MS is such an anomaly. No one can tell a person what the course of her disease will be, and no two people have the same symptoms. I’ve wondered at the suffering that people must have endured many years ago. Before the advent of MRIs, nobody could see any reason for a person’s dysfunction. It doesn’t take much imagination to envision the crazy-making experiences that many surely endured. “Well, Mrs. Smith, I can find no reason for your loss of balance.” “Unfortunately, Mrs. Jones, there are no indications of problems that might cause what you say is weakness in your legs.” Even today, more than twenty-four years since I received a diagnosis of MS, I still struggle to explain, indeed, to understand, what happens in MS. Doctors I have spoken to spout off textbook descriptions, as if they begin to convey what the person with MS experiences, but those don’t even come close.
In this post, I will attempt to explain what one of the most common symptoms in MS “feels” like: fatigue. According to the Webster’s app, the definition of fatigue is as follows:
The first definition is the one that I was after, but upon a second reading, the third one may better serve my purposes. “Very tired” is a good start, but “tendency…to break” is more descriptive. I used to object when my neurologist used the term fatigue, because what I experience really isn’t the state of being tired. I coined my own term, “paratigue:” “para,” which when appearing before a vowel, can mean altered, or abnormal, and “‘tigue,” to denote fatigue, the clinical part of this awful symptom. So then, altered fatigue. Abnormal fatigue. Because the fatigue that I experience is more about what I cannot do than about attempting to do an excessive amount of it. That is, I haven’t tried to walk 10 miles, which in most people, would produce fatigue of the extreme weariness type. I’ve tried to walk a very short distance, and that effort produced a broken feeling in my legs and trunk, as though I HAD walked 10 miles. But the weird thing is, I don’t feel weary, really, or even very tired. I just have great difficulty walking after about the equivalent of two city blocks; my body just won’t allow it. So I will sit for a few minutes and attempt to walk again.
The worst part of fatigue is how much worse it has gotten over the past couple of years. Three years ago, I would, indeed, grow fatigued much earlier than anyone would consider normal, but I could plan my activities, build in a few minutes to sit down, and nobody was the wiser. Now, I am essentially fatigued all the time. I still build in opportunities to rest, but they are visible to everyone. I use a walker with wheels, known as a rollator, because it has a built-in seat, and I use it to rest a LOT.
I haven’t gotten into many other factors which also affect my mobility, simply because I’m trying to describe what MS fatigue feels like to me. I have done a poor job of it, however. As I re-read what I’ve written, it doesn’t sound materially different from Webster: very tired. It’s just so vastly different from anything I ever experienced before I had MS, even after the most difficult physical exercise. I’m reminded of something I once said to my neurologist. I told him that I felt I was becoming a paraplegic in slow motion. He said I had described aptly what was happening to me. I wish he’d chosen kinder words.