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What is our life going to be like?

Hi everyone I am looking for some insight on what it’s like to live with someone with MS. As of recently my girlfriend has been diagnosed and is starting to show the symptoms, her two fingers have started going numb, on and off. She has had one stemcell treatment or hormones already (not sure exactly) and her symptoms have subsided. Whilst Iam not a person with multiple schlerosis, she is, and it has absolutely devastated me. I love her so much and want to marry her, but you can’t blame me for thinking twice about our relationship because this will affect our future marriage, way of life and our children. Not to mention I won’t be able to afford her treatments. My family has found out due to someone I told not keeping a secret, and unfortunately, they have all advised me to run for the hills before it’s too late :frowning: If I was to marry her, what should I expect from MS? What are your stories as partners? We are in our twenties. I have not told her my thoughts because it will devistate her, and I try my absolute best to make her feel good about herself, and shine the spotlight away from her MS, I don’t want her to feel like a lepper. Iam holding on to the thought that life is full of surprises good and bad no matter who you are with.

Well, if you have these doubts, then perhaps you shouldnt let her think you`ll always been around.

No-one can give a prognosis of how her MS will go…not even a top specialist…it`s a guessing game.

I think you must be in a country other than the UK, as we dont pay for treatment here.

pollsx

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Yes, are you based in the US? There’s the National MS Society in the US.

http://www.nationalmssociety.org/Get-Involved/Join-the-Community

Hiya - it’s like Polls says there’s no way of knowing how your girlfriend’s MS will go.

But if you’re already having doubts at such an early stage of her diagnosis there’s no way you deeply love her.

Can you see yourself agreeing to “love and honour her in sickness and in health” which you’ll need to if you marry her?

I’m sure she’ll be devastated if you walk away but better do that sooner than later!

Sue

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Without 20/20 foresight or hindight it is very tough to make a judgement call. There is no right or wrong (in general terms) it all depends upon your relationships and commitments. You need to be completely honest with yourself and then your girlfriend.

All the best Mick

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To be honest, I’m kind of glad I’m not your girlfriend. It really doesn’t sound like you are planning in being there for the long haul. You’ve got doubts about her health, doubts about having children, doubts about the finances.

It doesn’t sound like there’s really a whole lots of ‘I love her and want to marry her regardless of what life throws at us!’

No one ever knows what is waiting around the corner. If your girl has had one stem cell treatment already (HSCT?) it’s entirely possible that she’ll be fit and healthy for many years to come. But there are no guarantees. That’s what life is like with MS. We do not know. Nobody will ever know what is round the corner for them with a diagnosis of MS.

But then that’s true of life in general.

Think about it from another perspective. Supposing you and your girlfriend are both fit and healthy, MS is not part of your life. You marry, have a couple of children, then you develop ALS or Parkinson’s by the age of 45. What is she to do? Say ‘oh I didn’t sign up for this!’, ‘Disability wasn’t supposed to be part of our life!’ ‘How are we to pay the bills now?’

Then ask yourself the question, how much do you love her and want to be her husband, her support, her family? Come what may? (And btw, your family are advising you to ‘run for the hills’! How nice!)

Sue

Oh and what the hell were you asking us for? In general, we either have MS or are partners or family of someone with MS. Did you really expect any of us to say, ‘oh no it’s horrible living with an incurable neurological disease, I suggest you get out while you can!’

[quote=“Ssssue”]

To be honest, I’m kind of glad I’m not your girlfriend. It really doesn’t sound like you are planning in being there for the long haul. You’ve got doubts about her health, doubts about having children, doubts about the finances.

It doesn’t sound like there’s really a whole lots of ‘I love her and want to marry her regardless of what life throws at us!’

No one ever knows what is waiting around the corner. If your girl has had one stem cell treatment already (HSCT?) it’s entirely possible that she’ll be fit and healthy for many years to come. But there are no guarantees. That’s what life is like with MS. We do not know. Nobody will ever know what is round the corner for them with a diagnosis of MS.

But then that’s true of life in general.

Think about it from another perspective. Supposing you and your girlfriend are both fit and healthy, MS is not part of your life. You marry, have a couple of children, then you develop ALS or Parkinson’s by the age of 45. What is she to do? Say ‘oh I didn’t sign up for this!’, ‘Disability wasn’t supposed to be part of our life!’ ‘How are we to pay the bills now?’

Then ask yourself the question, how much do you love her and want to be her husband, her support, her family? Come what may? (And btw, your family are advising you to ‘run for the hills’! How nice!)

Sue

Oh and what the hell were you asking us for? In general, we either have MS or are partners or family of someone with MS. Did you really expect any of us to say, ‘oh no it’s horrible living with an incurable neurological disease, I suggest you get out while you can!’

[/quote] Look. I understand my question can be touchy, but you have no right to ridicule me about what Iam feeling. Before you fire away, did you ask me once IF I want to be with her?. I do, Iam preparing myself that MS will be apart of our lives, I havent gone anywhere. Secondly, eastern European family thoughts are brutal, there is no wishy washy “be nice” . We have a different upbringing. How much “love” there is non of anyones concerns sorry to say, I asked for advice not ridicule on my feelings for her. doubt is always there’s we are all human. Lastly, I have thought that even healthy couples can become diagnosed later in life.

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Guess you feel like you`ve had a flea in your ear…a telling off…we can be a bit defensive here.

We know how difficult life can be with a chronic incurable condition. But we dont shout it from the rooftops.

I have a friend in USA and she has gone without important drugs, when money has been tight.

Our NHS may be in dire straits, but we dont have the worry of not being able to pay for necessary medicines.

Life is never 100% great, whoever you are and wherever you live…and whoever you choose to bunk up with!

pollsx

Hi, you have asked what life may be like due to your girlfriends ms,well here are two examples of how it could go or not.

I have ppms and mostly enjoy life. Life for me is at a slower pace and I do not have the energy to do all of the things I did before ms. This is the new me and in many ways a better me.

The second example is regarding a relative of mine who also has ppms. He lives in a care home,needs 24 your care, he can not walk and needs help to feed himself. Despite all of this he is happy, kind and caring to others.

Your girlfriends ms may not turn out like either of the above, who knows.

With regards to your parents suggesting you run for the hills, I think they are right in that all three of you should set up home in a bubble away from civilisation where you never have to meet another living soul who could be less than perfect in your eyes.

I`ll be surprised if we hear from Renvate again!

pollsx

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hiya

from a different point of view…

i was in a relationship for 4 years. (he knew all about the ms) i was happy for the whole 4 years, he however was living a lie because he wanted out after a year but didnt/couldnt tell me cos i had ms! to me thats a waste of 3 years for him and a very weak man. in hindsight yes i would have been hurt-as in a normal breakdown of a relationship but at least that would have been honest.

many on here are very lucky to be in long term successful relationships-i have no idea what that must be like! but i do know that honesty with yourself and then those you love is the only way to live with this crap on a daily basis!

i am very lucky to have a family and friends that dont hold back-not with advice but with honesty and it does make life easier emotionally for me to cope with and we all where we stand-oh-ok i sit!

ellie

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Iam trying to post, but the forum needs to “approv” Sorry, I may have sounded harsh but It Is what it is.

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hi again

holding on to that thought and actually doing it may be completely different.

i for one applaud you airing your dilema-you have upset some here but i bet you they are not new thoughts to those who car for someone. age experience and life comes in to it all!

there is no right and wrong standard answer-communicate honestly and you will both be fine eventually!

ellie

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I apologize , I didn’t mean to offend anyone.

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i guess hes desperate to reply but waiting on posts being cleared…

Do you live together now? If not maybe its time to try that. I have been diagnosed ppms two years ago. From no symptoms, nothing!, to now having almost no mobility and using a wheelchair outside. My moods swing from being positive and upbeat to being bitter and very miserable. I get upset when my husband has to put my socks on, when ii can’t manage it. I get frightened when I wonder where we are heading, as my disability progresses. We’ve been together 30 years and have sailed the very stormy seas of life…death of parents in tragic circumstances, redundancy, mental health issues, cot death of our grandchild, failure of a new business, house moves along the way and moving to another country. I asked him the other night, having been particularly down and tearful, why is he still with me? Was it out of loyalty, because he “couldn’t leave me now”, now that I have this disability? He simply said " because I still love you".

It’s a big commitment and not to be taken lightly. How long have you been in love? You’re both very young and a full on committed relationship is a big ask at the best of times, at that age. Have you “lived” a little? Travelled? Lived away from home in your own for a time? Would you find yourself becoming resentful for the things you never did and wouldn’t be able to in the future, if you were to become your girlfriends carer.

Lots of questions to ask yourself. If in doubt, don’t. Sometimes life has a strange way of working things out for us as the decisions are made FOR us, rather than BY us.

Good luck to both of you.

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Talk it through honestly with your girlfriend.

You have to see it like this - you either are or aren’t a team.

I was diagnosed with MS just over 3 years ago. My long-term partner just said “we’re a team”.

He’s just been diagnosed with Parkinson’s - it makes no difference to how I feel - “we’re a team”.

You have no idea what life has in store for you - and that’s probably just as well.

But there are also no guarantees for either of you - you may both be fine, you may both not. But are you a team? And that is something only you and your girlfriend can decide. And if you’re not, she’s better knowing now.

As for your family - it’s not up to them, it’s up to you.

Btw, the MS Society forum a team, we might not always like each other or agree with each other’s points of view, but we are in it together for the long haul.

And Ellie is right, there is no right or wrong answer, but do make sure you both know what the answer is - you never know, maybe your girlfriend is having similar thoughts, but doesn’t want to air them to you!

Jo x

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I have a friend, her parents have been together for about 45 or more years. They are devoted to each other, they equally love their daughter, they’ve been a really healthy, happy family of three for years (my friend is now aged 41). About 18 months ago, Mrs was diagnosed with bowel cancer. She has had chemo, all kinds of drugs, surgery to remove a large part of her intestines, and has lived for a year with an ileostomy. Mr has been desperately worried about her time after time throughout this period. She’s lost all her hair (which was very important to her), she’s lost tons of weight (and she was a tiny little person anyway), she’s just had more surgery to reverse the ileostomy and throughout it, Mr has remained devoted to her. He’s had to do so much personal care, no one would ever have been expected to do such deeply personal things for each other. (An ileostomy is much higher up than a colostomy, therefore the ‘product’ is very very loose and can be a lot messier as a result!)

She has now been given the all clear from the cancer, she still faces an uphill struggle after an infection in hospital following the reversal op.

No one would have ever expected that they would have had to face such a dreadful, difficult time. But at no point throughout this, have either Mr or Mrs felt that they had a choice but to work together, care for each other, help each other get through the most difficult, personally challenging time anyone could ever expect to.

Hopefully, Mrs will recover as well as possible. There are likely to be lasting effects from the surgery, the chemo, the cancer, everything else. But they have been strong for each other, they have loved each other throughout and cared for each other throughout.

This is a completely different thing from deciding at the outset that to live with a neurological disease like MS is more than you want to do. But it is an example of what life can choose to throw at people. If a couple truly love each other, they can defeat all kinds of obstacles.

I am lucky. I have a husband who loves me for who I am, not for what I can do. And he cares for me in small subtle ways as well as the big ways. He strokes my hair or rubs my shoulder as he moves past me. He cuts my bread for a sandwich before he goes out to watch the cricket. He checks that I’m OK. It’s not always the big grandiose gestures that show you when a person loves you, it’s sometimes in the small ways.

I hope you do find the right solution for your future Renvate. My initial response may have been a bit of a knee jerk reaction. But in many ways, I feel that you may have already made your decision.

Sue

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Some very nice answers, thank you poppy and joh

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I think we may have changed his opinion of us now.

Yes, we may have had knee jerk reactions…cos we`re so very defensive of our little gang…and if anyone makes the slightest moan about us and our monsters, we can be up in arms.

Anyway, Revine, were not that bad really, when you get to know us. We can be really madcap at times...the Brian Fog saga proves that, if youve got a couple of hours to spare!

Sorry if we hurt you in any way…I hate to upset anyone really.

pollsx