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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American Ninja Warrior, Here I Come!

Because I am ridiculously tenacious, I have applied to American Ninja Warrior again. I’m feeling so much more prepared this year than last. Last year I went in with the mindset that it would be a hoot and a good way to raise awareness for Lyme Disease. This year I am going in with the mindset of being a real competitor.

In addition to doing this for myself, I am also doing this for all my fellow warriors! When I want to give up, your support carries me through. It helps me dig down deep to find the strength to persevere. I know that I have to keep fighting because you all are out there, rooting for me and if I give up, you might give up too. We’ve created this beautiful feedback loop of support!

(Now that the taping of the show is in the can, I can share my application video with you)

Allegra’s ANW8 application video

 

A follow up interview with GoTarryn

GoTarryn, the traveling trainer, speaks with me again about life with Lyme.

GoTarryn Personal Training Video Blog (11/16/2015)

GoTarryn invited me back!

GoTarryn, the traveling trainer, requested a follow-up interview and I was thrilled to oblige!

GoTarryn Personal Training Video Blog (08/13/2015)

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)

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