(Started while waiting in the doctor's office about 1 week ago. Just didn't find time to post it)
I've been thinking a lot about how so many things have been affecting my life, my relationships, and my thoughts. Primarily, how this diagnosis has affected these things. Everyone who has had ALS for a while or who is close with someone who has says don't let it change your life. Don't let it keep you from doing the things you want to do. Don't let it rule you or make decisions for you.
Truth is, though, I've let it change so many of my thoughts, my outlooks, my philosophies.
I'm not as kind, at least in my head anyway, and sometimes outside of it. I used to think it was worthwhile to be kind and patient with everyone I meet, or at least try my hardest to. I was the laid back person, the person who didn't disagree with others, argued out of fun but not so much out of spite, generally had no beef with others and others had none with me.
I just don't know lately. I don't want to hear complaining, and not because I feel like others don't have anything to complain about compared to me - it's all relative and I know this. But I just don't want to hear it. Maybe I feel like I have enough to bring me down lately, the last thing I want is to head more of what's bringing other people down. I need positives, not negatives. I also feel like I just don't want to put up with as much anymore. A few weeks ago, I was the most assertive I think I'd ever been and walked out of a restaurant after being treated rudely by the hostess, to the point of even commenting on her rudeness to her face. I never do that! If I'm not always a patient person, I'm least a restrained one who, although I think rude thoughts, would never say them to the person. It was so out of character and yet, it felt so liberating. A few days later I was heinously rude to one of Georgi's co-workers, a woman whom I don't know very well but do not have good feelings about. Granted, I was in a foul mood that day to start, but even so - the former me would have just not said word one to her all day. Instead I was just a bitch most of the day. And so the worst part? I feel bad, but only to an extent, and it isn't an extent at which I would regret much of what I said or did. My true feelings were expressed, just not in the most calm of ways.
Ugh.
Ok, so more than any of that lately, my biggest emotion is fear. It's been an easy one to ignore lately. I feel like I'm always trying to make other people feel better about my diagnosis rather than them try to lighten my mood. I guess this is typical. But I'm scared. Terrified, often. I hate not knowing what is to come. I hate not knowing if pregnancy is a good idea or a bad one. I'm afraid of not doing everything I can for myself to increase my time. I'm afraid of not having enough time. I never really addressed it before. I guess I really have been in denial this whole time. My next clinic appointment is in 5 days and, for some reason, it just feels so much more real now. It's sinking in a little more. I'm beginning a journey with a group of people who will follow me until the end. In filling out this pre-visit screening form, I was able to answer no to almost every question.
But then it hit me.
One day, I will answer yes.
One day, I will have shortness of breath when talking
One day, I will have difficulty swallowing.
One day, I will not be able to get dressed on my own.
And so much more. How can this be?
Today, while writing this, was the first time I've cried over this disease since my initial diagnosis. It really is hitting me again.
I've been thinking a lot about how so many things have been affecting my life, my relationships, and my thoughts. Primarily, how this diagnosis has affected these things. Everyone who has had ALS for a while or who is close with someone who has says don't let it change your life. Don't let it keep you from doing the things you want to do. Don't let it rule you or make decisions for you.
Truth is, though, I've let it change so many of my thoughts, my outlooks, my philosophies.
I'm not as kind, at least in my head anyway, and sometimes outside of it. I used to think it was worthwhile to be kind and patient with everyone I meet, or at least try my hardest to. I was the laid back person, the person who didn't disagree with others, argued out of fun but not so much out of spite, generally had no beef with others and others had none with me.
I just don't know lately. I don't want to hear complaining, and not because I feel like others don't have anything to complain about compared to me - it's all relative and I know this. But I just don't want to hear it. Maybe I feel like I have enough to bring me down lately, the last thing I want is to head more of what's bringing other people down. I need positives, not negatives. I also feel like I just don't want to put up with as much anymore. A few weeks ago, I was the most assertive I think I'd ever been and walked out of a restaurant after being treated rudely by the hostess, to the point of even commenting on her rudeness to her face. I never do that! If I'm not always a patient person, I'm least a restrained one who, although I think rude thoughts, would never say them to the person. It was so out of character and yet, it felt so liberating. A few days later I was heinously rude to one of Georgi's co-workers, a woman whom I don't know very well but do not have good feelings about. Granted, I was in a foul mood that day to start, but even so - the former me would have just not said word one to her all day. Instead I was just a bitch most of the day. And so the worst part? I feel bad, but only to an extent, and it isn't an extent at which I would regret much of what I said or did. My true feelings were expressed, just not in the most calm of ways.
Ugh.
Ok, so more than any of that lately, my biggest emotion is fear. It's been an easy one to ignore lately. I feel like I'm always trying to make other people feel better about my diagnosis rather than them try to lighten my mood. I guess this is typical. But I'm scared. Terrified, often. I hate not knowing what is to come. I hate not knowing if pregnancy is a good idea or a bad one. I'm afraid of not doing everything I can for myself to increase my time. I'm afraid of not having enough time. I never really addressed it before. I guess I really have been in denial this whole time. My next clinic appointment is in 5 days and, for some reason, it just feels so much more real now. It's sinking in a little more. I'm beginning a journey with a group of people who will follow me until the end. In filling out this pre-visit screening form, I was able to answer no to almost every question.
But then it hit me.
One day, I will answer yes.
One day, I will have shortness of breath when talking
One day, I will have difficulty swallowing.
One day, I will not be able to get dressed on my own.
And so much more. How can this be?
Today, while writing this, was the first time I've cried over this disease since my initial diagnosis. It really is hitting me again.
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