The Everyday Frustrations of 'Fibro Fog'

I was treated for multiple sclerosis (MS) for three years by the chief neurologist of a hospital in Toronto, only to be told I don’t have MS. When I asked him what he thought I might have, he said, “I have no idea, but you can get a second opinion and maybe they can teach me something I don’t already know.” I left his office feeling very deflated and told my husband he was a pompous a** donkey.

I was tired of the widespread pain and the fatigue that attacked my body every day. I asked my MD to refer me to a rheumatologist because I had determined through my own research that I had fibromyalgia. My MD said, “You don’t have fibromyalgia because you have brain lesions.” After much persuasion I finally got the referral, walked into the specialist’s office and said, “I have fibromyalgia.” Indeed, I was right. I was finally validated… no longer were my symptoms all in my head!

I learned through a fibro support group that “fibro fog” does exist. Thank goodness I had an excuse for not having any short-term memory because I would watch a movie in the evening but the next day I couldn’t remember the name or the content. All I could remember was that the movie was either awesome or crappy.

A friend would say to me, “Do you remember when…” and inevitably I would say no. Then I would ask, “What did I do that time?” The friend would try to remind me of the silly things I had done and I would laugh because it was funny; and yet, I had no memory of that incident. People would say, “I told you that last week,” or I would say something only to be reminded that I had already told them that very something.

So, I wrote an email to my friends and family (to no avail) asking them to be patient with me and not say, “You told me that already” or “I told you that last week.” How embarrassing it is to not remember… Oh my, I just forgot what I was going to say right now! To not remember a word in the middle of a sentence or to trip over words is so frustrating. To not remember why you have walked into a certain room, to not remember where you put something you use all the time, to not remember the point of something you began talking about and to not remember the hiding space where you put something to keep it “safe” makes a fairly intelligent person feel not so intelligent.

Recently, my daughter-in-law told my sister she doesn’t believe I don’t remember conversations, and I was quite annoyed when I heard that. “She can remember; she remembers lots of things.”

However, I try very hard to see the positive side of things, and in this situation, I do have an advantage: not everybody can hide their own Easter eggs.

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