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MS and Relationships
Every once in a while we have a greaat discussion about very sensitive topics. One that we haven't covered in a long while is how hard it is for a spouse or partner to accept the new circumstances of being with someone who "isn't the one they married." So many of you have voiced this in various conversations, but I would like to hear again from you.
Sometimes it's having to become a caretaker instead of a lover. Or it may be problems with the financial drain of medical bills or losing an income.
Many of you have overcome this to one extent or another and we really like to hear those stories as well.
These are stories of grief and anger, both within us and in our families.
Quix
Sometimes it's having to become a caretaker instead of a lover. Or it may be problems with the financial drain of medical bills or losing an income.
Many of you have overcome this to one extent or another and we really like to hear those stories as well.
These are stories of grief and anger, both within us and in our families.
Quix
Being divorced I don't have a partner story, but I did go through some hard times with my family. Ten years ago I was a gung-ho solo pediatrician in a small rural town. I had always taken my medicine to where it was needed, but not necessarily where it would bring in money (a big factor in my divorce..) I had been in the Indian Health Service, 10 years on the South Side of Chicago, rural Nevada, East LA. This means I worked very hard and very long hours.
Suddenly 10 years ago I developed severe vertigo which robbeb me of my ability to practice medicine. My relationship with my family was okay for the first 4 years or so, but they wearied of my severe fatigue and things became a little awkward.
Then 4 years ago, my fatigue suddenly doubled. On top of that I had severe heat intolerance. Visting my parents was hard. They were in their 80's and always cold so they kept their house really warm. I would strip down as far as I could and still maintain a modicum of modesty. Then I would have 2 fans blowing on me. My dad was visibly annoyed both by my search for coolness and my lack of activity. He dropped little hints about being lazy and high-maintainance.
My mom believed something was wrong, but really didnt' understand. When my right leg stopped working I told them, but they didn't see that I was dragging it nor did they understand. (Heck! I didn't understand either). As I became more incapacitated my dad became more critical and distant.
Only after my MS diagnosis did he understand that there was a problem, but now I get mostly pity. He doesn't see me for who I am. Maybe it's the focus on a person's worth being set by what they can do. We are slowing improving together, but it has been enormously hard.
Quix
Suddenly 10 years ago I developed severe vertigo which robbeb me of my ability to practice medicine. My relationship with my family was okay for the first 4 years or so, but they wearied of my severe fatigue and things became a little awkward.
Then 4 years ago, my fatigue suddenly doubled. On top of that I had severe heat intolerance. Visting my parents was hard. They were in their 80's and always cold so they kept their house really warm. I would strip down as far as I could and still maintain a modicum of modesty. Then I would have 2 fans blowing on me. My dad was visibly annoyed both by my search for coolness and my lack of activity. He dropped little hints about being lazy and high-maintainance.
My mom believed something was wrong, but really didnt' understand. When my right leg stopped working I told them, but they didn't see that I was dragging it nor did they understand. (Heck! I didn't understand either). As I became more incapacitated my dad became more critical and distant.
Only after my MS diagnosis did he understand that there was a problem, but now I get mostly pity. He doesn't see me for who I am. Maybe it's the focus on a person's worth being set by what they can do. We are slowing improving together, but it has been enormously hard.
Quix
This one is hard for me. I hide most things and try to look, talk, walk, and act like all is ok. I really don't get asked if I'm ok, or if anything is going on. Usually, if there is a situation, I find myself having to make up an excuse as to why I cannot participate.
I don't know if it is denial on everyone's part, or if it's just that invisible, or if they have forgotten, or are not willing to learn the disease, or just don't care. I sadly, really don't know.
Like Granny, I think it all varies so much from day to day. But for some reason everyone's expectations don't.
Hope we do keep this thread active though, it's so very important.
Shelly
I don't know if it is denial on everyone's part, or if it's just that invisible, or if they have forgotten, or are not willing to learn the disease, or just don't care. I sadly, really don't know.
Like Granny, I think it all varies so much from day to day. But for some reason everyone's expectations don't.
Hope we do keep this thread active though, it's so very important.
Shelly
It's been hard for my husband to understand how MS works. He's Japanese and when the neuro first started talking about it, he'd never heard of it, even in Japanese. I get the impression that MS is less common in Japan and they definitely don't seem to have had the kind of PR campaign there's been in the U.S. In some ways this wasn't bad because he didn't have any dreadful images in his head and in fact, most of the people I know, although they know the words multiple sclerosis, really have no idea what it means.
But it's taken him a while to come to terms with the fact that this is a neurological problem and that exercising more probably isn't going to make me stop wobbling. I did show him the other day (next to something to grab onto) how I have the Romberg sign now (new at my last exam; it surprised me when I started actually falling and I think it surprised the neuro, too), which is clearly not related to muscle weakness from lack of exercise. I think that helped. His understanding sometimes seem to wax and wane, though.
He tends to subscribe to the theory that if you get sick, it's caused by diet or activity level or something else you did, which has led to some frustrating conversations. Especially since you can't ever prove anything one way or the other. He also thinks (hopes) that I can solve my problems by losing weight, eating what he thinks are good foods, and exercising more. I have lost about 10 lbs since dx, but the exercise angle has become much more challenging, which is hard to see from the outside.
On the other hand, he is very helpful. He's a good cook, cleans more than I do (less tolerance for dirt and mess), and drives when I don't feel up to it, etc. But it's hard on him that I can't do things that I used to, especially now that I can't walk all that far (half a mile is like a marathon). And it's hard on me to see the worried looks on his face.
sho
But it's taken him a while to come to terms with the fact that this is a neurological problem and that exercising more probably isn't going to make me stop wobbling. I did show him the other day (next to something to grab onto) how I have the Romberg sign now (new at my last exam; it surprised me when I started actually falling and I think it surprised the neuro, too), which is clearly not related to muscle weakness from lack of exercise. I think that helped. His understanding sometimes seem to wax and wane, though.
He tends to subscribe to the theory that if you get sick, it's caused by diet or activity level or something else you did, which has led to some frustrating conversations. Especially since you can't ever prove anything one way or the other. He also thinks (hopes) that I can solve my problems by losing weight, eating what he thinks are good foods, and exercising more. I have lost about 10 lbs since dx, but the exercise angle has become much more challenging, which is hard to see from the outside.
On the other hand, he is very helpful. He's a good cook, cleans more than I do (less tolerance for dirt and mess), and drives when I don't feel up to it, etc. But it's hard on him that I can't do things that I used to, especially now that I can't walk all that far (half a mile is like a marathon). And it's hard on me to see the worried looks on his face.
sho
This is a very interesting topic and one my husband and I are currently trying to tackle. My symptoms have been present for about 4 months now. The only visible sign is ataxia which is on the severe side. The nausea, numbness, etc. are all things I can hide well, but walking like I'm completely drunk all of the time is something that needs explaining to just about everyone. It's very hard to take my kids out in public when mom looks like she drank a bottle of whiskey! Although I don't have a diagnosis yet, I'm discussing walkers and wheelchairs with my neurologist and trying to explain to my preschooler why mom is so sick for no good reason. How this is affecting my relationship with my husband as well as my kids is hard to say. It's only been 4 months and yet I have other issues. My husband (active duty) is deploying soon and my youngest has a special need. The logistics concerning how I will manage and what I will do during the deploymnet are obviously making my husband worried. And that's just the short term.
For the long term, it's terrifying. There are so many "unknowns". I am not who my husband married. I am not who I was just a few months ago. My relatives are in another state and some have not seen me since before I got sick. They were shocked on a recent visit at just how bad I look. That's not very comforting. I want so badly, to be the young, smart, pretty, active woman that my husband married. It breaks my heart and although my husband is being so wonderful through all of this, I know it breaks his heart too. I can barely walk when a few months ago I was dancing. What?! But I love my husband and my kids and I know now, more than ever, that they love me. I owe it to them to not to let MS or whatever this is to define me. And maybe someday soon I'll dance again! That would be awesome!
Lisa
For the long term, it's terrifying. There are so many "unknowns". I am not who my husband married. I am not who I was just a few months ago. My relatives are in another state and some have not seen me since before I got sick. They were shocked on a recent visit at just how bad I look. That's not very comforting. I want so badly, to be the young, smart, pretty, active woman that my husband married. It breaks my heart and although my husband is being so wonderful through all of this, I know it breaks his heart too. I can barely walk when a few months ago I was dancing. What?! But I love my husband and my kids and I know now, more than ever, that they love me. I owe it to them to not to let MS or whatever this is to define me. And maybe someday soon I'll dance again! That would be awesome!
Lisa
hmmm. this is interesting... I read the start to the thread and didn't post yesterday, figured it was for those who'd had a rough time dealing with the MS dx.
And yet, most of the experiences listed here so far have been good, and tell of people loving them for who they really are.
So... I will tell you about my mom.
When she was young and about to marry, she took the LPN course and got her degree. While she couldn't figure out later in life why exactly, she knew that there was a reason for it, as it's come in handy a few times here and there. But now it's a true godsend. She is my best friend, and the one person on earth that I love the most. She is always there for me and I know that. Yes, we do have our ups and downs. But.... she's truly amazing. And now, she looking at house plans for an appartment so that I can live with them and be "independent". She also drives me everywhere for now, until I get a set of wheels that equiped for me. But greater still, she listens to me, everyday, and just takes care of me. Smiles. For example: now everyday she rubs the muscles in my legs so that they will relax so I can sit and stand without my feet being pulled "under". She also catches me when I fall- literally. And I can count on her to be there for my questions, and my appointments, and when I'm sick she's there to walk me from the couch to wherever I need to go.
My little sister is also great (as in, I think she's amazing), she has announced that having me "sick or whatever you are... can actually be fun becuase I get to push you around in that wheel-chair". But, she's having a harder time adjusting. I'm not like I once was, and i often need her help and I can't do things with her as fast as she wants, and she just doesn't know how to handle it. Right now she's handling it by yelling at me every day. Hopefully that phase will get over, and we can move into a better one.
My dad has handled in differently on different days. One day he will be rather bitter about the whole thing, and the next he will feel very bad about it, and tell me that I'm simply amazing and how happy he is to have a daughter like me, who is able to handle everything so well. I think he's gradually accepting the whole thing, but boy, it took him a lot longer than the rest of us (which he admits). I knew about a year or two ago that something just wasn't too right and it wasn't until last month that he really realized that hey, life is changing here!
ok, so that's my family's reaction. No, i'm not married and I've actually never dated anyone...... (my friends say I'm being selective, waiting for Mr. Right)
I'm only 20, so that might explain that a bit. Just a look at how folks can handle it, when they are your own family and you are living with them.
~Sunnytoday~
And yet, most of the experiences listed here so far have been good, and tell of people loving them for who they really are.
So... I will tell you about my mom.
When she was young and about to marry, she took the LPN course and got her degree. While she couldn't figure out later in life why exactly, she knew that there was a reason for it, as it's come in handy a few times here and there. But now it's a true godsend. She is my best friend, and the one person on earth that I love the most. She is always there for me and I know that. Yes, we do have our ups and downs. But.... she's truly amazing. And now, she looking at house plans for an appartment so that I can live with them and be "independent". She also drives me everywhere for now, until I get a set of wheels that equiped for me. But greater still, she listens to me, everyday, and just takes care of me. Smiles. For example: now everyday she rubs the muscles in my legs so that they will relax so I can sit and stand without my feet being pulled "under". She also catches me when I fall- literally. And I can count on her to be there for my questions, and my appointments, and when I'm sick she's there to walk me from the couch to wherever I need to go.
My little sister is also great (as in, I think she's amazing), she has announced that having me "sick or whatever you are... can actually be fun becuase I get to push you around in that wheel-chair". But, she's having a harder time adjusting. I'm not like I once was, and i often need her help and I can't do things with her as fast as she wants, and she just doesn't know how to handle it. Right now she's handling it by yelling at me every day. Hopefully that phase will get over, and we can move into a better one.
My dad has handled in differently on different days. One day he will be rather bitter about the whole thing, and the next he will feel very bad about it, and tell me that I'm simply amazing and how happy he is to have a daughter like me, who is able to handle everything so well. I think he's gradually accepting the whole thing, but boy, it took him a lot longer than the rest of us (which he admits). I knew about a year or two ago that something just wasn't too right and it wasn't until last month that he really realized that hey, life is changing here!
ok, so that's my family's reaction. No, i'm not married and I've actually never dated anyone...... (my friends say I'm being selective, waiting for Mr. Right)
I'm only 20, so that might explain that a bit. Just a look at how folks can handle it, when they are your own family and you are living with them.
~Sunnytoday~
When I was first diagnosed, hubby was quite worried about me. (Still is!) I got in the habit of not telling him everything that was going on, so he would worry less. But then he'd get mad because I wasn't telling him everything! So I try to tell him as much as I can - as much as he'll understand. He does have a reference for the feelings of disorientation and cognitive fog, as he experienced an episode when he was a kid that was similar. (Probably toxic chemical exposure, but we're not sure.)
So he really tries hard to take care of me. He drives me everywhere, because I'm not always safe behind the wheel. He's always supportive and kind... but... he's also not the tidiest of people. I get a little frustrated, because when I'm not feeling very good, the house goes to ****. He just doesn't see the dirt as a priority. So when I am feeling good, I end up spending that time cleaning house! I hate to spend the good time I have cleaning - I'd rather be doing something fun.
He's also not a cook, but I'm okay with that. I like to cook, and it's one of the few things I can do while in the middle of a fog.
So he really tries hard to take care of me. He drives me everywhere, because I'm not always safe behind the wheel. He's always supportive and kind... but... he's also not the tidiest of people. I get a little frustrated, because when I'm not feeling very good, the house goes to ****. He just doesn't see the dirt as a priority. So when I am feeling good, I end up spending that time cleaning house! I hate to spend the good time I have cleaning - I'd rather be doing something fun.
He's also not a cook, but I'm okay with that. I like to cook, and it's one of the few things I can do while in the middle of a fog.
Ok. I am not diagnosed, but probable. My boyfriend/fiancé, is definately
trying his best. Our lives together changed slowly, and with that slow change came acceptance with each change. Last year when I found out the possibility of MS, it was if all mine and his questions were answered. Yeah, at first he thought that his girlfriend was starting to become a hypocondriac! But now he believes :) I am sure he gets really tired of the little things that I mention a lot. So I do try to keep my bellyaching to a minimum.
He is always there for my appointments. He is always caring and let's me rest after work. I don't have to lift a finger.
We were put together for a reason. He is much older than me. But funny as this sounds we are at the same pase. Physically. We laugh sometimes about how we will be in our older years :) he will be a great caretaker hehe
relationships are hard in themselves, much more so with a chronic illness. Being able to communicate well is so important. He has to know when I am feeling bad (you cannot tell on the outside) so that he knows why I might be snappy or crabby.
So far we are doing great. I can tell we will do just fine. He is my best friend :)
Cyndi
trying his best. Our lives together changed slowly, and with that slow change came acceptance with each change. Last year when I found out the possibility of MS, it was if all mine and his questions were answered. Yeah, at first he thought that his girlfriend was starting to become a hypocondriac! But now he believes :) I am sure he gets really tired of the little things that I mention a lot. So I do try to keep my bellyaching to a minimum.
He is always there for my appointments. He is always caring and let's me rest after work. I don't have to lift a finger.
We were put together for a reason. He is much older than me. But funny as this sounds we are at the same pase. Physically. We laugh sometimes about how we will be in our older years :) he will be a great caretaker hehe
relationships are hard in themselves, much more so with a chronic illness. Being able to communicate well is so important. He has to know when I am feeling bad (you cannot tell on the outside) so that he knows why I might be snappy or crabby.
So far we are doing great. I can tell we will do just fine. He is my best friend :)
Cyndi
I could discuss this topic once a month and each one would be different. Ever since I started having problems and constantly in pain, my relationship with my husband has been a roller coaster. There are times when he is the most loving and understanding person on earth and then there are the bad times when he wont even look at me, let alone talk to me.
One thing I will say for him is he does try. Just like most of us there are times when you just don't want to deal with it and try to ignore what's happening to our bodies. My body has changed in such a drastic way over the last 4 years that when I look in the mirror I can see why my husband ignores me sometimes. If I don't like what I see, I'm sure he doesn't.
I know my husband loves me, but our relationship has definitely changed. Of course 4 years ago he had a get up and go wife that wore a size 5 jeans and treated him like a king. Now he has a wife that her get up and go got up and went. Now wears a size 12/14 jeans, and does very little to help out most of the time.
I used to get up every morning and, take a shower, put on my make-up, make sure everything that was needed for the day was placed strategically on the table, go work 10 hours a day at a greeting card factory, come home and fix supper, do at least 2 loads of laundry, pick up the house, work in the garden or yard, try to have a few minutes of family conversation, go to bed, and start all over again.
So, even though we have been married for 26 years, and we are still in love, our lives have definitely changed. Our relationship is still made up of love but not lovers. I know that he will be with me through everything. If the roles where reversed I know that I would be with him through it all.
Well, there you have it. The life of marriage, love, loyalty, and the dreaded MS. Through all of it I still feel like a very, very, lucky lady to have the husband that I have.
I'll be praying,
Carol
One thing I will say for him is he does try. Just like most of us there are times when you just don't want to deal with it and try to ignore what's happening to our bodies. My body has changed in such a drastic way over the last 4 years that when I look in the mirror I can see why my husband ignores me sometimes. If I don't like what I see, I'm sure he doesn't.
I know my husband loves me, but our relationship has definitely changed. Of course 4 years ago he had a get up and go wife that wore a size 5 jeans and treated him like a king. Now he has a wife that her get up and go got up and went. Now wears a size 12/14 jeans, and does very little to help out most of the time.
I used to get up every morning and, take a shower, put on my make-up, make sure everything that was needed for the day was placed strategically on the table, go work 10 hours a day at a greeting card factory, come home and fix supper, do at least 2 loads of laundry, pick up the house, work in the garden or yard, try to have a few minutes of family conversation, go to bed, and start all over again.
So, even though we have been married for 26 years, and we are still in love, our lives have definitely changed. Our relationship is still made up of love but not lovers. I know that he will be with me through everything. If the roles where reversed I know that I would be with him through it all.
Well, there you have it. The life of marriage, love, loyalty, and the dreaded MS. Through all of it I still feel like a very, very, lucky lady to have the husband that I have.
I'll be praying,
Carol
When I was diagnosed with MS in 1993 of course there were the usual feelings of anger and denial and feeling just plain ripped off but we get over most of those feelings. For me there is one feeling that will remain with me until the day I die.
The neurologist that diagnosed me is a researcher for MS and he really has no more of a personality now, than he did back then. When we asked him about the possibility of having a baby, he point blank said that he wouldn't advise it. When we questioned him as to why he responded "Well, I don't care what you do but if you want a kid don't say I didn't warn you that you would be in a wheelchair within a month after birthing it!" and he left the room. My hubby and I were stunned! I was 30 and hubby was 37 and having a baby was still on our minds at that age.
Now you have to understand that we had just been given the devastating news that I tested positive for MS and we had NO idea what it was all about! We pictured what many do when they get this diagnosis, a long life of pain, inability to care for myself, looking at the world from a wheelchair...we were terrified and OF COURSE we listened to the "specialist"! Who wouldn't??
We are older and wiser now but unfortunately it is too late for us. We now know that we could probably have gone ahead and had a child and it was probably a 50/50 chance that I would have remained in remission until 2007 at which time our child would have been 15 years old. We also know that even if I hadn't remained in remission, the odds were probably that I would still have been able to care for my child with help from friends and family. We listened to this so-called "brilliant researcher who is on the cutting edge in the search for a cure for MS" and missed out on a part of our life we will never have.
We have discussed it many times and we have cried and we have cursed and we have finally accepted that it just "wasn't meant to be" because we did what we were always taught to do, listen to the doctor ...however, the hole in my heart remains forever and the pain will never go away.
I am very fortunate in that my common-law husband and I have an unbelieveable relationship and that we are best of friends. Our 23 years together are complete and yet there is always that little niggling in the back of both of our minds that makes us ask what if? We could drive ourselves crazy with this so we have chosen to stop asking and revel in the life we have together. We have a lot to be happy for and we love to spend time together and he is with me through this crazy MS journey every step of the way. I can honestly say that I have only had to go to 2 neurologist appointments alone and only because he had to work otherwise he would have been there. He is a good man and I KNOW I am fortunate to have him...and if I were to forget for just one second, my Mother would be right there to remind me.
Rena705
The neurologist that diagnosed me is a researcher for MS and he really has no more of a personality now, than he did back then. When we asked him about the possibility of having a baby, he point blank said that he wouldn't advise it. When we questioned him as to why he responded "Well, I don't care what you do but if you want a kid don't say I didn't warn you that you would be in a wheelchair within a month after birthing it!" and he left the room. My hubby and I were stunned! I was 30 and hubby was 37 and having a baby was still on our minds at that age.
Now you have to understand that we had just been given the devastating news that I tested positive for MS and we had NO idea what it was all about! We pictured what many do when they get this diagnosis, a long life of pain, inability to care for myself, looking at the world from a wheelchair...we were terrified and OF COURSE we listened to the "specialist"! Who wouldn't??
We are older and wiser now but unfortunately it is too late for us. We now know that we could probably have gone ahead and had a child and it was probably a 50/50 chance that I would have remained in remission until 2007 at which time our child would have been 15 years old. We also know that even if I hadn't remained in remission, the odds were probably that I would still have been able to care for my child with help from friends and family. We listened to this so-called "brilliant researcher who is on the cutting edge in the search for a cure for MS" and missed out on a part of our life we will never have.
We have discussed it many times and we have cried and we have cursed and we have finally accepted that it just "wasn't meant to be" because we did what we were always taught to do, listen to the doctor ...however, the hole in my heart remains forever and the pain will never go away.
I am very fortunate in that my common-law husband and I have an unbelieveable relationship and that we are best of friends. Our 23 years together are complete and yet there is always that little niggling in the back of both of our minds that makes us ask what if? We could drive ourselves crazy with this so we have chosen to stop asking and revel in the life we have together. We have a lot to be happy for and we love to spend time together and he is with me through this crazy MS journey every step of the way. I can honestly say that I have only had to go to 2 neurologist appointments alone and only because he had to work otherwise he would have been there. He is a good man and I KNOW I am fortunate to have him...and if I were to forget for just one second, my Mother would be right there to remind me.
Rena705
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