Wading through the high water as more pours in

At times, I am afraid to go to sleep. Sound weird? Well, it is just terrifying to wake up with some new symptom that wasn't there when you went to sleep. You think, well if I stay up, I can be the guard and keep something new from sneaking up on me.



Ridiculous, I know.

I don't ACTUALLY stay up all night but... I still find it hard to go to sleep. I've been trying to change that because, hello? Sleep is the best thing for me -- not to mention a perfect way to pass the time and NOT be surrounded and aware this mess. And "this mess" is exactly like being in a room where you have to get to the door on the other side and the water is pouring in.... you have to not only wade through the deep water around your legs but push against the force of it flooding in while making sure you keep your eyes on your goal - THE DOOR.

Oh and you have to also not lose your shit in the process. You have to find a place of balance and allow yourself to KNOW - without a doubt - that you will make it through to that door. It doesn't help to lie, by the way -- you know, saying stuff to yourself like "The water is not here and it is NOT cold... or deep... yadda yadda".

It doesn't help at all.

Why? I have a theory... newly formed. When you lie, it is just making yet another obstacle for yourself. I mean, your brain knows there is water and it is deep and it SUCKS. Why not just call it what it is? It doesn't make it any worse -- in fact, I've found that it helps when you say "Yup. This SUCKS and I HATE this damn water and how cold my legs are and how hard it is to move through this crap."

It is what it is. Ackowledging it doesn't make it worse. It actually allows you to just be in it without fighting it and THAT, my friend, is one thing that I am discovering is hugely important.

Extremely difficult, this surrendering thing. It has always felt like surrender means giving up.
Nothing can be further from the truth. Surrender is just allowing the situation to be what it is. Yeah it SUCKS to be here but here is where I am so how can I make this even the teensiest bit less SUCKING? I've found that humor is quite effective. It distracts you and also makes you laugh... exactly what you need when facing really shitty stuff.

Don't get me wrong -- sometimes it takes all of my strength NOT to just let myself give into despair and frustration... I mean, ENOUGH already. I want my life back. NOW please. But I do not have control over that... all I have control over is how I handle things. That's it.

I know I said I'd give a list of all my symptoms but I went on a tangent and ran out of energy. Maybe later. Although, that said, you have a pretty good idea how limited my energy is... VERY limited and it goes quickly.

Bar Fight Rages On... but is that some SUN I see?

It has been sunny the past two days and I sat in the sun.
It was wonderful.

The bar fight rages on. My doctor had me stop the medication to let my system regroup... to be honest, I cannot tell much of difference. I mean, there are some small things that are better like having a bit more energy... and actually *feeling* hungry which I have had trouble with. My weight is still way too low but am doing the best I can. My vision is still good -- not dimming like it was, no dark patches, no blasts of light when I look to the left... so that is very good. I still have horrible cold spots on my left side with patches of numbness but there are also times when my feet are actually *warm*... so warm, in fact, that they feel hot and swollen. I asked Doc about that and he said that is the brain perception thing.
It is SO helpful to have people who understand and know this shit. Seriously. If I was at a regular Neurologist? I'd be on medication for MS which would be a HUGE problem since those meds do not work well for Lyme people.

Doc told me that I need to think of what I am going through as chemo because that is exactly what it is... we are killing off bad stuff in my body and the fallout from it is awful. I have lost huge amounts of weight... not to mention hair... my apetite is shit... etc etc. Anyway, I had a great conversation with a guy who went through chemo and he had the best suggestions. It was a relief to just be on the same page with someone... I mean, he is cured now but his prognosis was not good at one time -- at least my prognosis is excellent. I CAN be cured -- but getting there is hell on wheels. He said my situation is worse in some ways than his was because at least he was knew generally what to expect ... how long things might last or what might happen. Not so with Lyme. Here's what he said that helps:

• Get the big DVD sets of the TV series. The short episodes of 1 hr are much easier to make it through and give you something to look forward to. We have been doing this and it really does help -- I can make it through an hour but not much more. We love Chuck... plus I also started the Shogun movie from the 80s. Not to mention American Idol is back...
• Sleep. It passes the time and helps you heal. Yeah, don't have much choice in that since I am exhausted all the time. And sometimes I am so damn sore that it just hurts too much to sleep but once I get the pain under control, that helps.
• Take your pain medication. Yeesh, the pain gets very bad sometimes from how much my bones hurt and ache inside. The migraines have eased up so YAY for that. Doc says that controlling pain is critical for me right now because the brain does not do well with pain. It causes more swelling which causes more scarring which causes worse symptoms. Not good. So I am trying to stay on top of things.
• Tell people what you are going through. This was a tough one for me until things got so bad. I mean, now that I can tell them this is chemo, it makes it a lot easier to explain. I used to try to suck it up and deal with it myself but ... I can't. I am just not capable of doing that anymore and it does a disservice to the people who are in my life. They need to know how bad things are -- things WILL get better but we are in the UGLY part right now. The Lyme is a living organism. We are using meds to kill it. It fights back by dumping toxins into the body -- hoping if it makes you miserable enough, you will stop the meds. Plus when we do kill it, the body has to have energy to get rid of the dead stuff. It is a huge mess. They have found that giving the body a break is a good thing -- lets the system catch up and get rid of crap and regroup to take it on again. So tomorrow I start the meds again.

Eh. Am running out of energy. Will write more tomorrow if I can. Today was a bit better -- I'll take that. Alan was home and it was so wonderful to be beside him. He didn't sign up for this shit -- and it sucks that he has gotten dragged through it with me. It really sucks.

More later.

Bar Fight

The best way to describe what is happening in my body is to use the example of a bar fight or a riot. I have had the misfortune of experiencing both...

I was at some crappy small town carnival, packed with people, when a fight broke out between 2 guys and INSTANTLY wave after wave of people started fighting and it swept everywhere. The violence was so fast and so furious that it was just like what happens when you are in the ocean in that bad spot where you keep getting hit by wave after wave. It swirls all around you and it was all I could do to duck my head and get out by weaving my way between and running as fast as I could. It was only after I was far enough away that I felt all the bangs and bruises that I got from pushing my way out and shoving the flailing fists and feet out of my face -- when you are in that mode of survival, you just don't feel the "small" stuff.

Well the same is true when your body is on high alert and feels like it is being attacked. Or when the bacteria you are hitting with potent medication feels the threat to itself. Survival mode kicks in and the only goal is to make the threat STOP. The bacteria does that by making releasing toxins that make you feel BEYOND horrible... the bacteria is smart -- it thinks if it makes you feel bad enough, you will stop the medication.
Well, in my case right now they are causing excruciating cold spots that are causing my legs to shake so badly I cannot walk. My hips are so agonizing that it hurts to sit. To lay. To move. My feet feel like blocks of wood which make it incredibly difficult to walk across a carpet to make it to the bathroom... I tripped yesterday and lost balance and smashed into the wall.
It was excruciating pain and humiliation and... well...

It was FUNNY.

"Funny?" I can hear you say, "How can running into a wall be FUNNY?"

Like this: I am 5'6" and the virus has made me lose a huge amount of weight so I am tall... but all gangly and spindly and leggy. Like a big spider right now. When I tripped, I was carrying a bottle of pills that went clattering.
My husband was in the other room... he heard the BANG and BOOM and CLATTER and WAAAAAAAAAAAAH of me wailing and instantly comes over to me asking "What went clatter? What went clatter? Are you okay?"
I'm crying and eventually get out "I fell... and it HURT... and I dropped my PILLS..."
And he helps me sit down and starts to laugh... out of relief and at the picture he had in his head.... he said that he didn't see it happen but he heard the clatter and that made this HUGE picture in his mind of all of my spider limbs flailing around and clattering as I tried to regain my balance.
Which was very funny, in a sick demented way -- and it made ME start to laugh... at myself as a spindly spider, clattering around.
In fact, we both started howling, tears pouring down our faces.

It was funny and THAT, my friend, is the way you keep your sanity and heal when things are this bad. You can't choose the things that come your way but you CAN choose how you deal with them. And laughter feels SO good. It allows you to say "it is what it is" and "I look like a spider for now but that will change" and "I think I may get one of those little plasma cars that kids ride and use THAT to get through the house".
Oh yeah. We have a PLAN.