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general advice

Hi everyone!

I’ve been reading the very helpful discussions on the forum for a few months now, and have finally decided to say hello and reach out to the community. My husband was diagnosed with RRMS in mid-April after tingling and numbness in his left side prompted doctors to do an MRI. The diagnosis came as a complete shock, to say the least. My husband is a silent type, so much of my efforts initially went towards trying to get him to speak about it and maybe see a therapist for a few sessions (the latter he has yet to do). He finally started Tecfidera about two months ago, and now that he has started therapy we are both definitely more calm about the whole thing, but some days it feels like the calm before the storm.

I understand that the uncertainty of what MS may bring is, at the beginning especially, a tough thing to overcome mentally. My husband’s approach until now has been very much about taking his meds, seeing his doctor when he needs to, but learning as little about MS as possible. I on the other hand have been reading up about MS symptoms,the medicines offered, Tecfidera side-effects, etc. in order to help make sense of some of the symptoms and things I can see my husband going through. I refer to him the things I read which are relevant for him, and that he is happy to hear about, but still he prefers to not do his own research. He is happy with this balance we have found, but I would like to hear from others who have gone though this initial stage, what they think was useful in this very early stage of post-diagnosis. How important is seeing a therapist, even for the strong silent types, for future mental health down the road? Do you want to be talking about your feelings all the time, or is the best way to really get on with your life, and not think about it?

I know we are all different so people react differently to different things (just as each MS experience is a unique one), but any advice on what was helpful for you in getting through this initial period and ‘moving on’ would be much appreciated.

i also wanted to say what a lovely community of people here on this forum and reading you is always very encouraging.

-O

I was diagnosed in 1999 and at first was very much like your husband - didn’t want to talk about it, didn’t want to do any research or read up about MS beyond what was happening at the time. Some of us are just like that. He is on good medication which hopefully will keep things on an even keel for him and he can carry on as near normal as possible.

What is wrong with that? Why should he see a therapist? What mental health issues down the road? I don’t want to sound unkind as I understand you are doing what you feel is best but if he is coping his own way, why try and change that? If it helps you to learn all about MS that’s fine but I would say not to force it on him. He can find out things if he needs to and may do in the future but for now I would say leave him to deal with it in the way that suits him. Some of us don’t want to make a big thing of it and just keep going.

That storm may never happen.

Wishing you both all the best.

Val

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Thanks Val for your advice. You’re right in everything you write, I’ve just been surrounded by friends and family whose advice to my husband has been encouraging him to speaking about it, and many have suggested speaking to a therapist. Add that to my personality type and this is where I started worrying about it and thinking to ask others who have gone through the same thing for advice. Anyhow, thanks once again for your response.

Wishing you the very best.

He’s a bloke and he is dealing with the situation like a typical bloke, by the sound of things. He is dealing with it in his own way, a way that is different from your way, and that’s OK, honestly it is.

It is a great blessing at a time like this to have an OH who is on your side and giving you love and support, as I well know. He is lucky to have you. And of course I understand that you just want to make everything all right for him and that you get anxious if you think he is not responding to his situation in a way that you see as psychologically healthy. But please have confidence that he will know by instinct what is best for him and how much he can cope with and when. You will make his journey easier by just being there as a calm, loving presence. You will not be neglecting your loving duty by backing off a little and giving him space to deal with things his own way: you will be helping him.

My suggestion would be to let him know that you are right behind him and will help him through in any way you can, but also make it clear that you will take your lead from him on what he needs and will not try to force the pace.

My other suggestion is not to forget that you have a difficult road to travel too and will need emotional support of your own. Your other close family and friends can be a great support here - that’s what they’re for. Don’t bottle it up if bottling it up isn’t your style. Having an outlet for your own hopes and fears and distress at what life has landed on you might help you and also help you to help the man you love. Please look after yourself.

Alison

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I wonder how your husband sees things?

  • were he asked how he thought you had responded/were coping what do you think he would say?

Hello O, ello ello… We blokes only like to talk about the little things… I was in denial for years. The missus read up on it, I took the I’ll get there later approach. … Just be there for him. Sometimes I don’t like to talk as my head’s on the edge of exploding. … (I appreciate this is as helpful as a kick in the face - Alison does it so much better…) Hugs and ice cream, Andy

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Andy, it’s just that you sum up in three pithy lines what I was groping around for in four rambling paragraphs. Also, you say it from the horse’s mouth, so to speak, rather than as an observer trying to decode messages from the other side of the gender divide.

Ah well. I dare say we are representative of something or other!

A

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I personally (even as a woman) would be affronted at the suggestion that seeing a therapist (apart from the physio variety) is necessary to deal with the diagnosis or the potential future mental health problems that I’m probably unlikely to experience as a result of having MS. Cognitive symptoms are generally not the same thing as mental health problems. But I imagine that reading up on symptoms and treatments and offering help as and when required is very useful.

Possibly just as useful is making sure he knows you care and will continue to care and support him regardless of how the MS affects him in years to come. It’s horrible feeling that your body just doesn’t behave in the ways it did before, looking in the mirror and wondering if the visible changes have altered the way ones OH feels about you. The problems with bowels and bladder, sexual inadequacies, physical limitations, weight changes, as well as cognitive difficulties, etc, etc. all have an impact on our own confidence and knowing that the person you share your life with loves you regardless is so important.

I should think there are times when it’s almost easier being the person with MS rather than the partner. I get to discuss or not discuss symptoms, problems, feelings as and when I choose to. My OH doesn’t know whether I want to talk about a particular issue or whether I’m going to bite his head off for mentioning something. But I know that he cares and if I want to talk he’ll do his best to discuss a problem. Obviously he’s still a man and doesn’t talk about feelings quite as easily as women, but he tries!

Sue

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Sue - why are you so obsessed with your husband’s m.s. when he isn’t?

lay off the guy!

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Krakovian, I don’t think you meant Sue, the original poster is OVuk. I have MS, she doesn’t.

Sue

Hi OVuk , It’s great that you’re reading up on ms to help your husband but I think as long as he knows he can get help when he needs to then that’s probably all he needs for now. I read a lot when I was first diagnosed but then you find that everyone’s ms is different so now I just take each day as it comes and deal with problems as they happen rather than worrying about it.

I have however found that the people around me have the bigger problem with my ms than I do.

What I would wish for is someone who is supportive but let me find my own way.

Would talking to a therapist/ councillor help you. It’s very tough on the people who care for someone with ms. ( I have had one husband who openly admitted he didn’t want to look after someone with ms, a friend who left, and a fantastic teenager who has proved to be stronger than my ex’s and a real friend ) there is a careers forum on here, I don’t know what it’s like but I know that the folks on here are always happy to try and help . I know that ms doesn’t just affect the person diagnosed. It impacts on everyone around too.

take care of yourself , your husbands dx is tough on you too

hugs and best wishes

lynn

That should say carers forum. I love auto correct :slight_smile:

Your husband will find his own way of dealing with his MS,all you can do is be there for him and support him when needed,

what helps me is dealing with the problems when they arrive,i always said i wouldnt waste time worrying about what could happen,theres no point,its best to take it one day at a time.

you will also find your own way of dealing with his ms,too.

J x

sorry Sue - got my wires crossed !

there is no schedule. no time frame.

there is no right or wrong way with dealing with the situation.

it might be that strong silent types are appearing to be ignoring the diagnosis, but that would be to presume that their inner dialogue isn’t screaming. being told that you have an incurable, neurologically destructive, disease is a tough thing to fob off!

there is a raft of uncertainty, which can be the cruellest aspect of this disease, even more than how disabling it eventually becomes or already is!

given the idea that a strong, positive, mental attitude is key to dealing and living with MS as well as possible, i would actually promote a mental state of denial.

the human body is a frail thing, with myriad parts to wear down and break. it is no bad thing to presume those MS type things are instead a consequence of a life well lived.

MS as they say, is not a death sentence. there is nothing to say that you will be in a wheely chair or bed ridden this time next week, next year, next decade… you might never suffer another relapse. or you might get hit by a bus tomorrow.

the only thing i think one must work to do, without delay, is to secure an appropriate DMD and to rid yourself of any potentially deleterious life style behaviours. if an MS diagnosis sees a departure from pre-diagnosis behaviour (ie. chain smoking, binge drinking, self destructing, etc) than perhaps a visit to a shrink would be a sound investment.

but for the most part, now is merely a time to clean up your act; live life well; care about the quality of what you eat and drink; indulge in the finest you can afford; destress; sleep and relaxation become priorities; enhance a gratitude for all that you have instead of lamenting that which has been lost; do not let this diagnosis change how you move forward one little bit.

the very best of luck to all of us!

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Hello all. It’s first time I’m in Ms forum, never done any research about my Ms or talk about it, but I feel like talking to other people with similar problem might help. I never did accept the fact Ms will get me like this. But pretend everything is ok and gonna be ok it’s scary, I have now relaps and don’t know what to do. Similar relaps I have 7 years ago, I didnt even know what relaps means. Please help with any advise . I’m scared and starting to realise Ms is my enemy and need to step in. Thank you

Np, don’t think I was clear.

Hi

I saw your thread about MS and you have not researched it for last 7 years, my wife has recently been diagnosed and there is so much technical information it is scary, so much to learn. However you are not alone. This place is full of wonderful helpful people. Can I suggest you start a new threat and list some of your fears and questions and I am sure site users will give you an answer in simple terms, not the medical waffle. I am still trying to figure it all out myself

we are all friends here