Especially for men with MS--a question from a partner

[tyyt218]

Hi everyone,

This is my first post on this forum. I am a woman living with a man with MS. I truly love him and yet am at times scared about the future. We started dating (and almost immediately living together) 2.5 years ago. He told me about the suspicion of having MS immediately, when he realized I was falling in love. He told me in an email before letting me get too close to him. After an afternoon in shock I decided that no matter what, I really wanted to try this relationship. Who knows about the future? I could be hit by a car and live paralized myself. So I started living with him. At the time he wasn't 100% sure about the disease. Maybe he didn't want to find out exactly, and anyway he didn't have health insurance. After a few months we were together I had to choose where to live my future -- had a new job and 2 possible locations for it. Jobwise it was better to go to the worse (geographically speaking) location. Since we had started dating for such a short time, he told me to choose based on my desires only, and he would choose if coming along or not no matter what I chose. One of the many examples of how amazing he is. So I chose the job with the worse location and after a few months when the time was close to having to move, I asked him what he would do. He said he would come along! I was happy and scared at the same time, feeling like I would be somehow responsible for him to move from a very nice place to a worse place, just for me. Plus what if the MS actually was there and it got worse, and I couldn't deal with it? Anyway the feeling of happiness for the prospect of being together was really overwhelming, and we moved. In the new country he had medical insurance. A few months after we moved, he had the first episode since we got together. I pushed him to try to get diagnosed. After a long troublesome period he got it. MS, confirmed by 3 different doctors. The last doctor was so kind. We went together and we both cried.

Since then, ups and downs. Mostly ups so far. One more scary episode only. He never tells me when the episodes come up, and I seem not to be able to get the hints. He tells me after a few days. I can see when he's in pain but most of the times he can keep his amazing sense of humor and he's just as kind and compassionate and a wonderful companion as always. Our relationship in these 2.5 years seems to have only improved to the point that I was considering marriage (I'm in my early thirties and he's just past 35). Still I don't even know if he would feel like it, since he doesn't ask, and there are a few things that scare me.

It's really hard for me to completely grasp what he feels overall. I can guess many things. If I'm scared, he must be even more, or so I think. Being a guy he has a very hard time talking about feelings. If I touch some subjects he completely closes himself up--sex being one of the hardest subjects to touch. He has lost almost all his drive and we had sex about two times in the past year. It was pretty hard for me at teh beginning but I got used to it somehow. We hug a lot and he's very affectionate, just completely not sexually. When we had sex last it was completely surprising and we both were really really happy. I can barely imagine how down he must feel when he thinks about this so I have a really hard time bring up the subject. But overall I would really like to discuss it.
Related to sex, there's the subject of children. We both would like to have them, for example. Will this be the source of lots of stress?

And then my fears for the future, which I know, I should just get over considering, as I said earlier, that no one knows how the future is. But here they are.. since I'm writing the post also to clarify myself to myself. How will we cope with increasing disability? So far he's pretty much as fit as he's always been (i.e. very fit), and athletic. There are some things though that he can do only with pain, like long walks, or cooking for a long time--both activities that he enjoys a lot. What will happen if the pain gets so bad that he can't walk any more, or cook any more? How will he feel, and how will I feel for him? How will I feel if I had to take over completely? So far I'm the one who works most.I really enjoy my job and I find great satisfaction in it. Would I be able to give it up, or give up a lot of it? How would he feel if he saw me doing that? He has said at times that he doesn't want to be a burden, and whenever he said so, I always tried to make him understand that he isn't. I would not want him to feel a burden. He also says, half jokingly, that he's a failure. I really don't like when he says this and most of the time we end up kind of laughing. But still I guess part of him does feel that way.

When I read some of these threads, I'm at the same time scared and hopeful, to see how different people can cope in different and at times amazing ways with such a difficult situation. I would really love if anybody had anything to answer to this rambling post. I'd particularly like to hear from guys living with MS. What would you like for your girlfriend/spouse to do, or say, to help you face subjects like feelings and sexuality? Did you ever feel like a failure, what could your partner do to help you feel that's not true? Did you consider talking to a psicologist? Would you recommend it?

Well any comment really would be appreciated. Thanks in advance.

[Sparkysarah]

Sorry I accidentaly pressed the send button before I had finished.

I also think it would be helpful for you both to talk to an MS nurse who may be able to answer some of your MS specific related questions.

Some of the concerns that you have mentioned are issues that arise for any couple when starting out on their life time journey together, but living with MS does undoubtedly raise additional potential complications.  There are many forum members who have children and grandchildren and I sense the concern that comes to mind for you, is will you cope with bringing up a family if your partner's condition suddenly deteriorated. None of us know what our own prognosis will be but generally life expectancy is not greatly affected (possibly about seven years shorter than someone without the condition) and my neuro said that there is likely to be some deterioration within 20 years from diagnosis..but there are others on the forum who can give more specific information than this.

You have found someone that you love, and many people go through life without ever meeting the right person. Hold onto what you have, talk and communicate with your partner and try and share your concerns openly and honestly (as you have done here) as this will be the foundation for your future together.  I think it would be helpful for you to seek help and if your partner is not willing to go co-counselling then I suggest that you do, to help you clarify your feelings and emotions.

Thank you for your very honest, congruent post, it touched me

With love

Sarah x

[Sparkysarah]

Hi and welcome to our forum which as you already have discovered is full of interesting informed,compassionate folks who understand each other. You sound like you have found your home as I sense a very caring, loving woman who through reaching out to others and baring her soul, has shown the unconditional love she so very obviously feels for her partner.

There are many questions that you have asked for answers to and I can only suggest that you try and find a way to talk to your partner as I beleive that the key to any relationship is trust and honesty. It may help you to find a couples counsellor. Many pepole think that giong for counselling is for those who have a problem which can be fixed but the reality is that the person or couple have taken responsibility and are motivated and committed to wanting to change something in their lives. It can be empowering and incredibly helpful...but this would be something to discuss