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.





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.





RSVPish

22 02 2013

Friends of fibroblobs hear “I’m sorry; I can’t make it,” a lot. It breaks our hearts to say it, & we know we’re probably hurting your feelings. You only have one Christmas party a year, or one birthday, or one bar mitzvah. And we really wanted to go. We tried. But we also fell asleep while putting on our mascara. We fell on the way to the car. We couldn’t turn the key in the ignition, & our right leg cramped as we tried to pump the gas peddle.

We realize we’re pains in the ass. Please don’t stop inviting us.

“But how come you were able to go to The Who? The opening night of The Hobbit? Jenny’s tea party?” We were well then. We may actually have been kind of unwell, but we’d flaked on all those people before, so we slogged through it. Or we paid for a ticket or the friend was in town only one night. We’d already missed too much work, so we made it through the day & crashed upon getting home. We overdid it. Now we’re missing the pleasure of your company.

It is never personal. Sometimes we’ve shown up to things with you while in tremendous pain, but the fatigue wasn’t so bad that day, so we just dealt with it. People I talk to with fibromyalgia almost invariably tell me it’s not the pain that keeps them home (most of the time), it’s the fatigue. Imagine being in a 25mph car accident, but also not sleeping for two nights. That’s us in flare.

I’m very lucky in that I manage my disease well with diet, exercise, & prayer. There is not a damned thing I can do about the weather, horrible LA traffic, or overwork. Fridays I am almost a guaranteed no-show, as I’ve been at work all week & I have nothing left. Sometimes if a thing is close by, I can do it for a short time. Sometimes I will come, but I’ll be late. So please don’t stop inviting us. We’ll always try super hard.

Even if you say you don’t care what state we’re in, remember I have to think of my safety & the others around me on the road. Even if I get a ride, will the other people there understand that I just want to die & am not actually a bitch? If you remember me as that super fun girl who danced for an hour at the last girls’ night, will you want to see me as a decrepit crone?

If we tell you we have a flat tire or a family emergency, that’s the truth. It’s not a fibro excuse. We trust our friendship enough to tell you “I’m so sorry; I can’t make it. I am sick today.” You don’t have to understand. We in fact pray you never will.

If you do want a brief introduction to what it feels like to have a chronic illness, this is a fantastic and well known story by someone with lupus. It applies to MS, fibro, RA, & CFS, too.





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.