Considering Marrying MS'er

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Considering Marrying MS'er

Postby XLT_66 » Thu Jan 06, 2011 2:58 pm

I know, I know...MS'er you say? Wasn't sure what to put in a title like that.

Long story short. She's the love of my life. Plain and simple. Been best friends since about 12. I'm 25 and she's 23 now. We went to different colleges, stayed in touch. She's still in school to be a nurse and has decided that enough is enough, it's time we get this relationship moving. She's moving to the city I live in to start a life together and finish school with me.

She was diagnosed when she was 18. Had fatigue and very mild vision abnormalities. Doctors caught on very quickly. In the 5 years she's been diagnosed and on treatment, the only time she ever shows signs of anything is when she decides she doesn't want to take her medicine anymore. Pretty much immediately she'll start to show signs like before...fatigue and vision issues. Why she does this, I don't know. But I understand it. Otherwise, she's extremely healthy, active, perfect woman.

I've been reading articles, forums, etc for a long time. Years even. But I've never posted anything. What I've had the most trouble finding is really people's "time line" of this disease. Personal accounts of how, over the years, in an actual time line, when in their lives MS has changed their lives and abilities.

I know MS is terribly unpredictable. So one person's timeline does not mean anything when it comes to another. I guess, my real question is...What can I really expect out of a marriage with her?

I am comfortable with the fact that she has MS. I feel that I'll be able to handle the trials and protests her body throws at her and support her through it. But when could these things happen? Next year? Never?

By all accounts, she lives a TOTALLY and COMPLETELY active, normal life. Hiking, Mountain Biking, Camping, Concerts, College, etc. With the past 5 years being virtually problem free (except when she's stubborn) is there any way to predict how the rest will follow? Is having kids an okay idea? I'd love to have kids but I've read that post-birth that MS can really kick in badly.

Since this medicine has been working so well for her (I don't remember which one specifically, shots in a new part of the body every 3rd day) could one assume that she responds well to treatment and may live a happy and full and active life? Or it's just luck of the draw and one day you have a limp?

Anything you can say to help would be great. Is it literally she could be in a wheelchair tomorrow? Debilitating pain tomorrow?

Hard to imagine.

Much Love.
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Postby Stabilo » Thu Jan 06, 2011 4:28 pm

hey XLT,

By the sounds of your post title, it seems to me you are unsure if you are willing to "take on the burden" so to speak of marrying someone with MS, until you can have some set in stone answers.....I hope I'm wrong.

The fact of the matter is like you mentioned, MS is completely unpredictable, no two "MSer's" are exactly alike. Some go on to live a productive, happy life, some end up in a wheelchair, or using a walker. There is no way to predict the future for anyone with MS. It's a progressive disease, which means it will take it's toll over time.

An example for me personally, was that In September I got a bad headache, I took some tylenol and went to bed. I woke the next morning around 3am to go to the bathroom, when I stood up I immediately fell backwards onto the bed because terrible vertigo had overtaken me. I couldn't look anywhere except at the floor without vomiting, let alone walk. I was bedridden for over a week, after that the left side of my face and head went numb including in my mouth. This all came without warning. After a large dose of steroids I noticed it clearing up after about 6 weeks. Today I feel pretty good despite some minor fatigue. I'm lucky that I recovered 100%, some don't.

If I've learned anything since my diagnosis it's that you shouldn't spend too much time worrying about the future. Live for the moment, and take nothing for granted. Just love her and support her through the journey we call life. Good luck :)
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." ~ Eleanor Roosevelt
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Postby Lydia_S » Fri Jan 07, 2011 3:57 am

I will agree with Stabilo. You should already have known that unfortunately there aren't any guarantees. I know that is terrible to hear and to bear. You should know that you might face problems along the way. I believe it's important you try to be informed as much as you can about this disease since it's something that both of you, in a different way of course, will have to deal with. I can understand what you are going through since I am dealing with the same situation. Don't feel bad, you are both very young, so I can understand that you might ignore some things and that you are scared. The final decision is up to you.
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Postby Algis » Fri Jan 07, 2011 5:58 am

She's the love of my life. Plain and simple.

What else do you need?

She is willing to come with you and start a life. You love her... Rest is logistic (dixit my wife of 15 years and 12 years' MS. We still love each others like collegians; have a great daughter and lot's'o fun each day...)

But it is you that can decide only :) Best of luck!!!
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Postby Loriyas » Fri Jan 07, 2011 10:19 am

You stated that she is the love of your life. So that should be the answer to your question. There are no guarantees in life. You just live your life and deal with whatever comes your way. And if you have someone in your life whom you love as much as you say you do and if she loves you the same then you can't get any luckier than that.

If you knew the answer to your question as to what the course of her disease will take, would that change your mind on wanting to marry her? If not, then you should plan on being with her forever. However, if your answer would be that knowing the course of her disease would make you hesitate in marrying her then you have some deep thinking to do. Marriage requires complete comittment and if you can't give that then you actually have your answer.

Life, and marriage, are full of ups and downs. You never know what is going to happen tomorrow. But there is nothing like having someone you love to share your life with.

So if she is the love of your life there should be no question.

Good luck with your decision.
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Postby hwebb » Fri Jan 07, 2011 7:02 pm

there are no guarantees in life, and none of us know what it around the corner - whether you have a diagnosis or not.
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Postby Wonderfulworld » Tue Jan 11, 2011 2:14 am

By all accounts, she lives a TOTALLY and COMPLETELY active, normal life.

I suppose to answer your own question you have to ask yourself if you will stay around, and not be angry, resentful or feel cheated if she gets to a point where she doesn't lead a totally and completely active normal life, Iykwim? That's what marriage is about. What if YOU are the one who becomes ill for whatever reason? That's the gamble when you marry someone, and if you love them enough, it's not that there won't be issues, but that you love them more than the issue.

It is easy to be ok about a possible future issue if there is no sign of it now. I don't know what kind of reassurance you are asking for............good luck with your decision by the way.
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Tecfidera, Cymbalta, Baclofen.
EPO, Fish Oils, Vitamin D3 2000 IU, Magnesium, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle, Melatonin.
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Postby jtjdmj » Tue Jan 11, 2011 11:12 pm

Well the ol vows say "for better or worse, sickness n health" and all that, so you have a bit of a heads up that you guys may well be tested.
My wife of now 12 yrs was diagnosed the very day my now ex decided she wanted to eject from a 16 yr marriage for greener pastures.
We sorta considered it fate that we found each other during a period of great personal challenges. This new love interest initially had some phys issues but they didn't "terrify" me or anything and they were modest issues in the beginning...needed to hold my hand to walk reliably/safely actually she had some chemo and was losing a bit o hair for awhile... didn't really freak me - that's just was the way it was physically at the time.

We had several relatively uneventful years but here we are 13 yrs or so after meeting and she's pretty much electric wheelchair/bed dependent.
Has it altered my love more or less? No it's sort of a NON event with regard to "us" , the love, the essence of our feelings. Does it limit us? oh heck yes but we adapt and don't particularly miss stuff that other people might.
Candidly , I wasn't about to do Everest anyway so no great loss... would I like to hit Florida more well We can/could and she'd be happy to have me go to the ocean during the sun hrs as heat just wipes her out.

Our hobbies have turned into target shooting at indoor ranges, she loves shooting and she loves to read and she worked for many of the last 13 till fatigue just made her unable to get thru the day. Hello disability. Fortunately altho I love to veg out with her, I can and still do work F/T but I don't travel as her needs pretty much require me here daily.

So.... scare ya? I could get more graphic about some of special needs but here's the deal - if you are BEST FRIENDS , not just lusty lovers then anything "outsiders" might see as some big "sacrifice" just isn't because it just is what ya'll had to to deal with... believe me every relationship has it's crap and if you guys are committted to the committment so to speak you won't really ever regret it, you are just living life with your pal.

Frankly, I commend u for THINKING and contemplating the foo-ture. Half of the western world goes off n gets married then it all blows to hell... cheating or mean-ness or whatever...they blow their vows and most do it with their health intact. One of my favorite 70's self help authors Jess Lair wrote a book called "i ain't much baby but I'm all I got" cute title and the book had a nice 70's ideal that the greatest thing you can do for another is to " tell them how it is with you, in your deepest heart" sorta trust someone with ur deepest fears and wear that heart on your sleeve in an act of faith. If u do maybe that person will reciprocate. So by-fud I recommend you trust her with any/all worries and ya'll discuss it and see how you feel about what may / may NEVER hit the fan...

Ps go rent Costner's "for love of the game" there's a scene when they talk on the phone about "what if's"... like
would u still love me IF:
I went blind?
uh yeah
I lost an arm?
Both arms?
Both arms and legs?
Both arms and legs and was horribly burned and disfigured AND couldn't speak
...... oh Hell No

Paraphrased but incredibly funny...

anyway... kudo's for sharing ur concerns... Hopefully ol Jess Lair would be proud of us both or us for for having the balls to share our feelings.

Doug J spousal unit of JAIME... I just stole her acct when she read me ur post... hope it helps ya'll whatever you two decide
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XLT_66 reply from an MSer

Postby jtjdmj » Wed Jan 12, 2011 11:39 am

you got hubbys reply, so here is mine, it won't be an issue, if what you said is true then just go with your feeling, someone can and will live as long with MS as without MS, I can't tell ya what life will hold for her MS as every case is different. From my 13+ years with MS experience make her do whatever shots/pills she's supposed to cause I think with hindsight that's all I ever did wrong is since the shots weren't ever making anything "truly" better I would get tired of my shots sometimes and so therefore stupidly missed some, knowing what I know now, the won't let you get any other symptoms part would have been worth the little inconveninces to my life, but in hindsight, I wish...
Yes, from all I've read you can still have kids in fact some definate plusses to the pre-kid stuff from what I'd read. Can't tell ya a firsthand view as I never wanted to have kids (and actually I got the best of both worlds, step daughters and a GRANDBABY due to hubbies first marriage.)
As for pain, I don't think there will be anything that can't be handled as long as she finds a Dr. she likes and is honest with them AND you. Trust me, I'm a WIMP!
Sorry for any typos I may have, but I'm using an iPAD and not a computer with a keypad.
GOOD LUCK! Though I doubt you'll need it.
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Postby XLT_66 » Fri Jan 14, 2011 1:47 pm

Thanks for your replies everyone. Some very good advice.

Lots of big things happening in the near future. Wish us luck. I feel like life is finally starting.
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