Brain Fog and Escalators

Many folks don’t understand that even the simplest activities can be too much when struggling with chronic pain, even going out to the movies. But I really wanted to see Atomic Blonde in the theater, so I put on my big girl panties and we went to the mall. My husband parked the car and we walked towards the escalators. I followed a young boy up the escalator. I kept walking but I wasn’t making progress. The young boy had made it to the top but I was still stuck at the bottom, continuing to walk wondering why I wasn’t also at the top. “Allegra,” my husband interrupted my struggling thoughts. “You’re on the down escalator.” Awoken from my fog, Jeff led me up the up escalator. We made it to the theater but I didn’t even remember the film and when it came out on HBO I thought I hadn’t seen it yet.

My working memory, short term memory, and general cognitive processing are frequently effected but never in a patterned, predicable manner. So I must figure out how to compensate on the fly. It’s often difficult to articulate thoughts or even find simple words at times, (“that thing, with the pages… that you… you know… read.” “You mean a book?” “Yes. That’s it. A book.”)
They call it Lyme brain fog (or cancer brain fog, etc.) and it feels like swimming through thick mud. If you’ve never experienced it, I’m sure it looks strange to a healthy person. But please, be gentle and compassionate with us. We’re doing the best we can.

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Inspiration through Music

I’m seeing lots of posts of Lymies and Spoonies struggling. I too am in a lot of pain and am struggling with both addressing the pain and expressing it. A friend posted a status yesterday and I could tell she was getting to the end of her rope. For me, when I get to those moments of extreme trial and tribulation, I use little “tricks” to help me make it through… one more day, one more minute, one more breath. One of my favorite “tricks” is to sing this song to myself.

What songs inspire you? Share links in the comments!

“We are going, heaven knows where we are going,
We’ll know we’re there.
We will get there, heaven knows how we will get there,
We know we will.

It will be hard we know
And the road will be muddy and rough,
But we’ll get there, heaven knows how we will get there,
We know we will.

We are going, heaven knows where we are going,
We’ll know we’re there.”

Video

Cognitive Miserliness and Spoons

Over Labor Day Weekend I attended Dragon*Con. I sat in on a panel discussion “Why Mensa Will Never Solve World Hunger”, which was about rationality in contrast to intelligence. The speaker, Barbara Drescher, spoke about cognitive miserliness: the idea that we use the minimum amount of energy to meet our cognitive needs.

Many Lymies and Spoonies talk about how they feel stupid due to Lyme Brain Fog, which has many potential causes including neurologic Lyme or because of the pain. If we build off of Christine’s spoon theory, then this makes sense that we use our limited energy to survive the pain, which does not leave us resources to use our cognition.

“The cognitive miser idea is fundamental in the information-processing model of social cognition because it would be enormously taxing on individuals’ to attend to all information in the world scientifically (basically, with a high degree of analysis), with individuals becoming overwhelmed by the confusion and complexity of the social stimuli that they are attending to.” [1]

I know that this is a significant point but, ironically, I struggle to articulate it. I promise to continue to mull it over and hopefully arrive at something poignant. If someone wants to help me develop this more fully, please let me know!

I miss the woman I used to be

It’s been quite a while since I’ve posted. I had a torturous sinus migraine for five days last week. As soon as I recovered, I had to play catch up on life. I have a hard time figuring out how to prioritize. Which comes first? School? Blogging? HOA Board of Directors work? Life? Me? I just move them around like a game of Three Card Monte never sure of what goes where. In the meantime, here is a blog post I wrote a few years ago. I hope it will suffice in the meantime.

I miss the woman I used to be. <– click here to read my old post.

Another day of rest.

I know it’s been a few weeks since I’ve posted a vlog. Between traveling and preparing for my last semester of my Master’s, I haven’t had enough spoons to get one done. I wanted to reassure you that I haven’t forgotten about you all, nor have I fallen into a Lyme hole. I promise to return as soon as I need good procrastination excuses from my homework.

Today I am resting, saving up spoons and planning on going into my last semester with guns blazing!

Wondering about what I’m talking about when I say “spoons”? Check out The Spoon Theory by Christine Miserandino

Napping: to do or not to do?

I used to be the best napper. Seriously, I could lay down on the couch, in the middle of the day, in a busy apartment, fall asleep immediately, power nap for 15 minutes and wake completely refreshed.

In my post-Lyme life, this is one of the many things stolen from me. Post-Lyme I have to power through because I know as soon as I lay down, I’m down for the rest of the day. At this exact moment I’m tired: I’ve accomplished a lot today and I am spent. In my pre-Lyme life, I would lay down and take a 15-30 minute nap and get back to work. Post-Lyme, I fear that I will lose momentum.

This leaves me with the question: to nap or not to nap?

What would you do? Leave your response in the comments section below. I love hearing from all of you!

Intimate Strangers

While networking with a fellow Lymie around Lyme awareness today, she used the most fabulous term, “intimate strangers”. This resonated with me because that is truly how I feel about all of you, whether or not we have met in person. We have connected on a deeper level than most friends achieve after years. We know and understand the pain and struggles we go through daily. We share in the joy of the little triumphs (such as making it out of bed finally) and the larger ones (finishing a grueling course of antibiotics).

I wanted to take a moment to express my gratitude to all you, my intimate strangers.

And if you could take a moment to check out Kyoko’s blog: http://lymeinthecoconut.wordpress.com/

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