health issues. It’s 31* here… zapping all our strength.

Lets just say if he can’t stand the heat… get out of the kitchen?

Hello

I agree with everyone else.

First that it’s your MS, not his. You’re the one who is stuck with it. So why should he be allowed to get away with ‘being in denial’ or scared about the future? He can up and leave MS anytime he likes. You can’t.

Second that it does in fact sound like he’s edging his way to the door, being a bit guilty as he does it, so trying to do it bit by bit. ‘Letting you down easy!’ Or waiting till you get p’d off and give him the boot.

Lastly that while he is nervous about the future, we are indeed all on a magical mystery rollercoaster. We have no idea what lies in our future. And that goes for all of humanity, not just MSers, although in our case the scales are slightly askew. We are a bit more likely to have poor health and/or some degree of disability in our future.

In my opinion, you should sit down and think what you are getting from your relationship. You already have no choice but to live with an uncertain disease, do you also want to live with an uncertain relationship? Because it sounds like he could decide at any minute that it’s not right for him.

Or if you feel it’s fairer to be more honest with each other, sit down together and figure out whether you want to be together in spite of MS. That’s not to say you should make him feel especially guilty, after all, given the choice, I’d have given MS the boot. But just be adults about it. If you are to be together then you need to have had that conversation and made a deliberate choice to stay together.

Sue

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Hi so i was diagnosed with ms a few weeks back was put on steroids for my optical nuritis still waiting for addenbrokes appointment about treatments in mean time me and my husband wanted to try for another baby but unsure what i should do now. They are putting it down to me have a relapse 2 years ago and now having another flare up this year. Do i wait for treatment whenever that will be been told waiting list june 2020!? Or go ahead and start trying for a baby. Any advice would be good please!?

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Hi Carole 58 wrote a great answer.

There are no guarantees in life or relationships with or without MS. So let us say you were married 28 years and then got MS, would he give up?

So many other things can happen to us. Isnt being in love about sharing and wanting to be with someone in sickness and in health.

Do you actually live together? If you dont then that can be a slight game changer as less too loose overall.

well if he is struggling and you have to constantly prop him up you are going to get exhausted which isnt good for your own health. I think you have to be firm with him. Say no one can predict our lives.

I was going through a lovely marriage he was the love of my life. I loved him so much. we were great friends and i didnt have MS when i met him, but he had COPD and it got worse over time, but it was what it was. I made sure he ate well and looked after him the best I could. when i got sick he just accepted it. Like carole said he was frustrated as he couldnt fix me.

he finally retired at 70 and by 71, he died suddenly and i am on my own now. I never thought he would go before me, as although he had COPD he was always so strong or so i thought.

BUT he was terrible he wouldnt eat properly, smoked all the time and drank his alcohol as he would say well he deserved it as he worked hard. would he still be alive now if he was a teetotaler or didnt smoke who knows, but he would have been miserable lol.

I have had MS friends who sadly passed away with cancer and both were still working.

What does he actually think is going to happen to you? My sisters mother in law was 82 when she passed away from complications with her diabetes but had MS. She was married over 40 years and it was only towards the end that she was bed bound, to be honest more from her diabetes. People can go years and years and years with MS and live good normal lives. He seems to be focusing on doom and gloom. Maybe he has it in his head you will end up a drooling basket case. Maybe you need to buy some books or hey put him on here we can chat to him lol.

sometimes they do this to put the onus on us, to make a decision so they can leave without feeling guilty. ASK him straight do you still want to be here or area you making excuses. better to know now then waste anymore time.

I hope you sort it out i really do. But if not believe me there is always someone for you its finding them, and they can turn up just when you think you will never find the love of your life. I was 40 when i met my Mike. I had been through the mill with men lol, i knew as soon as i saw him he was for me.

GOOD LUCK. If you love then sometimes you have to let go. It seems from what you have wrote that you are making all the efforts, as he should in some respects be supporting you. xxx

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Hmm. I’s afraid it sounds as if he is already reaching for the door and requesting your permission for him to open it and go. That’s OK - some people stay the course and some don’t. If he is talking about being ‘too scared’ now, he doesn’t sound like a keeper to me, I’m afraid.

Please don’t try to persuade him to stay if he wants to leave. He will only start resenting you and start to act as if he’s doing you a big favour, which you will very soon find that he is not. I am sorry to sound so harsh, but I really don’t like the sound of it. I hope I’m wrong.

Alison

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Hi, what I am hearing from your post is you are both scared. To me fear makes sense (I was diagnosed two years ago).

to me you guys just need a real talk. My personal stop point is… Do I love my hubby & want to be with him. As long as the answer is yes, then I will do nothing to end things.

as you have not yet committed to each other it sounds like time to have real conversations. You don’t have a choice weather or not to live with the uncertainty/ day to day issues. He has a choose, my thinking is that he needs to make that choice. What ever that choice is you will have a great life. Big hugs at this difficult time.

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LOVELY POST. SS. XXXX

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I agree Alison. x

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Hi My partner has MS and this is a recently new relationship. When he is asleep he has terrible spasms which wake him and myself up. Any suggestions on treatment how to get a better nights sleep. I have suggested we try massage. Any other suggestions?

I found magnesium sorted the problem and no harm in trying, before looking at a drug solution.

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This is really hard and everyone will be different.

When my wife was first diagnosed we were just friends. I was there to comfort her, then we got closer, we became a couple then we got married. We read all we could around MS, but back in the mid 90’s there was very little information around, the internet was still new, so whilst we were scared we didn’t really know what to expect so just got on with it.

We’ve been together 24 years, married 22. Her MS has got very bad recently and she is now quite advanced. Only her right arm really works, the other limbs don’t do much except spasm. eating is getting difficult etc etc etc. I’m having to give up work to be a full time carer. Our once outgoing, adventurous life has been turned upside down and we have to plan to the nth degree even before going to the shops.

We do talk, and we have discussed whether if I knew back at the start, what I know now, would I have just stayed friends and not taken our relationship further. And it’s a hard one to answer. I didn’t choose to fall in love with my wife so I probably would still have gone down the same path. That doesn’t mean though that we both don’t look at what we’ve lost and continue to lose.

Unfortunately, how MS progresses does directly impact you and your partner, there is no denying that. Until my wife became really ill it might just be we’d leave the pub early, catch a cab to the train station rather than walk, or stay in a cooler house on blistering hot days. Now it means we wake up 3+ times each night for various reasons, have an emergency once a week, I do all house work, cooking, cleaning etc, I’ve given up work. How your partner will react to this, if you ever get very ill (which you may not of course, given the randomness of MS), you will only know when faced with it.

But let’s not shy away from this, this is scary. I know I’m going to lose my wife to MS as some stage. I’m seeing her get slowly more ill by the day, as this cruel illness takes her away from me bit by bit. Some days I scream in anger, some days cry with frustration. Some days I feel I’m already in mourning for the life we used to have and lost, and all our plans have been thrown away. What I will always be though is here by my wife’s side no she needs me the most; however much pain I’m in with all the lifting, however little sleep I get, however many friends I’ve lost contact with, all this is nothing compared to what my wife is going through.

This has turned into a brain dump - sorry. What I was trying to get to was, your partner might not want to lose his life too to MS. He may love you, but not be able to face this. Best to find out now whilst you are still well, than years later when you may need the support more.

Oh, and if you do decide to look somewhere else for love, make sure he has a strong back and arms as he may need them as some stage!

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Does he take Baclofen? I found that helps with my spasms

Thank you for this very honest, humane and thought-provoking post. It is so useful for those of us who have MS to have a glimpse of life from the other side, so to speak.
alison

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The onset of my MS caused me to go a bit mental tbh, wife of 13 years left screaming “I don’t want to be his carer” People left in droves not knowing how to handle it and there’s part of me that doesn’t blame them. Things can get out of hand very quickly and MS can be a curse to a lot in life. Your boyfriend’s obviously got this on his mind, anything can happen but it’s never a bad idea to hope for the best and prepare for the worst if there’s continuing signals.

Afternoon, all.

Trust you are all safe & sane (well maybe settle for just safe) in the current situation. Hoping the weather is also not to debilitating for those of you who suffer heat lightly.

Apologies if this seems like a Dear Deirdre type post.

I write today not as someone who suffers from MS but as someone who has recently fallen in love with someone who has Relapsing MS. She is a single mother of two boys and a wonderful person. The issue I am struggling with is that for the longest time she has had to deal with it on her own mostly (obviously has family support) and has only just recently decided to start dating. As a single father of two boys myself, I also happened to start dating again at the same time. We have a massive amount of things in common but the one issue that I really struggle with is that she seems to be a rather egocentric person because of her MS. Now, before people start rioting and shelling me, i get that it is her MS and that I need to be supportive but what I wanted to discuss was whether this was possibly a by-product of MS. Are there are MS sufferers out there who would agree that they have become more focussed on themselves to the detriment of other friends and partners? Is this a typical mental response from MS?

I welcome your positive responses as I am trying really hard to learn more about MS and how I can be supportive to her.

Hi Deo49, Firstly, just want to say, I understand why you are seeking opinions. I hardly ever post on here, even writing this response makes me feel anxious. Must stress this is from my own personal experience. MS is hard enough for the individual to comprehend and I frequently worry about the impact it has on those around me. I am a newbie to it, less than a year from my official diagnosis. I was a single Mum to my twins, when my ex-husband left me, my gorgeous children were 18 months old. I won’t deny, it was a tricky time, working and managing boisterous toddlers. Looking back, before MS officially raised it’s head, I was possibly quite preoccupied. I felt a strong sense of self-preservation as I felt I had to be ‘everything’ to my children and it took me some time to move on from this. With hindsight, that alone could have made me seem ego-centric. You need to take care of yourself, so that you can be there for those who need you most. However, throwing MS into the equation, I would have felt an even greater sense of looking after myself and I strongly sympathise with your partner. Maybe, inevitably, you become preoccupied with yourself and your health. Such a cliche but, especially with MS, on the exterior it can look good but it can be very different on the inside for the person dealing with it. Sometimes you have to openly express how you are feeling because it is not obvious to those around you. I am fortunate, I married my husband prior to all this emerging. He knows the person I was and supports the person I have become. I am extra lucky as my children are amazing but I hate the impact it has on us all. Not really sure where I am heading with this but it sounds like you have a lot in common and you want to support her. It is great that she is being so honest with you. Possibly her honesty is coming across as preoccupation with MS. I do think, in the past, I have been sub-concsiously testing my husband by stressing the negatives to see if he will stick around. On this front, so far, so good. He understands and listens to me and that is what I need the most. Wishing you both the best for the future.

Thanks for your insight Dizzee. I am so very new to this so appreciate all the perspective I can get. Keep well during this time and good luck with your MS. All the very best & a big hug too :slight_smile:

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