Tuesday, May 18, 2010

"Remember, insomnia is only a problem if you have a job or a reason to live."

I've been busy. Sure, people with CFS can be busy. When you need 12 hours of sleep each night, if you have one thing to do, then that day, you are busy.

As part of my quest for perfect health and immortality I thought it was about time I started exercising. Nothing aerobic of course, but something to at least "get moving" and "circulate the lymph" and maybe even reverse "the downward spiral of deconditioning" I'd been in ever since I was pretty much bed-ridden those six months.

I put it off for awhile because I wanted to find the perfect physical therapist or personal trainer, and a few months ago I did. Except she's not actually a physical therapist or a personal trainer; as she would say, "Animals have trainers, people have teachers."

Last week I had three hour and a half sessions. I plan on doing three this week too. I almost didn't make it this morning for my 2:00 appointment. I was still in bed at 1:30 when she called and asked if I could come at 2:30 instead. "Sure, no problem."

Her studio is right in my neighborhood, it's like a eight minute drive, (though if this wasn't LA it'd be a three minute drive) any longer and I could never keep it up. But the coolest thing about her is that she had CFS. I was skeptical at first, but I believe her now. I think she was skeptical of me too. We'd both met people who like to say they have CFS when they don't really.

She's largely recovered now, after 20 years. She works, takes long walks, takes out her own trash, cooks, shops, but still is careful not to take on too much. She attributes her recovery mostly to juice fasting. She wants me to get into it eventually, but I'm wary. I could say she is an inspiration, "If she recovered than so can I!" etc, but that's not how my mind works.

I did make it to my session today. It really feels good to be exercising again. Sometimes it feels like I'm working really hard, holding a lunge for so long my legs are shaking and I want to cry, but I've never been sore yet, so we aren't working too hard. We haven't pushed my limits, at least for my muscles.

I'm afraid I'm pushing some kind of limit though. It's 5:00am, I'm awake, and I feel fine. No desire to sleep at all. I wish I felt this good during the day. I do actually feel some kind of "energized" after a workout, but it isn't useful energy and it doesn't last long. I'm afraid I'm approaching serious day-night reversal again. I feel like I'm in school and it's the second week of the semester. Insomnia is so much less stressful when you have nowhere to be in the morning. (Or afternoon...) But I've scheduled physical therapy Monday, Wednesday, Saturday and acupuncture Tuesday and Friday. Thursdays and Sundays are my only days off.

I hope I get some sleep tonight, can wake up at noon, brush my teeth, take my medicine, get dressed, eat something, and drive myself to acupuncture, or call and ask a friend to drive me if I'm too brain-dead. Brain-fogged...

I don't want to give up on the workouts yet though. I'm already getting stronger. When I bend down to open the lowest dresser drawer, I stand up again without even thinking about it. There's a lot of little things like this that are tremendously encouraging. I'm hoping eventually it will really help with my upper back and shoulder pain, and maybe some of the pain, tingling and numbness in my arms and legs.

Maybe I should cut back to two times a week, but I'm going to try for three a little longer. This is my chance to really learn something, and thus feel a sense of accomplishment which can translate into satisfaction and happiness. It feels so good to be immersed in something to learn, to have a teacher again.

But it's not worth it if it pushes me back into nocturnalism. Nothing is worse than not being able to wake up morning after morning when you have somewhere you're supposed to be. Already my mornings are getting shorter and shorter. I have a feeling tomorrow I will jump out of bed at the last minute, take my medicine, and run out the door. I'll be a few minutes later, and I'll hate it. I won't shower, I'll feel dirty all day. And then there's a good chance on Wednesday I will wake up just enough to call and say "I'm not going to make it in today," and go right back to sleep until three or four pm. Or I might be too tired to call and just be a no show.

I know this pattern well. It's why I haven't tried to go back to school this year again.

I hate it when it comes to this. But it's either this or be pre-emptive by scheduling nothing, and I can only do that for so long too. There's still a part of me that doesn't know it's sick. It's been through a lot of disappointment.

I used to be able to deal with the day-night reversal a little better. I drank a lot of coffee and red bull, that helped.

I wrote this in early 2007, a few months after I dropped my classes mid-semester for the third time, to describe my "Denocturnalizing" process. I knew something was wrong with me, but I was a few months away from learning about CFS. I wasn't exactly blaming myself anymore, I'd realized by now my sleep problems were not ordinary, were beyond the powers of human discipline, but I still felt a sense of stigma.

Up early? Or up late?

People ask me this a lot even though they must already know the answer. Gas station cashiers ask when I come in at 3am to buy coffee. For all they know I could be up starting on some fabulous road trip, or my job as a morning anchorwoman. For all they know.

The coffee shop down the street opens at 6:30. I was there by 6:50. Apparently they've had espresso-banana smoothies all this time and I never knew it. So I had one this morning for breakfast. They're very good. I'll have to add it to my Map of Excellent Drinks. (The best bubble tea is in Cornell, the best chocolate milk in Syracuse, mocha colas are in Ohio Arabicas, etc.) There was one other person there at that early hour. She was wearing bulky headphones and typing on her laptop. (Non-macintosh)

More people started coming in. By the time I left at 8:30, there were about six people sitting around with coffee and newspapers and laptops. I watc
hed in amazement as they entered and exited, probably on their way to their jobs. I focused particularly on this tall bald man across from me reading the paper. He'd been there at least a good half hour. I wondered, does he do this everymorning? And I imagined myself asking him,

"Do you do this every morning?"

...and the conversation took off in my head,

"Do what?"

"This! Get up early, shower, put on a warm looking cream colored sweater, stop at the coffee shop, drink a red-eye and read the paper for a half an hour before you go to work?"

"Oh. Why, yes I do, more or less."


And then I'd turn to the girl on her laptop,

"Do you do this every morning?"

She takes off her headphones when she sees me speaking to her.

"Excuse me?"

"Sorry. I was just asking, do you do this every morning?"

"Do what?"

"Wake up"

"Yes I do. I get up every morning before I go to my job at the hospital."


"Why? Don't you wake up every morning?"

"Me? Certainly not! I haven't woken up the last four mornings."

"What do you mean you didn't wake up? What did you do?"

"Just kept sleeping right through until the evening. Eventually I would get out of bed, but by then I'd have been merging in and out between consciousness and dreaming for so many hours that you could hardly call it waking up. That certain verb requires the action of the transition from one state of mind to the next to be completed within a half an hour at the most."

"I guess."

"I'm only here because I've been awake all night and need to remain so for the rest of the day."

"Ok well, good luck with that."

And I sleepily journaled this a few months ago. I'd just seen the new Alice in Wonderland:

"Why, there's only one way to get to tomorrow, and that's sleep. Sleep is the only way to get to tomorrow."

"But I didn't sleep at all last night, and here I am."

"Are you?"
Title quote from an old Onion article.


  1. Your title cracked me up. It reminded me of my 16yo son's comment the other day (very funny, taken in context): "You're like not very good at living, are you." So true.

    I have tried numerous ways to work exercise into my recovery plan. Right now, all I manage is a little bit of yoga in the morning and some good relaxing stretches before bed. An hour and a half sounds like a lot to be jumping into. The thought makes me panic. It may not be the activity but the length of it that your body is reacting to. Just a thought. I'm interested to see how it works out for you.

  2. Glad you appreciated the title! Sounds like you are doing good with the exercise.

    A hour and a half is probably too much, I think it's showing. It was only supposed to be an hour so we're bringing it back down to that. And if I have to take it down more I will.

    Thanks Shelli

  3. Hahahaha I don't feel very good at living either Shelli!

    I also love the title, it fits right in with my life.

    I'm glad the exercise is helping a bit Alison!!!!

  4. Thanks Annie! I'm starting my third week and no big crash yet! fingers crossed.