Monday, May 18, 2009


My last post was bleak. Up until Saturday afternoon I was feeling at the end of my rope with the side-effects of plaquenil. On Friday I had a session of SRT (more on this wonderful relaxation technique in an upcoming post), which lifted my mood and helped me feel I was stepping out of the morass of crazy thoughts I’d been having since I started plaquenil.

But it wasn’t quite enough. I woke up too early on Saturday morning, feeling terrible again, spent too much time trying to get back to sleep, and by the time I was out of bed The Poet was heading out the door with a stack of books in his hand. He grumbled something about needing to have time to himself. I know from experience to let him go at these moments, no matter what I’d planned or hoped for the day. We call it “Poet Time” when he goes off for the day to read and write. He’s usually home around 4 and in a good mood once again.

I, however, was not in a good mood. I called friends to find someone to go for a walk with me, but ended up on my own, feeling more and more blue. I ran an errand, read, did yoga, cleaning the kitchen and tried to nap. I just barely dozed off and woke up feeling even worse. I began to cry when I got out of bed—and there were those crazy thoughts from the plaquenil again. At least I had sorted out that it was the plaquenil and not the state of reality that was turning my thoughts black, but it didn’t seem to make me feel any better.

“Just keep going,” I told myself, and started packing my gym bag, hoping exercise would help. Just then The Poet came home. I expected to find him cheerful, but he seemed even worse than he had been in the morning. I didn’t know what was going on, but I knew better than to ask. .

Usually on weekends we invite friends over and sit on the floor around our coffee/dinner table, we eat and talk and laugh and the time flies by. When it’s just the two of us we go out for Indian food, sit in a booth and read books together. It seemed like we were heading for the second option, which I didn’t think would lift either one’s spirits.

“Come on, let’s do something different,” I said. "Let's go out somewhere." I was willing even to splurge a little to get us out of this funk. After calling the opera and finding there were two tickets left for $300, we decided on baseball. There were plenty of Mariners’ tickets for resale on craigslist.

Leaving The Poet in charge of buying, I ran off to the gym for the quickest of workouts and then rushed back home. There was the usual hassle of taking all my medications and being sure I had my water bottle before we could leave, nonetheless I was excited. At age seven, I could recite the entire roster and vital statistics of the 1980 World-Serries Champion Philadelphia Phillies and I loved to go to the Baltimore Orioles games and cheer for slugger Eddie Murray.

Once we were on our way to see the Mariners I was truly happy. So of course I started to sing “Take Me Out to the Ballpark.” Only The Poet, being from Egypt, didn’t know the song. I tried to explain the importance of it to him, but he was still in a grouchy mood and didn’t want to listen.

“I know my own songs, but they’re from Egypt, so nobody can sing them with me,” he griped.

“But this is the baseball song—you need to know it if you’re a baseball fan!” I told him. It was no use. He wouldn’t let me teach it to him, which maybe is understandable, given the way I sing.

As we got closer to the stadium he cheered up. It was a beautiful, sunny evening, perfect baseball weather.

I called my parents and told them we were on our way to a baseball game. They said they would sing the song for The Poet. I handed the phone to him as they started to sing, but he quickly handed it back to me. There were baseball fans j-walking in front of us, a parking attendant signaling him to go one way and a policeman signaling him to go another. Better to be ignorant of the lyrics to “Take Me Out to the Ballpark” than to get into an accident on your way to the game.

We drove in circles and finally found a questionable parking spot on the street, then rushed to the stadium in time for the second inning.

It was as good as I had hoped. The Mariners didn’t win, but there home runs and double plays, and peanuts and crackerjacks (which of course I can’t eat anymore), and lots and lots of cheering. We did the wave, and when the seventh inning stretch came around, The Poet was surprised to hear the whole stadium singing my annoying little song. The lyrics were on the TV screen; he got to his feet and sang along. I looked over at him and he was smiling.


We went to bed considerably cheered up. As we headed home from the game I remembered the last baseball game I had gone, about five years ago, had been a disaster. To my Lyme-sensitive ears the roar of the crowd and the loudspeakers was unbearable— I went home exhausted and with a headache. This game had been no quieter, but entirely different. It had been fun. That is one Lyme symptom that has simply gone away—extreme sensitivity to noise.

I woke up too early again the next day, but instead of trying to get back to sleep, I just got up and started writing. When the Poet got up I suggested we go down to the Pike Place Market for breakfast, something we hardly ever do because I usually don’t feel that great in the morning. This morning I decided to ignore the aches and weariness, and I think just moving around a bit did me good. As the day wore on I kept waiting for plaquenil’s dark influence to take over my brain again, but it didn’t, nor has it today.

For the past couple weeks I have been working hard to combat plaquenil’s side effects—yoga, sauna, extra exercise, extra charcoal capsules and meditation. But sometimes what you need is to stop thinking about it all, break the routine and just have a good time.


Joe said...

Hi Naomi,

Sorry to hear plaquenil is driving you crazy. Your symptoms sound SO familiar.

One thing I wanted to mention / ask you about: You've mentioned many times about lyme-insomnia. I've never had trouble getting to, or staying asleep, before I got lyme. And not all the time with lyme, even. But the past few months it's been bad.

I have also had pain, which I've talked about as "lyme tendonitis", but most recently my LLMD is referring to as "nerve pain", because it comes and goes over periods of days--to quick for tendonitis to heal. But the pains have been like big toothaches, enough that I finally asked for something to help.

For the past two weeks I've taken Neurontin before bed, and it helps with the pain, as well as keeps me from lyme-awakenings. I sleep the night through, just a bit groggy on waking, but I seem to shrug that off within a few minutes.

Have you ever considered this? I hate the idea of using drugs to sleep, but at least this one's non-narcotic, non-addictive, and best of all, I'm so much more rested.

Hang in there.


Naomi said...

Hi Joe:

It's true that sleep is one of my biggest problems with Lyme. Sometimes it seems this whole adventure would be a piece of cake if I could just sleep all that I need to.
Up until now I have resisted offers to use pharmaceuticals for sleep because I'm worried about putting even more drugs into my system. Another friend with Lyme has tried the prescription drug route without any success, and given that naturopathy is working about 70% of the time for me, I've figured I'd stay with it.

But your Neurontin sounds pretty tempting. I just looked it up and it is definitely a chemical and you need to be careful when you come off it (according to Wikipedia). I'll ask my doctor about it at my next appointment. I'm glad it's working for you!