melissa-g 07/03/18
Last reply 2 months ago
MSers and our partners

Recently I’ve seen a fair amount of posts on the forum here talking about relationships. Some from partners of MSers wondering how best to lend support and some from MSers wondering how best to communicate their needs.

Would love to start the conversation here from both sides. MSers, how do you best communicate your needs or explain your symptoms to your partner?

Partners, what have you found most helpful for your other half?

Looking forward to hearing from you all!

Melissa

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


grandma
3 months ago

IHad a partner for 43 years, when I first got the MS I was in bed for 3 months not knowing if I’d ever get up again. Our local group has a group for carers, they meet socially, go bowling, cinema, all sorts or just meet in the pub fog a pint and a moan, my partner took on all the household tasks whilst still at work. Then he took early retirement to spend more time with me and then he reached 65, big mistake In the UK because Mr .Government thinks that you don’t need carers allowance when you get your pension. He stuck around for 18mths but then left. Is. In the middle of PIP tribunal cos I have lost my enhanced payment so no car and no carer so if you’ve got a good one appreciate them for what they do, give them as much freedom as you can and learn to talk to each other, there should be no secrets cos Mr government will mess it up soon without your help!


cammo
3 months ago

@mellisa-g My wife is a nurse so she understands the disease and how it effects people. She sees the worst cases in her hospital so she acutely aware of symptoms and how I feel when I have a relapse. (good choice of partner).
We have 2 small children so communication is difficult.
We try to have a bath together every week where we talk about what is going on and our emotions. Water (and Pinot Noir plus a few candles) seems to make conversation easier.


edmontonalberta
3 months ago

@melissa-g

Everyone is different. There is no “one size fits all”…

I am a loner; I hardly ever talk. I watch & listen – can spot things a mile away that most people do not notice.

Happily married twice; my first wife passed away 24 years ago from Scleroderma. We never talked about her disease – I was there to make her life as normal as possible. My present wife does the same for me. She comes to my appointments, takes notes & does everything possible to make my life normal. But we do not talk about my MS because if we do, I will get angry. And anger is not good for the disease…

As a treat for her 60th B-Day, she is in Indonesia visiting her Mom & sisters. She earned that & knows I am extremely grateful to have her in my life. Looking at her smiling face on Facebook the past few days makes me feel good.

Since you asked…


melissa-g
3 months ago

This is some great feedback everyone, let’s keep the conversation going!


mlm85
3 months ago

Im too scared to put myself out there to find someone… what a burden i could potentially become.


grandma
3 months ago

Dear mlm85, please do not be scared about ‘putting yourself out there’ as you put it. If someone knows right from the start, and loves you for you, there is plenty of hope out there, YOU WILL NOT BECOME A BURDEN, I live on my own, can do most things myself, am 61 and have 2nd progressive after 23 years of rrms, don’t need anyone else to help with ms, but would love somr company occasionally.😍Jill


kitty369
3 months ago

I have been married for 8 years but with my husband for 13 years.

Diagnosed last year. Which was a relief, I remember 6months before my diagnosis saying to my husband ‘ I just can’t do everything anymore, I am going to have a breakdown or go mad, life is killing me’ at this point I had no idea I had ms and thts why it hurt to work full time, be a parent to 2 children and run a house.

He has been wonderful since my diagnosis although a bit emotional about it at times. I have been off sick since December (following a relapse) and we are both understanding and getting our heads around how things might have to change in terms of lifestyle. He has taken on extra jobs in the house, I am frustrated by my current limitations but we try and talk about it. We try and see the positives of the changes that are happening, even if it’s just me being at home and keeping the dog and cats company!

If I am any sort of burden, I am a possitive one to my husband… he loves me and I adore him. I am still the same person inside i just can’t do the same things at-the moment.

I think you have to care about each other and try and communicate in a way that suits u.


joanne46
3 months ago

I have been with my partner for just over 4 years and was diagnosed RRMS 6 months ago. He has been a godsend…paid for all my private Neuro appointments, private pilates and Physio as the NHS do not think I need any. He still tells me every day that he can’t belueve how lucky he is to have me and provides for me emotionally and financially so that I no longer have to work. Admittedly I don’t really have any visible symptoms but I think if you really love someone you want to be there for them. At the end of the day…we all get ill with something eventually 😊


mlm85
3 months ago

Thank you 😊


potter
3 months ago

I will be married to my husband for 45 years in October and we dated 4 years before we married. We decided when we married that it was a partnership, we would have our ups and downs. We may even get to the point where we hate each other but we were sticking together. My husband is about to retire and that is a new hurdle for us to over come. He has been very helpful about doing house work, but has a hard time getting a grip on MS. He doesn’t want to talk about it. I will bring up tidbits of information in a conversation. I will say something like, “I read a interesting article today and it said this could happen with MS. I am spoon feeding him his education about MS. I don’t know what the future will bring, but I think we are going to stick together. Potter


daybyday
3 months ago

I was diagnosed last year, and my partner has had a mixed response. He is a person with a pessimistic attitude toward many things and has a habit of presuming the worst, so his response to my call after I got a confirmed diagnosis was to weep and declare our lives were over. I was the one diagnosed with this condition and in a pharmacy to fill a prescription for prednisone but had to calm him first. He doesn’t like to talk about it, but he’ll also start giving me pessimistic talks if I even refer to any kind of effect/symptom/lingering things. He has abrupt reactions to things like spasms, even though my spasms are brief, generally mild, painless, and don’t impede anything. So we’ve been having a rough time between this and other matters.

One thing is we have been together for nearly 13 years (this summer), and I made quite clear from the start that motherhood was something I wanted in my life. I compromised from two children to one. And he seemed to go along with that and talked like we’d be parents someday. But in the past couple of years he has changed his mind. I was clear at the very start was that I did not want to wind up a mid-30s+ woman who needed to find another partner due to desired motherhood with a biological clock feeling and I am now in my late 30s and current partner refuses to consider an adoption, even with the reality of MS. Given the collection of brain lesions they found last year (after what we suspect was at least 7 years untreated since my first suspected flare), I don’t want to go off DMT and risk it while trying to conceive or to chance the increased postpartum relapse risk. It does not matter to me one bit if my child is biologically related to me or not. For him, however it does. And this is a trouble point, but not the sole one. MS has been proving to be one as well, but it adds to a pile and fuels his pessimistic attitude toward many things in life.

I am more of an optimistic person both by nature and by having grown up raised mostly by my mother, who was diagnosed with RRMS when I was 2. My mother has been a role model for many reasons, and now this is another thing we share.


stumbler
3 months ago

@daybyday , your partner needs to go through the same emotional rollercoaster that you went through post-diagnosis. He is very much stuck in the shock/denial phase and needs to move forward.

In this respect, he is also suffering from MS and needs to see that life can, and must go on. This will take time and he will do it in his own time. You can’t force that with him, but be subtle.

I understand your maternal cravings. Ocrevus may not be the best DMT as pregnancy is not recommended. You should discuss your DMT and pregnancy plans with your Neuro, as there may be other drugs, e.g., which would fit better with your plans.

Whilst there may be a genetic factor to contracting MS, this is only part of the story. There are other factors involved. So, whilst the risk of passing MS on is marginally increased, it is not a definite.


daybyday
3 months ago

I discussed things and the matter of possible future pregnancy with my doctor during the treatment selection process last year. It is a possible route, though it would require careful planning. I’m not concerned about passing MS to a child. Even though both my mother and I have it. Though I lean more toward adoption for several reasons. But I’m concerned about being discriminated against when putting forth an adoption application due to MS (especially if we cannot resolve some of our issues and I apply someday as a single parent).

The issue, alongside the MS, is that my partner has stated he is no longer open to parenthood now. He told me “that dream is dead” this month when I mentioned being a mother. But his consistent negativity on the whole, for various reasons, has been a separate issue that is not made any easier or better now that MS is here. He tells me that I need to start basically assuming the worst, but not how I work. That clash in POV and nature has been a conflict point on several occasions, but we’ve mostly managed to make it work.


stumbler
3 months ago

@daybyday , your partner seems stuck in a time warp. MS is no longer the condition that it was. It is no longer an express one-way ticket to a wheelchair. It is now a manageable condition.

There are treatments available today that were not available ten years ago. And, the advances in treatment show no signs of slowing down. So, there are good signs for anyone being diagnosed in the future.

It must be concerning that your partner feels that “that dream is dead”! At Shift, we believe that “MS doesn’t mean giving up on ambitions, just rethinking how to achieve them.”

It’s a philosophy that you could try to sell to your partner.

There are some short films, commissioned by Shift, that you and your partner might want to watch. Go to :-

https://shift.ms/ms-what-now

and scroll down to “Our Short Films”.

I hope this helps.


daybyday
3 months ago

Thank you @stumbler for that. I agree, that based on everything, the advances have been made that improve MS care and outcomes. My mother was diagnosed in the ’80s, and my options now are so vastly different.

To me, the doors remain open. I’ve made small changes as needed. Still working on others. But this is a bit of a larger issue with negativity/pessimism that is worse when he won’t even listen to me talk about certain MS related things without either stopping me or assuming the worst. So this will continue to be a challenge for us at this time, but this is still not even a year after diagnosis. I keep that in mind as it came at a difficult time already, with him needing a new job (which he now has, thankfully).


sciencegeek
3 months ago

Although this isn’t want people will want to hear, my diagnosis has led to the breakdown of my marriage. It has its problems before, and my husband did expect a lot from me. He’s really stuck in the denial phase, even after two years.

It’s destroyed my respect for him, as he won’t even go to see a counsellor or talk about why he’s finding it so difficult. He just wants me to carry on as before (working, running house, looking after three children, looking after him) and I get no support from him at all.

I honestly think that the diagnosis just exposed all the flaws in our relationship, and made them so clear that I couldn’t keep ignoring them. And I have realised that looking after me means, most likely, splitting up so that I have one less stress in my life and fewer demands on my time.


grandma
3 months ago

Dear science geek and daybyday, my other half went last year after 43 years of marriage we’re better friends now than we had been for 20 years and I now find I can eat when I want (taking Tecfidera into account) I can eat what I want (I can cook cauliflower cheese which I love, but he couldn’t stand the smell of it cooking, likewise Kedgeree, I wasn’t allowed to cook smoked haddock for the same reason. We gave a pair of Airedale’s, which he comes to walk every day, they after all our reobsibility and much loved by us both, they live with me but it has taken a year to persuade him to contribute financially to their upkeep!

If the time has come to say goodbye don’t worry too much, it will all become clear in the end, don’t rush in but the time for yourself element is all too true! Either way good luck, we’re always here for an opinion, a moan, a celebration or a cry🤣


daybyday
3 months ago

What you say, sciencegeek, is familiar. Mine tells me “I need you to be okay” if I have spasms or something else, and is reluctant to hear too much MS-related or when I do talk about symptoms or testing, he’ll get awfully pessimistic. A kind of denial phase too. That reads to me as ‘don’t show any signs of this thing you’re living with but I need you to act like you aren’t.

I’m positive about it. I live with these things. Emphasis on living. It is part of my life and will be.

To add to it, around year’s end, his old, sweet kitty went blind (and was already hard of hearing) and his reaction to her blindness was initially failure to accept the change and lamenting her changed behavior. I told him she would be fine, she’d adapt, but the reactions to her new limitations did not give me a good feeling, all things considered.

And @grandma, thank you for that. It really does reflect some of the thoughts I’ve been having in some ways. Considerations of taking care of me and needing to do right by me may require some changes. I am not rushing anything, and working on some other matters as well, but I am grateful for the supportive folks here. 🙂


Anonymous
2 months ago

I male with ms, my wife a ferociously healthy Nigerian woman. IVF for children just starting. Oral sex is my fallback and Viagra as a supplement… such a shame spasticity doesn’t result in your chap standing to attention! With love…

Post Comment

You must be logged in to reply to this topic.