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.

29 thoughts on “MS Cognitive Impairment and Fatigue
  1. Wow. Reading this post is validating, liberating, and terrifying. I am in the phase where I suspect my gaffes and spoonerisms are MS related, but I like to blame stress, lack of rest, and post-40 mind-mush. I have trouble at sporadic times with the oddly substituted word: always the same number of syllables and same initial sound, but bizarrely unrelated in meaning: Sandwich for suitcase; trampoline for triangle.

    • That’s part of the problem with the cognitive impairment, isn’t it? It’s hard to describe how we know that the problems really are MS related because so many people experience similar issues as they age. This is one of the reasons that our experiences of cognitive impairment and fatigue are so often misunderstood. Our descriptions of them strike a chord of familiarity, so it’s not always clear to others that what we’re experiencing is more intense and ongoing than would be expected with aging.

      It is true that our verbal gaffes can be quite entertaining – when they don’t leave us paralyzed and frustration.

  2. Marvelous. I wish I had said this myself. I’d say more, but, you know… I’m tired.

  3. Amazing and thoughtful as always – I love your blogs. You won’t be surprised to hear this but I SO appreciate your discussion of “invisible” forms of impairment and fatigue – it’s as if they, or those of us with “invisible” illnesses, don’t exist. It’s an endless source of frustration. It’s tiring having to explain it to people…people (including friends and colleagues) who mostly don’t take it seriously; who continue to question the “realness” of it regardless of how you explain it; who think they get it but don’t, and don’t bother to educate themselves; and who ultimately do not legitimize or really believe what you’re saying. It’s a sad statement that one needs to use a wheelchair to “prove” what they are experiencing physically and how they feel. Thanks so much for sharing this.

    • I hear you! The fact that I need the chair–and that the world is not built to accomodate it–is frustrating, but when I am reminded of what it feels like to have symptoms that are completely invisible, I become very cognizant that there is an oddly useful visibility associated with the chair. Odd, isn’t it?

  4. I don’t have much to say except that i’m still here, reading. 🙂

  5. As someone with an “invisible difference” who doesn’t have MS and doesn’t use a wheelchair, I thank you from the bottom of my heart for this post. Much love to you, Michelle!

  6. It sucks. How’s that for brevity?

  7. Coincidentally, I just woke up from a cog-induced sleep, opened my laptop and was greeted by this blog. Are you stalking me? J/K, but you soooooo ‘get it’!

  8. Although impaired, our brainwaves must be on a very similar track. I just had a talk with my neuro yesterday and got a referral for a Neuropsychology Evaluation and Cognition/Speech Therapy. Your post was so right on to what I feel.

    • I have done two of those–a baseline and then a follow-up a year later. The baseline is pretty useful; the follow-up (which showed increases in impairment) was disturbing, though. Good luck with the tests.

  9. Good to know that it is not just me but tough to accept. Tammy

  10. I mean this in the most respectful way possible–your incisiveness and clarity, your intelligent thoughtfulness, show the complete opposite of the devastating impairments you describe. As I am learning from you–it must have been so hard to do.

  11. Your description of MS fatigue is one I relate well too. It is an odd thing to try and explain to the wider community and sometimes even difficult to accept myself… it really is all consuming at times… for me a great deal of the time and yes being in my chair does seem to make it more “real” to not only others who see me but possibly to myself as well. Thanks for sharing

    • Hi Maggie. I know what you mean when you say that it’s hard for you to accept in yourself. I get so frustrated when hit that “gotta rest now” moment in the day or when I find that I am unable to do the things I want to do because I need to “budget” my energy. Ugh!

  12. …it’s me, it’s me!!! – Can this REALLY BE HAPPENING!?? (I’m here for the first time) – After seven years of non-communication/ increasing hoplessness/screaming inside, to get out!!..there IS someone else who SPEAKS THIS LANGUAGE!! – I treasure, and thank you for your EVERY EFFORT in writing this blog..you give life!…finally, OXYGEN. ( bad typing-process day for me so this is all for now.) It’s been worth every word, to SPEAK TO YOU!

    • Thanks so much, John! I hope we continue to get to know each other here. I have recently had surgery, so I haven’t written lately, but I am hoping to be back to writing more regularly in the VERY near future. For now, I am so glad to meet a fellow traveler.

  13. friendsoftobiisland

    Very well said. I used to have a friend with PPMS who would write one or two-word cards. I now know why. My in box is full of missives I wait to reply to until I have time/energy. Hah!

  14. I don’t think your metaphors are melodramatic at all because the music of your language describes what you are feeling. The repetition speaks to how hard you have to work to write these essays. I really love this introduction, Michelle.

  15. …and just as you describe; unable to find words, that accurately depict our fatigue\cognitive impairments, I too, find myself yearning for deeper\more accurate,” words to say, “Thank You!!”
    As I’ve mentioned before, it’s like, finally finding someone who speaks your language ~Exhilaration! This post is so timely for me… I do not exaggerate, in saying that everything your describing has become the ways of my reality. My inability to stay on task and finish something has all but become impossible. My brain feels like a spinning ball, bouncing off of one thing to the other -leaving me a room full of things not finished, and worst of all, “Out of Order.” I’m sure you understand fully, what I mean, when I say -Anything “out of order,” (be it, things in my home, or daily routine) can greatly challenge my ability to, “process, and navigate,” -and depending on the day\fatigue etc. can wreck havoc on my emotions. -Just want you to know, that my heart is one, with you, and all my other fellow, “ProfSpazzers!” That’s all my cognitive energy for now, so I’ll close. -And as for the, “feel-good,” ending… The fact that you don’t, make up one, but instead remain loyal to our truth ~that’s, OUR, “feel-good,” ending.

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