If you’ve been following my blog either because you are participating in the Ultimate Blog Challenge or because you subscribe, you may have noticed that I’ve been away for a couple of days. On Sunday, my husband and I traveled back from Richmond, VA. It is about a 10 hour drive, and even though my husband does most of the driving, the drive takes a toll on me. With aphasia, there are things that happen that affect my cognitive load, the amount of mental energy that has to be expended in order to perform tasks. I’m not a medical professional so this explanation could be wrong but this is how I think about this. When my brain, which is damaged due to the stroke, has to concentrate, problem solve or attend to stimulus, I get really tired. But the tiredness isn’t like when you’re tired at the end of the day it is more debilitating.
Well, on Monday, the day after our trip, I had extreme neurofatigue. I was not only extremely tired but my brain was on overdrive. I was thinking about many things all at once and couldn’t attend to even the simplest of tasks which required thinking. That probably doesn’t make sense to anyone who doesn’t have aphasia. When I tried to write my blog, even the simplest sentences didn’t come out correctly. When I had a conversation with my sister, I couldn’t find the words I wanted to use (aphasia) and those words that did come out were mispronounced (apraxia of speech).
Most of my scattered thoughts on Monday were about what do I wanted to write in my blog, why am I writing my blog, why am I insisting that I write the blog every day just to finish the challenge, who am I writing the blog for anyway.
I finally was able to settle my thoughts by doing some meditation, doing reiki, and looking at my “wheel of life”. I noticed the feeling of inadequacy and perfectionism and I sat with the feelings. Then I made some decisions about the blog and specifically my participation in the challenge this month. I created this blog to share my story since the stroke, but more specifically to talk about how to live well with aphasia and AOS. For this reason, I want to make sure my posts follow this niche. So I’m going to nurture myself and only do as many posts as I am to fit into my writing time. I will still challenge myself to read most of the blogs highlighted on the days page and comment on those that I can. this limited reading and writing is challenging enough .
Today’s prompt of the Ultimate Blog Challenge was perfect for me. As I said above, I really want people to know about aphasia and apraxia of speech. and what better way than to ask reader to ask me questions.
on Day 6 (hydration) one reader asked me a question about communication with aphasia. Thank you so much. That gave me a chance to talk about my experience with a communication disorder.
Question: how do you communicate with your hubby, do you use sign language?
My answer: now, my aphasia and AOS would be consider ”mild”. When I first had the stroke, I couldn’t even make a sound. At that time, we played a lot of charades and I had a big pad of paper or a white board with me at all times. I could write a few words. Now, I am able to speak, but have some problems getting certain words out. for example, I had to stop and research a few words when replying to you. The word “mild” escaped me. And I had problems spelling or saying “charades”. Everyone in my world is very patient. Thanks for asking…..
Do you have any questions about aphasia or apraxia of speech?
I can understand some of your fatigue, Cheryl. I have a blogger friend, Mina of Suddenly Mad who writes about this. She has early onset Alzheimer. I think some of the neurological symptons and struggles are similiar. She has lost alot of functions but she can still write amazingly well. I've learned alot from her writing. She is an artist and was a professor in NYC. And she can still draw. She hasn't written since May though, so I'm sad.
I find brain fog can be exhausting. I was like that after I retired. Still I don't have a large reserve of energy. I can't write and read a lot of blog posts without getting very tired. You are doing…
Cheryl, thank you for explaining. That makes perfect sense. When you're healthy you take everything for granted. We walk, we talk like it's nothing, when in fact, it's everything. Glad you're getting your words back.