When You Literally Cannot Brain

3 05 2016

I am non-ironically talking, thinking, & writing like a Tumblr millennial. This is the actual best I can do. My flare now has deep cognitive involvement. 

This will probably be disjointed because I think I am saying what I’m thinking, yet I find that I am not.

Prime example: I called into work once I realized the dizziness was just going to be a thing & nothing was making it go away. I have learned it is a very bad idea to drive or interact with humans when this happens. I am also walking like I’m hip deep in ocean water, & I feel sunburned, & whatever weird thing was happening with my right arm yesterday is worse.

Wait, ok.

So I call in & in my mind I am thinking “Hello, this is Kellie Jane. I won’t be able to come in today because my illness has flared & cannot perform my job duties. I am very sorry.”

I think I said “Hi, it’s Kellie Jane. I am…not well.” Thankfully Tiffany on the other end must have understood, because she said “Ok, I’ll take you off, feel better.” I hope I apologized before I hung up.

This is about to sound toffee nosed: when your intelligence is the first thing people have noticed about you all your life (until your boobs happened…now it’s the second), not having intelligence is devastating. That’s not right…not being able to converse intelligently is devastating. Not being able to think clearly is terrifying.

I have developed empathy for people with dementia. I know exactly what I think I want to say & do. I think I know what I want to think. But it all fritters away, like blown dandelion seeds. You cannot catch them again. You stand inside yourself screaming at your mouth, your hands.

You get very discouraged. You know somewhere inside that this has happened before, and that it gets better, but you are not convinced of that today. You know that if you met a new person today, they would think you are very dull.

I will try to explain it for the norms. You know when you are so tired you can’t think of a word, or you have a fever & your thoughts sort of fly up into your frontal lobe, then sizzle & disintegrate upon landing? It’s like that but for a day or more.

It is comforting to remember that exactly what is happening to me now has been described by an actual doctor (who also has fibro):

I can’t even work on my book for fear it will end up even worse than this post. I can’t tell you how many times I’ve gone back & corrected stuff, mostly because I don’t remember.

If you are also having cognitive difficulties, I hope you find this & it helps you realize you’re not alone & that it’s not permanent. You’re just having a super hard time converting ATP into whatever we need it for, which I can’t remember right now.


What Is 101?! Fun With Flares!

1 02 2012

Today, I wound up on Arroyo, utterly convinced I was going home despite the fact that the 110 had ended I was now in Pasadena, signs for the Rose Bowl all around me. Depeche Mode fans are probably slick with giddy anticipation, but no. I wasn’t supposed to be in Pasadena. You see, I live in Encino. Off the 101.

You’d think I’d remember that, yes? No. In fact although I know intellectually that I live off the 101, which I can actually hear from my bedroom, I am convinced mind, body & soul that I live on the 110.

I am in fibroflare.

Some of you are groaning. My long time readers who recall my MySpace whinging of yore are so over this. The rest of you think I’ve discovered some scintillating new L.A. night spot where they bump Kei$ha next to Kajagoogoo, but no. Fibroflare is no club, & if it were, the only people who got in would be pummeled by the bouncers first, & the only drink served would be paint thinner with an Everclear chaser.

I have a condition called fibromyalgia, or FMS for short. It is a neuromuscular disorder characterized by widespread pain in all four quadrants, fatigue, cognitive discombobulation & motor dysfunction. The cog discombob is colloquially referred to as fibrofog, as your brain might as well have been vaporized into a mist, & flares of symptoms are exciting for friends & family alike. Congrats! You now live with an achy, stabby, crampy, electrical-shooty zombie voodoo doll. Yay you!

I am lucky enough to have been nearly symptom-free for several months, but not today. Today I am chronicalling this bastard for you normal folk from my iPhone in bed with an electric blanket turned up to Equator. I can’t sit up to use the lap top & only two fingers sorta work. But many of you don’t know about FMS, & seem curious, so now you’ve opened the flood gate for whinging. Go Team Aww Crap!

Here’s how it started. As many of you know, I’ve been kind of failing to sleep. This spells doom for the fibrowad (my name for how we feel when we’re like this, because it’s akin to being chewed gum). FMS is best combatted with decent sleep, as it allows our bodies to heal & our neurotransmitters to stop being drama queens. However, if you fail to sleep repeatedly, as I have, your body doesn’t repair itself & all those little microtears we all get during the day send pain signals to the fibrobrain, which then responds with all the drama & histrionics of a Southern Belle on PCP.

So yesterday I was walking to the kitchen & just kind of stopped being able to walk (it’s kind of like MS in that regard, which is what the doctor originally thought I had). I had to grip a wall for a minute & then I was ok. I thought nothing of it; I mean, I used to fall down crossing the street for God’s sake. Losing containment in my own kitchen? Not a big deal.

I then realized that I had somehow pulled a calf muscle, probably from the cramp I got Sunday night, the origin of which I decline to explain. Today, while doing a spot of acting for Tab’s mock trial at law school today (a very small, dim spot) I realized my shoulders & arms kind of were trying to kill me a little bit. The muscles feel like they’ve split up with the bones, told them to pack their things, & get the HELL out.

Then I tried to drive home. On the 110. I live on the 101. Allegedly. I still don’t quite believe it.

I also said “substicuting”.

I was not going to get home in time to eat & get to work on time, so I drove straight to work. I totally forgot the details of a client I’d spoken to 2 days earlier. That is VERY unlike me.

I then came home & hugged my roommate. Again, very unlike me.

My teeth are chattering. I’m in an electric blanket that is probably causing global warming somehow. Yes, it’s all my fault.

I’ve been preventing further flares with diet (keeping my Celiac disease in check) & movement, which is essential to fibrowads even though lots of us protest. Sleep & not eating regularly appear to be the triggers. Oh, & possibly denial.

I am currently reading Sue Ingebretsen’s ‘FibroWHYalgia’, which is awesome & is an inspiration for anyone with a chronic illness. It’s funny, which is essential, & hopeful, which is unheard of in books about FMS. Obviously I need to hurry up & get to the bit about flares…

So if I go really stupid on you (more than usual), please ask me what is 101? If I answer “Denzel Washington”, tell me I need more sleep. And stop asking me to do things.

Ok, I love you, buh bye!

Originally posted 4/16/2010 at my personal blog.