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

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]

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

[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

[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.

[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

[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

[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

[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

[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.

[tyyt218]

Hi Addi,

Thanks a lot for replying! I do really like this forum.

My boyfriend was exactly thinking what you are saying before I fell upon him. His ex had broken up with him a year before, possibly partly because of the first symptoms showing up. He was alone for a year, not wanting to be a burden for anyone. I guess I was convincing enough for him to let me try to be with him. I suppose it's a bet for both of us. Will be able to keep becoming a stronger couple? Overall it's something every couple has to work on.

I was just considering today, this is just a different life journey than what I had planned on when I was 14 or so. But I had other occasions to see that life is so totally unpredictable anyway. This is an exciting journey that challenges me to improve myself in ways I hadn't considered before. One thing he told me some time ago was that I always want to solve problems. When one has a chronic disease he/she knows that for some things there are no solutions. One just needs to learn to live with unsolved problems, things not necessarily improving. A hard lesson but a good one, if paired with a healthy desire of trying to solve what we can indeed solve. I feel like I have many more things to learn from this journey with him. This is why I really would not want him to feel like a burden. But again, another thing to learn is listen to what the other person tells me he feels...

As for the sex part... It must be very hard to see your body change so much. The lack of sex drive was one of the things he told me at the very beginning to make me understand the issues. I'm guessing part of me didn't completely want to believe that and thought it was also related to poor sexual partners earlier (you see, my foolish ego!). What can I say? It is a problem, as discussed earlier. And I would not have thought I could have stayed without sex for so long without feeling really miserable. But hey, it so happened that even though I would obviously really like to have sex, my body has kindly adapted to its lack for now. So I do want to try to find some better solutions, as Bob was suggesting, but I also feel like it is not worth losing the person I love because of this. Maybe it's a woman's thing.. maybe it would be harder to find a male partner with this mind attitude.

Anyway again thanks a lot for your answer, and best wishes for everything.

[tyyt218]

Hi Julie,

Thanks a lot for your reply! It's really great to hear that you have a wonderufl husband, a rock solid marriage, two healthy kids and lived a normal life.

It's true, one of the things about MS is that it's very hard to predict its course. I'm guessing a weird part of me is thinking that forcing my boyfriend to talk about it will make him feel worse. Anyway, this is just a side note...

Well I replied to the others as for the sex part, but I forgot to reply to the questions about MS.

Actually I'm not sure the doctors have determined one type or another. He went to several doctors who gave him very different advices. Two of them said that basically there are no really good drugs for MS and that most of them just decrease the chance of having relapses but this chance decrease is not really that sure and the side effects can be pretty bad, so they recommended to him not to start on them unless he really felt a need. The third who was a specialist from a University-related clinic told him that he would be a fantastic case study since he hasn't ever taken drugs so he could experiment the new treatments. Not wanting to be a guinea-pig, my boyfriend declined, since for now he is still okay most of the time. So actually right now he's not taking any drugs at all. He just read that some studies found that high doses of Vitamin D can help and so he decided to try this. He says it seems to help him feel less 'jittery'.

He hasn't disclosed his condition to many people including pretty much all of his immediate and extended family. I respect his decision, I can see pros and cons of letting people know. Did you let others know very soon after your dx?

Anyway yes, we're a bit isolated in this. I'm guessing that's why I'm looking for help on this forum... And that's why as everyone suggested some professional help could be good for both.

Thanks again and blessings to you as well.

[jujuminx]

It is very common for people with MS to be deficient in vitamin D. They don't know why or if it's a contributing factor in it's development. My neuro tested my vit D the day he dx me to see if I was deficient and I was.  He put me on high doses of D until it was normal then it was reduced.

As far as there being no real good drugs for MS, that's just false.  While there is no cure, there are drugs that slow the progression in a certain percentage of patients. Taking a drug that lengthens the time between relapses and may make them milder, is one I will take anyday in my fight against this disease.  I am going to fight this battle and use every weapon I have to keep my physical abilities for as long as I can. One relapse can PERMANENTLY take away any one of a number of my physical abilities, which I am very partial to. And as far as side effects from the drug, a mild skin reaction every few weeks is nothing.  Really, I would strongly encourage him to revisit his decision not to take any drugs if his decision was based on what you outlined.

As far as letting people know, I let a handful of friends know at first, then my extended family a few weeks after. It was like a weight was lifted off my shoulders. Keeping secrets takes a lot of energy.  It was strange as first b/c it really makes you face reality. There is no avoiding it when you are constantly talking about it and explaining to family what exactly it is and what it means. But then once the people you want to know, know, you stop talking about it so much and life starts to go back to a new kind of normal.

After a while it becomes a non issue.  People forget!  Sometimes I have to remind them that I need to take it easy (mostly preventative) or cannot commit to a extended summer activity. It has actually become sort of a joke among some of my closest friends (in a good way) when I decline due to my MS, they say, "Oh, not that excuse again, you gotta get a new one!"

I guess my point here is talking is good, even if you are the only one doing it.  MS  and it's effects cannot be a taboo subject between you if you want this relationship to move forward.  You need to talk about it even if he doesn't. Hopefully, based on your lead and him being more comfortable listening to you, he will begin to open up.  There is no forcing.  Men cannot be forced to talk that is for darn sure.

If you two end up together long term, life is going to throw a lot of things at you. MS may end up being small potatoes in the end. And ultimately, no body is going to get through this life without facing challenges, experiencing loss and feeling physical pain (chronic or otherwise).

I found that for me anyway, saying out loud to my husband what I thought his worst fear was (and it has nothing to do with MS) and reassuring him that it will never happen b/c his worst fear is within my control, helped him let go of it.  We all have things between us and our spouses that we just never talk about, maybe it's not even there on the surface but deep down we know. Say it, reassure him and perhaps it will be a new beginning for him and for you.

Julie

[Sumanadevii]

I would never recommend asking my spouse to get into counseling with me.  I think he will feel trapped and begin to blame himself for the problems.  I highly recommend you getting into counseling and finding ways to cope with your situation.  There seems to be a deep love between the two of you.  Sex is not the entire picture.  The counselor may recomend ways to approach him without causing him to panic.

In the meantime, I would recommend toys for you.  There are many on the market.  In fact, he may find that fun and participate.  If not, I am sure if you were honest and told him about using them, he may find relief that it is not being put on him and that it brings you satisfaction.  

I doubt sincerely he isn't aware that he isn't "giving" in that area.  He is probably all too well aware and feels badly.  If I told on this board how my husband and I decided to work the sex issue out, there would be gasps from the audience.  After 40 years honesty comes all to easy for us...lol

[Lulu54]

There are a number of resources on line for the topic of MS and sexuality/sex.  There are also a large number of video presentations on the topic, done by MS nurses and doctors.

I have viewed many but right now I'm having trouble finding them on line.  I will try again later today but perhaps someone else here has them book marked?

Thanks everyone for having this honest and compassionate discussion.

Lulu

[tyyt218]

Hi Julie,

Thanks again for your reply. What you said about drugs is very interesting. So no one ever told you (or I guess anyone who's reading this post) that the balance between likelihood of decreasing relapses and side effects is something to consider? I was there when the last doctor told him so and literally told him that therefore it was totally up to him to decide when to start the medications. Your point is very strong though (relapses could potentially completely disable a part of your body) so I don't understand why the doctors didn't bring this up very strongly to my partner.

I totally agree that talking is key. It's hard for me as well but I'll keep all you said in my mind and spirit. Hopefully it will bring some fruit.

Thanks.

[tyyt218]

Hi Sumanadevii

Thanks for your suggestions. I did think about methods like those you hint at. I guess at some point I should just try and see how it works out for us. :)

[tyyt218]

Hi Lulu,

Thanks, I'd be happy to look at what you suggest if you do find the links. I did find a few earlier and I also brought some pamphlets at home from the local MS society. Very nice stuff. I guess again bringing things home is not enough, a frank follow up discussion would be important.. Thing is that sex is such a mix of mind and body that it's hard to bring it up without worrying to hurt the other person, at least for me... I always thought I was so open minded and talking about sex was always easy until I hit some real problems! As with everything in life.. things are easy when everything works fine. But hopefully as with all the rest, one grows up and becomes stronger only by going through the hard parts.

[Guitar_grrrl]

My DH and I have known each other 30 years, now, and I was only diagnosed 2 years ago after some 20+ years of symptoms.  

Sex hasn't been too "hot button" of an issue for us, only because we take things One Day at a Time.  I've gone 7 months without orgasm, followed by return of them (yippeeee!!), accompanied by a 50% chance of having massive left leg spasms (hip to toes) at that moment.  Does this stop us?  Hell, no!  We also find other ways to have fun when I just flat out have NO sensation down there.

In the early days after my diagnosis, I had a few heart-to-hearts with him, telling my fears for the future, and aknowledging what an amazing life we've had so far.  He's very sensitive to when I'm not feeling well, and I have no trouble telling him when I'm not feeling well.  Neither of us are mind readers.

We raised a daughter together.  She's 27, and I had symptoms while she was growing up, but it never kept us from being good parents.  Now we're grandparents, and I watch my little grandson on Thursdays.  Sometimes DH is with me, sometimes he has to go to town to take care of business.  On the days when my energy is low, the little one and I just cuddle, read, sing...he is amazingly intuitive, and just "gets" it .  I make sure I nap when he does.  DH has babysat on his own on days when I wasn't home for one reason or another.

So, in summary, you two CAN have great sex, CAN be wonderful parents, and CAN live a full and meaningful life.  Be flexible, COMMUNICATE, and take good care of each other.

Big Hugs!

[addicted2harleys]

Hey there tyyt-

I kinda figured that your boyfriend was probably experiencing what I did/do as far as entering a new relationship when you have something like MS.  I am glad you broke through his wall in that area.  :)

As far as the sex is concerned, I know how very hard it has been for me to experience changes in my body.  For me, I have deteriorated very rapidly to the point that I am pretty much wheelchair bound and cannot drive.  So this makes me feel damaged or not whole...and this plays a role in my deciding to stay single.  The lack of sex drive and urinary issues would be extremely hard for me to "share" with a partner.  I don't like going through all of this...why would I want to put a partner through it, too?   I have guilt for my mom having to care for me.  I would also feel extremely guilty for constantly telling my partner "not tonight".  Sex is the farthest thing on my mind!   lol

Anyways, I am glad you are there for him.  Because on the other hand, I DO get lonely.  For companionship.  For cuddling.  

Addi

[jujuminx]

Regarding your question about drugs and side effects, YES, of course it was discussed. The side effects with copaxone though is very limited. Most common is site reactions (redness, itching, rash, etc).  It's not an interferon though so there are no flu like symtoms (symptoms) and the liver is not potentially effected. My skin reactions have been minimal. So, what's the downside? It potentially increases my chances of lengthening my relapses by up to 30%.

My relapses have been 8-10 yrs apart so it's not like I have relapses every few months. Still the last one which ended up being the key to my dx really scared me. It was much more severe than in the past and I got a taste of just what MS could possibly take away from me. It took me months to fully recover.

The biggest downer with copaxone is daily injections. I have always HATED needles and the thought of a daily med was hard to wrap my brain around.  To go from never having taken any medication, to daily injections was surreal.  I am not one for medication anyway, even pain meds when I get headaches.  Still after my doctor stongly recommended it and I read the literature (which I often reread when I get the monthly delivery), it seemed like a no brainer to me.

Most people with RRMS don't lose their mobility in one fell swoop, it's a gradual process. After each relapse, recovery can be less and less complete each time.  Seems to me that since there is no cure, the next best thing is lengthening the time between the relapses and trying to diminish their severity.  Too many people have a false sense of security thinking that since they feel okay now, they will be okay next year too, until they have a relapse.  I am only getting older and the older I get the longer I then have had MS which is way too often a progressive disease. It isn't necessary for me to lose part of my eyesight or start walking with a cane to know that that can potentially be the result of my next relapse.

I don't know why the doctor didn't bring it up either with your partner but if the need to test his blood for low vit D wasn't even mentioned, then I would say the doctor isn't the most communicative. To wait for him to go into a relapse to recommend a dmd's is just crazy (in my opinion of course).

Julie

[tyyt218]

Hi All,

Just wanted to thank for all the comments and sorry for not replying to the last ones. My b/f came back from a trip and I was trying to talk to him before actually adding anything to this discussion. I did bring up the conference call about emerging MS treatments but he didn't really want to listen to it.. I ended up listening to it (he was aware of me listening to it) and telling him about it later...

Thanks again.

[Lulu54]

thanks for the followup.  It is a hard conversation to have - hang in there for the sake of both of you.

So what did you think of the Emerging Therapies talk?  I hope it was worth the time you spent listening.  Knowledge really is power when it comes to this disease.  
best, L

[tyyt218]

Hi Lulu

I thought it was interesting and it pushed me to do more serious research on the topic. Since you asked I think it's worth opening another topic on this. Let me do this in a second.