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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.
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.
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.
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.
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 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
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
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
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
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!
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!
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.
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.
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