Explaining to the lay person what chronic Lyme feels like

I have no doubt that my husband loves me but I know that it frustrates him when I try to explain that he will never be able to understand what I’m experiencing. After a great talk today I think I may have come up with a way that can help him at least wrap his brain around it. I thought I would share it with you all too.

Imagine the worst case of Mono that lasts for 3 months, leaving you unable to lift your head off of the bed or take care of your basic personal hygiene unassisted. Now add in excruciating joint pain, migraines, and constant nausea. On top of that your cognition is effected: you have lost your short term memory and your working memory is hampered (you can no longer manage complex reasoning and are unable to find the word your are looking for). You may or may not be able to read and write. Any allergic reaction sends you into a tail spin (because it makes sense that an immune response would trigger an autoimmune reaction) so you live in constant fear of mold/hay fever/etc. You may or may not suffer from chronic insomnia or you might sleep 23 hours a day (and don’t you dare say that you would love to sleep 23 hours a day!! That is arguably the cruelest thing you could say to someone with a chronic condition). Your life is stolen from you while you are in the prime of your life, leaving you broken and despondent. Many sink into deep depression. Your friends and family abandon you because you are no longer “fun to be around.” There are many other symptoms to add in but this gives you an idea…

Now multiply this by years.

Now you may have an inkling of an idea of what we go through and why we get upset when you say, “oh yeah. I get tired too.”

I hope this helps give a better picture of what it feels like to be trapped in the body of someone with Chronic Lyme. Was this helpful? Did I leave anything out? Tell me in the comments below.

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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.

“I Have a Dream” and Mantras

I have a confession: I don’t have a mantra*. This is not to say that I haven’t meditated with a mantra but many spiritually inclined people have a personal mantra that is theirs.  I have “tried on” many of the traditional mantras, but none felt quite right for me.

Today is the 50th anniversary of Dr Martin Luther King, Jr.’s “I have a Dream” speech. In my Art of Teaching class today we watched his speech and the mantra “I have a dream” truly resonated for me. I plan on trying it out for a few weeks and see how it fits.

(channeling my best Rev King)

  • I have a dream that I will regain my life.
  • I have a dream that I will be able to support myself.
  • I have a dream that awareness about Lyme Disease and its long term effects will become recognized.
  • I have a dream that we will all return to health and wellness; that we all will over come the suffering that this unseen illness bears down upon us.
  • I have a dream that I will be able think clearly, unburdened by Lyme brain fog.
  • I have a dream that I will be strong again.

I will report back and let you know how it goes- if it still speaks to my heart or if I will continue to search for my mantra.

*Mantra: a word or sound repeated to aid in concentration during meditation or times of stress. I will discuss mantras more in future posts.

My Lyme Story Continues…

Part 3 of my Lyme story. I talk about things I’ve lost including my cognitive abilities, my strength, and my marriage.

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