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.

[tyyt218]

Hi Bob,

Thanks a lot for such an honest reply. Yes, sex is an important part of life and I really appreciate you talking about it. What you said is exactly why I fear, at times, taking the lead, making hints and so on. I don't want him to feel pressured if he really doesn't feel like it. And I don't want him to be 'afraid' that every time I hug him I may want something more and he then stops hugging me (it tended to happen at the beginning). Even totally innocent cuddling is anyway so important that I would not want to give that up.

Anyway I totally agree we need to figure this out a bit better so that it doesn't ever become a barrier between us and source of too much frustration for me. I liked your reminder about brain being the biggest sexual organ. I'll think about it.

Take care and good luck for you and your partner.

[SarahL2491]

Welcome to the forum

You will find many helpful people here......its a great place to visit, vent, ask questions and even bawl occasionally...........

Sarah

[jujuminx]

This is an interesting thread, thanks for posting it.

Funny I asked my husband this weekend if he knew before he married me that I had MS, would that have changed anything (ie, would he thought of not marrying or not having children).  He said it wouldn't have changed a thing, but he is an eternal optimist. Honestly though it might have changed MY mind. I say that b/c I wouldn't have wanted to be a burden to him and I probably would have thought the worst about my future. Now almost 20 yrs later and having lived a very normal life and having two healthy children and a rock solid marriage, I am so very happy that I didn't have the opportunity to make choices based on my worst fears.

MS effects everyone differently and there is no way to predict how or how quickly it will progress.  Lots of people live with chronic illnesses but not all of those illnesses are known to be progressive ones. That being said though there are medicines now for MS that didn't exist just a few years ago and our outlook is better than it's ever been.

Because MS is so personal, it's hard to tell simply by looking at an individual just how much they are in pain physically, how crappy or tired they feel.  The central nervous system is complicated and effects so much of your body and mood. Not to mention just the stress of worrying about how it is effecting your body long term.

As a female with MS I cannot really answer your question about sex, but as a female with a disease that is the same as your sigificant other, I can say that when I had my "relapse" (I can say that now, I didn't know what it was at the time b/c I wasn't dx) sex was the last thing that I wanted.  I am sure with a male, b/c his private parts are critical to your sexual pleasure, there is added pressure for him to feel up to the task so to speak.  If he is worried about it or isn't feeling well, I can see how he would tend to just not go there on a regular basis.

Yes, there is a part of me that does feel like I am a failure, or at least I am defective in some way.  But life is life, things happen and you just have to roll with it. MS isn't something that I could have controlled getting. I find when I am hard on myself, turning it around and thinking if my children were dx with a disease would I blame them? Of course not, but it helps me put it into perspective.  As a male, this has to be even more of a ego killer. He is in his thirties, most men at his age still feel invincible.

As far as children go, your question is, are they are a source of stress? Well, yeah, of course they are but they are also a source of great joy and a sense of purpose.  Really the choice to have or not to have them would be one that you and he would need to make together.

Do you know what kind of MS he has?  Is he taking any medication?  What kind of symptoms does he normally have?  Does he have his extended family's support?

I would recommend talking w a counselor or some sort of professional. At this point in your relationship he should start trusting you enough to tell you when he is hurting and needs some extra tlc. It sounds like he is a great guy that would be even greater if he can get out of his own way and let you in more. This is what a professional can help you with.

Good luck to you and him.  

Blessings, Julie

[addicted2harleys]

Hello, tyyt-

Welcome to our forum.  I think it is wonderful that you have stuck through your partners medical problems and diagnosis of MS.  I don't think many people would have done the same as you in such a short time of having a relationship.  I know my boyfriend didn't.  My health issues scared him off.  

I have been single since and have not tried to engage in another relationship.  I do not, personally, want to tie anyone down with me as a burden.  Does that make sense?   I would feel to guilty.  But this is just my feelings and I am ok with being single at this time.  I am 42 years old.  

Part of the reason I feel the way I do is because I have lost my sex drive.  And I know my body would betray me and would be too physically draining if I were to attempt to be sexually active.  This is the complete opposite of who i was before.  

I am really glad that Bob responded to your post.  I was hoping he would.  And I am glad that he went into detail, a frank discussion.  He is absolutely right that sex is a part of life ( except in mine unfortunately!! lol) and it does affect MS people and their partners.

On another note, tyyt, does your boyfriend take any medications for his symptoms?  And is he on a Disease Modifying Drug (DMD)?

I have to agree with Sarah regarding counseling to aid in helping out with your communication problem or, at least trying to sit down and try discussing these issues with your boyfriend.  Communication, in my opinion, is necessary for a relationship to work...that and trust.

Again, welcome to our forum.  Maybe your boyfriend may want to visit here with us, too...

Addi

[COBOB]

My partner and I met about 5 years ago before I was having many symptoms of MS. So he has been with me through the first major issues and diagnosis.  Children are not an issue for us and given the current climate in the US, neither is marriage.  

For men with MS, the physicality of sex can be difficult.  Leg cramps and spasticity can really put a damper on the moment.  Baclofen helps with the spasticity.  Other changes in sensation and failure of the nervous system can lead to impotence.  Most neurologists are more than willing to provide Viagra or a similar drug.

I'm not sure about all men, but in my case, sex is pretty far in the back of my head when I'm not feeling well.  When I'm on IVSM and feeling good (for that week or so after,) it is right up there in the front of my mind.  

The brain is the most important sexual organ.  A favorite meal, candles, etc. can set the mood.  You may have to take the lead.  You may have to take the more physical role.  You have to communicate (talk, non-verbal physical queues, etc.)  

Hope the frank discussion doesn't put anyone off, but sex is part of life.  If you can't figure this out, see a professional.  It is important for your health as a couple.  Yes, MS cam effect a male's  sexual response.  There are also things you can do about it.  I hope some of this helps.

Bob

[tyyt218]

Hi Sarah,

Thank you so much for your answer, it made me think. "You have found your home" -- I think it's true, and it is indeed the most wonderful thing that can happen in someone's life. You're right.

I am seeing a counsellor, more or less, who is helping me a lot. It kind of fell on me and I'm glad I accepted. At some point I suggested talking to a counsellor, but I can't remember if I was proposing just specifically a sexuologist or not. He said no at the time but it may be worth talking about it again.

Talking can be so hard when you are afraid of hurting someone! But I guess it's true, there's no reason for why opening one's soul should be negative. And it may help dissipate fears.

Take care and I'll be around reading more.