emmacartwright 25/02/18
Last reply 1 month ago
Supporting someone with MS

Hi All,

I’m new to this so please bear with me if I’m asking any stupid questions! I joined this group in the hope that I could get a better understanding of MS and what to expect. I don’t have MS however my boyfriend has been diagnosed in the last couple of months so I’m just coming to terms how we will both cope with this.

To give you a bit of a background, we haven’t been together long, in fact we were only dating for a couple of months before he got his diagnosis. We have however since made our relationship “official”!! He has RRMS and understandably is concerned about his future. I’m looking to see if there is anyone on here who is in a similar situation or looking to speak to someone with MS who can give me a better understanding of what to expect? I’ve spoken to a few of my friends about it who have advised me to get out of the relationship while I’m still fairly young but I just can’t. I love him so much and although I know that MS puts a certain amount of uncertainty into our future I know that he’s the person I want to be with.

I’ve been doing as much research as I can online but it’s a mind field out there with so much emphasis put on the unpredictable nature of the disease.

Does anyone have any advice on how best I can support him? I think he’s worried that because of his diagnosis that I won’t want to be with him anymore.

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stumbler
2 months ago

Hi @emmacartwright and welcome.

By the way, there’s no such thing as a silly question, but you may get the occasional silly answer! 😉

Anyway, it’s good of you to join us on behalf of your boyfriend. He’s lucky to have you.

With such a recent diagnosis, he, like you, is caught up in an emotional whirlwind, as he battles to come to terms with this. It will take time, but bear with him. He may not want to discuss it at all, so don’t pressure him. Just reassure him.

MS is no longer the condition it used to be. Medical science has now provided us with treatments to manage the condition. It is no longer an express, one-way ticket to a wheelchair.

Help him to lead a balanced life. Not too many highs and lows. And, a healthy, balanced diet. And, most importantly, he needs to avoid stress – you can help here, I’m sure.

Beware of Dr. Google. He can provide some horror stories, which are so out of context. Stick with creditable websites, e.g. the MS Trust, MS Society, etc..

And, feel free to ask as many questions here as you like.


potter
2 months ago

I e-mail back and forth with a couple who have MS. He was already diagnosed when they met and she was diagnose ten years later. He works from home and she started working part time recently her full time job was too stressful. They are both in their early 60’s and have and son and grand children. They have lived a pretty full life for two people with MS. I wasn’t diagnosed until I was 55, I felt bad thinking I had ruined my husbands retirement years that were coming up. It has been 10 years and I am still walking, I mostly have trouble with heat. We are at the age our friends are having health problems also and are in the same boat we are. We realized that MS didn’t ruin our life it brought us closer together. Potter


mmhhpp
2 months ago

Well, it is a difficulty situation. He may be fine over many years ahead I’ve seen people who had MS for +20 years and they are having minor problems .

Now if he’s one of the unlucky ones like me after eight years you could be in a very very difficult situation I relly entirely on the people who come and help . Husband has said many times he’s not my carer too much pressure on him and the kids so very very difficult situation . Women tend to be a little bit more understandable as carers. But it is a hard journey ahead not everyone is ready for it . you need to give up a lot as a MS patient , your boyfriend should give you all the freedom you can have. It is not an easy journey specially if you’re young . Xxxxx


emmacartwright
2 months ago

Thank you both so much for your reply


mmhhpp
2 months ago

vixen
2 months ago

Hello @emmacartwright, what a joy to log on and read a post from someone like you, who is clearly a lovely and supportive partner. Thank goodness you have been mature enough to look past your friend’s advice. The truth is, none of us know what is around the corner, MS or not. As @stumbler implies, receiving a diagnosis today is not what it was 25 years ago. You must both still look forward to the same things you would have without this diagnosis. They will all happen, but it may be that you have to find a different route to get there!

You both need to take time to absorb the diagnosis for now. Don’t worry too much right now about planning too far away until it has settled in, just focus on the here and now. Is he on meds at the moment and does he have an MS nurse? If so, it might be great if you sent along to appointments. But don’t worry if he doesn’t want you there, the first few times I didn’t want my husband to come to mine!

Keep posting any questions, I wish you both all the best x


gates1989
2 months ago

I hope this helps you… in September I’ll have been diagnosed 10 years, I drive my car, a manual, no adaptations, I work full time in London, I live in Essex, I don’t use a wheelchair, a walking aid or anything st all, I’ve just finished R2 of Lemtrada and expect my situation to continue in a positive way. When I was diagnosed I felt every emotion possible, and all I wanted to hear was positive things, so I hope this helps if you show him it. If not, I hope it helps you, it’s not a death sentence and it’s not the end of his world, even though that’s probavlu how he’s feeling xxx


emmacartwright
2 months ago

Hi @vixen thank you for your kind reply. He is honestly the most genuine, kind hearted person I’ve ever had the pleasure of meeting and I just hate the fact that this has happened to him. We have spoken about the future and hopefully down the line we will still be able to do the things we both want, like get married and have children. I can’t help but feel though that he wants these things fairly quickly for the fear that in a few years time, he won’t have the ability to do so. Do you mind me asking if this was similar thoughts that you had when you were first diagnosed?

He does have an MS nurse and hopefully starting his meds next month. I think I will go along to the next meeting with the nurse, I am just scared I ask a question that will make him think that I’m having second thoughts about us because of his diagnoses. It’s all very new at the moment for us both but hopefully if I continue to reassure him he won’t think I’ll leave him as soon as things start getting tough! x


emmacartwright
2 months ago

Hi @gates1989 thanks for your positive reply. With all the internet searching im doing it feels as though it’s all doom and gloom so it’s great to hear how well you are doing after being diagnosed 10 years ago. I really appreciate your advice x


edmontonalberta
1 month ago

@emmacartwright

My 1st wife was nervous about marrying me. I was seven years older plus drank & smoked fairly heavily (she did neither). She was worried about growing old alone. Scleroderma killed her 24 years ago. It was me who had to piece their life back together again…

To make a long story short, is he good for you? Does he make you happy? Are you #1 in his life? If you have that you are ahead of 90% of relationships I have seen.

Life is a journey & we all know the destination. Enjoy the drive…

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