Communicating With Brain Fog, Fatigue, & Pain From Ankylosing Spondylitis
Last updated: January 2023
I'm a born orritor. Worked in radio, was a storyteller, provided voice over for different projects. I can speak in a voice that both comforts and excites. (I also might have a very lofty view of myself) But, after all that, brain fog can make speaking rather difficult.
When I am low on energy, and my mind is fogging up, my ability to form words and remember what I said can be difficult. That is why, when I say something, I really need you to hear me the first time because.
I hate having to repeat myself!
This and other factors are connected to speaking and brain fog.
Sometimes I talk to myself. Sometimes I say something just to put it out into the world. But, oftentimes, I am trying to legitimately communicate a fact or thought. But, if you ask me to repeat myself...*growl*
I would really rather you hear me the first time because sometimes, whether it is brain fog or lack of energy, saying something the first time might have been a struggle. Go ahead, get drunk and try to recite a poem you memorized in 7th grade. Pretty hard to get those words out, am I right?
That is how I feel with the simplest comments when I am out of spoons. I needed to grasp for words, remember what I was talking about, and then have the energy to take in breath and launch everything out for anyone to hear.
“What did you say?”
I swear, I either don’t remember or don’t have the energy to reform all those thoughts and speak them again.
My second attempt might sound like yelling, or I’m just not going to try again. “It wasn’t important...Don’t worry.”
I am always getting in trouble for my tone of voice. Apparently, I can sound like a pretty big jerk when I am hurting or exhausted.
Pain makes my voice sound agitated, even when I am not. I might yell so I don’t have to repeat myself...But...Now I am yelling...Another problem with my tone of voice.
I’m sure some of you reading this can relate. Maybe you too are getting in trouble for your tone of voice. I have no control over this tone. I usually don’t even realize I am using a “tone”, I thought I was just speaking.
Pain is auditory! Whether we intend to or not, when we are in pain, it comes through in our voices.
(I hope a lot of spouses, or significant others are reading this).
We are not taking a tone. We are not angry. We are not yelling. We are trying to speak through the fire and fog that is chronic pain.
I need everyone who does not live in chronic pain to listen. No, literally listen.
Maybe I am alone in the pain that is repeating myself, but I kinda doubt it. I need everyone to start preparing to hear what we have to say. Whether you are reading, watching TV, or working, please keep one ear open for your Spondy soulmate.
Whether we can only speak in a growl or whisper, or we find ourselves having to repeat ourself. We need you to listen. And please understand we are not using a “tone”. Pain can be heard, and it often sounds as unpleasant as it feels. And, even if we are using a tone.. Like when we are hurting and you announce we are going out to dinner, and all we can do is groan.
It’s the pain talking.
So, open a listening ear, and give us some grace.
Take the time to understand what we are saying.
Have you ever had to take a leave of absence from work due to your symptoms?
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