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.





Flu or cold…who the hell knows?

7 01 2014

A cold is respiratory symptoms. A flu is respiratory symptoms with body aches & fever. When you have fibromyalgia, who the hell can tell the difference?

Your treatment protocol should be the same for any respiratory ailment plus flare because yes, you will go into flare. This means taking care of yourself, staying the hell away from people, imbibing gallons of fluids, OTC meds if you’re so inclined (they do nearly nothing for me), & heading to the doctor if it worsens rather than gets marginally better after 3 days, if there’s a fever, or if something feels wrong.

I don’t claim anything I do works for everyone, but I swear by ColdEeze & EmergenC at the first sign of symptoms. Even if they don’t stop it cold, they shorten it, & I personally prefer to suffer less. I also don’t feel like eating or have the energy to do anything, so drinking chicken broth heated in a mug in the microwave is a good alternative to actual cooking & keeps the electrolytes up when I’ve been saturating with tea.

Ok, I’m going back to sleep.





The Long War

13 08 2013

Sometimes, the disease wins.

You did everything right. You got enough sleep, you ate clean, with plenty of fresh vegetables & lean protein. You drank a ton of water. You took your supplements. You had a hot shower & did low maintenance hair & make up.

But sometimes, the disease wins.

You drove to work. Your right shoulder wasn’t cooperating & hauling your bag was like dragging a sack full of horses in the mud. You took a client. You realized you were losing words. You were nauseous. Your stomach ached. You decided to take a walk for a couple of blocks to loosen up your tight left side; sometimes that helps.

But sometimes, the disease wins.

After nearly throwing up & knowing you will soon be too dizzy to drive, you go home. Your right leg is weak, or maybe your ankle; you’re not sure any more. Either way, you are somehow having issues applying the gas pedal. You have to try a couple of times to get it right. Luckily this is LA & therefore you’re still operating a vehicle with more finesse and awareness than everyone else on the freeway. You make it home safely.

Sometimes, the disease wins.

You are convinced there’s some kind of smell in the house. It’s very sweet. You hurt, but you take out the garbage anyway because you don’t want to throw up. You come back to the house & it’s still sweet. It’s probably in your head. You question your sanity, the will of God, whether or not you really got a gluten free wafer at Mass on Sunday, & if you should eat ever again.

You then remember that you felt like this before, & you got better. Your faith is restored. Maybe the smell is gone. Maybe you should eat, but not right now.

Sometimes the disease wins. Fibromyalgia is tidal. It advances & retreats. Sometimes it floods your house. But it is a long war, & it’s worth fighting.

You consider doing some more edits on your fibromyalgia book. The thought of lifting the lap top sends you into a near panic.

Sometimes, the disease wins.





When Feeling Better Leads to MOAR FLARE

19 02 2013

Working out, repairing & building muscle have, over just two months, decreased my fibro pain a lot & increased my functionality some. Subsequently, I feel like a normal person a lot of the time (as long as I ignore my personality).

The problem with feeling normal when you’re not normal is that you behave like a normal person. That is to say, you stop managing your time like a fibroglob & start allowing yourself to be scheduled like Justin Beiber on an international press junket.

…well, kind of. At least from a fibromyalgia point of view.

I now realize as my brain goes limp, my connective tissues go rigid, & my belly makes alarming noises that I scheduled 3 fibro unfriendly activities 3 nights in a row. Two were absolutely essential, but one wasn’t really & involved sitting still for 3 hours straight. I should not have agreed to it knowing exactly what else I had to do on Saturday & Sunday. If the extra activity had been essential, I should have gotten up & moved around so that my back wouldn’t freeze.

What was I thinking? Well, I wasn’t. Knowing I had a 3 hour drive on Saturday & a 7 hour event on Sunday, I still agreed to dinner with a client on Friday. I figured “It’s just dinner, in and out in an hour. Then I can shop for Saturday.” I ended up, three hours of sitting and one hour of shopping later, being in so much pain I couldn’t sleep. I made truly idiotic breakfast choices on Saturday, was stuck in traffic for 50 miles, but had a wonderful time with my family. Sunday was fun, but I barely ate all day.

Today it is cold & wet. I’m loopy & achy. I can’t form spoken sentences.

WHY AM I SURPRISED I’M IN FLARE?

Work was slow today so I came home for self care, which involves a lot of hummus. My stomach is much less rowdy. My neck has abdicated. My shoulders and hips are enraged. But I’m not making it worse by slogging through, providing crappy service, & sitting in one position for hours. I’m also not a hazard to other drivers with my fatigue (uh, any more). The idea is to be fully functional tomorrow rather than in a full fledged pain coma.

Healthy days are great, but you must remind yourself they’re precious & only exist with careful scheduling of activities. The temptation to overdo is nearly impossible to resist, but we must. Or you too will be on the couch in front of Bravo with a heat pad on your neck & this stupid cat screaming at me.





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.





Deja Vu All Over Pain

1 02 2012

I’m starting to believe that fibromyalgia flare is the memory of pains past. Many neurologists & even rheumatologists believe that FMS is triggered by past trauma, as is evidence by many abuse survivors developing it, as well as those in car accidents and soldiers returning injured from combat.

More & more my flares are starting to feel like things that have already happened to me. Today, when I managed to get up for a hot shower, I noticed my left knee was inexplicably twisted in addition to the neck, shoulder, hip, & ribs aching, plus the palms of my hands burning. So that was like the time I tripped in a pot hole & went flying to the pavement.

People ask me from time to time what it feels like. I’ve said it’s like someone has a voodoo doll of you, but most people can’t relate to that. I’ll try to relate my pain to you in terms of what I’ve experienced, since I’ve never actually been hit by a train. I hope you cannot relate.

Sometimes it’s the mild pain & fatigue of the flu. In that case, I get up, have a hot shower, & go to work.

Sometimes it’s like when you were six, climbed to the top of an armoire, & fell off on to your back & couldn’t walk for days.

Sometimes it’s like when you were 13 & someone picked you up & hurled you against a wall, then dragged you up some stairs.

Sometimes it’s like when you were nine and rolled down a steep hill & sprained your wrist and your ankle.

Sometimes it’s like when you got in a car accident going 15 mph & ached for days after. I can’t imagine what people at higher velocities suffer.

Sometimes it’s like when you were 16 & someone beat the crap out of you for several minutes.

Sometimes it’s like when someone picks you up & drops you from over their shoulders.

Sometimes it’s like being punched hard in the gut.

Sometimes it’s like when you were three & went tumbling down a full flight of concrete stairs.

And sometimes I wonder how I ended up with fibromyalgia. Hah!

These are just the most relatable snippets for those who wanted to understand what it feels like. Why did I go into flare this time? Well, sir, I went to Ikea, and then to Trader Joes. I carried in everything by myself. Yup, my body has become THAT stupid.

Of course I went to work Tuesday on wobbly legs & made myself worse. C’est la vie.

In happier news, fibromyalgia has never killed anyone. It’s not like MS or ALS or MD; it is not degenerative that anyone can tell. It’s kind of like a pain seizure, which is why seizure meds work on some of us. Most of us can manage with diet & mild exercise, plus occasional narcotics & relaxants. Some are on 24/7 narcotics. Some are on disability.

Me, I have more good days than bad now. But sometimes I wake up & it’s like past events have happened to me all over again, like today. Today I am naming Pothole Redux. Which, incidentally, is a great name for a Cars cover band.

Originally posted March 16, 2011 to my personal blog.