In contrast to the lack of effective remedies in health food stores, we currently have effective treatments for fatigue. Amantadine is a drug that was approved more than 35 years ago to prevent and subsequently treat influenza. It has also been proven to be of benefit in reducing fatigue in MS. Drugs such as amphetamine and Ritalin have been used, but none is as safe and well tolerated as amantadine. Moreover, habituation to Ritalin and amphetamine occurs quickly. More recently, modafinil (Provigil), which was approved for management of narcolepsy, has been prescribed in MS with limited effectiveness. Tolerance seems to develop quickly in some patients, and higher doses are often not well tolerated. Some patients do experience a sustained improvement. Importantly, the drug is relatively expensive.
My family and I refer to fatigue as "fat-goo" after a kind, but inexperienced, nurse trainee who was unfamiliar with the word pronounced it the way it feels—like I'm trying to go through fat and goo to function. I am unable to will myself to do something that I feel I should otherwise be able to do. What I find most difficult about fatigue is managing it psychologically. I get tired of being tired. Sometimes I feel as if I should try harder to get '"through the goo," but usually when I try this I end up falling, dropping something, and overloading cognitively. Then I have more to do when I am functioning again.
Fatigue is also hard on others psychologically. It is an invisible symptom—-part of the "but you look so good" phenomenon. This is when well-meaning people will look at me and say to themselves or to me, "I would never know you had an illness; you look so good." They have no idea how hard it is to function and perform everyday tasks such as brushing my teeth, getting dressed, and sitting up in a chair—much less walking.
I treat my fatigue with Amantadine, caffeine (preferably Cuban colada), and sugar in a form that I can carry with me and take in small portions, such as M&Ms and jelly beans. These "medicines" do not always get me through, but they help. The other remedy for fatigue is getting help—volunteer and paid. For me, one of the biggest parts of acceptance of MS has been asking for help. I am a very private (at least before contributing to this book) and independent person. The balance and choice are between help and independence, need and want, staying in the world and isolation, and safety and danger.
I have certain activities that I prefer to do alone but can no longer do safely. Thus, I forgo the activity, modify it, or have a "spotter" at the ready. Take, for example, showering; it is not safe for me to shower alone; however, it is an activity that I need to do, and my husband often travels. Thus, in lieu of dirt, when I shower, I have someone with me. I call someone when I get in and when I get out, or I have someone on the speakerphone. My sister, who lives nearby, is a CPA; thus, I know if I want to shower during tax season, she is at her desk at all hours. One time I called her back at the end of my shower, and I said, "I am out. I am clean. I am wet, and I am naked." After a pause, I heard discreet coughing in the background, and she said, "And you are also on the speakerphone in our conference room." I have not visited her at work since.
For activities I should not do alone I have wonderful friends: one who regularly gets up at 5 AM and another with whom I bake, bike, and play bridge. My family is very willing to keep me company doing activities that they had not done previously. One sister started ballet in her 40s, and my father began yoga in his 70s. Before taking me to the MRI the day I was diagnosed, my father had never accompanied me to a doctor, much less been part of the visit. Now he goes with me, and sometimes I even allow him to ask questions!
During a long flare-up, we decided to hire an aide for one day a week. It was hard to take this step, but those around us expressed relief and voiced surprise that I had not done this earlier. I was blessed to find a nurse who is flexible and understands my situation. During bad days she gets me up, does range of motion exercises, makes breakfast, and gets my medicine. On the good days, we have fresh-picked strawberries, deliver food to shut-ins, and run errands. When I told my family about hiring her, they were at first very defensive and felt that they should do these things with and for me. Now that time has passed we all have experienced the benefit she gives us. I am more independent and physically safer. My family members have one day a week that they are not on-call and can relax knowing that I am with a great professional. It helps, and we are all less
Was this article helpful?