My Complications with the Neurological Symptoms of Lyme Disease

I really don't plan on dwelling on the negative with this blog, but with this disease, you never know what you're going to get.  Usually, on my bad days, I'm unable to write anyway.  Perhaps, a blessing.

I do have days when I can get on the computer for an hour or two, though, where the rage Lymes, or the Lyme rages, or the bugs stage a coup of the personality I know as "me" and I never know what might come out after banging on the computer for a few minutes.

I'm sure many of my friends have seen these episodes on Facebook or even in person, where the smallest little thing can set me off.  I am conscious of what is happening, but there is nothing I can do to prevent the rage from manifesting itself in some form, usually in cutting and sarcastic remarks.  I can tear someone down with the best of them, and I'm not necessarily proud of that.  Afterwards, I feel horrible, and I have been carrying around guilt regarding many of these episodes from the past for years.

This guilt plays heavily into my daily life.  Although I've come to grips with many of my past transgressions, many while using alcohol to numb and mask the pain I was being told was all in my head,  they still bug me.  I've had more than one doctor ask me if I was bipolar, and I'm pretty damn sure I'm not.  I don't exhibit the classic symptoms.  This is just Lyme, the great imitator it is, causing episodes similar to bi-polarism.   Once the bugs get past the blood/brain barrier and into your spinal fluid, all kinds of weird shit can happen.

And each and every single day is different.  Each and every hour is different.

I can go from cognitive and aware to forgetting where I am or what I'm doing in a single heart beat.  It is as if a veil drops over your consciousness and everything goes dark.  You can see, but it's like being in a dream.  This dreamy feeling is often referred to as "derealization," and it can be very weird and disorientating.  Because of this, I can no longer drive.   I'd probably get lost anyway, end up in Canada chugging maple syrup and eating plates of poutine….

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Writing is always very difficult.  I've learned to deal with the crippling arthritis in my hands and wrists and elbows, damaged beyond repair from decades of horrible gout like attacks in my joints.  Actually, the medical cannabis helps greatly with this.  I have to use my vaporizer while writing or working on photos, or I am completely incapable of even using my mouse.

When the pain is too bad and I can't use the mouse or type, it's Audiobook or Netflix or Hulu time with the zero gravity chair fully reclined.  I can usually stay in that position for one hour.

Or, I lie on the floor and put on headphones and listen to podcasts or audiobooks or music or just meditate.  Over the past two years, probably 80% of my time has been spent this way - on the floor or in the chair or in bed.

Lying as still as possible is important.  It's what helps quiet my brain, it stops the vertigo, it simply straighten things out.  I'll have to take a picture of my chair / computer setup so you can see how I do this.  It's my "happy place", but unfortunately, the happy feeling doesn't last too long.  Usually long enough for me to do a few things on the computer, and that's it.  Then the back and fibro pain is too much to ignore.  No pain killer I have tried touches it, unfortunately.  You learn to deal.  You learn new normals often.  The evolution of toleration.

Here's the weird thing - the derealization is still there when I'm writing.  My own thoughts are being put down, but it's like someone else's hands are moving, like they aren't mine, but still responding to my commands.  I think this has a lot to do with nerve damage in my arms, neck and upper spine, but also with the derealization.  It's kind of cool, actually….

I've also recently started having what are termed, "Simple Partial Seizures", a type of seizure where the body shakes and convulses violently, but consciousness and awareness are maintained.  I got hit by one hard last night and was on the floor for over 10 minutes shaking.  They are almost like an Out of Body Experiences.  I could still calmly talk with my wife while it was going on, but I had not control of the shaking.  These I don't find too cool.  Quite disconcerting, actually.

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I'm not going to list all of the physical symptoms I deal with.  It's not pretty, but it's also just not necessary.  Those that care and those that know me know what I'm going through, all that I have been through, how bad it is, and how hard I'm working to get myself healed up the best I can.

The physical stuff is bad enough to detail with, but honestly, it's the mental aspect of this disease that takes the biggest toll on the soul of a person.   For me, it's what it's doing to my wife and my kids that most bothers me.

I can't express enough how absolutely amazing my wife is.  She holds this family together, and keeps the ship running above water, all while dealing with an almost fully disabled husband and twin daughters, who are a week away from turing two years old - and are already showing some of the 'terribles'!  Plus, she holds a highly professional and technical full time job working with a, thankfully, great group of understanding people.

There are many times when the girls are home when I am unable to even be in the same room with them.  Because my nerves are so damaged, even the smallest stresses or noises can completely set my system off.  I have to be very careful of this, as this often brings on crippling migraines for days and weeks.  So, I only get short bursts with the family, and it is so tough.  Me, hiding in this damn prison of of a room, unable to play with my girls or watch them develop.  

For instance, it's 9:30PM right now.  One of my girls has been sick all week, but is finally getting better.  However, she's been clingy and just woke up.  My wife came in the room with her while I was trying to write this.  My first reaction?  I got really, really mad, and I'm sure she saw it somewhat in my face.  At the exact same time, though, me - myself - my consciousness, whatever - is saying, "this is silly, you should be happy to see them….."

There are times where my outward appearance and feelings completely misrepresent what I'm truly feeling inside, and I now understand that this has caused for a lot of confusion between myself and others in life.

As I am going through the beginning stages of treatment, these symptoms are only supposed to get worse.  In some ways they have, but other symptoms have subsided enough to let me be a little more active.  I just feel drunk while doing most things, the left side of my body drags, and the pain in my back is unbearable at times, but at least I've been able to connect with some new people lately.

Meeting and interacting with others in a similar situation is always helpful.  For that, I am very thankful.

In conclusion, if you've ever thought I might be a little bit crazy, well, you were kinda right ;)