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.


Minimum Wage

20 08 2015

An Hour of Nyan Cat. Yay!!!
If you watch that, it is exactly how long I can do anything before wanting to die.

I figured this out via the best method I know how: brutal, raw, entirely unplanned experimentation.

I am incapable (without significant federal funding) of designing a double blind study that would give me results I could allow my peers to review & publish in a journal. This is because I am a ginger & a dunderhead. I must plow forth, bastard sword in hand, screaming “Bastards! Bastards all!” Which is super awkward at Latin Mass, which is how I discovered The Hour Rule.

You people have heard of spoons by now. Everybody with fibro knows about spoons. Even normies have appropriated spoons to deal with their fragile egos or whatnot. Now that normies have claimed spoons, hurties need a new thing. My thing is minimum wage.

Normies have unlimited earning potential. They get a salary plus commission plus a signing bonus, a Christmas bonus, & a bonus for being pretty & special & lithe & majestic, a bonus for that twinkle in their clear eyes, & paid time off.

Fibroblobs & other chronically ill folk get minimum wage. Don’t get me wrong; we’re grateful for it. But we have to think of where every dollar of it goes. We are living hand to mouth. There are no savings. We must budget.

Every time I spend an hour doing anything, I have to earn it back with rest, good nutrition, fantastic weather, & the grace of God.

“What does this have to do with Latin Mass & your experiment, you meandering twit?” you scream at your screen. Well, I usually go to Sunday high mass, which I think is meant to be an hour & a half, but is sometimes two, which is fine because I enjoy it. Or rather theoretically it is fine.

After comes coffee hour & that’s about an hour of socialization & hugging, followed by around an hour to drive back. When I am not doing well, High Mass is impossible. I cannot safely navigate it.

So I experimented with Latin vigil mass on Saturday, which I also love. There is no singing, which I miss, but there is still incense & there is a cantor, & sometimes there’s this amazing choral group called LA Schola. And it’s in Latin, which is a bonus except I learned Classical Latin & everybody else seems to know Italianate Latin. 

Latin mass has less people and is exactly an hour long, maybe even a little shorter. And I sailed. I could’ve done a little dance after. It was magnificent.

I then started timing chunks at work. I have been building walk breaks into my work ever since I was diagnosed (2006), but after the Latin mass experiment, I really paid attention to when those breaks need to occur before I get bad. You guessed it; it’s hourly.

Thinking back, this makes sense, but I was only using anecdotal evidence or “case studies” before…of my own experiences. I’ve avoided movies in the theatre, even though I have always loved going to the cinema, for about a decade. If there was something I absolutely had to see on the big screen (Lord of the Rings, natch), I would plan in advance to take the next day off work so I could recover. It’s that bad. But duh because hello those movies are three hours a pop!

I need to be able to do a different thing every hour. If I’m sitting, I need to walk. If I’m walking, I need to sit. If I’m lying, I need to rise. Yes, sleep is hard.

So I will be carefully spending my minimum wage of energy in an hourly fashion from now on so that all of you may get the very best of me, instead of the achy, lurpy, cranky me whose inner monologue is kill me now kill me now kill me now on repeat.

If I get up & leave, it’s not because I don’t enjoy you. It’s because I am about to turn into a pumpkin. Or the Hulk. Possibly Pumpkin Hulk, which I will draw for you some day.

Nicotine: The Bitch Goddess

27 06 2015

 I have been smoke free for a week. Yes, you’re right, I did in fact quit for 8 years straight, but then moved to LA, where smoking is banned everywhere, & naturally picked it up again. Because I’m an idiot.

But using logic & reason, I have been smoke free for a week. I will not make a giant fuss over how hard it is, much. I will not lie & say that it’s been easy. I will, however, discuss the unexpected effects it’s had on my fibromyalgia.

I noticed the very next day after quitting smoking that I had more energy. It was the level of energy a Norm would scoff at, but for us, just having the energy to scoff is huge. Imagine waking up with one extra spoon. That was what quitting smoking did for me within 24 hours.

The day after that, I handled my cravings by walking. I walked up an entire block & back. If you have fibro, you know that’s like normal people signing up for their first 5K. I felt like fricken Jackie Joyner-Kersee & shit. It was amazeballs. Then I had some grapes.

The next day, I did it again! And I had some grapes. And did a little housework.

The next day, I didn’t walk after work because I’d walked during a break at work & had wracked up the steps on my pedometer. So I cleaned two large boxes out of the closet, washed & folded them, put my old Too Big clothes in a bag for Good Will, and danced to one song. Yes, danced. Then had grapes.

You can already tell where this is going, as you read my last entry. Flare. With nasty arm pain I’d not had in ages, if ever. So that day I ended up only managing a half day of work, lying on the couch, & eating copious amounts of carbs. I craved a cigarette, but didn’t give in.

Friday I was able to work, but today I woke up kind of wonky. It never improved. In fact, I walked into a box backwards, somehow, the corner of which has brutally assaulted the area behind my right knee. I also can’t really talk & the smell of everything ever makes me want to throw up. 

The smell of smoke, the smell of unwashed clothes, the smell of smoke on clothes, the smell of smoke on hair, unwashed hair, whatever was happening outside of CVS today…it is maddening. My sense of smell was already keen & I have had to stop myself complaining all my life so I don’t seem rude & can actually keep friends, but this is ridiculous. I am stiff & on the verge of exploding with rage at everything & I have to breathe through my mouth to not throw up in this heat. Which is gross because mouth breathing is the worst. The worst. 

Did you know nicotine is a muscle relaxant? It is! I found this out yesterday after doing some research. My advice to you is to be smarter than me. See a doctor before you quit. Get a script for Flexeril or whatever muscle relaxant your doc recommends. I think this level of stiffness & pain might make a less rational person smoke again. I have been sorely tempted. But also the smell is making me angry so I have not given in.

Also I’ve nearly washed everything in the house (under my control) that has ever had a hint of smoke associated with it and I do not intend to start over.

For those of you wondering what method I am using to quit, it is simply questioning the use of smoking. “You are keenly aware of what smoke does to your vascular system & kidney failure is your biggest medical fear and yet you persist. Why? Are you still particularly suicidal?” The answer has been “No” for a while, so why not quit? And here we are.

My triggers are wanting to be outside & rage. I have come up with methods to handle them. I suppress the rage, which is almost just as unhealthy, but I’m not really in a safe space to let off steam. Wanting to be outside is remedied by waiting until it’s under 90 degrees & going for a walk.

So to summarize: QUITTING SMOKING IS SUPER GOOD FOR FIBROMYALGIA. Your energy goes up quickly. I’m down to one sugar free Rockstar a day & hope to switch to normal B sources soon. It does make your muscles stiff, even more so than usual, & between that & the extra energy you’ll want to use, you’ll be tossing away those extra spoons the moment you get them. So be careful. Flare is nearly inevitable, but you were going to have a flare anyway. That’s how we do.

So quit.

Another Day

25 06 2015

A fine but not recommended fuel source.

I awoke at 6AM convinced my right arm was broken at the tricep. I even bolted out of bed to check, despite this being 1.5 hours before my alarm goes off & having only gone to sleep 5 hours earlier.

The mirror betrayed no bruising, the arm was not particularly hot or swollen, & I lied back down, hoping to fall asleep. But the pain was terrible. There was no position where it didn’t hurt. I felt stupid, as the wife of one of my friends & the mother of 2 others is actually having her arm amputated today. I tried to imagine the pain this poor woman was going through & send prayers. Then it was 7:30 & I had to get up anyway.

There’s been a kink in my right neck for two days, but it appeared to be getting better so I had a quick hot shower & got ready for work. Hot showers either loosen up muscles & release fibro pain, or they hide it for a short time. This hid it.

By the time I got to work, I was hobbling like a little old lady, completely devoid of energy & incapable of finding words. I took 3 clients (God bless em) & left, only to realize I was very low on petrol (then left the gas cap off) & had no food (bought hot dogs & kettle chips).

I hate being a pain blob. It feels so stupid. I have no energy and I have meaningless pain coming from nowhere while other people actually suffer from actual injuries.

The pisser is that I suspect this all comes from a good health move. I had my last cigarette Saturday night. It hasn’t been too hard to go cold turkey, as I simply engage reason every time I want one. “You complain of fibro taking your energy, yet you want something you know will deplete your O2. Are you stupid?” And words to that effect.

And I have had more energy. A lot more energy. The type of energy that allows me to walk around the block every day, dance for a little while, do piles of laundry & put them away on the same day [the fibromyalgics are gasping “NO. IT CANNAE BE DONE, CAPTAIN!”]. I have cleaned two large boxes out of my closet to take to Good Will.

And I wonder why I’m in flare.

I may feel better, but I can’t forget I have fibromyalgia. Pacing is key. I must pace myself. And so must you.

Or you also will feel like invisible bees are assaulting your every limb while your right arm feels like it ought to be dangling by a sinew & your hips cry out for an ambulance subscription, just in case.

And carbs. All the carbs you will think you will need.

God, I wish I could sleep.

A Day

19 06 2015



I neglect this blog, so I’m going to try not to. Here’s a day in the life of a fibrobeing.

It started harmlessly enough. I awoke with my cat still glued to my face, which is how I fell asleep, & my sleep app informed me that I got 6 quality hours. A hot shower released the usual AM kinks, & I felt like I’d gained a spoon.

Fast forward to work, where a no call/no show client cost me an hour’s cash. This ended up being a blessing in disguise (God protects fools & gingers), because by 1PM my left leg was trying to cecede from the Union, my right arm seemed to be getting shot repeatedly by ethereal mafiosos, & my shoulders were all like “You bitch.”

After washing my hands, I had a spasm that caused me to punch the edge of a tiled wall, hard, with my knuckles. My left hand is now almost useless, which made driving home fun. It made grocery shopping an extra exciting adventure. I like to view these instances as my own Tri Wizard Challenge, because that’s more fun than being angry or crying, & it actually works.

Triumphs: the Trader Joe’s check out guy was super friendly. I also managed to completely avoid the comfort carbs I usually go for in this much pain, & loaded up on nuts, seeds, cheese (mmm, cheese) & fresh fruits.

I managed to park better than a well trained orangutan, & no one died. I typed this post with my one good hand. So I’m going to call this a good day. I am the world’s most pathetic Tri Wizard Champion.

Go Home, Fibromyalgia. You’re Drunk.

27 02 2015

If you see somebody stumbling around & slurring their words at 11PM on a Friday, your instinct might be to raise your glass to them & yell “Cheers, mate!” Or “Show us your boobs!! WOOOO!” because you are also drunk.

If you see somebody stumbling around and slurring their words at 11AM on a Friday, you hit social media & post “Damn, girl had a 40 for breakfast. #SMH.” But for real it might be fibromyalgia (or MS, or ALS, or MD, or any neuromuscular issue).

Most people start out their day with about five bucks worth of energy. In quarters. Normals have 20 shiny quarters jingling in their perfectly tailored pockets. Every activity costs a quarter, which means 15 minutes of parking in Los Angeles is worth about an hour of human effort. Believe that.

People with fibro (or lupus or the conditions mentioned above) start every day with $2.50. We also have holes in our pockets. Today I started with fifty cents. I wish I’d started with 50 Cent, cos then I’d have a ride to work (I presume in a Benz) & a shoulder to cry on when I learned Leonard Nimoy died. We might also have poured out a bottle of Crys. Anyhow, today would have been easier.

I had exactly enough quarters to get ready for work, then drive to work. I spoke to one client at work before realizing I sounded like that girl at the club at 2AM telling you how she was gonna be a nurse but she’s on, like, a spaniel journey. Uh, spirulina. No, spit…spiiii…spiritual journey! Yah!

I should have known when walking to my car felt like wading in the ocean. You always have pain with fibro, & a certain amount of weakness, but sometimes you don’t notice the low level flu-like pain because moving is tremendous effort. It doesn’t hurt, it just doesn’t work. Every step is like walking through mud, high snow (shout out to my East Coasties), or crashing waves.

By the time I got to work, I was like a marionette with a string cut. Lots of swooning. Falling into a chair, rather than lowering. My purse felt like three sacks of potatoes. A coworker said I reminded him of a Pokemon, Spinda,  that apparently sways a lot. I took a client, but could not say the words in my brain. I knew exactly what I wanted to say, but my mouth made something else. I may have said “pumice” instead of “proposal”. Forming sentences with my mouth continues to be arduous. I just told a cat to get off the whatever.

You can’t tell because I’m typing, & I get to take forever to say the right things.

So after an hour of seeming drunk at work, I decided to go, and seem drunk in my car. It’s really hard to turn a steering wheel when one of your arms is floppy & the other one is achy. But I made it home safe, without hurting anyone. I cannot say the same of the able bodied drivers of the San Fernando valley, but that’s a given.

Once your quarters are spent, you are running on whatever lint is left in your holey pockets. It becomes about nutrition, rest, fluids. It’s going to rain, and I’m almost certain that was my trigger today. Nothing I can do about that.

All I ask is that if you see somebody that appears drunk during an inappropriate time of day, don’t assume. We might have spent the 50 cents we woke up with just trying to get to wherever you are. Please don’t be impatient when we speak; we are trying so hard. And would it kill ya to bring us a bowl of soup?* You don’t have to do that last part.

*But for reals some soup would be nice.

The Lighter Side of Agony is OUT!

21 04 2014

I think I threatened a few times to publish the journal I wrote while I was going through the diagnostic process & the “coming to terms with” process of fibromyalgia.

Well, it’s here!!

I hope it helps. If it doesn’t, I hope it makes you laugh, which can kind of help.