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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There are bad days too…

Today I woke up feeling terrible. I could barely make it down the stairs. I was scheduled to ride my horse but was going to cancel because I didn’t think I could do it. But, with the help of my friends, I was able to make it out to the barn and get some good horse therapy. Unfortunately, the heat got to me and now I’m not doing well.

Since I show you all what I look like when I’m strong, I feel that it is only appropriate that I show you my bad days too:

Thank you all for your continued support!! I promise I’ll be up and fighting again shortly.

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.

My First Interview with GoTarryn

GoTarryn, the traveling trainer, learned about how I am fighting for my life with Lyme Disease and requested to interview me for his weekly YouTube channel.

GoTarryn Personal Training Video Blog (05/12/2015)

ALS Ice Bucket Challenge with a Twist of Lyme

Doing the ice bucket challenge? Consider doing it with a Twist of Lyme! Give to LymeMD and ALS. www.lymemd.org www.alsa.org

Doing the ice bucket challenge? Consider doing it with a Twist of Lyme! Give to LymeMD and ALS. http://www.lymemd.org http://www.alsa.org

I opted to do the ALS Ice Bucket Challenge and add in a Twist of Lyme. I did this because I suspect that, in at least some cases, that many autoimmune diseases (such as ALS, MS, Rheumatoid Arthritis, etc.) may be caused by the Lyme bacteria. Currently, Lyme research is underfunded. This NEEDS to change. There are so many unanswered questions when it comes to chronic Lyme. We need a formal research group at a major university investigating Lyme. I believe that Dr. John Aucott at LymeMD is best positioned to make this happen. There are so many great organizations that focus on Lyme awareness and I am grateful for the very important work they do. They have paved the way for us Lymies to be recognized and I am grateful but we need to fund research now.

So, I was terrified but I took the ice bucket challenge and gave it my own twist of Lyme. I gave $100 to ALS and $100 to LymeMD. Here is my video:

And, I started this movement with my family. My husband went first:

Then my niece:

Then my friend Stephanie joined in the movement:

My neice, Ashley braved the cold and so did her brother David. My friends Sarah and Nicole also joined in on the movement! I pray that the momentum continues to grow. If you are doing the ice bucket challenge, please consider adding in a twist of Lyme! Even just mentioning us helps build momentum and visibility.

And now my friend Michelle opted to do it with a Twist of Lyme!:

Jason also stepped up to the challenge:

My dear friend Ellie also accepted the challenge.

Possibly the funniest video came from Tosha:

The very brave Laurie, got out of bed and donned lyme green to tell her story and take the challenge:

What we really need is more Lymies to share their stories and explain why we need formal research into this very enigmatic disease. I know taking the ice bucket challenge is hard but this is an amazing opportunity to gain visibility and hopefully raise much need funds for Lyme research. Please consider rising to the task and sharing your story publically.

To understand the quality research being produced by LymeMD, here are two examples of peer reviewed articles they have published:

Characteristics of seroconversion and implications for diagnosis of post-treatment Lyme disease syndrome: acute and convalescent serology among a prospective cohort of early Lyme disease patients.

Serum Inflammatory Mediators as Markers of Human Lyme Disease Activity

Additionally, I found an entire website that claims there is a link between ALS and Lyme. Study: 9 in 10 ALS Patients infected with Lyme bacteria. However, I am not a scientist and cannot verify the degree of their scientific methodology. Caveat lector.

Thank you for taking the time to read this and hopefully you will share it widely! Bless you ALL!

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 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.

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