a big hug to you, bps25631
Hi bps25631, it’s Maggie.
Thank you for your post and for your honesty. First and foremost, I am sending you a huge hug.
I, too, have been “sad, tired, and alone” with MS, in a ten-year marriage, outside of it and single, and in my new relationship now.
I understand where jreagan70 is coming from in that it’s important to consider our own responsibility for our own happiness.
But in any give-and-take, reciprocal relationship with loved ones, it seems to me that we are obligated to help take care of each other’s happiness to the extent that we can. And in a marriage, we take on a partnership that is about love and also about shared homes, shared finances, shared duties, shared family—often children. When both parties make such a shared commitment and have such a shared investment in the relationship and all it entails, a spouse who doesn’t support his/her spouse’s basic needs can, I think, reasonably be expected to be a source of unhappiness.
But bps25631, I think you’ve been given so much good advice here, and that this unhappiness doesn’t need to be the case in your relationship with your husband.
I think pennstater and Mamabug’s advice is wonderful—to take him to an appointment with your neurologist, to give him the “spoon theory” article (I could KISS whoever wrote that), to introduce him to the caregiver’s forum.
And I agree with the idea of having a “heart-to-heart” talk with him, to give him the opportunity, as AriD said, “to truly understand your feelings and give you the rest and downtime you need.”
And I also think Anneclare was so brave, too, when she talked about judging herself as “lazy” and “needy.” I do that all the time.
I don’t know how to STOP doing that, and maybe I never will be able to completely. But from my own experience, I have learned that the best way I can take care of myself AND my loved ones is to be honest with myself, as Anneclare also said, about what I need, and then to make that clear to my loved ones.
I really liked what palmtree said, about “getting tough about what I could do and not do, setting a firm structure so I could take care of my health.”
What I’ve tried to say to my loved ones is that I hate having MS. I hate the fatigue and pain that come with it. I hate what it costs me, and I hate that it also costs those I love when I SHOULD be “in my prime.” I confess I do feel ashamed and like a burden. But even if I don’t LOOK like it, I have thus and such a limitation, and if I overextend myself, my health will further deteriorate and then I’ll be LESS good for THEM (my loved ones), as well as for me. So, if we can work together within my limitations, I can give them my best self.
And goodness, as a side note, did any of us CHOOSE to have this disease? Why do we feel ashamed and apologetic?
I also offer my loved ones a choice—I say, you know, Mom, I can’t do all day shopping like I used to. I CAN go to Target with you but I can’t stay more than an hour or two (I explain to her what happens to me with a funny name—I call it “the grocery store blues”—or overwhelm). And then next weekend I can go to the mall, but again, no more than an hour or two, and so on.
So that way she can choose—does she want to go to Target with me for an hour or two, and then drop me off and go to the mall herself, or does she want to wait to go to the mall with me the next weekend? Etc. And I let her know there will be no bad feelings from me no matter what she chooses.
I also like what Tawanda said: “keeping a marriage together ain’t easy.” And I want to add that I am one of those people she mentions who was in an abusive marriage, and MS—and others’ attitudes toward it—both made me more vulnerable to abuse and made it more difficult to escape. I won’t say more than that, because I want to speak specifically to bps25631’s situation (but Tawanda, I thank you for mentioning it, because it is SUCH an important issue).
And what’s more relevant for you—bps25631— is that I now have a new relationship with a significant other—we have been together over a year—and we now live together. Recently, I had to tell him I could not go with him to a social gathering and stay more than 4 hours—I guess I could call it “the party blues”—the pain and fatigue and brain fog all increase and coalesce and I get to a point where I started out light-hearted and quick-witted and I become barely able to speak. It’s awful. So I gave him the choice: if he wants me to go with him and it goes on for more than 4 hours, we have to leave early—if he wants to stay longer, I’ll have to stay home.
It worked out! And soon after, he sent me an email with a link to the spoon theory article, which I had never read before—he found it himself!
I don’t mean to say there are happy endings or sad endings.
I mean to say, bps25631, you deserve the best of happiness and health possible, and MS doesn’t make you less deserving, or more. You just deserve it, as we all do, and I hope that you and your husband are able to talk about it and work on it (or with it) and that whenever you are sad, tired, or alone, you are able to turn to him, or to a friend, or to the people on this board for understanding and warmth and support. Another huge hug to you. You are in my thoughts.
I’d really like to know how you’re doing, and how it’s working out, in your own time, of course, and if you want to share—I know it takes a while to get there.
Maggie
PS. I am bolding people’s user names so that it will help in following the thread of conversation and the contributions of everyone. I hope it’s not annoying but helpful!
Hi bps25631, it’s Maggie.
Thank you for your post and for your honesty. First and foremost, I am sending you a huge hug.
I, too, have been “sad, tired, and alone” with MS, in a ten-year marriage, outside of it and single, and in my new relationship now.
I understand where jreagan70 is coming from in that it’s important to consider our own responsibility for our own happiness.
But in any give-and-take, reciprocal relationship with loved ones, it seems to me that we are obligated to help take care of each other’s happiness to the extent that we can. And in a marriage, we take on a partnership that is about love and also about shared homes, shared finances, shared duties, shared family—often children. When both parties make such a shared commitment and have such a shared investment in the relationship and all it entails, a spouse who doesn’t support his/her spouse’s basic needs can, I think, reasonably be expected to be a source of unhappiness.
But bps25631, I think you’ve been given so much good advice here, and that this unhappiness doesn’t need to be the case in your relationship with your husband.
I think pennstater and Mamabug’s advice is wonderful—to take him to an appointment with your neurologist, to give him the “spoon theory” article (I could KISS whoever wrote that), to introduce him to the caregiver’s forum.
And I agree with the idea of having a “heart-to-heart” talk with him, to give him the opportunity, as AriD said, “to truly understand your feelings and give you the rest and downtime you need.”
And I also think Anneclare was so brave, too, when she talked about judging herself as “lazy” and “needy.” I do that all the time.
I don’t know how to STOP doing that, and maybe I never will be able to completely. But from my own experience, I have learned that the best way I can take care of myself AND my loved ones is to be honest with myself, as Anneclare also said, about what I need, and then to make that clear to my loved ones.
I really liked what palmtree said, about “getting tough about what I could do and not do, setting a firm structure so I could take care of my health.”
What I’ve tried to say to my loved ones is that I hate having MS. I hate the fatigue and pain that come with it. I hate what it costs me, and I hate that it also costs those I love when I SHOULD be “in my prime.” I confess I do feel ashamed and like a burden. But even if I don’t LOOK like it, I have thus and such a limitation, and if I overextend myself, my health will further deteriorate and then I’ll be LESS good for THEM (my loved ones), as well as for me. So, if we can work together within my limitations, I can give them my best self.
And goodness, as a side note, did any of us CHOOSE to have this disease? Why do we feel ashamed and apologetic?
I also offer my loved ones a choice—I say, you know, Mom, I can’t do all day shopping like I used to. I CAN go to Target with you but I can’t stay more than an hour or two (I explain to her what happens to me with a funny name—I call it “the grocery store blues”—or overwhelm). And then next weekend I can go to the mall, but again, no more than an hour or two, and so on.
So that way she can choose—does she want to go to Target with me for an hour or two, and then drop me off and go to the mall herself, or does she want to wait to go to the mall with me the next weekend? Etc. And I let her know there will be no bad feelings from me no matter what she chooses.
I also like what Tawanda said: “keeping a marriage together ain’t easy.” And I want to add that I am one of those people she mentions who was in an abusive marriage, and MS—and others’ attitudes toward it—both made me more vulnerable to abuse and made it more difficult to escape. I won’t say more than that, because I want to speak specifically to bps25631’s situation (but Tawanda, I thank you for mentioning it, because it is SUCH an important issue).
And what’s more relevant for you—bps25631— is that I now have a new relationship with a significant other—we have been together over a year—and we now live together. Recently, I had to tell him I could not go with him to a social gathering and stay more than 4 hours—I guess I could call it “the party blues”—the pain and fatigue and brain fog all increase and coalesce and I get to a point where I started out light-hearted and quick-witted and I become barely able to speak. It’s awful. So I gave him the choice: if he wants me to go with him and it goes on for more than 4 hours, we have to leave early—if he wants to stay longer, I’ll have to stay home.
It worked out! And soon after, he sent me an email with a link to the spoon theory article, which I had never read before—he found it himself!
I don’t mean to say there are happy endings or sad endings.
I mean to say, bps25631, you deserve the best of happiness and health possible, and MS doesn’t make you less deserving, or more. You just deserve it, as we all do, and I hope that you and your husband are able to talk about it and work on it (or with it) and that whenever you are sad, tired, or alone, you are able to turn to him, or to a friend, or to the people on this board for understanding and warmth and support. Another huge hug to you. You are in my thoughts.
I’d really like to know how you’re doing, and how it’s working out, in your own time, of course, and if you want to share—I know it takes a while to get there.
Maggie
PS. I am bolding people’s user names so that it will help in following the thread of conversation and the contributions of everyone. I hope it’s not annoying but helpful!
Comment