Relationship with someone with MS

Caring for someone with MS
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hello

I suppose it all depends on how much you want this relationship to work out.

I can only base my answers on my own experience.

My balance was the first big shocker. I looked drunk all the time. I was drunk quite a bit of the time. (well if people re going to talk about me, give them something to talk about).

He will need time to move about safely. What you can do is show patience and let him take his time.

With good support from his MS team and the right medication there is no need to assume that he will go downhill any time soon.

To be honest, the best thing you can do for him is to be a sort of invisible support. A good friend of mine just holds my elbow if I start to wobble. That is the perfect way to stop me wobbling. Not an obvious arms around me. just a subtle guidance.

As for how his MS will progress, it could well remain stable, he could have the occasional times when he feels/appears worse but that is par for the course.

We have good days when nothing can stop us and bad days when everything goes to shit.

That is a human thing not exclusively an MS thing.

What I often need is a break from the treadmill that MS has me on.

A good day/weekend which can be looked forward to and which gives me a lift when I remember it.

The best times that I had were when a friend who works for Network Rail gave us Oyster cards and Tickets to London.

It was only a weekend but we walked over the millenium bridge to the South Bank, went into the Tate Modern which we both enjoyed and dragged ourselves away after 3 hours only because we needed lunch (me) and beer (husband).

The bars along the embankment were fab.

Another event was going to see Roger Waters at the Manchester Arena. He can get a free ticket for a carer, which means that you can both go for the price of one. Is your fella aware of these carers tickets? they need to be applied for when booking tickets.

The thing that is important for me is that I need to feel safe in the venue. The Arena makes me feel dizzy as soon as I go in. So I bought tickets for a box. Those VIP boxes are fantastic. You have a small room with a balcony. In the room there is a bar, unattended but with a telephone. I picked up the phone and a voice asked me if there was something I would like, I said that we would like a drink and the next thing was a waiter appeared with our drinks. That was excellent as queueing for drinks takes ages and is like a mad scramble.

So try suggesting going to a gig. As a new relationship the bond of liking the same music should not be underestimated.

Think of it as a glass half full, not half empty.

I hope my reply has been useful.

Wishing you both well.

Carole x

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Hi Anon, well its my guess (and it is only a guess as no-one can really know) that if your partners medication is working well for him, then it could well continue to keep him virtually symptom free for a long time.

Usually if RRMS isnt treated with DMDs, and attacks happen often, then it could progress to SPMS.

The variety of possible symptoms vary so widely…just an idea of some could be;

pins and needles

numb areas

continence issues

forgetfulness

spasticity ie spasms and stiffness

vision problems

You need to be able to support him with discretion, as he may not want people to know he has MS. If he isnt in the mood to talk about the subject, dont push it. Wait till he mentions it and then join in.

If he has medical appointments, ask if he`d like you to go with him. If he says no, then leave it.

Boudsx

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I think his personality type will play a massive role in how, if you decide this is something you can do. My husband had rrms for nearly 30 years, we think, looking at history, had s number of serious relapses at age 51, associated with a stressful job, was within a v short time diagnosed with spms, which he did not react to and tried to ignore the diagnosis This resulted in further serious relapses culminating in serious depression and him becoming very angry with life. This has continued for 13 years now and having attempted to take his own life 3 times, it’s been a rough time. Tog ars only 6 months into a relationship, consider carefully if you are cut our to be a carer. In my experience MS changes personalities, it can be a lonely experience being in a relationship with Ms.

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Hi Anonymous,

I don’t think it is possible to predict how anyone with MS will change over time, so I suppose the best way is to ask others experiences.

My husband has had MS for around 11 years now. It started as RRMS though has now progressed to SPMS. He was fit, healthy, worked full time and was generally a positive, sociable person. MS has taken away his ability to work, his mobility, his confidence and has left him bitter and negative a lot of the time. His personality has definitely changed for the worse because of MS. He is still friendly and sociable when the opportunity presents itself, but gets depressed because he feels trapped at home a lot. I work full time, so between that and being a wife and mother, I haven’t always got the energy to entertain him.

With regards to mobility, I can handle these changes more than the personality changes, and his constant need to attribute his MS to our location rather than any other factor. The looking backwards instead of forwards is mega annoying. I need to constantly remind myself that a lot of this is caused by his MS, but it is becoming harder and harder. We have a third person to consider too and to me, my first responsibility has to be as a mother.

My advice would be to encourage your partner to eat healthily, to stay active and to continue to socialise with friends outwith your relationship. I feel trapped in my relationship because his circle of friends have mostly moved away for work or relationships, his family don’t live nearby and I feel like I am now solely responsible for his happiness. Make sure that you both have a good support network of friends and family, so that there are others to help out if your partners MS does begin to progress.

Good luck to you both, I hope it all works out.

The Wife (because often I forget that I am anything else)

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The wife. Sounds like my situation. Ms is a cruel disease. One of my husband’s sayings is that it robs you if everything. Looking backwards seems to be a symptom and although is understandable, I too get annoyed and frustrated as I do feel as long as you look backwards you can’t look forward. I too feel the responsibility of his happiness and likewise when he now just shuts down and wont communicate. It’s a lonely place, not one I could ever have imagined.

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I have been married to my man for nearly 8years now. He’s had MS for over thirty yrs diagnosed in his early thirties. He’s managed his symptoms very well up until about 2-3 years now. He managed to self catheterise, but it got too much he’d be up 2-6 or more times in the day and night to attend the loo. In the end I have had to sleep in the spare room. All though our sex life was never consummated, that to me didn’t matter so much as i love him regardless. Recently his MS has deteriorated to occurring bladder infections (as he has a catheter in-situ) falling over and having to call the helpline frequently, followed by a months stay in hospital that required carers attending his needs on return home. This has been a considerable shock as his MS has been so manageable for so long. My husband is not a talker, doesn’t want to go in-depth with his feelings and from someone that was so active in his early years must be a horrendous thing to cope with. Wish I could help him more but I have osteoporosis and beginning to feel it more now in later life. Yes it’s a lonely path, but we manage to keep our spirits up and seeing the situation as it is does helps me a lot, in return he does value my me as a person. Wife and mother.

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Hi, I was moved by what you wrote. Moreover, my partner has a super-pubic catheter, which is changed every 3 months. I know that whatever form of catheter one is using, bladder infections are common. When you said, catheter in situ - is that catheter changed weekly, monthly? Two tips from experience…1) if catheter is not changed often, the district nurse can come and flush out the tube every two weeks upon request, and 2) I have discovered that putting half a lemon every week into a refillable jug of water to daily drink from has kept the bladder/urinary tract infections at bay. Since doing this, my partner has not been to A&E at all for the last 5 years - not a single episode of infection since. Previously, the bladder/UTIs happen at least once every 2 months. You can fill up the jug with cold/hot water to drink from each time, with a straw its easier. Just leave the 1/2 lemon to soak in the leftover water and replace the lemon after a week. The mild acid in the soaked lemon kills the bacteria in the urinary system & has kept the inconvenient infection at bay…give it a try and see what happens after a month in order to take effect after implementation.

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Why not??? :zipper_mouth_face: :face_with_raised_eyebrow:

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I don’t see anything wrong with that. Everyone deserves love, support and care. I have friend who met a man with MS in the app. She liked him but something happened to this application and she couldn’t contact him. Fortunately, she found silver singles phone number and found out everything. Upon her return, she took his contacts so as not to lose him. Now they have been together for 2 years and it’s so wonderful. They were lucky with each other and that’s great!!

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That’s a lovely story! Sometimes I don’t know how we keep going, as partners, because our lives change, and there’s a lot to cope with. But the person we love is still the same person we want to be with, and care about, and cares about and loves us, and dealing with things together is always better than alone, at least that’s what I find.

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Being in a relationship with someone with MS is a very lonely place to be. My husband and I have been married for 30 years and he was diagnosed with MS 13 years ago. It’s been a long, hard road. He was a wonderful person before his diagnosis, sometimes a little unreasonable, but always caring. Now, there is no reasoning with him. If he looks at the blue sky and says it’s grey no amount of reasoning or proof will convince him otherwise. He feels that his needs always take priority and when I try to express my feelings he points out that he’s the one who is sick. Just because I’m healthy I can’t have feelings, that’s utterly ridiculous. I wish I could leave, but I just don’t feel right doing so. We have a daughter who is grown, but me leaving her dad would have a huge negative impact on her and also my relationship with her. It’s so hard. I’m stuck so my advice to others is think long and hard before you enter a relationship with someone who has MS.

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I have similar. Nothing is any good, can’t agree with anything. Seeing every conversation as an argument.
I now limit speaking as is pointless.
I listen n don’t comment or rarely reply.

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I have PPMS and am hugely concerned about the amount of pressure I am placing on my wife. I completely love her but struggle to play my part in housework I do try but am easily fatigued. I struggle to watch her do everything even though she states she is ok. I just find this difficult

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Hi, my husband has been recently diagnosed after 2 years of bouncing between specialties and long waiting time.

Today I saw your post and now everything makes sense to me.
In these last 2 years, my husband drove me insane.
He became stubborn and unreasonable. Exactly like you are describing it.

I thought I was going crazy. I have even been to see a psychologist because I can’t cope anymore. Now everything makes sense thanks to your post.

How are you doing now? How are you coping with this?

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Difficult and challenging behaviour. Hard to know where to start. In addition to the spms, now had an informal diagnosis of alzheimers. Every day stuff, conversation and activities are increasingly hard.
Initially id thiyght the memory and cognitive difficulties were just ms, but the unpleasant and frequently nadty behavior is v hard and no longer feels like ms, especially when i do compare with other ms suffers.