I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Thursday
Feb142019

The Face of Health

"You have to remember that while you're treating, you're a bit fragile," my LLNP tells me.

Fragile? I'm freaking like glass. Only my brain is too numb to know it, so I keep doing what I always do, daily, which includes work and taking a kid to a music lesson and tutoring and whatnot, then shattering at the end of the day, unable to rise from my bed to go to the bathroom. Don't worry; I eventually do. Haven't wet the bed yet. And I actually brush my teeth, usually for the two minutes my smart brush tells me to do but on those awful extra fatigue-filled days, I tell the timer where to go.

Put a Type A personality into a Type Lyme body and what do you get? 

I had a total slip at work this week. Spouted to someone who clearly didn't want to hear about medical worries (not my own, but in the family) for two minutes without so much as a breath between (that trick was good when I used to swim) and then, and then, oh boy. I am so darned sorry. Was it the antibiotics? Hormones? A caring smile? The worry running over my already full cup? I'd been so good. Had kept it all wrapped up in a super shiny package that would stay shut until I got home, or at least in the car, but this time, those worries oozed out, worming their way out of every crevice. Kinda like my dandelion tea when I don't put the top of the travel mug on correctly. 

People don't really want to hear, I tell myself. Like really! It's common to say, "Hey, how're you doing?" as a greeting but how many times does someone actually answer with, "Crappy as all hell"? Or "I'm dying here." Or "To tell you the truth, I could lie on my bed and stare at my phone all day, because electricity zings up my leg and my hair feels like it's being pulled out, piece by piece." 

So, maybe the electricity thing is exaggerated. I mean, it does happen to me, but once every few days or weeks, not daily, usually, and if I stomp hard enough, it goes away. The hair thing? Oh, that. I can deal. I'm freaking strong. Torture me, do it, and I'll survive.

I think I've forgotten what I used to be like. I've forgotten how it feels to live without pain. But hey, what doesn't kill you makes you stronger, right? Pain? Strength! Look at me, tough, tough, tough. I don't even FEEL the pain anymore! Ha!

Yeah, I do. If I stop and live in the moment and listen to my body talking, I hear it and it screams. Back, wrists, big toes. Down dog has never felt so bad. But it still looks good!

Fragile? I have to work. I have to support my family. I have to take care of kids. I have to write my book. I have to DO THINGS. I have to figure out a way to make more money so I can move somewhere warm eventually and travel. I don't have time for fragile. I also don't have time for Lyme which is why I'm trying so hard to beat it, why I'm putting myself through this pulsing routine which makes my body feel like it's been run over by a reindeer every other night since Christmas Eve (and now it's February.) But to be honest, there have been days off where I didn't feel quite so run down. Oh wait, that was the weekend and I slept in. Oh well. 

Fragile? There are people in my life who only want the good news. Smile for me. Tell me what's working. Tell me something good. You've had bad news in your life for too long, Lisa. (Like that's my fault, like I brought illness of my family onto myself. Oh, wait. Maybe I did. When my kid got sick, I wished it on myself instead and voila! It happened! Unfortunately, I did not remove it from said kid in the process. Doctors might conjecture that I gave my kids Lyme in the womb. Other doctors might say that's not possible. Those other doctors might know something that the educated ones do not--to bury their heads, not believe the world is round, to side with the CDC and big Pharma so that they don't lose their licenses. Oh, for freaking sake, don't get me started.)

Taking a kid for medical stuff at a NYC hospital. Parking, driving in the city--not my cuppa tea. I need a stiff drink. Bourbon. I like it. Wine gives me headaches nowadays. Unfortunately, I can't drink this week because I'm on an antibiotic that will make me vomit if I do. And by next week when I am off the antibiotic, I will forget about that necessary drink. Which is also why I like bourbon. Because the bottle doesn't go bad after you open it. Do you know how many good bottles of wine were used for cooking in my house? Because they were opened for one drink and then abandoned, forgotten, neglected.

Fragile. I shouldn't be drinking alcohol anyway. Or having sugar. Happy Valentine's Day to me. Came home with a shipload of wonderful chocolate gifts. I should be eating more shitake mushrooms and dandelion greens, coconut oil and healthy protein. I know I know I know. I've done the hardboiled egg breakfast so many times, trying to get enough protein in. I think I've turned into Humpty Dumpty.

Putting myself back together again. That's what this is all about. It's also about not living my life the way I intended it to be lived. Notice I don't write "the way it was intended"? 

Then there's the other side to being fragile--the side of listening to the messages of yesteryear (and mom and dad, if you're reading this, I don't blame you, I'm an adult and can at least blame myself for not getting rid of old messages.) Why the heck do I need to be so strong? In reality, I'm not, when I spend 95% of my homelife in my bedroom, with the other 5% running up and down to the basement to do laundry. Why can't I admit, at least to myself, that I feel horrible and that it's ok to take a down day on a snow day and not do anything at all? Not clean the fridge, not write my book, not plan more advocacy work. 

Something to think about when I clear this brain fog.

But in the mean time, all you'll see is my game face.

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