A Day in the Life of a PWC8AM - The gate down to the Hudson was closed, which happens every time it snows. We had to take the steep upper road, if we were going to go for a walk at all. Despite the CFS, I make myself take a short walk every morning. It's a chance for Nikki to run and for me to get a little exercise. And it's essential for me. Even when I'm feeling stiff, achy and awful, I feel a little better if I walk for ten minutes. But uphill?? Since I got CFS, Jim and I had only walked on flat ground, flat paths, even walks, no climbing. We started.
After the first few steps, I felt like I had coals in my calves. My heart was pounding and so was my head. I could feel my pulse all over my body. I stopped, panting. Jim stopped, too, when he realized I wasn't right behind him. The uphill path is beautiful. It curves up the Palisades, the cliffs which overhang the Hudson. It winds upward through woods which cling to the sides of the Palisades.
"I have to stop for a little," I gasped.
"You ok?" he asked, with a worried look.
"Not really. Let me just stay here for a few minutes and you go on with Nikki." I couldn't look at him. I looked away.
"I'll wait with you," he said, as he walked towards me.
"No!" I said, too loudly. Trying to control my voice, I added, "You go on and I'll just wait here. Nikki's almost at the top. You go catch up with her," I said, trying to smile, but not being able to.
How can I do this to him? He was concerned and always very supportive. I didn't want to look at him. His conciliatory behavior towards me was real. He felt badly for me that I was so impaired in everything I tried to do. And that's how it's been for the past three years. I can never predict what I can do or what will set me off. My feelings...Well, it's a little like having PMS all the time. I mean, ALL the time. At least I know what this is due to. I read that in PWCs (People With CFS) the blood flow to the brain decreases with exertion. Normally, blood flow increases to the brain. Not with CFS. If blood flow to the brain decreases, a natural concommitant is irritation, headaches, and probably other things I haven't yet identified in me.
It's very rough to be with someone when you've got this disease.
Very rough. It's rough to be alone, though, too. Probably worse. Jim couldn't be more understanding about what I go through. He knows that I wasn't like this before. We used to hike for two and three hours at a time and it was exhilarating.
Jim walked on up the path towards the top. I turned around and went back down to the car. Tears leaked out of my eyes and ran down my cheeks. It was cold out and I shivered. I wiped my face with my gloved hand. Sitting inside the car on the driver's side, I started to weep. I can still drive, I thought, but just for short periods. No more than half an hour. I know some people with CFS who take plane trips. I can't imagine that at all. Not with CFS.
I cried, I moaned aloud. I was alone. No one would hear me. I felt sorry for myself. That's not so bad, is it?? No, I'd given myself permission to feel sorry for myself.
I listened to the radio until he came back with Nikki. As we pulled out of the parking area, he put his hand on my thigh and it felt warm and loving. I felt a surge of anger. Why?? I don't know. Perhaps it's because I can't do the things I used to, the things I want to. Perhaps it's because I'm so dependent on him for most things.
9AM -As we ate breakfast, I felt irritated with him. Everything he did seemed to be an affront. I try to control feelings like these, but they come anyway. The worst thing is for me to say something, to give voice to these feelings, irritations. I hated watching the way he cut up the eggs with his fork, the way he added paprika to them, the way he sopped up the remainders with his rye toast. I know better, but knowing better doesn't seem to stop it.
The wave of exhaustion which had hit me on the path, seemed to be subsiding a little. I was still tired, very tired, but my dark, bleak mood was lifting.
"What do you have to do today?" I asked, as brightly as I could. Of course he knows when I'm feeling critical, angry and about to explode. This is normal behavior for me now, with CFS. I live on some kind of nervous edge, as if everything is too much, as if I were about to fly apart, like some spring-wound mechanism on the fritz.
Scapegoating, he calls it. It's not. It's just that he's there. When he was away in California to see his family a few weeks ago, I would explode, too. I didn't hit the dog.
"Well," he started slowly, so slowly, thinking about what he was going to do first, thinking of the words, "I've got to go shopping at the A&P. Then I'm going to work on that sign job for the realty agency.....What do you have to do?"
I thought of the friends I might call and the cleaning I should do.
Dinner would have to be pizza again. "I have a lot waiting to be done. I keep making a list and transferring the items to the next list. It's been going on for days..."
"I know. It must be so frustrating. How are you feeling now?"
"Exhausted, but a little better," I said, as I put the dishes in the dishwasher. He sat and watched as I cleaned up the breakfast table. At least I can do this, and efficiently, quickly, too. A year ago, I couldn't. I didn't have the strength.
Noon - The computer was on and I was trying to read. It was about noon when I heard Jim downstairs. I should go down and help him put away the groceries, I thought, as I turned off the computer. I had gotten two letters written, but hadn't paid the bills yet. Leave it!
When I came downstairs to the kitchen, he was eating a cookie, one of the big, oatmeal kind he likes. The bags were on the table, on the floor, on the counter. I suddenly felt overwhelmed, and sat down at the table. Jim sat down across from me, eating his second oatmeal cookie. I'm not going to cry, I thought. Why should I cry? He had already put the ice cream, the milk and yogurt in the refrigerator. I know it's not about that. It's just that I used to do these things alone, no help, unless I asked for it. I'd go shopping early, not like he does, which seems like it's anytime. And I'd put it all away, one, two, three. I got up and put the rest away, folded up the bags, felt a fury rising in my chest, like an explosion about to happen.
2:30PM - Mid-afternoon and the article I was trying to read made no sense to me anymore. I had to keep rereading. If I read in short spurts, it works for a while. I have to sit up at my desk and take breaks by playing a computer game, called Pipe Dream. You connect pipes before the white band comes to destroy them all. You win if you connect all of them, in whatever pattern, trying to get as many points as possible, before the white stuff flows through them. They have to connect. If they don't, the white stuff wins. Idiotic time killer. But it works for me. I've been reading a lot lately, doing it just like this. Two minutes of reading, two minutes of Pipe Dream. The kitty jumped up on my lap, and started purring loudly. She's so sweet. She puts her paw on my face to ask me to talk to her. Then she lies down on my lap, curling up to fit me and purring. I cuddled her and talked baby talk to her, with her head in the crook of my arm, my nose almost against hers. Finally, I put her down. I was so tired. I had to lie down.
3PM - Oprah's guest, talking about having been abused as a child, having recovered the memory through therapy. Switching channels, Phil has four men who call themselves God's gift to women. I opt for that, turning the sound down as low as I could still hear it. I'm just drifting now, the words from the TV combining with some dream that I won't remember later. The phone rings. I pick it up, my neck twisting as I do so. I hear Jim saying, "She's taking a nap now." My friend Claire's voice saying, "Oh, just tell her I called. How are you doing?" I carefully hang up, not having the strength to say hello, how are you.
Not everything has to do with CFS, though it does permeate my life. Some of the problems are ones that I'd have even without it. Also, there are times when I feel almost like normal, when I enjoy a few minutes without remembering that I have CFS. Those are few, though.
Yesterday, Jim took a lunch break. He works at home and eats lunch sometime around 1PM. I heard the sound of his guitar. That's rare. I listened for a few minutes. It sounded very good, very soothing. He was just doodling on it. I had stuff to finish at my desk, and it was almost time for my nap. Three PM is the outside limit for me on that. But 1:30 PM or not, work waiting for me to finish, I went downstairs to the sun porch, where he sat on the couch, playing his guitar. "Sounds wonderful," I said, with a smile.
"Yeah?" he said, a bit doubtfully, because he's always frustrated by not being able to play as he'd like.
"Yeah," I said. "I don't want to interrupt. Just play."
He played a bit, sounding like the Carter Family tape we'd heard in the car that morning. Then, he stopped, suddenly shy of me, shy from hearing what he hears as inadequate playing. "Is it in tune?"
"It sounds out a little. Why don't you tune it to the piano?"
"I can't hear whether the note is higher or lower. I can't match them. It's useless."
"Just tune the strings to each other," I told him.
"I can't. I just can't hear the differences."
"I'll help," I said and he began to tune the strings to each other, waiting for me to say whether they were in tune, whether to turn the key up or down.
He got it in tune and asked, "Doesn't this make you want to play?"
"Yeah, I'd like to, but once I start....I have to tune mine, too, you know. And it won't be in tune with yours. And I'm so tired. You play."
He played some more. Some blues riffs which sounded good. I did feel like playing and finally got up to get my guitar and tune it. I played a few tunes and sang.
"Don't you want to tune yours to mine?"
"I can't," he said.
"Oh, come on," I said, "I'll help."
We played together, I sang, he sang a bit, and it went on for half an hour. I was exhausted. I put my guitar away, told him I loved to hear him play, to please continue, that I was sorry I interrupted him, and that I'd love to hear it from upstairs. I've always loved to play the guitar and sing. I've done it since I was about twelve or so. Perhaps, in another lifetime, I'll be a folk singer. Wish I could have my old life back. I'd settle for that.
5:00 PM - When I woke up an hour later, Phil's program was over and the news was on. I ached all over, didn't feel refreshed, but knew I'd be better than I was earlier once I got up and moved around a bit. I dozed off again. When I finally got myself up, it was 5:15. I could see the light in Jim's studio. He was still working. He works in a converted garage, a little house with two rooms, a bathroom, a kitchen sink and a comfortable, upholstered chair and a couple of straight-backed, wooden chairs. He'd be over by 6, I knew. If dinner wasn't waiting, he'd make it. Or ask me if I wanted something brought in.
I thought about going down and making pasta and some salad, a light meal, which would be ok with him. He doesn't make as much of a fuss as I do about what we eat for dinner. When I was sicker, I needed to have a more formal meal. Without it, my days seemed to meld into night and sleep and the next day without any markers. But now, though I like to have a good meal, it doesn't matter as much. Probably it's because I'm cooking again now, once in a while. He cooked for most of the first two years that I had CFS. I like my cooking better than his, I must admit. Tonight it would have to be pizza, which it was.
I sometimes am not fit to live with.
Jim is the kind of person who's most often lost in his thoughts. Since I've often made a fuss about this, he's tried very hard to be there when we sit across from each other at mealtime. I can almost see when his mind starts to wander, though. And then my voice feels as though it loses sense. Meaning is gone if the listener isn't listening. And I have few listeners and people I can listen to. Since the CFS, I have had a hard time keeping appointments in the evening or even afternoon. I see so few people. It's all on Jim then.
7PM - Watching McNeil/Lehrer with Jim. We're both half-sitting up on the bed. Sometimes it's good to watch. We start to talk about whatever we're watching. Sometimes, even, I can feel the old enthusiasm for ideas take hold of me. This always makes me feel alive and I can talk for a while. But then, I lose my train of thought at times.
I'm lying on my side, facing away from Jim. He pulls up my sweater and the silk undershirt and starts stroking my back.
"Scratch," I say, feeling the warmth of his hand and the itchy places all over my back.
He scratches. There's a really bad itch right in the middle of my back, on one side of my spine. I couldn't possibly reach it, I know. There was a time when I could have done so fairly easily. Twenty-five years of yoga makes you very flexible. Ever since I got CFS, I haven't been able to do yoga. I've tried, again and again. It took two years of trying every so often before I read that diaphragmatic breathing is not what we PWCs can do, that our breathing is rather shallow. No wonder I can't do yoga. I thought it was my lack of concentration which prevented me from doing it. It wasn't. And this made more sense. There are times, a few minutes here and there, when I can concentrate. Even then, I couldn't do the yoga. Diaphragmatic breathing is essential to all the yoga movements. Take a deep breath in and release it slowly as you begin the movement. I can't take a deep breath in. It catches, it's forced, it just doesn't happen.
Jim is stroking my back again, his hand pulling at the waist of my jeans. I open the snap and loosen my pants. His hand slips down to cross the top of my behind. I'm feeling it, feeling like having him stroke me between my legs. I take my pants off, Jim helping by pulling on the legs. Then, I'm naked below my waist with my socks on still. My sweater and undershirt are pulled up over my breasts. I turn over towards him and he holds me, arms wrapped around me, one hand sliding down over my ass.
He's hard as he gets on top of me. I raise my legs to open them for him. I can feel the burning in my legs from the exertion, but I want him. He enters me.
Suddenly, I'm exhausted. I have to lower my legs. He accomodates me by putting his legs on the outside of mine, still inside me. His weight, even though he's resting on his elbows, is too much for me. I feel I will suffocate. I push at his chest. He knows I'm not pushing him away, knows that this happens often now. He gets off and I roll on my side, away from him. He enters again, from the back. It's fine, though I'm now very tired. Problem is that when I'm so tired, the feeling can fade, desire can leave. It does.
8:30PM- Time for me to get online again, to sign on to America Online. The story of my involvement with AOL would take a lot of writing, a chapter all by itself. To make it very short, my son Tom gave me the software to America Online and a modem, which connects the computer to the telephone. When Tom first hooked it up for me, I tried to find a CFS support group online. There was nothing. A year and a half later, after many tries to get one started, another PWC and I finally had our first session of the group. We had a handful of people then and now our mailing list is up to about one-hundred people. I also started The Women's Room, named after Marilyn French's book, and it's been running for almost three years now. Last June, CNN online asked me to run a women's issues conference, which I've been doing ever since. Tonight, our topic is called Mirror, Mirror:What Do Women See? I've done this one before, about self-image versus desired image. I could probably do it once a month, since we all think too much about how we look. The conference runs from 9PM to 10:45 PM.
11PM - I finally signed off. Very good session. Lots of participation, with some men there, too. But now I'm wound up. The sessions take a lot of concentration. Sometimes it's hard to follow the discussion if many people are typing at once. Why I can do this, and not other things, I have no idea. This is tiring to me, but not as exhausting as a face-to-face conversation or even talking on the phone for an hour or two. I can do it and, right now, it's about the only identity I feel is mine. I can't imagine what I'd feel like without doing these conferences. They take quite a bit of reading beforehand, in addition to writing back and forth via Email with guests who are scheduled for particular subjects. It lends a focus to my life, this online work, a sense of doing something good, something possibly even vital. Certainly, for me it is life-saving to have some involvement in the world.
The disadvantage is that I can't slow down fast enough, can't unwind quickly. I never could, even before I got CFS. But now, with the adrenaline coursing through me, I have to play Pipe Dream again. To finish a whole game takes about forty minutes. I sit and play and think about what was said in the discussion online. I'm finally unwinding, and pick up the book on dogs I was reading.
I lost the game on the sixth of the nineteen levels. Damn! I won't start another one.
It's now 11:30. Time for bed.
11:45 PM - Jim is curled up, facing away from the TV, which is still on. He leaves it on for me, knowing that I may watch for a while. As I slip into bed, I turn the sound down even further. He turns towards me, making a comfortable sleep sound.
"How did it go?" he asks.
"Fine. Really good tonight. Lots of people and a good discussion."
He's snoring. He didn't hear me. Or did he? He turns away again and I stroke his back. He murmurs appreciatively. The cat jumps on the bed and kneads the blanket. With my left hand, I stroke her. Jim is fast asleep. I am not. My eyes feel sore, they hurt. I watch Unsolved Mysteries. Robert Stack's voice makes me sleepy, always. I put in my night guard to prevent a sore jaw in the morning, take my glasses off, and turn off the TV.
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