It's tuff for both spouses to deal with Dx

Question

I was 29 married, energetic, ambitious, athletic; the world was my oyster. Then MS came into my life. MS to me is like a leaking faucet slowly dripping running up the bill and every time you think it's under control another leak springs. My ex wife couldn't handle my diagnosis saying,"I was no fun any more" We seperated/divorced 4 years after. I was fortunate to find/marry an understanding suportive spouse. She's been with me at the hospital after a seizure from a flare up. That hospital stay was 2 weeks she was there for me during my PT, meals. She gave me my weekly Avonex shot and last June she stayed with me at Johns Hopkins after I went through HYCY treatment (It's a Chemo treatment). I HIGHLY RECOMMEND THE TREATMENT IF YOU CAN GET IT. My subsequent MRI's show NO activity and I feel great having such a loving, supportive, caring person in my corner. Life taught me a lesson,It was painful at first and now I feel blessed in my surroundings.The lesson to me was Don't let those who don't understand and choose not to understand drag you down, stay up for the blessings that WILL come your way..

This discussion is related to Tysabri infusion.

HVAC · Answer

It took my husband a few years to accept the MS. He just wanted me to be strong and make it go away. My Psychiatrist said that was okay let him deal with it in his own way. He was forced to take care of a sick mother his whole life.

He has come around beautifully. He agreed to go to a couple workshop given by the MS Society.

I think there is a case where he would have a right to divorce me but this is just me. If I did not try at all to take the best care of myself I could. I certainly would not want a relationship built only on obligation.

I also think it is important that the world not revolve around me. I talk about his day when he gets home. I do what I can to support him. I do not want a lonely burned out care giver.

 I even have money set aside for him to go to France next year to ride a distance bike ride from Paris to Brest and back to Paris. That money could pay medical bills but I am not touching it.

Alex

PastorDan · Answer

Sorry about your mum, Jemm.

One of the many outfits flooding my inbox this year has been a husband wife team that does marriage seminars; they have a slogan that says marriage is "for better, for worse, for keeps."  Certainly, that is God's intent.  Certainly as well, He forgives, as we should forgive others.

JemmAus · Answer

everyone except my mother is supportive. I'm divorced so a partner doesn't enter into it. I haven't forgiven my mother for her verbal attacks last major relapse I had - she said it was "all psychological" and I should "get off the couch and go for a walk". She has yet to apologise.

The word "hate" is creeping in when I think of her.

Bar her, everyone else is good.  Though only a few have taken the time to read up and learn about it....

twist330 · Answer

On one side my husband (23 years) has been really supportive. But there are days when I think he dosen't believe me. I thnk it would be easier if I was Dx.

I find it very difficult to talk to him (or anyone) about what is happening to me, I don't want to dwell on it or bore other people. I sort of expect DH to read my mind. I am too embrassed to talk about the more personal aspects partly because I don't want to hurt his feelings. So I guess it is very much my problem if he dosen't understand whats happening.

Yet I can write on this forum, this is a god send. Thank you.

poker247 · Answer

I am fortunate.... My family understands and supports my diagnosis. As my wife said to me the other day.... I married you with my eyes wide open and I am in it for the long haul"

Lulu54 · Answer

Hi starryeyes,
I would recommend you start your question as a new thrread.... most people won't come back and look at these older posts.

I'll look for your question again and answer there.

Lulu

starryeyes1 · Answer

I found this thread and this is something that concerns me. Just wondering if anyone else has had good or bad experiences with significant others or family members.

ErinZoe23 · Answer

IDK what to vote here.... I had him move out last week but we are working on it... he dont know anything about MS unless i tell him... It kind of pissed me off when i asked him have you ever googled or looked up what MS is in the past 6 months? and he didnt even care to see what i have or am living through  so idk we shall see the more he dont want to understand or care tho  the farther ill keep pushing him away i know that

raekay35 · Answer

I can definately relate, as I am currently going through this right now.  I still am in limboland, but have been told "probable MS"  I'm pretty much at my witts end, I'm tired of being told that I'm faking and I just want attention.  We've been together for 15 yrs and married for 11 1/2 years.  Just makes this whole process alot more unbearable.  I just keep telling myself, it's about me now, no one else, and that I need to be strong and do what I can to stay positive and strong in order to raise my 11 yr old son.  Long hard cold road ahead, but I will not let him get me down.  I can go to all my appt's by myself, as I have to other remotely close to me (I live in CA and my family is in FL)  and deal with whatever the doc has to say by myself!!!

Great attitude and glad you found a good person to support and understand you, don't know what that would be like.  

Raekay35
Limbolander

Nancy_LA_MA · Answer

You are indeed blessed to have your current wife.  

Question about the chemo treatment:  
Was there hair loss?  

Been there done that following a modified radical mastectomy.  It's devastating enough to go through the surgery but the hair loss was a reeeeeeal downer.  I've never gotten over it - it didn't all grow back, not as thick, I can see through it in the front.  

I've read online about someone's experience with the chemo treatment - and it sounded very involved and long, drawn out.  I'm not sure I could handle it.

Karen99 · Answer

Yes, I lost a relationship after being diagnosed.  No great loss except in the financial area.  I chose to leave him.  My now significant other does not fully understand MS, but he understands me when I have my ups and downs.  

My grown daughters understand for the most part and are supportive.  My siblings have had mixed reactions that vary greatly.  Perplexing.  

What I know for sure is that I am were I am supposed to be at this point in my life.  

What does HYCY stand for?