I have been wondering for quite some time how I can describe what it feels like to live in the grasp of MS induced cognitive impairment and fatigue. Though I pride myself on a good vocabulary, I find that the words available to me seem insufficient for describing these symptoms. I want to say that I feel as if I am stranded in the middle of an ocean with a working radio, but that even if I were able to muster the energy, I would have no access to the words necessary to call for help. I want to say that I feel as if I have not slept for days, as if my body is depleted of energy because in my time stranded in this ocean not a drop of fresh water has passed my lips. I want to deploy the metaphor of sun and salt leaching every ounce of energy from my body, leaving me so limp and confused that I don’t even know how to help myself survive. I want to offer these as descriptions of MS cognitive symptoms and fatigue, but I know that these metaphors reek of the kind of melodrama that makes them seem insincere and overstated.
Is it enough to say that even though this blog has become a lifeline for me, a way of connecting with people in a world that seems to bustle on at a pace that I can no longer maintain, fatigue and cognitive impairment have for the past several weeks kept me from it? I have come to my computer almost every morning, donned my Dragon headset, and attempted to compose. Until today, all I had for my efforts was a collection of unfinished, disconnected paragraphs. Anyone who suffers from MS induced cognitive impairment and fatigue will likely know what happened before they even begin to read the next few sentences. My concentration waned, I was overwhelmed by the simplest cognitive tasks, and much time was lost to events and menial chores that would in my life before progressive MS have been minor distractions in otherwise full and productive days. Each day at about midafternoon, it was clear that another day would pass without a completed post. I cursed my own limitations and told myself that I MUST publish a post the next day.
Of course, I know that no amount of determination or sheer force of will is powerful enough to stand against the paralyzing effect of MS cognitive impairment. Most people with MS will experience some cognitive symptoms as a result of the disease, and for many of us that means slowed thinking, speech and attention deficits, and frequent and intense bouts of crushing fatigue. Some of our friends and loved ones will, out of a generosity of spirit, attempt to normalize our experiences with these symptoms by comparing them to the slowing of cognitive function that often comes with age. Some might even liken MS fatigue to the fatigue they feel at the end of a busy day or week. These are in many ways useful comparisons that allow those who do not suffer from MS to begin to understand the impact of cognitive symptoms in the lives of those of us with the disease. However, MS cognitive impairment and fatigue differ dramatically from those experiences; they are inexplicable, ongoing, and extraordinarily intense.
Because those who suffer from these symptoms sometimes appear healthy in every other way, their cognitive impairment is “invisible” except to the extent that it interferes with their ability to complete tasks in a timely fashion and to avoid mistakes. The result is that many people with MS are accused of laziness and incompetence when cognitive symptoms interfere with their performance on the job or keep them from participating fully in their personal lives. Though I am hesitant to say that my need for a wheelchair is in any way positive, I do believe that my cognitive symptoms are often met with compassion because even people who do not know me well receive visual “proof” of my impairment. As I said in a previous post, strangers have even assumed that my mobility problems indicate that I am impaired in other ways. The fact that I am confined to a wheelchair, then, motivates even people who do not know me to respond with forgiveness to my forgetfulness, speech difficulties, and fatigue.
Cognitive impairment and fatigue were the primary reasons for my early retirement. A year or so before I was diagnosed, I began to notice a feeling like my brain was wrapped in cotton. That cotton was a barrier to the expression of my thoughts, for it stood between my thinking and my speech and many of my thoughts seemed trapped in the web of that fabric. The severity of this feeling varied throughout the day; it was less intense when I awoke in the morning and virtually paralyzing a couple of hours later. When I noticed these symptoms for the first time I was still working and my days were filled with intense cognitive activity – teaching courses that required deep concentration and on the spot responses to students’ comments and questions, and meeting one-on-one with students and colleagues throughout the day – so I chalked my cognitive problems up to stress and believed my fatigue was caused by overwork. As a result, I tried to “push through” and function at the level I always had. I soon found, however, that pushing through was not an option. Once the fatigue hit I was absolutely unable to function. I could not speak, I was overtaken by bouts of uncontrollable yawning, and I was overwhelmed by a need to rest.
I find it difficult to distinguish between cognitive impairment and cognitive fatigue. The two are inextricably intertwined in my experience; my cognitive symptoms are exacerbated by fatigue and the cognitive symptoms are themselves fatiguing. I am aware that my speech and attention deficits are ever present and that they are more severe as my fatigue increases throughout the day. I am also aware that each day brings a moment at which I have no choice but to rest and/or sleep. As my fatigue increases in the late afternoon so too do physical symptoms—trouble standing or taking the few steps from my wheelchair to the toilet or another seat, for instance. Late afternoon fatigue also brings with it double vision. These physical symptoms, then, are signals that whatever cognitive symptoms I am also experiencing are probably related to fatigue. Experientially, though, the distinction between cognitive impairment and fatigue is unimportant; what matters most to me is that I am forced to spend so many of my waking hours managing both the impairment and the fatigue.
Writing this post has been an exercise in managing conflict. On one hand, I feel the pull toward cultural imperatives to avoid hyperbole and to end on a positive note; on the other, I feel an abiding loyalty to others who suffer from these symptoms, a loyalty that can only be honored by resisting the impulse to understate and provide a “feel good” conclusion. Many of us have tried medications, supplements, exercise regimes, and changes in diet, but have not experienced significant relief from these symptoms. As a result, the scope of our lives decreases daily as we struggle against cognitive impairment that seems indescribable and against fatigue that itself robs us of the energy to even attempt that description.