Sensitive question

Caring for someone with MS
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Hello all. I have a very sensitive question to ask and I hope I don’t offend.

I’ve recently reunited with an old friend - once upon a time he was the love of my life. In many ways he still is. He has been diagnosed (about four years ago) with MS. At present he struggles with mobility and with shakes in his hands. He does not use sticks and loathes talking about his illness, but will discuss it if I insist.

He’s always been even tempered and lovely to me, but I have seen him lose his temper with others. I don’t think he makes the situation better - he ignores medical advice about diet etc and is often stressed.

I love him. However I have a little boy from a previous relationship. I worry about our future.

Given what you know now, further into the illness and living with the consequences, would you pursue the relationship?

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Hi Riseandshine,

Only you can decide.

But I will be honest: If you are already noticing things you regard as “issues”, such as undesirable treatment of others, or not managing his illness in the ways you think best, I would say the omens aren’t good.

Not necessarily because he’s ill, but if you have concerns you feel unable to raise with him, and choose instead to ask strangers whether you should pursue the relationship, it suggests things aren’t great.

What medical advice about diet is he disregarding? I ask only because there is no medically accepted diet for MS. If he is overweight, losing some may improve fatigue, and help preserve whatever mobility he still has. So he may have received advice about sensible eating and weight loss. But MS is not considered a lifestyle disease. I know of no mainstream neurologist who believes it can be managed by diet. A sensible diet may benefit you friend’s general health - the same as it would for anyone - but there’s scant evidence it influences the symptoms or overall course of MS. Some will disagree, of course: diet falls into the category of alternative therapies, that some may wish to try. But it’s unlikely your friend has been medically advised a diet especially for MS. This is not sanctioned anywhere in NHS guidelines.

Stress is a difficult one. Most MSers agree it does aggravate symptoms. But I’m sure your friend is not deliberately getting stressed - nobody does. If he has a naturally stress-prone personality, what’s he supposed to do about it? It’s a bit of a cliche, but going into a relationship hoping you can change someone hardly ever works. Your friend’s reaction to stress is what it is - he probably only has limited capacity to change it, if at all. So if you are going to get frustrated he isn’t handling it right, in your opinion, this will be a source of tension between you (no doubt adding to his stress!)

If you’re asking how bad will he get, the problem is that nobody knows - not even the experts. MS is a notoriously variable and unpredictable disease. If you love him as you say, then part of that will be learning to live with the same uncertainty he does - not knowing if he’ll be OK next week or next year. But having said that, no partner (you included!) comes with a lifetime warranty they won’t get ill. Anyone can get struck down by illness or accident any day. The difference is, MSers know Fate has a few tricks in store for them. The vast majority of healthy people never think of this. But it doesn’t mean Fate can’t play games with them too.

I was diagnosed with MS about the same time as your friend (three to four years ago). A few weeks ago, a friend was diagnosed with something unrelated. She is already much worse than me, much more quickly. So never assume MS is always fast, or the worst thing anybody can get.

If you do decide to pursue the relationship, then good luck! But I would suggest MS may not be your biggest obstacle. If you are harbouring concerns you’d rather post on a forum, than discuss with him face-to-face, there may be other things not right, that aren’t all due to MS.

MS is responsible for a lot - but not always everything!

Tina

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I would worry a bit about the temper. Having MS is very stressful - and it keeps on being, and in a way gets more and more so - and if he gets foul-tempered under stress then that is a real concern, both for your sake and for your child’s sake. You don’t want a situation in which you and your son are walking on eggshells to avoid aggravating some man’s glooms.

I also think you need to examine very carefully what it is you want from him, and what he has to give you. He isn’t the robust, healthy young man who was the passion of your youth. He is a person with a chronic progressive neurological disorder and he is going to get sicker and less and less able over time unless he is remarkably lucky. We always know when we go into a relationship that we hope will be long-term that illness and disability might come out of the blue, and we will have to deal with whatever comes along. It won’t come out of the blue with this man - he comes with that already! Are you prepared for what that might well mean for you and for the nature of your relationship and the kind of role you would find yourself playing? Partners of people with MS very often find themselves being the main breadwinner in hte household and also doing the lion’s share of the chores and childcare and maybe being part-time carer as well, and all (very often) on not very much money. MS affects everyone in the household, adult and child alike - your course of action will affect your son’s life as well as yours.

We never really know what we are letting ourselves in for in life. But sometimes we have more information than other times, and you have a fair bit of information right now, and it isn’t all good - not by any means.

Good luck, whatever you decide to do.

Alison

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Hi, if you are worried about the fututre for yourself and your son, maybe persuing this relationship isnt the wisest thing to do, as you are already seeing problems.

Just ride it for a whie, without planning the future with the 3 of you in it…it might develop the way you`d like it to, maybe it wont.

But please ease off a bit…if only for the sake of your son, eh?

luv Pox

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Thank you for your replies. I have tried to discuss his MS directly, but he won’t. In fact, I overheard him tell someone he had MS, that was the first time I’d had official confirmation - obviously I’d guessed, but he’s still never actually said the words to me. We’ve talked round it - he’ll reply if I ask how it makes him feel, for example, or how he wants me to support him, but he absolutely refuses to discuss the progression of it - I don’t even know which type he has.

The diet advice - no idea where he got it from, but that’s interesting Tina - since he’s been single (about a year) he says his diet has been very poor - he rarely eats anything, it’s all processed food, he drinks loads of coke and smokes. He said those were the three things that he was told to avoid, but I’m not sure who told him that. I’d assumed a doctor, but could be wrong. If we did live together in the future there’d be none of that in my house (well, maybe the odd ready meal!) - certainly no smoking - but perhaps it doesn’t make a difference.

He’s definitely stress prone anyway - I suppose I know with my diet that too much caffeine and not a decent diet makes me stressy and fraught, but that’s probably different for him.

Thanks for replying. Your points about anyone getting ill at any time are very good points.

I’ll go away and consider our future in a new way.

I really appreciate your time.

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Hi again.

May I just pick up on something you said ie

therell be none of that in my house` this rings alarm bells for me…doesnt sound like your possible relationship would work terribly well hun.

Hope you dont mind me saying that.

luv Pollx

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Hmmm.

Wasn’t going to say anything, but our Poll’s sensible, so I’ve gotta say, I’ve got reservations too.

He is, in many ways “the love of your life”, as you put it, yet at no time has he confided openly to you he has MS, and you were left to guess, and then overhear him telling someone else?

Of course, it’s possible he didn’t tell you out of fear of losing you - it’s not an easy thing to come out with. But might there be a mismatch between how you see the relationship, and how he does? Is he, like you, thinking of a possible future together? If so, why hasn’t he felt it natural, or even a duty, to lay his cards on the table? Is it that he doesn’t feel you are close enough that he owes you any revelations or explanations about his health? He’s evidently told some people, but you weren’t in the circle he chose to tell. Why not? You say he was “the love of your life”, but was it reciprocal? Might you just be a face from the past who has cropped up again, but not anyone he’s ever thought of as “The One”? I know that doesn’t necessarily mean he couldn’t have his eyes opened to the possibilities, but it’s a bit of a concern if you’re already thinking LTR, whilst he’s not thinking of you as a privileged confidante he wants to share his thoughts and feelings with.

And then there’s why you are pushing the discussion, if he’s obviously reluctant. Isn’t it up to him how much he decides to tell, and when? I do understand your concerns about your future, and that of your little boy. But the one thing that would help you decide is the one thing your friend, or even his consultant, couldn’t tell you: how it’s going to go! So if you cannot learn anything helpful from the discussion, why are you so insistent it must be had, against his wishes? He can’t know his own prognosis; he can’t tell you what you might have to put up with in future. If he talks about MS at all, he can only tell you how he is now, or talk in general terms about things that may OR may not happen in future. He can’t offer you any certainties, because there aren’t any.

As for the whole diet thing, it doesn’t sound as if he’s had that on good medical authority. I don’t suppose a lot of processed foods and fizzy drinks are great for anybody, but there’s no evidence they’re a special NO for people with MS. A healthy diet would have the same benefits it would for anyone, but there’s no evidence it would do anything special for the MS. Smoking, on the other hand, is different. There’s mounting evidence it’s one of the few lifestyle choices that has any effect either on risk of MS, or disease progression. So it’s a change that’s really worth considering. BUT if someone is already struggling with their illness, and suffering a lot of stress, quitting smoking might be better as a long-term goal to aspire to, rather than something they should try immediately. You have to balance any health benefits with the stress of the attempt - which, if someone’s already not coping well, might be an unreasonable burden. Breaking old habits is hard at the best of times, but more so if someone is already having a tough time.

If you see your future together as reforming what he eats, and whether he’s allowed to smoke, I share Poll’s concerns. It would be different if he was actively enlisting your help to change things he’d like to change anyway. But if he’s happy eating ready meals and smoking, a mission to convert him could cause friction.

Tina

x

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Not an easy dilemma . For me I stayed but id been in a relationship 6 years by then. I was 30 when he was diagnosed : 10 years on if I had my chance again I think I may have gone- hindsight is a wonderful thing though…but the reality of living with someone who lives with MS …isn’t always & isnt often good

what I could say now is if I met someone - had some dates & found out … I would leave. I know that sounds harsh … But the MS takes a piece from your man, your relationship & your own life : I wouldn’t share that so readily knowing now what I didn’t know then .

you have to follow your heart - but researching realities may help inform your decision

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My wife has had ms for over twenty years ,she is now, unable to talk or move ,Id give a lot to hear her again, or even understand her ,.My advice would be to follow your heart regardless of anything else, and enjoy what time you have together if thats what you both want, there are worse things than living with someone with ms.Ms is cruel, and fighting it is the only way to win,Im determined to have a better life with my wife and two children than would have been the case , if she had not had ms.

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So it’s been sometime, I hope you sorted everything out… this actually got my wheels turning. Entirely possibly I’m speaking to myself at this point but I’ll spit ball anyways.

i am 29 (now), and had my son at 26, I was diagnosed with MS three months after his birth and divorced about 6 months after that. I am speaking from the other side of this glass but I can tell you from personal experience… if I walked around angry, or irritable, or dismissive of the reality of my situation, or chose to be oblivious to how my behavior affects others, my baby boy would spiral. MS is not easy, it’s not fun and it’s not an excuse. That behavior ^ is toxic to everyone but ESPECIALLY children and it is not acceptable to pollute other people’s space just because you have MS.

I raise my my son alone, I don’t date and his father is not in the picture at all but I am okay with that because I am able to function in a low stress environment that facilitates heal and calm.

Im not saying you shouldn’t date with MS… more so I am saying that it’s no excuse and if an individual wants to function in a “normal” setting, surrounded by people then it’s required to be tolerant and adaptive. I unfortunately can’t be the type of person that stays positive and healthy and productive and efficient if I’ve got someone (relationship) sucking the energy out of me but it goes both ways and having MS is absolutely no excuse to project what you feel onto others.

Children will pickthis up, they do so first and they will remember it longer. None of us wanted MS but to go around in a relationship or any other social setting behaving as if you got the short stick and YOLO and I’m mad but no one gets it so just leave me be” is crap.

Life isnt easy as I’m sure you well know, I’ll be damned if I let someone teach my son he can do the bare minimum and excuse his behavior because “life isn’t fair”. Everyone learns that, you don’t need an neuroinflamatory disease to quality for that tidbit but if you don’t make the decision to actively be better and do better, you’re just being lazy and you shouldn’t be setting examples for other people’s children (him not you).

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