Pain Brain Stole My Words
Pain brain, also known as brain or fibro fog, is when our physical pain is so bad that it interferes with how our brain functions. When I first heard these terms I thought “Oh how cute, someone came up with clever names to disguise forgetfulness that comes with age”. But I was wrong! Even though I had been experiencing it for what felt like ages, I never really connected my cognitive misfires with my chronic illnesses. Looking back I see a pattern of how different levels of pain or spikes of different symptoms have impacted how I communicate.
A few years into my chronic life, I began noticing that I would completely blank when thinking of a word. It didn’t happen often, but when it did I wrote it off as getting older even though I was only in my early 30’s at the time. It has gotten worse as the years go by. There are seriously some conversations that have turned into a game of charades. I can physically act out the word and sometimes even share its synonyms, but - even if my life depended on saying the word - I am struggling to get it past my lips. The most frustrating part of this is that I don’t actually forget the word. In fact, I can hear and see it in my head. I just can’t verbally express it. By the way, I am never offended when someone inserts the word I am searching for; instead I am grateful that they are sparing me of another round of charades!
Talk like Yoda I do
Okay, seriously this is the strangest thing to happen to me. It also started a few years into my chronic life and continues to get worse the longer I live with my conditions. It is not uncommon for me to ask someone “Okay today do you feel?” or “Get coffee from Starbucks want to?” That’s right, I talk like Yoda!! Thankfully, with writing, I can catch it and fix it before anyone notices, although I have seen some of my Yoda talk slip through some of my edits. Since talking backwards has become so normal for me, it isn’t always easy for me to recognize. So if anyone asks what my writing style is, just tell them that I talk and write like Yoda.
Losing my voice
A few times a year, I completely lose my ability to verbally communicate. I have the thoughts in my head, but am unable to say them. It usually only occurs when I am experiencing my most severe flares and rarely lasts for more than a day or two. During these episodes, I either can’t verbalize the words at all or I sputter out syllables or sentence fragments. After a while I began noticing what was triggering this type of episode. While it always happens during a severe flare, it only happens during flares when my back muscles and tendons have become angry and start squeezing my spine. In the past year, I have been able to decrease how often I experience this level of decreased communication by paying close attention to how my spine feels. The moment I feel pressure I apply ice, which out of everything I have tried is the only thing that helps decrease how long I am without words.
This has become my new normal, never knowing if my brain and mouth are going to cooperate. When I first recognized these issues I would raise warning flags to inform my family that was unable to have a serious conversation, but after so many years they too have gotten used to it and can tell just by looking at me if I am able to speak in full sentences or not. This is one reason that I love writing. While pain brain may steal the words from my mouth, it has yet to stop me from writing them out. What is the strangest thing that you have experienced from pain brain?
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