The Bugaboo of Fatigue

Why am I so tired all the time? I know, it goes with the paralytic territory, but like Charlie Brown and the football gag where he lands on his backside every time, I’m always shocked when all of sudden I feel like I just hit the wall at the Boston Marathon. It is infuriating that I have to stop my day, every day, to take a nap and recharge what batteries I have. A late friend of mine, actor/’writer Jim Troesh, a high quad, once told me that he was asleep more during the day than he was awake. Despite what I do, it seems like I’m getting there.

What’s really bothersome about fatigue, as opposed to, say, an infection or a wound that won’t heal, is its psychological impact. It is, in a word, demoralizing. We are taught from an early age in this go-get-‘em society that if you are tired when you shouldn’t be, you are a) lazy, a serious moral infraction, b) staying up too late watching TV, or c) in some way responsible for being so “weak.” This is hardwired into the brain, at least my brain. Napping is for retirees who have run out of juice. For the rest of us, it is an indulgence or luxury-or both, and from the workaholic Calvinist perspective, you are wasting your life away.

But why is this fatigue happening? And what can you do about it?

Let’s ask the experts.

Benjamin Greenberg, MD, MHS, Associate Professor, University of Texas Southwestern in Dallas, does research and provides care in the areas of mobility disorders and specifically, neuroimmunological disorders like transverse myelitis, neuromyelitis optica, encephalitis, multiple sclerosis and infections of the nervous system. Since I have transverse myelitis, he could explain at least my situation, if not that of a wide swath of the paralysis community.

Here’s why you are most likely to be abnormally tired, says Dr. Greenberg. By far the number one cause of chronic fatigue is sleep disturbances. You are most likely tired because you haven’t gotten enough sleep. You may think you are sleeping, but often you are only semi-conscious, wiggling around, waking up for brief interludes. Sleep has to be undisturbed for long periods of time to be restorative. Three trips to the bathroom in the night will throw you off. I myself have trouble sleeping because of general discomfort, specific muscle aches, and the fact that I wear a C-PAC mask every night. Just fiddling with that thing wakes me up two or three times a night. Spasms, neuropathic pain, anxiety, depression, and stress may also be factors.

The number two reason, especially for those with mobility disorders, is excessive energy output. You are burning a lot of fuel to move around while all or half of your body is immobile. According to Dr. Greenberg, for every common activity, from using the facilities to turning over in bed, you are using up to ten times as much energy as a non-disabled person. Ten times! It makes me tired just thinking about it. Take, for instance, a simple activity like transferring into a car. If you are non-disabled, getting in a car is merely plopping down on the seat. But the act of transferring involves the actual transfer itself, breaking down and putting the wheelchair someplace, and doing the reverse when you get out again. Do that eight to ten times a day – going to the doctor’s office involves at least four transfers – and it adds up.

Thirdly, many common medications can engender fatigue. I forgot to ask Dr. Greenberg for a list. Next time. And the right or wrong diet can have a blatant effect. And if you have a neuroimmunologic disorder, there may very well be an additional factor: residual immune-disorder effects on the brain leading to fatigue and depression. This is not a scientific certainty but a well-shared thought among medical researchers. Future research is needed.

Fixing the problem, or at least mitigating it, is essentially the reverse of those factors. Get 8-9 hours of pure sleep every night, and if not, there are a million experts out there to help you do it. Get serious about it. Don’t think you will “catch up” down the line. And be very careful with anything you ingest that can disturb your sleep: alcohol, recreational drugs, too much liquid after six, even light pepper-uppers like Focalin.

Though it may seem counterintuitive and you are probably sick of hearing this mantra, you pretty much have to exercise. Get into a vigorous exercise regimen like your life depended on it, because it probably does. Dr. Greenberg says to look at the energy you store in exercise as income and all of your daily activities as expenses. Build up those energy savings. You are sure to need them.

In my own case, exercise is the best antidote to sleep deprivation that I know of. Besides making me stronger and marginally less tired during the day, it helps relieve tight muscles, stress, depression, and feelings of self-inadequacy. I slack off like everyone else, but have no illusion that I can avoid it for very long. If you want to live well and sleep well and at least, in part, mitigate the bugaboo of fatigue, exercise is not a bad place to start.

Now it’s time to take a nap.

~ Allen Rucker contracted TM in 1996 at the age of 51, and was paralyzed from the attack at the T-10 level.  Allen published a memoir about his life after getting TM; “The Best Seat in the House.”  It is now available in paperback.  As his memoir so brilliantly conveys, Allen is on a journey.  That journey has taken him into a life as a speaker and an advocate for the transverse myelitis and disability communities.  Through his many speaking engagements, his appearance on the Montel Williams Show, and as a contributing writer for ABILITY and New Mobility Magazines, Allen is raising awareness about transverse myelitis.  He is the author and co-author of numerous books of humor and non-fiction. “The Sopranos Family Cookbook,” one of three books he’s written about the Sopranos, was a New York Times #1 bestseller.  Allen is the chair of the WGA Writers with Disabilities Committee.  He lives in LA with his wife, Ann-Marie. They have two sons. Follow him on Facebook and visit his website for more information.

This blog was originally published in the Life After Paralysis blog series on the Christopher and Dana Reeve Foundation website. Click here to view the original article.