This last week has been a relatively good one. Overall, certain neurological and cognitive symptoms have declined while on the most current antibiotic protocol of Doxycycline and Flagyl. Other symptoms have increased or gotten worse, likely a result of the Herxenheimer reaction and the huge load of crap I'm dumping down my throat each day to get me healthy. My back and body and arthritic pain has been substantially worse, yet I'm filled with anxious energy most of the day. If I'm not moving or doing something that's keeping me occupied, I get bored and antsy. It's frustrating as hell, because there really isn't a whole helluva lot that I can do.
Another thing that the Flagyl-type antibiotics do to me, and I know I've mentioned this before, is they make me feel a bit loopy and scatter my emotions all over the place. When I do get up to walk around, I feel a bit like the alien character Vincent D'onforio played in "Men in Black". You know, the stumbling, bumbling, leg dragging zombie-looking dude with his head barely attached that emerges from the crashed flying saucer? Yeah, I feel like that a lot.
I've still been having a really hard time typing and using a mouse to work on the computer. The last few days, I've been limited to only an hour or two each day of being able to do anything. I'm glad I've finally embraced Siri on the iPhone. I wish she existed on this laptop. The arthritis in my hands and arms and fingers (and the rest of my body) is definitely getting worse with time. The future ain't looking too bright for me and computer work. Reminds me of the days when my right wrist or elbow would swell to the size of a baseball, be red and hot, and I'd go into work and do everything left handed for a couple weeks. Yeah, those were the days……
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The above is just me bitching about my situation, or telling it like is, I guess. My aches and pains likely go beyond most people's, but we all deal with this shit as we get older (as I type this one day before my 40th birthday). I'll deal. Always have.
Something occurred last night, however, that kind of scared me. An old friend posted a picture on Facebook of a play that our 6th grade class had performed back in 1986. I recognized the gym, I recognized all the faces and remembered all the names. What I can't remember is participating in that play, or any details of it for that matter.
As I laid down for bed, this was really bugging me. I searched my memory for everything I could, focussing on those years in 5th and 6th grade at Fullerton IV Elementary. Nothing came. Actually, some stuff did, but all bordering on the negative. They weren't exactly pleasant memories, but simply the stuff most kids go through and learn from. But I KNOW I had fun at that school. I made some awesome friends, played sports with some great guys and gals, but where are these specific memories? Bits and pieces, sure, but not much else.
So I tried to reach back farther, and lo-and-behold, I was flooded with childhood memories, happy ones, fun ones. For the sake of brevity, I won't list them here, but these memories were also associated with a surge of energy through my body, telling me I had hit upon something. What I'd hit upon was a big, huge, thick-ass wall that went up in my life between 4th and 5th grade. It was during this time that I was infected with Lyme Disease.
I have had the problem on dwelling on the negative for most of my life, and I think I know why now. I am highly, highly aware of this problem, and being aware, have tried to remedy it in numerous ways numerous times. It's often driven me batty, my overactive mind always trying to find answers to questions such as, "why am I like this?". "Why do I act like this?". "Why can't I control it?"
I've never did read Dr. Jekyll and Mr. Hyde, so I don't know how cognizant one was of the other. In my case, when I'm being, as Joe Rogan likes to say, a cunt, I know I'm doing it. And I can't stop. And then I breathe and think, "what in the hell did I just do? why?". And then I'm back to being a nice, laid back guy who is really easy to get along with. You know, until I blow up again and alienate myself from everyone.
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I want my friends, old and new alike, to know that these negative feelings are only memories being affected. My feelings towards people I know and respect are almost always positive, and those haven't been changed by Lyme. Looking at that picture made me smile. Seeing all of those familiar faces from those early years really made me long for "home", that abstract feeling of a place where so much of one's energy resides.
I'm really glad that picture was posted (thanks, Misha!). It has provided me with another piece to my health puzzle, a once fuzzy picture that has now come into much better focus.
Now, to see if I survive until tomorrow. Frankly, there were times I didn't think I'd see 40. Like the time I was stuck on a 50 degree slope with hundreds of feet of exposure in way too warm of spring weather with slumping snow conditions in the Alps somewhere in Austria……. okay, for some reason, that's a 'negative' memory that makes me smile :) I know, I'm weird….
Showing posts with label Neurological. Show all posts
Showing posts with label Neurological. Show all posts
Friday, April 4, 2014
Friday, January 24, 2014
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 ;)
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….
---------------------
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.
---------------------
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 ;)
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