I sit, and my family moves around the house, carrying on with a normal day. Children play, my husband bustles around cleaning, picking up toys. Friends come and go, family members chatter on the phone. Children are getting ready for school, a trip to the park, or horseback riding lessons. All the while, I sit.
It is a feeling like no other, this inability to get up and take part in my life. This experience of being an observer, rather than an active participant. My mind wants desperately to get up, to join in, to be there instead of here. My mind urges me, "Get up! You can do it! Let's go! Don't miss out!" But my body doesn't listen. My body has a mind of its own now.
MS fatigue has crippled me at times. This is not what I imagined when I was first diagnosed. I imagined that my mind would be the same, but I would lose specific functions here and there. I pictured losing the strength in an arm, for example...but retaining all of my other functions. I imagined feeling a weakened leg on occasion, maybe some blurry vision, but I would basically be the same person. I have discovered, as I am sure you have, that fatigue can be the biggest crippler of all.
My life feels like a movie at certain moments. It is as if I am sitting in a theater seat, watching images on a screen. The only difference is, the scenes passing by in front of me are my life. Laughing, running, spinning, jumping children fly past me, friends call, invitations are declined. And my internal voices do battle. The mind vs. the body: The epic saga continues.
How do we cope with MS fatigue? Are there any good answers? Often, we ask ourselves whether we are just being lazy, or could we be clinically depressed? The answer is typically, neither! 80% of MS patients suffer from fatigue, and it isn't your average, everyday exhaustion. It is specific to MS, and incredibly debilitating.
According to the National MS Society:
"In addition to these sources of fatigue, there is another kind of fatigue — referred to as lassitude — that is unique to people with MS. Researchers are beginning to outline the characteristics of this so-called "MS fatigue" that make it different from fatigue experienced by persons without MS."
Generally occurs on a daily basis
May occur early in the morning, even after a restful night’s sleep
Tends to worsen as the day progresses
Tends to be aggravated by heat and humidity
Comes on easily and suddenly
Is generally more severe than normal fatigue
Is more likely to interfere with daily responsibilities
MS-related fatigue does not appear to be directly correlated with either depression or the degree of physical impairment.
What can we do to manage this fatigue? First and foremost, see your provider. Make sure you aren't missing a treatable reason for your fatigue, such as a thyroid disorder, sleep apnea, or anemia. Once those causes are ruled out, our options (as always) are quite limited. Physical therapy might be helpful. Sleep regulation is incredibly important, and should be addressed first. Stress reduction and relaxation techniques may be helpful. Avoiding extreme heat is a must, as heat may dramatically worsen fatigue. In addition, several medications are approved for fatigue management. Provigil and Symmetrel are both FDA approved for treating fatigue.
Most importantly, make sure you are taking care of yourself in all the classic ways. Adequate hydration, nutrition, and rest are essential parts of your daily routine as an MS patient. Avoiding excessive caffeine and alcohol, avoiding smoking, and getting as much activity as possible are all effective in combatting MS fatigue. Though it may seem counter-intuitive, getting some degree of physical activity can actually increase your energy, even if it is the last thing on Earth you feel like doing. Getting up and off that couch and taking in some sunlight can elevate your mood.
Consider inviting friends to visit you at your home, if you don't have the strength to go visit them. Being completely honest is essential. Let your friends and family know the degree of your struggle with fatigue, and give them the opportunity to understand. We often jump to the conclusion that "no one gets it. No one will ever understand." Maybe they will if you give them a chance. Educating our family and friends about our illness is our responsibility, as patients. We should offer as much advice and information as possible to those in our circle. They will likely be happy to help if they can!