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.





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

 

Turnt.


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.





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 Care and Handling of Your Achy Crabby Friend

17 11 2013

Congratulations on your purchase of a friend with fibromyalgia! With gentle care & small considerations, you will have a friend for a lifetime. Please take a moment to read these care instructions, & refer to them any time your friend appears to be fraying or wearing out.

1. Friend With Fibromyalgia can provide a lifetime of laughs and insight, listening & loving. It cannot necessarily do all these things on a given day or week, however. You may go an entire month without being able to get your Friend With Fibromyalgia to work properly. Please do not return it to the manufacturer; ask it if it needs anything or leave it alone. It will eventually return to factory specs.

2. You can help prevent Friend With Fibromyalgia from breaking down. When enjoying an outing with it, do not hijack it for extra quick trips or keep it sitting in one spot for longer than is comfortable. “Can we stop at this divine little cafe before we go home?” is a perfectly valid question, but remember that Friend With Fibromyalgia may have a limited number of times it can get in & out of a car before it starts to malfunction. “Let’s stay for another movie” or “Come on! Let’s dance!” might also be answered with a gentle “No”, lest it go into flare. It does not matter if Friend With Fibromyalgia could dance or go into 87 boutique shops last week. The weather has changed/the work week was rough/God only knows happened & now it cannot participate. Let it go home.

3. If Friend With Fibromyalgia is in flare, or is going into flare, even texts are difficult. Your Friend wants to help you & loves you very much, but your Friend also hopes they will die very soon to be rid of the pain & fatigue, so unless something very serious is happening (death, dismemberment), please do not ask Friend for assistance. Have you ever had the flu while several bones in your body are broken? Would you want to hear about work woes or significant other gripes while dealing with that pain? Your Friend With Fibromyalgia might be too polite to say, but it is not capable of dealing with First World Problems today. If it does not respond, it is simply not functioning today. It does not hate you; it hates being alive.

4. You can’t fix that. Don’t worry about it.

5. Sometimes Friend With Fibromyalgia will say or text garbled messages such as “Zgdbr83!!” or “I think I’m an hour outside of town but I don’t know where I am I probably won’t make it.” The first instance might be fine motor stuff; the second is cognitive fog. In the first case just let it go; in the second case ask Friend With Fibromyalgia to please text you when they get home to let you know they’re ok. Do not be alarmed if they forget that, too. They get lost a lot.

6. If you can drive Friend With Fibromyalgia, especially long-distance or multiple-stop trips, that’s a very good idea. It will be able to do more with you. Let it get out & stretch if it needs to. You can tell because it will start twitching or doing weird things with its arms or neck.

7. No matter how adorable & supple your Friend With Fibromyalgia appears, it’s not a bad idea to treat it like your 87 year old grandmother, even if it’s a child. If your 87 year old grandmother could sometimes walk 3 miles on the beach or dance for two hours, wouldn’t that be awesome? Think of your Friend that way.

8. Your Friend can’t eat fast food. Consider meals with your Friend an opportunity to explore freshly prepared cuisine with no mystery ingredients. Friends With Fibromyalgia cannot be fueled by anything with more than 3 syllables American & 2 syllables English*

*Say “strawberries” to yourself first with an American accent, then an English one. A real one, not Dick Van Dyke. There you go.

9. Your Friend With Fibromyalgia does enjoy hugs. It does not enjoy being compressed enthusiastically, shaken, or clapped/pounded on the back. That’s why it doesn’t go to sports bars despite really enjoying screaming about what a fricken piece of crap loser Eli is. Suck on the failure, Eli! SUCK IT!

10. Go easy on the commercial cologne. Your Friend has a highly tuned nervous system & can smell you from 7 blocks away even if you’ve just had a 5 minute shower with unscented soap. A spritz of your cologne is delightful. A cloud will cause Friend With Fibromyalgia’s head to explode.

If you do not believe you can comply with the care & handling of Friend With Fibromyalgia, it’s ok to just enjoy their online presence & Like or Favourite their many amusing comments. Your Friend doesn’t want to be a pain in your ass any more than you want to deal with someone who is over sensitive in the most literal, physical sense.

Bonus care tip: Friends in Flare don’t want to be pitied. They do want to laugh or be distracted from their pain. Absurd is best; it’s an absurd disease.





Pretending to Be Normal

18 09 2013

Someone I’m quite close to asked me a while back “How are you doing?” & rather than give my tired old lie “Ok,” I said “I’m in a lot of pain today. Weak, too.” And he replied, “You’re always in pain.”

In my head I immediately responded “Yes, as I have a chronic pain condition. Some days are worse than others. Today is particularly bad, but I am never not in pain. That is an accurate assessment.”

But what actually came out of my mouth was “I’m sorry.”

Why do we do that?

For me it’s that I feel bad that I have come into someone’s life &, while I am at times amusing & even helpful, I’m also a source of consternation as I am a constant reminder of the fragility of the human condition. I dunno. Maybe it’s just that having a friend with a chronic illness might be annoying to normal people. I wouldn’t know.

So while I lie here in flare as my cats periodically pat at me & I’m earning 0 money, I plot ways to get more normal. I try to figure out how I got into flare & how to not make a nuisance of myself because of it. I can’t control the random drops & rises in temperature Los Angeles throws at me, so that’s just a thing I surrender to: “I am going to go into flare & there isn’t a whole hell of a lot I can do about it except not make it worse.”

I can control my exercise. As much as I enjoyed strength training & as much as I’d like to do that again, it is clear after months of new levels of chronic pain that I’ve probably done more harm than good. I have pains in my shoulders & triceps that I never imagined were possible. That’s fine right after a work out, but it should not linger for 4 months, nor should it worsen with normal daily activities.

I know I should exercise though, as it’s been shown to help, but now that there’s evidence indicating that fibromyalgia is a neuroVASCULAR issue disguised as a neuromuscular one, I wondered if there were new guidelines. I stumbled across this article. It focuses far too much on those who have developed fibro due to psychological stress tension (which arguably mine is, in addition to numerous injuries throughout my life), but its discussion of fibro vasoconstriction & the benefits of exercise there upon are worth the long read.

Somewhere toward the end, it explains what I was doing wrong. Low to moderate aerobic exercise has the most benefit in reducing fibromyalgia pain & symptoms. They did not overly look at strength training, but they present the argument that blasting one muscle group at a time is not going to increase circulation to all muscle groups in a condition characterized by widespread pain. And I said “Duh, I knew that!” So why did I take up strength training?

Because I’m stubborn & aggressive & sometimes I like to pretend fibromyalgia doesn’t exist. I like to prove to Normals that I’m normal. Well, I’m not.

What I clearly need to do is get back into gentle, short frequent walks or recumbent bike rides, then add back in gentle strength exercise like crunches & band work. I should be circulating, then toning, not “building” per se because I can’t really build. My muscles’ foundation is sand. Even my trainer noted that balance is my biggest problem (I’m sure proprioception issues don’t help).

If I want to stop feeling like a little old lady, I have to exercise like one. Seems counterintuitive, but sometimes physiology is like that. Do I want to run & skip & jump & do 100 kettle bell swings? Of course. But if I want to hold down a job, it’s ill advised.

Plus I’m tired of telling people I’m in pain. Well, more pain than always.