Raw Spewage

Updates from the battlefield ... fighting and winning against Lyme disease. Lyme bacteria rarely travels alone, by the way... so not only am I infected with Lyme bacteria but it brought along friends Babesia and Bartonella. It's one big keg party in here. But guess what? The party is OVER, boys. I am hammering you with IV meds and you are making me so ill as you fight back... yeah, you SUCK. But my meds are bigger and better and kicking your little bug asses to the curb. I win. =)

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Location: Palo Alto, California, United States

Writing has always been the best way for me to communicate my thoughts. And since my thoughts spew forth as raw, scattered, and random musings... the term "Raw Spewage" seemed quite appropriate.

Tuesday, October 27, 2009

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.

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