Autoimmune Fatigue

Salvador Dali, Sleep

Today is a what I think of as one of my bad days.  I woke up feeling fine, had some coffee and read the news, and then attempted to go for the morning walk with Siris.  Then, I wasn't fine.  Each step involved a deliberate effort to propel myself forward, and I felt like I was seeing the world through fogged up eyes.  I had to work at keeping my eyelids up.  I made it about 1/8 of a mile and I had to turn around and come home.  I felt like I could have just sat down right there in the middle of the driveway and fallen into a deep sleep.

Each of the conditions I have has fatigue as a symptom: demyelinating disease, fibromyalgia, psoriatic arthritis, and vasculitis. I've undergone several sleep studies, one of them was a multiple sleep latency test.  In that test, at the center, you sleep for a full night until you wake naturally, then you have a short period where the lights go on and you sit in bed.  Then they shut off the lights, you lie down, and they see if you fall asleep again and if so, how long it takes you.  After another short period, they wake you up and you go through the cycle up to two more times (it stops before that if you don't fall asleep during one of the rest periods).  During my study, I slept the full night, and was asleep again in under five minutes each time they turned off the lights. This condition is known as hypersomnia--if I had a few other symptoms in addition to the sleepiness (such as drop attacks in response to strong sensory stimuli or paralysis upon waking), they would call me narcoleptic.

I remember when this symptom started, back in high school, when I suddenly needed to nap every day after I got home from school.  It worsened over time, and is especially aggravating during the afternoons and during hot weather.   I find it impossible to stay awake on airplanes and during long car rides.  I don't drive some days, and I avoid driving in the middle to late afternoon because I find it nearly impossible to keep my eye lids up.  I fall asleep during professional meetings and conference talks. I sometimes joke that if I had to go back to elementary school and start over, I'd never make it because I'd fall asleep in all my classes.  It was bad as a professor because I'd have many days when I'd sit in my office preparing for a class and I was trying so hard to keep my eyes open that I'd cry in frustration and pinch myself and guzzle down the caffeinated sodas. When I'm in that state, I can't think clearly and speaking is very difficult.  It's hard to remember my name or what I was doing two minutes previously.

I've heard some people with similar fatigue conditions say that physically, it's like having the flu.  That sounds about right.  Apart from the psychological elements, it's like your body is so weak it's difficult to hold a book in your hand, to sit upright in a chair, or hold your head up on your neck.  Your muscles feel like they've turned to rubber bands, and your limbs feel like they're tied to strings and weighted down with concrete blocks. 

But on the outside, you look just fine, as if there's nothing wrong with you.  And it's completely unpredictable when the fatigue will strike (though mid afternoon is, as I mentioned, always a likely time).  You could be standing in front of a classroom of fifty students or most of the way through a grocery trip with your cart loaded; or driving some place several hours from home, about to head out to a concert you paid and planned for months in advance, or walking into a conference room filled with colleagues for a job interview.    Or having a conversation with someone you love about something important.  And suddenly, you turn to mush.  Your body and mind stop working.  If at all possible, you excuse yourself and go lie down for a bit until it passes.  If it's not, you have to stumble through whatever you're doing and hope like hell that no one notices. 

Just about every day, I have a period of time when this happens.  Sometimes it lasts just for a few minutes, it passes, and I can go on with whatever I was doing.  More often, I have to go lie down and rest anywhere from half an hour to four or five hours.  It's fairly predictable that I have at least one day per week that I lose because, after waking up after a full night's sleep, I'm so exhausted I have to go back to bed until mid to late afternoon.  I get up for an hour or so, then need a nap for an hour.  I also go to bed early on those days, sometimes at early as 7 p.m.  During difficult weeks, I may have three days like this.

In the several months right before I stopped working, I felt that tired every working day, but I still had to commute back and forth, teach, and do all the other things that faculty do, along with carry out the activities of managing a household and having a life.  I cut anything superfluous out of my life so that I could expend as little energy as possible, and my cuts got more and more dramatic over time, as did my emotions and fatigue.  In the end, I had to stop going in to work, and doing anything beyond the absolute basics in my work and personal life. Even now, on my non-bad days, the fatigue leads me to nap daily, for about two hours, and sometimes again in the evening. 

It's interesting to me now to read back over what I wrote and published during that time.  I see how I minimized the negative and focused on the positive, and I remember what it was like, that I didn't want to reveal exactly how traumatic the process of disengaging from my job was.  I just plain left out most of what was going on behind the scenes that led to the decision to radically simplify my life. 

About the fatigue:  It's important to point out, to those who haven't experienced it, that it's not the same thing at all as depression or feeling sleepy after a long day.  It's an undeniable force, like an enormous, crushing wave that rolls down on me when I'm strongly motivated to do things and highly engaged in whatever activity I'm doing,  and I fight like hell to keep on with it.  But even when I'm successful with keeping on with it, I'm about ten percent there; the other ninety percent is struggling to maintain basic physical and cognitive functioning.

Some Background Reading

Read about fatigue and multiple sclerosis/demyelinating disease, from the National Multiple Sclerosis Society: What Makes MS Fatigue Different?

About Fibromyalgia and Fatigue, from WebMD:  Fibromyalgia and Fatigue

The Burden of Psoriatic Arthritis, from the National Institutes of Health

Vasculitis and Fatigue, from Vasculitis Foundation Canada