I Think, Therefore I Am More Than My Mental Fatigue

Beth Ullah avatar

by Beth Ullah |

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Mental fatigue with MS | Multiple Sclerosis News Today | An image of a head, resembling a sliced-open opinion, that reveals the layers of personality

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The layers of self and the mind are depicted in this graphic image of a head as a sliced-open onion.

“A river cuts through rock not because of its power, but because of its persistence.” James N. Watkins

Fatigue is arguably the most disruptive symptom of multiple sclerosis (MS). At least it is for me. It has an awful lot to answer for. And it will.

My cognitive fatigue didn’t begin until long after I was paralyzed in 2016 by aggressive relapsing-remitting MS. The fatigue came as a huge shock to me. I had read about it and even thought I knew how it felt. I thought that because I was already unable to walk, the mental fatigue would have occurred already. I was incredibly wrong.

Imagine you’re in a ball of bubble wrap waddling around, unable to touch anything or anyone around you. That is what cognitive fatigue feels like.

The life of the mind

Imagine, also, the one thing you believe makes you “you.” Maybe it’s your legs if you’re a swimmer or your hands if you’re a surgeon. My brain is that thing for me. Even when I couldn’t move, stand, or walk, I had the freedom of my mind, which kept me sane.

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If I were asked to choose between my brain and my body, my answer would always be 100% my brain. It’s who I am. It makes me, well, me. I was never an athlete. I have always been mind more than body. I am a scientist, a deep thinker, a planner.

I was told I’d need to take modafinil, a fatigue medication. It worried me that I would need to take medication to keep me as “me.”

I had all kinds of questions: Where was my mind going? Would it come back? Would I need to stop my life as it was? Would I be able to have babies? Would I be able to keep my job, or have a job in the future?

There are days I have to “moo” at my husband for help coming up with the word “cow.” There are days I think my day was a dream because I feel so out of touch with the world around me.

Then there are days I ace my neuroscience master’s exams.

Here to stay

I know this mental fatigue I feel is not going away. It has affected my relationships, sent some out of joint, and train-wrecked others. I understand it must be very difficult to engage with someone who is there in body, but not in mind. I want those who might have encountered it to know that I understand how rude it can appear. I want them to know it is not intentional or malicious.

It’s not me.

But I’ve also encountered some people who have tried to use my fatigue against me. There have been times that I have been made to feel like I’m not worthy of having the same social interactions as nondisabled people, or that I’m “toxic” because I sometimes struggle to engage in a conversation when I am fatigued.

I don’t understand why people behave like this; perhaps they lack compassion or have no understanding of what it’s like to live with challenges. I’m not toxic or unworthy.

I am real. I am thoughtful. I may be quiet at times when I have to be for my health and, frankly, for my sanity.

And I am still here. I have been to rock bottom in this fog of fatigue, and exploded back up again when it lifted. That’s no small accomplishment.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Jen avatar

Jen

Beth, thanks for expressing, with such heart, what I'm feeling. I've just been prescribed Modafinil. Did you try it? Did it work? Any side-effects?

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Beth Ullah avatar

Beth Ullah

Hi Jen1 Thanks for reading.
I have been on modafinil for two years now. Yes, it does work, it effects the wake/sleep pattern moreso than being a stimulant like caffeine is.
It can keep you up late at times (much to the annoyance of my husband!) and sometimes it makes me fuzzy and spacy as opposed to alert which can be frustrating.
It has changed my life- I wouldn't be able to function without it.
Good luck!

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