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.

Advertisements




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.





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.





Survival Guide for Cold, Wet Days

25 03 2012

It’s exceedingly cold & wet in Los Angeles now. The rest of the country laughs, as well they should. Weather that other regions deem normal creates power outages, flooding, & driver incompetence here. Yet no matter where you live, fibro sucks in the wet & cold. Here’s all I can muster for you in this instance:

1. Stay indoors.

2. Stay warm. Hot shower, electric blanket, & wear most of your clothing. Pile cats or other living creatures on you.

3. Order in healthful food. Trust me, you shouldn’t lift or stir anything today.

4. Rinse, repeat. The day is a wash. Just surrender to the stupid. And watch something funny.

5. Nobody normal will get it. Oh well.





Fierce With Fibro

1 02 2012

So your neurologist has finally given you a diagnosis & your first thought is, “Great. Swell. That’s fantastic, Doc, but how do I get back to who I was?”

Because you were that bitch at the club, at the bottle table looking fly. Right? But for the past two years you’ve been dragging your raggedy ass outta bed, wondering what happened to all your “friends” & if you’ll ever be fantabulous again.

Bitch, please. You’ve got this. No, you’re not going to be at the club three nights a week until 4 AM. But you can go again. Sometimes. And in between, you’re going to have dinner with friends & show up to work looking like a lukewarm mess, right? So what’s a girl to do when repetitive motions are needed to look fantastic?

Modify.

You are not going to give up make up & hair. There will be days when it’s fine to forego, but many days you may be feeling kinda meh, but want to look pretty “Oh hell yeah!” So here’s some quickie tips for looking like you made an effort without putting your achy self into flare.

1. Take your hair type into account & get a cut that can air dry. As you can tell from my home page, I cut my own hair into a bob for reasons I am now questioning. This doesn’t air dry well at all, since I have wavy, fine hair. It does curl very quickly, but I have to use a curling iron, & sometimes that hurts. Don’t be like me.

Ponies are not always a good idea. As you already know from experience, you can get pony headache. With fibro, you will get pony headache, neckache, shouldersheer & Please Dear God Put Me In Traction Ache. If you’ve gotta do a pony, go low, or do a loose braid & fasten it at the bottom only. If you can handle a spin pin or clip on your head, that may hurt slightly less. When you’re feeling a flare coming on, though, less crap touching your scalp or pulling on your hair is better. Air dry.

2. Ok, so it’s 80 below outside (or feels like it to you, thankyoyverymuch), so you HAVE to blow dry. I learned this tip watching Anna Nicole Smith, who had lupus. You know our lupine sisters feel pain, too. She laid on her back on her bed with her head over the edge & blew dry that way. Yeah, your arms are still up, but there’s less neck strain than standing or sitting, your arms don’t go as high, & you still get a bit of lift. If you’re super sensitive, use Warm instead of Hot. Always finish on cold to set the shine.

3. Have a neutral all-over eye shade for days when you just can’t master the 3 & 4 shadow smoky eye. With my skin tone, I like to use a very pale shimmery silver or white. I also have a pale golden tawny colour. Do a wash of your whole lid when the hand-eye coordination has deserted you for some healthier bitch.

4. Speaking of eyes, some days, eyeliner is a hazard. Or a disaster, even w/out blinding yourself. I tried to do a 50s cat eye once when I was heading for a flare, & I looked like someone had punched a hooker. If you CANNOT function without smoke, get a dark shadow & gently sweep a little in the lash line. Put away the liquid liner when you have the shakes. Your eyesight is more important than your signature tick.

5. Lip gloss, not lip liner & certainly no Mac Russian Red on days when you could spasm & end up looking like the Joker.

6. To save wiggy arms, do your SPF 40 moisturizer & SPF 40 foundation together. Pour a little foundation on to the blob of moisturizer in your palm, mix, & apply. I’ve been doing that all since my last flare last week. Doing it twice just hurts too much. No, it doesn’t give full coverage, but it covers enough. If you have the energy to dot a concealer brush over bad spots, that’s enough.

7. Remember, when you’re heading into flare, all the make-up you put on will have to come off. Get some make-off wipes if you can’t scrub. I’m a huge fan of flannels (washcloths to Yanks) because they do the scrubbing for me.

8. If you have to be somewhere but cannot get up the strength to wash, dry, & style your hair, do not be afraid of dry shampoo. Oscar Blandi’s is nice & lemony. If your arms are very squiggly, though, go easy on it because you have to massage it into your roots. If you spill a lot on there, you will look like a high school kid playing an old lady role on stage. And that powdered wig look doesn’t go away unless you brush the crap out of your hair. If your arms are bad, brushing hurts. So be careful.

And here’s the reality check: if you’re going into flare, cancel your plans. You wouldn’t go clubbing with the flu, so why would you go in flare? Your friends will make do without you. Remember, when you are in flare, you are sick. It’s ok to tell people you are sick. Your body is mad at you; it will stay mad at you until you apologize to it.

I know I have a thousand other little short cuts for achy times, & will post them in future as I think of them. If you have any, 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!





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!