Post by bethemiracle on Apr 18, 2012 21:24:19 GMT
;D
I wanted to share with you my experience when I decided to tell a friend about my TMAU. I pick up this person every week to attend a meeting and we ride together. I'm always very nervous and self conscious about odor but have never said anything. I am pretty close with this person but have never had the nerve to say anything.
A subject came up, about food, that made it kind of difficult for me NOT to explain my situation, so in my head I thought, "okay, this is a good opportunity for me to tell about my TMAU." So I said, "This is a good opportunity for me to tell you something I've been wanting to tell you for a long time." I told her I had a medical condition where my body doesn't convert choline, which is in just about every food, and when I eat too much of it, it causes me to have an odor.
She actually said that she had just watched a show about it on TV. I asked, to double check, I said, "Was is TMAU?" And she confirmed, yes, it was about TMAU. And she said how she felt bad for the women, who it seemed there wasn't much you could do about it. I told her about the diet, how it sometimes helps and she said that's good there's something you could do about it.
I mentioned how I know this must be as awkward for her to talk about as it is for me and she said she was glad I told her and she hoped that I would not have to be nervous about it around her anymore. And I said that is a big relief, that I hope to tell more people who I'm close with so they understand.
She told me she's never noticed or smelled anything, which is what most people say. She's a very honest person, you know, the type you could count on to tell you the truth if you need them to, but I am still aware that she still might just be being kind and trying to make me not feel bad.
I again said, "I know this is awkward for you, but if you ever feel comfortable enough to tell me if I'm having a bad day, it won't hurt my feelings and it will help me, because sometime you eat something that you don't know is causing a problem and it's helpful to know if you have an odor. And she said, "Right, " because she remembered from the show that you usually can't detect your own odor.
She also brought up a few observations about me that now made sense to her, like how I chew on mints when we're in the car and how I always dress lightly (so as not to sweat), and in our meeting we attend I usually sit at my own table because I'm paranoid to get close to people, and things were coming together and making sense to her.
So this is one more person in my circle that I've found the courage to share it with. If nothing else, I at least hope to form a group of people who understand what's happening and that hopefully I can spend time with without being sooo stressed out about. The less stress we have to deal with the better. If we can eliminate it in as many parts of our life as possible we will have less of it and maybe the other stressful times will be easier to take in smaller doses.
A very respected person I confided in expressed how it would be nice if I could feel free to tell folks so that "I am not the disease. The disease is just a part of me, and there is a lot more to me than that." I liked the way he put that.
I thought it would be nice to let all those folks who have tried so hard to raise awareness about this disease know that it is working. It was so nice for both of us that she had seen the show and knew what I was talking about and really had sympathy and understanding for those afflicted with it. She even recognized the term "TMAU"! It really made the conversation easier and a little less awkward for both of us. So thanks to everybody. It already made a difference in my life!!! And I'm sure it will for others down the rode.
Do you all know the story about the man picking up all the star fish that had been washed up on the beach? It goes something like this: The ocean had washed up hundreds of star fish all over the beach. Someone observed a man walking along and picking them up and throwing them back in the water. The person said to the man, "Why are you doing this? There are so many that you couldn't possibly save them all or make a difference." And the man kept walking and picked up the next star fish and said, "Well, I can make a difference and save this one," as he threw it into the ocean. I maybe didn't tell it as eloquently as it could be but I love that story.
Just thought I would share....
I wanted to share with you my experience when I decided to tell a friend about my TMAU. I pick up this person every week to attend a meeting and we ride together. I'm always very nervous and self conscious about odor but have never said anything. I am pretty close with this person but have never had the nerve to say anything.
A subject came up, about food, that made it kind of difficult for me NOT to explain my situation, so in my head I thought, "okay, this is a good opportunity for me to tell about my TMAU." So I said, "This is a good opportunity for me to tell you something I've been wanting to tell you for a long time." I told her I had a medical condition where my body doesn't convert choline, which is in just about every food, and when I eat too much of it, it causes me to have an odor.
She actually said that she had just watched a show about it on TV. I asked, to double check, I said, "Was is TMAU?" And she confirmed, yes, it was about TMAU. And she said how she felt bad for the women, who it seemed there wasn't much you could do about it. I told her about the diet, how it sometimes helps and she said that's good there's something you could do about it.
I mentioned how I know this must be as awkward for her to talk about as it is for me and she said she was glad I told her and she hoped that I would not have to be nervous about it around her anymore. And I said that is a big relief, that I hope to tell more people who I'm close with so they understand.
She told me she's never noticed or smelled anything, which is what most people say. She's a very honest person, you know, the type you could count on to tell you the truth if you need them to, but I am still aware that she still might just be being kind and trying to make me not feel bad.
I again said, "I know this is awkward for you, but if you ever feel comfortable enough to tell me if I'm having a bad day, it won't hurt my feelings and it will help me, because sometime you eat something that you don't know is causing a problem and it's helpful to know if you have an odor. And she said, "Right, " because she remembered from the show that you usually can't detect your own odor.
She also brought up a few observations about me that now made sense to her, like how I chew on mints when we're in the car and how I always dress lightly (so as not to sweat), and in our meeting we attend I usually sit at my own table because I'm paranoid to get close to people, and things were coming together and making sense to her.
So this is one more person in my circle that I've found the courage to share it with. If nothing else, I at least hope to form a group of people who understand what's happening and that hopefully I can spend time with without being sooo stressed out about. The less stress we have to deal with the better. If we can eliminate it in as many parts of our life as possible we will have less of it and maybe the other stressful times will be easier to take in smaller doses.
A very respected person I confided in expressed how it would be nice if I could feel free to tell folks so that "I am not the disease. The disease is just a part of me, and there is a lot more to me than that." I liked the way he put that.
I thought it would be nice to let all those folks who have tried so hard to raise awareness about this disease know that it is working. It was so nice for both of us that she had seen the show and knew what I was talking about and really had sympathy and understanding for those afflicted with it. She even recognized the term "TMAU"! It really made the conversation easier and a little less awkward for both of us. So thanks to everybody. It already made a difference in my life!!! And I'm sure it will for others down the rode.
Do you all know the story about the man picking up all the star fish that had been washed up on the beach? It goes something like this: The ocean had washed up hundreds of star fish all over the beach. Someone observed a man walking along and picking them up and throwing them back in the water. The person said to the man, "Why are you doing this? There are so many that you couldn't possibly save them all or make a difference." And the man kept walking and picked up the next star fish and said, "Well, I can make a difference and save this one," as he threw it into the ocean. I maybe didn't tell it as eloquently as it could be but I love that story.
Just thought I would share....