I find myself in a waking dream state this Friday morning - it doesn't seem that terribly strange, because when this feeling hits, I'm walking down a dirt road, the kind which might of its own induce a person to feel rather dreamy. It's relatively early on a spring morning, the earth and grasses and birds happy from the much-needed rain which finally came yesterday. There's a gentle breeze, life feels fine. The sun is not hot yet, and may not be overpowering today. Birds are singing, it's a beautiful day.
It's all quite familiar... But if you asked me who or where I am in place and time, it would have taken me several moments to put that information together.
May is Lyme Disease Awareness Month
Lyme is the most prevalent vector-borne disease and one of the fastest spreading diseases throughout the United States, and the subjects of diagnosis and treatment of Lyme are politically-charged.
This series of diaries is designed to provide information to the Daily Kos community both for Lyme disease prevention and for those Kossacks living with Lyme. Because the disease is often missed by physicians, these diaries may assist an individual or two in pursuing testing which might otherwise have been missed.
The Lyme Disease Awareness series is eclectic, including personal statements, informational pieces about the science of Lyme, and calls to action for community and political advocacy.
We hope you'll all join us all month in learning about this rampant disease and the medical/financial/political morass in which Lyme patients find themselves.
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These 'spells,' if you will, have me in a mental state where I actually am not quite capable of knowing immediately that something has shifted in my world, that things are not quite right. It sometimes actually feels quite pleasant to be in the moment and to not be bogged down by all that extraneous information about the world beyond the gentle breeze and the pebbles that made up the road. I love rocks... the colors, the shapes, the smooth textures.
At least it's pleasant until it begins to occur to me that I have a life outside of this very moment - I remember I'm going somewhere in a bit... where, again? What time is it? Am I late? Where, again? Hazy-haziness. I'm still comfortable at this point until I begin to notice that my mind is not engaging - it is not deducing what I am about to do. Even after multiple tries. And again.
Then there is a moment of sheer terror: ZOMG! What am I DOING?! Where am I supposed to be?! When am I?! Why don't I have the first clue about doing something I know I do all the time (don't I)?!
When I feel like this, it's surreal, information doesn't stick in my brain the way it usually does, things do not make sense, I cannot retrieve information. How do I get off the Yellow Brick Road and back to reality?
I've learned that in time it passes, and I try to remember that to reassure myself. These spells probably last fifteen minutes to an hour. I feel mentally foggy and a bit like I'm floating. I feel worn out and emotionally spent when the spell lifts.
I've referred to them as my 'disorientation spells.' I've been told that these are seizures. They scare me. I've had them happen in public places and the abject terror of feeling unwell and not knowing where I am or how to get home has been confounding. I have a bunch of things which are off in my brain (white matter disease and encepholopathy), but I don't think those things explain seizures.
This morning, when I realized I was spacy and not connecting, I went into the bathroom and looked down at an index card I'd used earlier to note what I need to make a list of things I need to do today in town. The card said, 'Friday 5/13' on it, and I could not make sense of this. It's not MAY! How did it get to be MAY already?! My BIRTHDAY is in May, so by gosh, I KNOW when MAY is, and can't possibly be here yet!!!
That one was a real stumper. Whaddya know? After fixating on that for about a half hour, I was able to recall that we'd already been through January, then some other month, March, April... and, huh, I guess it really IS May. How did THAT happen?
Uncommon manifestations of neuroborreliosis in children
Inflammatory brain changes in Lyme borreliosis. A report on three patients and review of literature
For a good long stretch, these seizure-y things left me alone. Early in my treatment for Lyme, they would get worse, cyclicly, when I herxed. They diminished over the months, and it had been many months since I'd had one.
But it's also now been many months since I've been on antibiotics, and the symptoms of Lyme which plagued me day in and day out before my diagnosis and treatment have been creeping back into my life again. The dizzy spells which I'm told arise due to inflammation in my central nervous system have been showing up again several times a week. The neuropathy I experienced when I stand after sitting for an extended time - my feet and ankles are numb for several minutes, making it hard to feel the steps I take - that's been gentle resurging. And now the disorientation spells are making a comeback, as well.
For those of you out there who believe that Lyme is all in our heads, I assure you with every fiber of my being that it would be a heck of a lot easier to not have this in my life -it's not something I choose or contrive. I want to be someone active and vibrant - I do not want to be someone who crumples frequently and needs pity. I want my body and mind strong to steer me through my days.
I have other physical issues in my life I've written about here, primarily multiple cardiac issues from valve trouble which have required multiple replacement surgeries. I realize this in anecdotal reporting, but my experience with Lyme has been equally incapacitating as notable cardiac insufficiency.
Also From the 2011 Lyme Disease Awareness Series:
Welcome to Lyme Disease Awareness Month
The Mysterious Case of the Shape Shifting Spirochete
Researchers on Persistence In Lyme Disease
This is Your Brain on Lyme. . .
Lyme Disease Rant: The Wall of Polarization