It’s Sunday. I didn’t sleep until 1PM today. I am celebrating the break in the weather by trying different things – like getting out of bed early and going to see actual friends. My friends Melissa and Michelle were having a get together at my other friend Lara’s house. It was nice to see actual humans!
I also saw Evie and Meade…two favorites I haven’t see in a long while. Who am I kidding? I haven’t seen anyone but Sandy in a long while (though I love me some Sandy so that’s usually OK with me). If I don’t see you at work, chances are you won’t be seeing me these days. The weather has played a part in that. I hate going outside when the heat and humidity are so bad because it makes me feel like I can’t move or breathe. It doesn’t make me want to do anything because I know that whatever I do will lose it’s appeal about ten minutes after I walk outside.
But last night the weather broke.
It’s 73 degrees outside and low humidity. The sun is shining. I drove home from Lara’s house with the top down – which also is a rare occurrence these last few weeks. It felt good to be outside. To see people. To get out. To feel the wind in my hair.
But it also felt weird.
I only have one thing to talk about. One thing that is always on my mind. I worry about that. People just say “but you look so good! Are you feeling good?” And my answer is…yeah, not so much. I pretty much just feel OK. And I guess, in the words of my friend Meade, “You know, sometimes OK is just what we get. And that has to be enough.” And she’s right. She reminded me that she’s almost 60. As if that is the age when we all start to realize that things are changing and OK is just the way we feel. I told her, that’s what MS feels like. It feels like getting old. But in super speed, all at once. Everything goes bad at the same time and just seems to keep getting worse.
I’ve been rejected once (again) for my new drug Provigil. It’s not approved for MS use so it can take some time to get approval. Ironically, it’s approved for use on people who have narcolepsy. It’s supposed to give me more energy. On the forums, some people say it is a real game changer. Other people, not so much. Cheryl took it for a while but she had to stop because it gave her terrible eye pain. I’m resisting the urge to google Provigil to see more about the potential side effects. I feel like it’s better if I don’t know.