By: Meagan Freeman
When I was diagnosed with MS in 2009, I never would have imagined that my greatest challenge would be overcoming my own demotivation and fatigue. My struggle over the past six years has involved many physical challenges, but I have found that my mind can truly pose the greatest threat to my own wellness.
I have never been diagnosed with depression, but I do cope with extreme fatigue, and the symptoms can be very similar. It is often confusing for patients to determine whether they suffer from a psychological, MS related depression, or rather the well-known phenomenon of MS fatigue, known as lassitude.
I have made many lifestyle changes since my diagnosis, including adopting a plant-based diet rich in fruits and vegetables, exercising regularly, and challenging my cognitive skills with writing and academics. According to my most recent blood pressure readings (I also have hypertension,) and my cholesterol panel, I am incredibly healthy from a cardiovascular standpoint. However, the one issue that remains my greatest obstacle is fatigue. As I sit on the couch, my life often swirls around me at the speed of light.
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 and 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 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.
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 with MS.
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 ways to manage 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. It is important not to isolate and withdraw from friends and family due to fatigue. 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!
My own fatigue continues to be an ongoing battle, but with my Neurologist’s help, I am learning to manage my symptoms more effectively. I believe the most important thing to remember is that we are not alone. Many of our symptoms are entirely treatable, but we can never hope to see improvement until we reach out and ask for help.
*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.