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.

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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.





It BURNS!

29 05 2012

Sometimes you are actually sick with a sick-making thing, like the flu. Or Lyme Disease. Or mesothelioma. I just wanted to say “mesothelioma”. Once you’ve ruled all that out, yes, Virginia, you’re in flare.

It started in the grocery store on the way home from a long holiday shift at work. I was fine, just trucking along all day, & then somewhere between corn tortilla selection & being confused by non-dairy ice cream treats, I realized I was off. Like ya do.

By the time I had pulled into our little subterraneanish garage, I knew I could no longer drive. I might as well have swallowed a bottle of Benedryl.

Thoughts go through your head. “Do I have the flu? Is this some weird supermarket virus? Am I Patient 0? OMG did that creepy bag boy drug me?!” And then you’re like, “Dude, don’t be stupid. You have fibromyalgia.”

Long story shortened, I was in bed by 8:35, which is weird for me, asleep by 9:05 (super weirder) and awake at 5 AM (Mayan prophecy time). I also felt…huh…sunburned.

I checked my back in the mirror, as I could clearly see my arms & trunk were not burned. No, no redness, no rash, no dryness. Just my usual silky smooth apocalyptic paleness. I took a shower & this eased the pain a bit. The moment I was dry, it came back hard. It continued throughout the work day. I kept checking to see if redness had developed. Nope; I was and remain white as a Radiohead fan.

I did notice during the day that my right arm was sore & not really working. My neck was also kinda screwy. But I didn’t have my usual muscle pain that comes with flare.

Oh, I also got lost on the way to work. I’ve driven the same route for over two years, but I pretty much know I’m in flare when I see landmarks I’ve known for ages and they seem horrific and foreign to me. I still got there on time despite being convinced I missed a turn.

I didn’t really overdo it at the grocery store, & my “long workday” was just two hours more. I don’t think that caused the flare. I have had a lot of stress lately. I’ve returned almost full time to my old job & taken up listening to people’s problems again, which is no biggie except that everyone else got used to me having more time for them for nearly a month & I receive constant complaints about one thing or another from friends & associates. I’m also watching people around me go kinda weird, which would be worrying if I worried. No matter how calmly I handle it, though, my body finds a way to process it. And today, it burns.

This is a transition period & not all of it is bad. Some of it is in fact phenomenally good. Some of it is a damn relief. My brain, though? My brain is all “Like, we’ve been talking, Nerves & me, & we, like, literally cannot handle what you’re putting us through right now. K? For serious.” My faith in God is strong & I don’t get carried away with other folks’ drama. I evaluate each piece of info I encounter, check it against reality, and not one of them has caused me to panic.

My body, however, is overloaded by other people’s reactions to me not reacting.

I think it’s getting better maybe.





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.





Face It; Flare Sucks

1 02 2012

I’m in flare, so of course my natural inclination is to start a fibro blog. Yeah, that’s slightly sorta really nuts, but WordPress has an app, & I can add posts from the comfort of my bed & the convenience of my iPhone. With fibro, you have to figure out how to do more with less. You get better than Norms at what might be termed Apocalypse Living.

Even though, technically, there’d be no Internet, probably, during the Apocalypse. Whatevs, people. MY BODY IS AN APOCALYPSE.

So here’s my super quick, flarebrained tips for dealing with flare.

1. You may have to work. If you can take the time off, for the love of God, do it & take care of yourself. If you can’t today, arrange for a short day. If you can’t do that, ask for the soonest day off. My appointment book had no one on it yet for tomorrow, but was nearly full today. I rescheduled my last client with another consultant, marked myself out tomorrow, & went home. Just do it. Don’t be a martyr. Martyrs end up on disability. Avoid that as long as you can (& you most likely can).

2. Eat clean. You know you shouldn’t be having MSG & high sugar anyway, but when you are on a flare you’ll only prolong it reaching for most prepared foods. If you don’t have something prepped & frozen, it’s ok to order out or have a spouse, boy/girlfriend or friend bring you something. You’ve got to eat, & it has to be wholesome food with some fat & fiber. Luckily I’d had the good sense to have a beef stew in the crockpot today.

3. Stay warm & hydrated.

4. Don’t stay completely immobile. If all you do today is shuffle around the house on crutches for five minutes, just do that. Immobility will make it worse, but obviously don’t over do it. If you can add some very light yoga stretches in bed (child’s pose, downward facing dog, cat pose), your body will thank you later.

5. Someone else can scoop the catbox & unload the dishwasher. If you live alone, ok, the catbox can’t go for too long. But the dishwasher? Meh. It’ll still be there when you can lift you arms.

6. Don’t drive. Please try not to, anyhow. In fibro fog, you have no idea where you’ll end up. If your arms & shoulder sockets hurt & are weak, you could have issues parking or even steering. And if your legs and ankles are freezing up, you could have acceleration & breaking issues. Get a ride or don’t go anywhere. Now is not the time to rush to a massage appointment.

7. If you’re too weak to brush your teeth or stay up in the shower, it’ll keep for a day. A quick hot shower when you’re stronger might help. Don’t fuss with the bath unless you can get help getting out, & you don’t mind that person seeing you nekkid.

As you can see, my sense of humour kinda died with the flare, but don’t get all serious on yourself either. If you can hold up a book or e-book, amuse yourself. Make a Twitter list of comedians & funny friends for days when politics & flame wars over your favorite TV shows aren’t working for you. Watch a wacky marathon on TV or your favorite movies or shows on DVD. Don’t go to drama town; make yourself as happy as possible.

If you have developed a flare coping mechanism, please share below!





Face It; Flare Sucks

1 02 2012

I’m in flare, so of course my natural inclination is to start a fibro blog. Yeah, that’s slightly sorta really nuts, but WordPress has an app, & I can add posts from the comfort of my bed & the convenience of my iPhone. With fibro, you have to figure out how to do more with less. You get better than Norms at what might be termed Apocalypse Living.

Even though, technically, there’d be no Internet, probably, during the Apocalypse. Whatevs, people. MY BODY IS AN APOCALYPSE.

So here’s my super quick, flarebrained tips for dealing with flare.

1. You may have to work. If you can take the time off, for the love of God, do it & take care of yourself. If you can’t today, arrange for a short day. If you can’t do that, ask for the soonest day off. My appointment book had no one on it yet for tomorrow, but was nearly full today. I rescheduled my last client with another consultant, marked myself out tomorrow, & went home. Just do it. Don’t be a martyr. Martyrs end up on disability. Avoid that as long as you can (& you most likely can).

2. Eat clean. You know you shouldn’t be having MSG & high sugar anyway, but when you are on a flare you’ll only prolong it reaching for most prepared foods. If you don’t have something prepped & frozen, it’s ok to order out or have a spouse, boy/girlfriend or friend bring you something. You’ve got to eat, & it has to be wholesome food with some fat & fiber. Luckily I’d had the good sense to have a beef stew in the crockpot today.

3. Stay warm & hydrated.

4. Don’t stay completely immobile. If all you do today is shuffle around the house on crutches for five minutes, just do that. Immobility will make it worse, but obviously don’t over do it. If you can add some very light yoga stretches in bed (child’s pose, downward facing dog, cat pose), your body will thank you later.

5. Someone else can scoop the catbox & unload the dishwasher. If you live alone, ok, the catbox can’t go for too long. But the dishwasher? Meh. It’ll still be there when you can lift you arms.

6. Don’t drive. Please try not to, anyhow. In fibro fog, you have no idea where you’ll end up. If your arms & shoulder sockets hurt & are weak, you could have issues parking or even steering. And if your legs and ankles are freezing up, you could have acceleration & breaking issues. Get a ride or don’t go anywhere. Now is not the time to rush to a massage appointment.

7. If you’re too weak to brush your teeth or stay up in the shower, it’ll keep for a day. A quick hot shower when you’re stronger might help. Don’t fuss with the bath unless you can get help getting out, & you don’t mind that person seeing you nekkid.

As you can see, my sense of humour kinda died with the flare, but don’t get all serious on yourself either. If you can hold up a book or e-book, amuse yourself. Make a Twitter list of comedians & funny friends for days when politics & flame wars over your favorite TV shows aren’t working for you. Watch a wacky marathon on TV or your favorite movies or shows on DVD. Don’t go to drama town; make yourself as happy as possible.

If you have developed a flare coping mechanism, please share below!