Friday, November 5, 2010

A little better

I've been better. Maybe it's the cool weather. (Not today though, today is hot, and I'm feeling sluggish)

Proof of my betterness:

11 day road trip (8 days of driving, 3 in Seattle)
3 parties attended for Halloween
7,000 words written for NaNoWriMo

A few months ago I gave up Klonopin, and I can say now that was a mistake. I started back on it slowly to help myself start sleeping again at night and I noticed that on days I took it I always felt better. So now I'm back to taking Klonopin every night and it's great. Sometimes I take two. Last night I didn't take any though because apparently my CVS doesn't stock them anymore. Should be in today though. Maybe if I'd taken one last night I'd be well enough today to go to the pharmacy.

Instead I dreamed crazy dreams all last night. One was a return of the classic I've had since I first started getting really sick, basically, I can barely move. I'm extremely heavy. I have to meet my new college roommate and I can barely crawl across the floor to greet them. This time I was in my yard, gathering giant lemons that had fallen from my neighbors giant lemon tree. Only I find I can only move very slowly and so slow it is not discernible to the naked eye. And while I'm concerned about this inability to move in these dreams, I'm pretty blasé about it. It happens all the time. My main concern is how embarrassing it is. My neighbor walks by and sees me crawling around the grass, "Oh just gathering lemons", I use all my strength to say and sound casual.

I've been pretty much free of these dreams for a long time now so their return scares me a little. I'm afraid it's a sign I'm headed for another bad spell. I have another weird theory. I once read that estrogen is the hormone for inner visuals, so that's why women read more novels than men, they lose themselves more easily in vivid pictures of characters and settings in their head. I don't know. Anyway, Since I decided to do NaNoWriMo and have been trying to write four hours a day, I wonder if I've set something off in my brain and opened the estrogen flood gates and thus opened myself up to more vivid dreams and less restful sleep. It's just a theory...

In saner theories, it's been just about a year now since I started Dr. Cheney's protocol. He told me if I was to feel any different, it would take six months to a year or two years. And this past month, there has been a noticeable difference. Until then I kept getting worse, but now I think I can say, I'm better off than I was a year ago.

I've said NaNoWriMo twice now without explaining what it is. If you've never heard of it, it's this thing where everyone signs up online and pledges to write a 50,000 word novel in a month. To do it you have to average 1,667 words a day. I gave it a try two years ago when I was pretty much house bound, thought that would be the time. It was not. I think I struggled to get 600 words that first day and then I gave up. "NaNoWriMo frenzy" = not for CFS, I concluded.

Do you ever read author interviews about their writing process? They're always so modest. "Oh, there's nothing special about me. I just sit down to write day after day. That's the secret. You have to write every day."

I've been hearing this for years. I know David Sedaris always makes that point in interviews. But David Sedaris also has OCD. Everything he does he probably does everyday, exactly the same. With CFS, you don't do anything everyday. Which is sad news for anyone with CFS who wants to be a writer, or learn anything new, really.

I'm amazed I've been able to write about 1667 words a day. But each time I finish, that's my limit. It's beyond my limit really. If I ever missed a day, I don't think I could catch up. I don't even know if I'm going to make the minimum today. Too bad I can't count the words of this blog. It's fun trying though. Besides being hard on yourself esteem (novels written this fast are guaranteed to suck) it's given me something to do every day, like a job. A sense of daily regularity and responsibility I have not had in almost two years. It's just too bad that if I miss a day, and I will certainly miss more than one, I have no chance of catching up and "winning." Probably. Maybe I will drink lots of coffee the last two nights and write 10,000 words in one go. I haven't had coffee in three years so it should work pretty well on me. (I'm using green tea now for my caffeinated writing fuel now.)

Finally, the road trip. My friend and I had been planning it for awhile. We have quite a few trips under our belt. We used to sleep all day and drive all night. Usually turns at the wheel would be 8 or 9 hours. I once, by myself drove 17 hours straight, on no sleep the night before. It was incredibly stupid. I can't believe I did it though.

This time, I told her, I could do maybe two hours at a time max. And I was being optimistic.

As it turned out, she did do most of the driving, but I did more than I thought I could. And I hardly had any back pain at all. My back pain has definitely gotten better. Thank you pilates! All those flexible spine exercises are working.

The second night of the trip was bad though. I felt like I had a 102 fever. I was afraid I was going to get the flu and be stranded in Twin Falls Idaho for a few days with no health food stores. And I'd be stranding my friend too and ruining out trip. That night she carried in all the bags from the car, checked into the hotel. I just had to crawl into bed. I took extra Klonopin and inosine and didn't use the cell-signalling factors, something Dr. Cheney said to do last time I had the flu. I was sure as I was falling asleep I'd wake up feeling worse. But I felt a little better. It was still a bad and achey day, but I got over it quickly.

In Seattle I mostly kept up with my friends. One night I went to bed when they went out, but the next night I stayed out as late as everyone. (I'd also eaten a bowl of tapioca pudding with tons of raw cacao.) And when they went to EMP and the SciFi Museum I sat in a crumpet shop and drank tea. (I'd already been to the museums anyway.)

Overall I'd say the trip was a success. It was the first trip we actually were able to get up early and do most of the driving in the daylight. (Most of the time) So we could actually see the scenery and not just wonder about it as we drove through the dark.

So in conclusion:

Klonopin rules
I'm going to write a bad novel
I went on a road trip! Despite impossible odds.

The funny thing is I don't exactly feel good boasting about my road trip success. CFS has made me think of energy as a gift and a mystery. It's not something you have control over, it's not something to boast about. Not that I've been boasting, but I have been celebrating. But have I really had more energy, or am I just pushing myself? Which is not an admirable thing despite what the rest of the world may think, people who don't know about CFS. I can't be proud for pushing myself, and I can't be proud for doing nothing. I try to be proud for doing nothing, but, so far it's not working out.


  1. I tried to get my doctor to prescribe Klonopin for me, but she didn't want to right now. I'm going to push harder for it next time I go in, and if she's not responsive, it may be time to look for a new doctor.

    I'm doing a modified NaNo myself this year. Two sessions of 500 words each, and I may finish the novel I'm currently working on. I wish I could do the whole shebang, but I'm not there yet. So -- I'm wishing you tons of luck, and I hope you're able to keep up the pace!

  2. Modified Nano sounds like a good idea. I might decide to do something like that halfway through the month. Thanks for the well wishes, and good luck getting Klonopin :)

  3. I'm glad the Klonopin is working for you. I'm really excited that you are seeing Dr. Chenney. I love him.

    I think your trip was most definitely a success story. But you bring up a great point. Where is the tension line between pushing and having a better day. And here's the real kicker. How do we really know when the pay back always comes a day, or two, or three later.

    I love you belief that energy is a gift. That is beautiful and powerful. I think I may use that on my blog - if you don't mind. I'm going to ponder on it for a while as well.

    I hope you are having a better day today!

  4. And sometimes for me the payback comes three weeks later in the form of PMS that leaves me bedridden. Glad you liked the energy as gift thing. I'd love to read your blog thoughts on it. And today was better than yesterday, thank you.