Fatigue; I made myself a promise this week, in bed staring at the wall, that I would try explain fatigue. The official definitions use words like “tired” or “boredom” which means that either they need to come up with a new word (“soul sucking energy vortex”) or the definition was made by people who know nothing of fatigue.
There are so many conditions that have fatigue; I don't know what they all feel like. I read once about neurological fatigue which said, “Fatigue is such that if a fire alarm were to ring letting you know the building was on fire, it would make no difference, you would be incapable of moving.” I think often of what they referred to as “battle fatigue”; soldiers not even flinching when bombs exploding near them would shower them with dirt, their eyes a thousand yard stare as they just keep going. That’s all that matters; keep going.
This last two weeks I haven’t been overly sleepy (managing 10-11 hours a day, which is enough to survive), nor depressed. I just can’t......do. People tell me to go places and they push me there and I focus on that and I seem almost there mentally and they come back five or ten or thirty minutes later and find me leaning over staring into space. Sometimes I try to find a wall so that I don’t fall out of the chair.
It’s odd, I’m so starved for interaction that when a home care worker came on Monday, I stayed upright so I could say some vague nonsense, she left to do my laundry and I laid my head down on my knees in the chair. I wasn’t bored, I wasn’t really anywhere. I had no sense of time. I knew that she might come back, or someone might come back today. Was there anything else to know?
By the end of the day, combined with the pain, I have been unable to control my trunk, my neck. I have been literally poured into bed. I live in the time between each breath. My face is expressionless as the tears roll down the sides of my face. I ask them to promise me they won’t leave me like this; staring up into the darkness for hours. We try another pill, another pain pill, another sleep aid. It’s been an hour. It is like this many nights; sometimes many nights in a row.
Earlier this month and last month, I would be too fatigued to breathe, or rather, my lungs couldn’t expand and I was too fatigued to stop from choking. I didn’t even really feel anything, just the floating in the darkness. Good thing it takes several minutes to die. One home care worker grabbed me by my hair to lift my head where it had fallen over a rail, obstructing my windpipe. “It took me a while to figure the noise out.” She said. My throat had made a clicking noise.
Linda’s observation is that fatigue is the time after you have fought to stay upright and lost. That it has spread to your whole body which is now a dead weight. Sometimes, I think there is this little ball of energy, and the line that lets you touch a bit of it stretches and stretches like taffy. This is when I stare at the screen, watching some inane US series, enough energy to twitch a finger on the roller ball. I have to shut down everything to keep that line connected. Sometimes the line breaks and Linda comes in to find my head lolled sideways. I’m lucky to have Linda. Without Linda, I would stuck in bed. We have a special chair that cradles my body and supports my head. She can put me in it and in front of the computer. She talks to me. I seem more human somehow sitting up (well, sitting at an angle technically). When she needs to she can read my blinks and changes in breathing and we have a conversation, like a “real” couple. Fatigue doesn’t allow for a lot of dignity; Linda gives that back to me.
What don’t people get? Hmmm. I think they think I should get some sleep. They can’t imagine waking up like this. Can’t imagine that by the time I get dressed, brush my teeth, wash my face, go to the bathroom, have a cup of juice, take my morning pills and move a total of 40 feet that three hours have passed. Actually I can’t imagine it. What do I do in all that time? Well, drop things a lot of the time (at our house we call this “The dropsy’s”). So some days the time I stop brushing/grooming my hair is the moment I can’t lift the brush above my shoulder. That will do. I rest between attempts to put in an earring. I can only hold my arm and hand up for so many seconds and I can’t seem to find the hole in that ear. Stop and rest for a few minutes. It is insane. I know that.
I just have these rules. Every day I have to get up (if possible), brush teeth, put in contacts, brush hair, a touch of foundation, some lipstick if I am planning to go out. I get dressed, I put in my earrings, I put on a headband. I drink some liquids, preferably before 1:00 pm, and have my “morning pills.” At least three times a week I go out on my own, downhill to the video store, and back. A 17 minute round trip. Then it is time to sleep again. I take out the earrings, I take off the headband. I sleep. I try to get up by 6:00 pm; 8:00 pm at the latest. Three times a week I shower. That adds an hour usually.
I do have energy, I have it in hours, groups of hours, sometimes even a day without fatigue. I go out, I chat, people want to know “what have I been up to?” Uhhhhhhh……… They think what they are seeing is how I am all the time. In a way I envy these people, those who only know the best of me. Instead by the time I get up and partially dressed the phone rings. It is some health care person who is letting me know they have booked another appointment for me. To get there requires two bus transfers. The last time I went to this meeting I was told, “You don’t seem to be making an effort.” The worker seems miffed I am not excited about this meeting she has scheduled for a time convenient to her. “You’re not my only client!” She says before hanging up.
All I can think is “Thank God!” Back to getting dressed.
Please add your experiences.
20 hours ago