Sorry I haven’t been writing. I just haven’t had the energy. I had a good week and now it’s time to work again, on illness that is, or with it. I’ve been inundated with symptoms. Another day of no moving or talking, constant exhaustion, weakness. In the past few days the large movements have come back. Today I was a buzz of zaps and weakness and sticking my tongue out all the time. In between I managed to do things. I went to therapy, then to Quizno’s (couldn’t breathe), then to the beach. I lasted about 20 minutes and climbed the stairs. Quite a feat. Went to the bay to see the big ships with Mom. I walked all over Target and made it almost to the checkout at Albertson’s before almost collapsing. That was nice. Zapping all over. Crashed in the car. Some more movements tonight and now I’m okay again, minus the frequent unwarranted blinking, grimacing and sticking out my tongue. I wrote on FB tonight:
In between God’s version of invisible lightning dances and frog imitations, today I saw Jim, went to the beach, looked at that big old ship that’s here from Portugal and went to Target and Albertson’s. Long but very good day. Tomorrow’s Mom’s birthday. Hopefully it will go well.
My primary goal, after staying alive, right now is to have fun. Followed by being with the people I love and staying away from the people who bug me. On any given day, just one is enough. But two or more is great. I told Jim today it was frustrating thinking I was going to die Saturday night (due to fucked up vital signs and the inability to breathe) because I actually like my life right now. He said he’d never heard me say that before. That was powerful. I’ve been with him for a year. And I don’t think I’ve felt like this before. I like my life when I’m doing things I love. I don’t WANT to die right now. And that’s a good thing.
I said that I’m trying to make the best of it, of being sick. I don’t know what it is and even if I did or when I do there’s probably not much I can do about it. He said, “It doesn’t sound like there is a best.” But he’s wrong. There is. It’s the music.
My mom doesn’t understand why I go out when I can barely walk or breathe. I keep trying to explain it to her. I don’t need more sleep. I could be sick anywhere. It doesn’t matter if it’s here at home or at a restaurant or concert. But I’m so much happier when I’m sick to live music than when I’m just sick at home. The music is healing. Just for a moment, nothing else matters. I can just be free. I can’t dance right now. But I can still hear the music. And trust me, I need it.
I’ve been working on this project for a few days for a friend. I’ll post all about it when I’m done. It’s meant to provide comfort, but it’s providing comfort to me. We talked about codependence today and giving versus receiving. Jim asked if the drama is really worth it. And right now, I think it is. Cuz if I can’t have what it is that I need right now, having something is better than nothing. My friend was telling me about the 5 Love Languages last week and I took the quiz on the website. In descending order, mine are: Quality Time, Words of Affirmation, Physical Touch, Receiving Gifts, and Acts of Service. I think it’s kind of a pecking order because if I can’t get quality time or words or touch I give gifts or do service. I need to give. But I need to receive as well.
I was listening to Celine Dion and crying last night with the main part of the project I’m working on. There is this song of hers that always gets me. “I Want You to Need Me.” (whooooooooooo…) Just listened again. Makes it hard to breathe. Sometimes I just want to scream, “What do you want from me?! Please, whatever it is, just tell me. Let me give you something or do something for you so you’ll spend time with me.” But I’ve realized the people I want to need me, they don’t want anything from me. There is nothing I can give to get the time that I need. And they don’t have that time to give. I’m just along for the ride. But until I find or get something, it’s a ride. The music. It helps.
M- posted today “Make a Wish!” and I held my breath in anticipation and excitement, then paused. What should I wish? I was torn between two things – my friends in pain being happy or my health. I wondered if not putting them first made me selfish or if I could find a second thing to wish on, but I settled for wishing for them first AND me. I’m getting there.
Tomorrow is Mom’s birthday. The gift I got her requires energy, which I don’t have, so I hope she okay for postponing it. Thanks for reading and sharing your time.
PS – I attempted to read a book today. Remind me not to do that again for awhile.
© Michelle Routhieaux 2010