I’ve lived with relapsing-remitting MS for the past twenty-five years of my life. Living with debilitating fatigue has been the single most challenging aspect of adjustment to this chronic neurological disorder.
Some people aren’t aware that fatigue is the number one reason why individuals with MS are awarded full disability benefits. I am now one of those individuals.
Countless times, I’ve wished that there were a different label for this symptom. Using the term”fatigue” is simply not an adequate description. Everyone has had the experience of feeling tired.
MS fatigue is qualitatively different from ordinary fatigue. It is an all-consuming, total body exhaustion, combined with debilitating weakness. It predictably slams into me, every single day of my life, after periods of only minimal exertion.
It mandates that I stop whatever I’m doing, and simply lie down. No further activity is possible, no matter how much I want to believe otherwise. No matter how much I try to push myself to keep going. I have often thought that others think that I’m exaggerating the impact that severe fatigue has on my life. They see me take part in activities, appearing lively and animated.
What is typically unseen is how crushing the fatigue is when it finally hits me, as it always does. I’ve struggled to even drive home in such a state, given my bone-crushing exhaustion.
My activities for the day are essentially over at that point. I simply arrive home, and go to bed. To someone who fails to understand how truly devastating MS fatigue is, it might appear that I am simply lazy, unmotivated, or depressed.
I find my persistent fatigue to be very depressing, even after all these years of living with MS. I deeply resent the deep chasm that exists between all that I’m motivated to do, and what my impaired body will actually permit.