For myself, living with multiple sclerosis (MS) for the majority of my adult life, the golden hour could be called by many other names: the lucid hour, the hour of possibility, the exercise hour, the only hour …
How MS Shrank My Days
Before diagnosis, but while definitely experiencing the disease, I remember feeling like my ability to make it through a working day was shrinking. I worked in a field where 12- to 14-hour days were not unusual. On both the early and the late sides, those working hours pressed in as my undiagnosed MS progressed. Caffeine intake steadily increased, to little if any avail. Planes and trains became mobile nap carriages, and still my days shrank. The usable hours became bookended by a haze of cognitive fog, visual distortions, and dread. It was like viewing time through a tunnel, with the edges falling in upon themselves … and it kept shrinking. I rose later and groggier, faltered midway through, and stumbled into the end-of-day stupor earlier and earlier. With life’s norms swimming in the confused waters of constantly turning tides, I found myself becalmed and bobbing, disoriented and depressed. RELATED: Share Your Tips for Dealing With MS Fatigue on Tippi
My Situation Hasn’t Changed, but My Coping Mechanisms Have
Nearly two decades beyond diagnosis now, little has changed about the situation, but my coping with it has assuredly evolved. I have learned the telltales and have found and created reliable detours. Like a storm reporter anticipating a hurricane’s landfall, I plan more flexibly and assess changing situations. The dwindling commodity of usable hours in my days has made me be creative with what I do have, if still covetous of what I no longer possess. My golden hour (or hours, when I’m lucky) are precious currency to be spent wisely or invested bearishly. A couple of days’ golden hours are set aside for contemplation and writing, a few for the kitchen, and some for moving my body in ways I still can. These are moments I look forward to and for which I grieve as they pass or, as they are wont to do on more occasions than I care to admit, fail to present themselves for use. Just as rain or wind can skew the atmospherics required for the golden hour to be a photographer’s panacea, a well-designed MS lucid hour can be fouled by a myriad of singular or combined factors beyond the control of a person living with multiple sclerosis. The hour of possibility can be put asunder by the most benign-appearing circumstances. My exercise hour can be spirited away on the wings of fatigue or some other thief. RELATED: Self-Care: The Key to Wellness When Living With MS
How We Preserve Our Golden Hours
But we go on, often by using the less optimal hours of the day to stumble through our required tasks. Or by paying for assistance to perform the mundane that must be completed, we free up quality time for what we might begin. Because that’s just what we have to do if we’re going to continue to live our lives with this disease dragging at our heels and endeavoring to tarnish the golden hours we have left. That, and all the while, we try to see gold in the rust. Wishing you and your family the best of health. Cheers, Trevis
