As a T-10 paralytic, caused by the neuroimmunologic disorder, transverse myelitis, the thing that drives me up the wall is fatigue. It’s chronic, ongoing, and there doesn’t seem to be a whole lot I can do about it. It hits in the middle of the afternoon, around three, and if I don’t get off my tail and take a nap, I can still carry on, but at a much lower level of energy and attention. Problem wounds and infection, the major bugaboos of my kind of paralysis, come and go, and can be treated in a very specific way, but fatigue – it’s the kind of bothersome gift of wheelchair living that just keeps on giving.
It just so happened that this last weekend, there was a big MS conference in town and one of the leading experts on the biological basis of mood disorders related to MS and transverse myelitis, a cousin to TM, was speaking. His name is Adam Kaplin, MD, PhD, and he is a neuropsychiatrist at the Johns Hopkins School of Medicine and specializes in depression, fatigue, and cognitive impairment in CNS autoimmune disorders. Your own form of paralysis may not be neuroimmunological in origin, but Dr. Kaplin’s perspective may still help you understand your own fatigue.
I cornered the good doctor and asked him straight out, why am I so tired every afternoon of my life? I eat well, don’t overindulge in either alcohol or recreational drugs, and exercise religiously. What am I doing wrong? Is it perhaps a weakness of character? Out of self-pity, do I feel “entitled” to rest whenever I want because I’m paralyzed?
Dr. Kaplin, not one to mince words, reeled off five explanations for chronic fatigue in people with MS and TM. Here they are:
1. Paralysis puts a unique strain on your body, probably inside as much or more as outside. For instance, how does the blood flow back to the heart from your immobile legs? Contraction in the muscles of your legs doesn’t push it back up, that’s for sure. There are other muscles, including heart muscles, that have to do the job. You may not know what’s going on here, but you feel the effects. You also feel the effects of the daily ritual of hauling half or more of your body around, like transferring or lifting your chair in and out of a car or van.
2. Your messed-up immune system, if you have an immune-mediated disorder like MS or TM, continues to be overactive, says Dr. Kaplin, and places an on-going strain on internal processes. He didn’t have time to explain the biology of this, but I think I get it – your immune system is constantly on red alert and seldom takes a break to recharge. That’s got to tire a body out.
3. Or it could be due to the medications you take. Dr. Kaplan used the example of the anti-anxiety drug, Xanax, which, according to Wikipedia, is the most prescribed and most misused drug of its class (benzodiazepine) in the US. The problem with Xanax is that it is incredibly fast-acting and its effects wear off in a few hours. When the effect wears off, you have to recover from it and the recovery process is very exhausting, almost like a state of withdrawal. You can pop them all day, I guess, in which case you become addicted and when you stop, you’re not only beat but also sick as a dog. Other medications have less dramatic impact, but they can still wear you out.
4. Here’s a big one: clinical depression. Some of us are plagued with it because of the interaction of an overactive immune system and parts of the brain, something Dr. Kaplan knows a great deal about. Your own serious depression might rise from another source, but left untreated, fatigue is a major consequence. And as Dr. Kaplan is quick to point out, depression is treatable.
5. Finally, there is the problem of deconditioning, a state easy to fall into for someone who spends his or her life in a chair. Working out your body by long-distance rolling, swimming, or your cardio exercise of choice, may not eliminate fatigue (see 1 through 4) but it can certainly mitigate it, giving you more energy for more of the day.
Something that is very hard for me to truly believe is that the fatigue (and depression) I experience are not due to a personal character weakness, a lack of will or drive or something. It must be my mother’s mantra ringing in my head: “You are only as lazy and tired as you think you are.” But I’m not lazy, a slacker, a person overcome with self-pity, and I haven’t given up on life. And my guess is, neither are you. In other words, It's not your fault!
If you are paralyzed and struggle with fatigue, remember that you are tired for a concrete reason. Find out what it is and you will feel a whole lot better.
Note: One last thing: Dr. Kaplin has built a web site – mood247.com – where you can chart your own mood swings over time. I plan to do it. After I’ve gotten the hang of it, I’ll report back.
© 2013 Allen Rucker |
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The Best Seat in the House:
How I Woke Up One Tuesday and Was Paralyzed for Life