Great. More leaves.

I used to like the fall.

All the pretty colorful oranges and reds and yellows of the leaves...

Yeah well that's all fine and good until the suckers start dropping off the trees. And then there is constant movement of leaves everywhere ... As wind blows and as the dead ones stir off branches and drift to ground where they lay in gently moving piles or flutter across the ground. The whole thing SUCKS for someone with lyme. SUCKS.

I could not figure out why all of the people I know who have Lyme have ALL gotten worse in the past month. Every single one of them. Including me.

This post is going to be about the brain and how the eyes, ears, and nose get seriously fankled (Scottish word for messed up -- LOVE it). I know I have posted stuff about this in bits and pieces but will try to explain a bit better.

Why should leaves be any big deal? It comes down to one word: movement. They move, they shift, they blow, they crunch up into smaller pieces that flutter around. For a normal person, this is no big deal. Leaves. Whatever. A normal person does not even notice them because a normal brain does not care that a leaf that is moving. That info is insignificant and unimportant. So the brain does not store it or acknowledge it.

A normal brain has ability to instantaneously decide to ignore or pay attention... you don't even have to think about it.

For someone with Lyme, however, that ability is broken for the time being.

So what does that mean? It means that the eyes see *all* movement and cannot filter out what is important and what is useless. And believe me, leaves are useless. Your brain does not need that info but the eyes see the movement about every leaf that is moving and blast it all in there anyway.

With me so far? I can hear the next question.... "Okay so what? Why does it matter if all that useless info is blasted in there?"

Actually it matters a lot. Because the other thing about Lyme is that it screws up what the brain can handle... how MUCH it can handle. You now have a limited amount of bandwidth for information. VERY limited. And you have to somehow work within those limitations or you are ShitOutOfLuck.

Here's how Doctor explained it to me ... only he used an example using a car. I like electricity better.

It is like having a house with an electricity problem. You don't have enough electricity to run everything you want to run... like, you only can run the microwave, the dishwasher, the Air Conditioning.

If you turn on anything else like the TV? POW the whole thing blows and stops working. Same is true for the brain... the eyes, ears, and nose are all shooting in information. Crappy USELESS info like leaves actually suck up some of the precious little brain bandwidth you have to work with yet you cannot turn it off.

If you are unlucky and you happen to be outside with a pile of leaves that are moving, with a huge BBQ and lots of smell, AND loud music or screaming kids?
You are toast. It is just too much for the brain to handle. Why?

Because the EARS and the NOSE also have the same problem as the eyes... they blast ALL information into the brain. Yes, ALL of it. If you did not have Lyme then you could easily ignore crunching footsteps or barking dogs or clinking silverware or... whatever. It is not important so you ignore it right? Well, again, Lyme takes away that ability so it all gets blasted in there.

Same with smells... argh. Smells are the worst. I think they are even tough for people who DON'T have Lyme but they are appallingly bad for people WITH Lyme. Heinous. You cannot get away no matter how hard you try. Think about how bad it is to be trapped in an elevator with someone wearing vile perfume... or trapped in a car with someone smoking... it is bad enough when you are not sick but when you have Lyme, it becomes critical and will push your brain past the point where it can function.

What happens? Well, it is too much and the brain starts to shut down so you cannot think properly or get to words... tears start coming, completely out of your control... sometimes you get anxiety because your brain says "need to get out need to get out"... sometimes all the frustration crashes out in anger which zaps the last bit and always turns into tears... sometimes you curl into a ball, shaking, because that is all you CAN do at this point.
It is ugly. Very ugly when things get to this point. The only thing that can help is for you to go someplace quiet, dark, non-smelly, and warm. Allow your brain to calm and start working again. This can take awhile if you are really sick.
So it is much better for you to stop things from getting to The Ugly Point.

So how do you help the brain manage all the info ... and NOT get to the Ugly Point?

For the noise, noise, NOISE:

Wear earplugs, for example. That cuts down quite a bit of sound. I have the best earplugs for that -- they have a cord that connects them and a case to put them in so they are easy to carry and less easy to lose. And stylish :)

People who manage bands and concerts use them and they are *fabulous*. I got the ones called Baby Blues because I have small ears:

http://www.etymotic.com/ephp/er20.aspx


Buy them. You will be surprised at how much they help.

What about the eyes?

Protect the eyes. In addition to staying away from things that are moving constantly (if you can), you should wear sunglasses. All the time when you are outside. The kind with all the protection like ones from Maui Jim. Excellent.

But what about when you are inside?

Colored lenses are VERY helpful. These are ONLY for inside wear because they will hurt the eyes if worn outside (unless they are sunglasses, that is).

Red lenses flattens everything. When I am very ill, they make my brain feel so much quieter and calmer.

But when I start feeling better? They flatten things TOO much and make me sick. So then I know, okay time for a different color. I use the blue ones now -- they feel wonderful. Soothing. Calming. They reduce the amount of info getting blasted in the brain and give me a bit more room back.

Okay, but what about smells?

Er... you are screwed.

Stay away from them if at all possible because they will take you down. Hard.

Garlic bread caused me to start shaking and burst into tears. Smoke does the same thing.
It also makes me so frustrated that I get angry because I CANNOT GET AWAY from it.

Worst situation for Lyme people... worst.

But before I knew all this stuff I am explaining now ... when I had no clue what was happening... well, it was terrifying to crash while out at a restaurant doing "normal people stuff" and find myself bawling.

Now? I bet you understand clearly why that situation -- a busy restaurant on a Friday -- would trash my system.

* Lots of movement from people, hands, moving silverware, waiters, chewing...

* Lots of noise from conversations, bursts of laughter, crashes of dishes, clinking of silverware, dropped glasses...

* Lots of smells from food, perfume.

I MIGHT last 10 minutes in that situation. Less if someone drops a tray of dishes.

So... what if you crash? What do you do?

Take yourself out of the situation. Go outside and sit on a bench. Get out of the restaurant to a quiet corner.

Or if you are home, go into a room, shut off lights, close door, turn off music, put in earplugs and lay down.

Give the brain a chance to regroup. It will... and so will you. Then go back out in small amounts of time. Give yourself a break BEFORE you lose your shit.

~~~~~~~~~~~

I hope this helps. I hope this helps you understand what is going on when you have Lyme and you feel "crazy" because you freak out in "normal, every- day situations". You lose it over smells or noises or driving in car at night or walking and the sun hurts your eyes or your head ... you are NOT CRAZY.

You have Lyme. You will get better from this but for now, right now, you have to help your brain manage its shit. Which means earplugs, sunglasses or colored lenses, and avoiding smells. Yes, it means not going to places you would normally go -- but it is only for NOW, NOT forever.

We will get through this. Hang in there.

When the Rug Gets Yanked Out From Under You

In my last post I tried to describe the process of how the brain gets overwhelmed ... it happened last week in a big, ugly way. It happened so quickly -- the crash, that is -- that I was sobbing before I even knew why.

And before I go further, let me just say this... I rarely cry.

And it is extremely difficult to write about this stuff. It is bad enough living through it once but living through it again when I try to explain it?

Very unpleasant. That is why it took me a week to even want to write about it. But I know others with Lyme deal with this so... I think it is important to try and explain.

Here's what happened:

I had been taking care of The Small Hairy One -- a small hairy dog -- for 2 weeks... she was very sweet and I LOVED her but very hairy. I say "hairy" because she did not have fur -- she actually had hair and this was important because, as Doctor explained when I told him about my crash, the hair moved, the dog moved. And my brain could not ignore any of it -- all of it went in and swamped my system.

So I was already in the shit and I have not even started the story. Strike 1.

The Man was home and he was playing music -- nice music but more input... and then he made garlic bread. The house was filled with the smell of garlic. I had no idea how badly smells affect me -- but they really do and now I know why -- they overload my system. You cannot get away from smells -- they surround you no matter where you go. Strike 2.

He dropped a dish into the sink and it broke a glass -- the noise crashed through my last bit of sanity and I snapped "Please don't do that!"
Frustrated, he snapped back and threw a huge handful of silverware into the sink with a loud head-splitting crash.

And I was done.

I started sobbing -- I mean sobbing. Noise and smell have powerful effects on me -- especially when I cannot escape them. The garlic smell was throughout the house... I was standing in the kitchen when the glass broke and the silverware was thrown in the sink.

I had nowhere to go

So what happened?

I have a 12-year old sweetie I always call The Child. She has watched me deal with Lyme and I swear she is magic in situations like this. She came over and put her arms around me tight. Just stood there, not saying a word. Just holding tight to me and wiping my tears.

Then she told me to go somewhere quiet and dark.

So I did. And it helped and eventually I came out to be with humans and The Hairy One again.

~~~~~

I tell this story not to make The Man look bad -- he's human and he has dealt with me being sick for a long time. People break stuff all the time. People get frustrated. They make noise when they snap. Shit happens.

But this shows how everyday stuff turns into nuclear stuff for someone with Lyme. There just isn't any room or flexibility for the normal shit that is going to happen in life -- glasses break. Music plays. Horns blow. Fire engines roar past. People wear perfume or burn food. People smoke. Dogs have hair. That is life.

But Lyme removes your ability to "pick your battles"... or maybe I should say "pick what you pay attention to". I have no filters right now and you need filters in life. You use them all day, every day, whether you know it or not. It's really hard without filters. It just is. People who get migraines understand this feeling because their senses get hyper-sensitive to light, noise, smell when they have a migraine. It's miserable.

As my brain heals, I will get my filters back but now? I have to just deal without them.

So how do you deal? There are some tricks I use that really help. Will explain in next post but right now am done.

Overwhelming the Brain

For someone who has never had a serious illness, it is overwhelming to listen to someone who is very very ill. When I first got sick, I talked to everyone about it because I needed to know I wasn't alone in all this. I needed people to listen.

But it didn't work out the way I expected.

I noticed that their eyes got distant and they unconsciously took small steps away from me.

It wasn't their fault -- it was mine. Hearing about these horrendous symptoms is, simply put, too much for the mind to deal with and your instinct in situations like that is to GET OUT.

That is also the reason I have never listed all the symptoms that have happened to me in this blog. I give tiny pieces in story form but never the whole big ugly picture. It is too overwhelming. But I think the brain is too important NOT to write about... it is one of the things that doctors just are not knowledgeable about. How can they be? They are not Neurologists. Thank goodness I have a doctor who DOES understand this stuff and has studied the effects of Lyme on the brain. Otherwise, I'd think I was nuts.

Anyway. Doctor explained the brain to me in a way that makes much more sense now.... he said that a normal healthy brain has ways of protecting itself from too much stimulus. You can choose to ignore or shut out info if it gets too much but if you don't, the brain protects itself. Kind of like circuit breakers on your electrical system... if the system is getting overloaded, it trips the breaker which stops the electricity.

Well, in someone with Lyme, the brain's normal defenses no longer work properly... there are no circuit breakers. None. They are all broken. This means that all input from everything you see, hear, smell, feel, and taste goes into the brain.
All. Of. It.

Dealing with the nasty symptoms is bad enough... that already uses up a big portion of your available capacity for dealing. So adding anything to that? Very quickly you will be beyond your brain's ability to deal. Too much.

Kind of hard to understand unless I take you with me as it happens... here is an example:


It is night. We decide to go out to eat. I am moving slowly because all of my joints are sore and I am unsteady from the pain in my hips and knees. As my Doctor keeps reminding me, pain in the body has a very big effect on the brain.
Strike one.

But I do want to try and go to dinner.

We get in the car... the bright headlights of the cars coming toward us on the road flash in my eyes. Movement of cars going past, houses going past. Not good. Radio is playing. People are talking in the car. Horns blare. A fire engine roars past.
Strike two.

I cannot shut any of this out -- it all blasts into my brain at once. Things are already going downhill and we are not even out of the car or in the restaurant.

We get there. It is crowded. Lots of movement from all the people. The lights flash off of the silverware and water glasses... clinking of knives as people eat, bursts of laughter, people talking, waitresses yelling for orders, names being called as their tables are ready... oops someone dropped a tray.
Strike three.

At this point, my brain is already shutting down and we have not even ordered dinner yet.

Tears slowly slide down my cheeks. I cannot control them, they just come. There is a name for this but I cannot remember what Doctor called it... Limbic reaction? I don't know. But it is your brain's response when it is overloaded.

All I know is that I am done. The only thing to do is to take myself out of the situation, somewhere quiet, dark, calm.


That, my friends, is how Lyme affects you. It overwhelms the brain and you shut down.

So what can I do to help myself?
Well, Doctor figured out ways to help protect the brain and extend the my limited capacity teensy bits. These things have saved my ass so many times...

• Ear plugs. They are called Baby Blues and the reduce the amount of noise but still allow you to hear a conversation. This relieves a little bit of noise from what goes into the brain and gives you back a teeny bit of room.
  
• Colored glasses reduce the amount of stimulus on the brain -- red lenses really flatten things a lot. I had to use them when things got bad in the beginning of this mess but am now on the blueish-purple ones. I don'tunderstand how they work but I know that they also use colored lenses with kids that get overwhelmed in school... the lenses reduce stimulus so that the brain is not receiving as much from the eyes. This gives you back a teeny bit more capacity.
  
• Figure-8 movement with one hand, the more complex with the wrist, the better. Doctor has to tell you which hand to use because it affects one side of the brain more than the other. Don't understand all the neurology with this but can tell you that it works. When the Lyme was affecting my vision in my right eye -- dark spots, not able to see out of certain areas in my right eye -- he would have me do the Figure-8s with my left hand and it *helped* my vision clear a bit in my right eye. Seriously.
  
• Writing the alphabet with your foot. Same issue as the Figure-8s -- you need to know which side to do it on. This also helps but I don't understand all the medical science behind it.

There are other things ... but you get the idea.
Sound weird? You betcha. It is even weirder when it works -- which it does.

I have found that it is essential to find coping mechanisms. Essential. Living with all this crap every day can frighten the hell out of you ... but when you have things in your toolbox that you can use to help yourself, it makes you feel hope. Because there are things that CAN make a difference in your horrible symptoms which means that these symptoms are not permanent and you are not destined to be stuck in this mess forever. You need that hope. It helps you get up tomorrow and deal with it all over again.


Having this kind of thing happen to you or someone you care about... listening to someone talk about it, watching it -- it all sucks. It just does... no way around that. I stopped talking about everything going on with me unless someone asks me how I am doing... and even then I always give them an out by saying "Do you want the details or just a quick answer?" I want them to be honest and wave the white flag and say "Uh no -- can't handle it right now but I still love you!" I don't take it personally -- it is not their job to deal with my shit. I respect my people too much to ever want to overload them.

Besides, I GET IT -- I know what it is like to be overloaded. I live it every single day. But that said, it is SO much better than it used to be, especially now that I have tools to help and know what to watch for. I can take care of my brain better and that is a Good Thing.