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Showing posts with label fibromyalgia flareup. Show all posts
Showing posts with label fibromyalgia flareup. Show all posts

Friday, August 29, 2014

I can't let this disease win...

Firstly, let me say that the new drug still seems to be working well. I've had a few rough days now and then, but those days were also pretty bad weather days (high humidity, thunderstorms rolling through, and in one case, we were actually being rained on at faire). That said... let's go to the title.

Last Sunday, I was in a full-blown flareup. Every muscle ached, moving caused me great pain, and walking up and down the hill at Bristol was damn near impossible. Damn near. Every weekend this season, my left foot swells up along the bottom (the outside edge down to and including the heel). I've tried all manner of insoles (I have doctor-given orthodics and for some reason, they're causing bruises on the arches of my feet and I've had them for five years now). I've been doing one day with shoe inserts and the second day with only the soft double-foam inserts.

Now, I try to do things during flareups. Nothing serious- I'm not going to mow the lawn or participate in a power-lifting competition- but you know, just stuff. Mostly it's photography stuff- like taking macro shots of flowers and raindrops or even going to faire.  There is no way I will let this disease keep me from a faire day. I get asked by folks now and then why I do it. Why do I cause further pain to myself? (it's usually said in a "you're so strong" capacity, not in a "what the fuck is wrong with you, lady" way).

If I don't get up, if I don't go to faire, if I don't take my photos, or put on garb, or do any one of the things I do during a flareup, then the fibro wins. And I don't want the fibro to win. Fibro sucks sweaty donkey balls and I can't let something that sucks sweaty donkey balls have what little joy I find in life.

And honestly, take a look at these photos and tell me- why do I do what I do? Because I fucking love to do it. I love these people and I love what they do and I want to be a part of their world. And they care, because they're awesome people. Getting through a flareup, surrounded by people who actually care and who also make you forget how stupid this disease is for even a minute- well, goddammit, they're worth it. They make the pain I'm in at the end of the day worth it. I want to be with these people, I want to share their amazing talents with the world, and I want to be needed.

However...

There are plenty of photographers at the faire- official and unofficial. The faire doesn't need me to take these photos and hell, even if I didn't show up, the faire would go on and these moments would still happen. But if I sit here at home, whining and lamenting how much pain I'm in, instead of walking around the faire and capturing moments, well, that might as well be the end of me. I don't want to give up. I may end up in pain, I may cause myself extra pain, and my left foot might look like a flipper for three straight days... but goddammit, I am not letting this stupid disease take one more thing from me. It has taken enough! NOT ANY MORE! (that's a silly joke with my kids- "not any more").

And, with that I say good night and I'll see you at faire. Enjoy the tsunami of ren faire photos.

Joust to the Death- Opening day

Royal Falconer

Dirk & Guido, The Swordsmen

Sir Maxmillian & Duchess of Kennilworth

"If I lick it, it's MINE!"

And then this happened...

This is my favorite expression...

Calling the Phantom to the hand.

Drake and Raleigh

Dandelion

Joust of Skill- Sunday

Sir Maxx on Elliot during the Joust to the Death

Epona, the storm fairy

This kid...

Joust to the Death- Sunday

Flight of the Raptor

Sea Captains Wooing the ladies

Flight of the Raptor

Chastity Trollop

Joust to the Death

Sir Walter Raleigh is a little scared..

Percy the European Barn owl

Tournament Joust- Sunday

Ladies of The Jousters

Joust to the Death- Sunday

Dirk & Guido at the Opening Gate show

Tournament Joust- Saturday

RenQuest street fight scene

Tournament Joust- Saturday

Kyle D.  toasted the military

Tournament Joust- Saturday

Tribute to the Military, Nobles Glade

Queen's Joust

Joust to the Death, Saturday

Tournament Joust- Saturday

Photo shoot with Captain Sir John Hawkyns

And then this...

And then this...

Don Vincenzo di Sicilia

Tuesday, April 22, 2014

Four straight days of this garbage...

I'm in my fourth day of a flareup. A word I hate, because like "hot flash", it implies that it is a short burst of whatever and then gone. This is a flare-drag-on-and-on-and-on-and-on. Not to be confused with a "flare dragon" which is the most fabulous dragon  in Dragon Land.

Fibrofuckingmyalgia won this round. I've taken daytime Vicodin even though I don't have to go anywhere or do anything. And, it isn't even helping.  I'm only wearing clothes because society frowns on the whole "taking my dogs out while naked" thing. You know how society is- "Don't do this" and "don't eat that". Ridiculous because "this" and "that" are usually the most fun things you can do and eat.

Fuck society and fuck fibromyalgia.

I can't wait for ren faire season. I would rather be dealing with this while dressed in *ridiculous clothes and standing outside with a group of people also dressed in *ridiculous clothes.

*ridiculous= awesome.

See? Look how happy I am even though I'm probably in a lot of pain (depending on what time of the day it is).


150 of 365 Part 4: Me, the Yeoman with the pretty eyes, and the Duchess with a Canon

157 of 365 Part 4: Lady Gwendolyn and her boys-

192 of 365 Part 4: Not just one, but TWO jousters!

165 of 365 Part 4: "Now THAT'S a Boobshelf!"

172 of 365 part 4: Look, I have a portable one!

185 of 365 Part 4: "We're tho thecksy"

193 of 365 Part 4: It seems that I've caught the Black Plague

200 of 365 Part 4: Me and Eric! Slightly out-of-focus.

242 of 365 Part 4: How I spent my weekend...

Monday, March 10, 2014

Sleep. Sleep is for the weak!

I am actually sleeping. Not right now, of course, because sleep-blogging is a talent I don't possess. I barely have a talent for blogging in general, but I digress.

I'm not sleeping well. I'm not at the level I was pre-diagnosis, where I was waking up every 60 to 90 minutes, but I can tell I'm not sleeping very good. When I go to bed, I don't sink into my bed with the slightly gushy feeling of someone on muscle relaxers. I don't know for sure if I'm waking up like before, but I know I'm not restful in my sleep. I've woken up having night sweats (yay, peri-menopause!) and I've slept through my alarms- yes, plural. I have four, set ten to fifteen minutes apart. And then we did that "spring ahead" thing and my brain is just laughing at me about THAT. I'm tired, but in that "I'm not sleeping enough" way and not the "I have a chronic illness so I'm going to lay here on the floor and cry for a while" way.

Today, I woke up about an hour after my final alarm and that was after going to bed by 1030 PM. When I tried to sit up, all my muscles were aching. My important joints (elbows, shoulders, hips- the "big" ones) felt like they were being pressed together and my feet weren't even on the floor yet. Even my abs hurt. My abs feel like I've been doing crunches. My muscles are achy and my joints are sore, and my abs feel sore and tight.

I've come to one of two conclusions.

1- I secretly work out in my sleep. I say "secretly" because even I don't know about it.

Or... 

2- I am secretly a superhero at night. And apparently, last night, while on my patrol, leaping from rooftop to rooftop and standing dramatically on building ledges with my hands on my hips as I surveyed the city's skyline, listening for a mere mortal to cry out for help, I obviously got into some kind of fight with a supervillain. It couldn't have been my archnemesis, though, because I didn't wake up on an oddly elaborate setup with a conveyor belt and a laser at the ready to cut me in half.

I can only hope that it is Theory 2 because being a superhero would mean I get to wear cool clothes in the off-season, but waking up all sweaty for no reason makes me lean to Theory 1...

So, those are the possibilities. Working out at night or Superheroing at night. Because who needs sleep?!  I mean, besides me, because I'm exhausted.

Wednesday, September 25, 2013

What happens when you get ALL THE SPOONS!

"Spoons? What the hell are you talking about, crazy lady?" says you, in a really snotty tone. I mean, really, we're one sentence in and you're already sighing and rolling your eyes. Aw, c'mon... there's going to be photos related to this down below. And maybe some illustrations!

You'll love the illustrations! I'm so talented.

Not at illustrating, just in general.

First, let me link you over to The Spoon Theory by Christine Miserandino. Go on, go over there and read it. I'll wait here...

Hey, while they're over there reading the article, I'll just talk about the gist of it- you see, the "spoon theory" uses regular old spoons to demonstrate how people with chronic illnesses get through their days. You start out the day with X-number of spoons. Each task takes a spoon from you. Some days, you have a HUNDRED SPOONS and you never run out! Some days, you have no spoons and those days suck ever-so-hard (and not in the good way, know what I'm sayin'?). Some days, you have four spoons and the very act of getting out of bed takes a spoon. Walking down the stairs takes a spoon. Getting your breakfast takes a spoon. And you're down to one spoon and you haven't even gotten dressed yet. And guess what? Those hundred spoons you had the other day? Yeah, you don't get to keep those. They don't carry over like those rollover minutes on your outdated mobile phone plan.

What's all this got to do with me? Well, I'll tell you...

Welcome back, guys. Did you enjoy that article? I hope so. It made me cry the first time I read it. But then, yesterday, I cried during "Independence Day", so don't listen to me about things that make me cry. (it was the Russell Case scene when he says: "Do me a favor... tell my kids I love 'em..." and BAM! TEARS!).

For the record, crying takes a spoon.

But back to today! TODAY!

I was going to illustrate today's stuff in a series of photos. But, I ran out of spoons before I got to the photo part. I had to go to the store and that took all the spoons I thought I had.

So, let's get started.

Today, I woke up having a pain flareup. I struggled to sit up on the edge of my bed. It took two tries to turn off my alarm. I use my mobile phone as my alarm clock. And the alarm that wakes me up first is a song by Steam Powered Giraffe. Hey, I like to wake up to a smile and SPG makes me smile. Especially that song.

This is a recreation of the event. I wake up early, before the sun is up. And when I got the idea for this blog, it was well into the daytime and I didn't feel like recreating it with a photo. Hence this lovely illustration. We have a reasonable facsimile of my room. A window with a dream catcher, me sitting on the edge with my red mobile phone. A lump in the bed representing the Disabled Guy.




I was rested, which is shocking, but I was in agony. All-over aching pain. I felt like I'd been thrown down a flight of stairs and stepped on. So, when I finally made it down the stairs- getting up and walking to the bathroom- one spoon and Putting on a T-shirt and yoga pants- one spoon (I sleep naked. Yeah, I'm naked in that illustration. How about that, Internet?)... Where was I?

Oh, yes... when I finally got downstairs- which took about ten minutes- I did my morning usual: took my thyroid pill, and 20 minutes later, took my morning muscle relaxer. But today, I had a Vicodin chaser with that. About 45 minutes later, I got up to go take the rest of my stay-alive medicine (some asthma stuff, a couple water pills, a blood pressure pill, and some vitamins the doctor told me to take) and to get my breakfast (I had Raisin Bran). I felt good. I felt really good! The muscle relaxer and Vicodin cocktail on an empty stomach worked!

YES!

I HAVE ALL THE SPOONS!

Normally, on a flareup day, I end up going back to bed after breakfast. Sometimes I sleep, sometimes I don't. Okay, most of the time, I sleep. But today? No way, man. I didn't need to sleep! Instead of stripping down and crawling back under my two fleece blankets, I stayed up. I took a shower.

I HAD ALL THE SPOONS!

*photographic evidence of ALL THE SPOONS*

224 of 365 part 4: ALL THE SPOONS!

"Wait a minute," you say, "Is that a whisk?"

Yes, that's a whisk.

"I think I see a ladle." you tell me.

You do.

"And a spork. Is that a spork?"

Yes, it is. You see, when it comes to having ALL THE SPOONS, we don't discriminate. WE HAVE ALL THE SPOONS! AND A WHISK! AND A LADLE AND BY GOD, WE HAVE A SPORK!

So, imagine my disappointment when, during my morning routine of blowdrying my hair and getting dressed, my spoons were being rapidly depleted. I don't know what happened. A task that was supposed to take one spoon was taking two. And I might have dropped one. All I know is that the spoons were gone by the time I had to drag myself to the store.

All the spoons...



And I no longer held them in my hand. No, they were gone. Sure, they look like they're on that table, but they're not. What happened to the spork? I have no idea. Even when I came inside, the spork was gone.

Instead of having ALL THE SPOONS, I was now being crushed by the spoons.

*artist rendering*



By the time I was done dragging myself around, I decided to do the photos. And halfway through the two photos, I said: "To hell with this standing and moving thing, I'm going to draw some stuff in Paint."

And that brings us to now.

Today's spoons were an illusion. They were held up to me and I was toyed with and still managed to get to the store and I made chicken casserole for dinner. Because comfort food, goddammit.

When you think you have ALL THE SPOONS, make sure you do. And if your spoons are rudely taken from you as mine were today- don't mentally obligate yourself into doing tasks that take energy. Stick figures in Paint are just as good- IF NOT BETTER- than photographs.

Also, I made today's chicken casserole with fresh chicken. It really wasn't any extra work than using canned chicken. I suggest you give it a shot if you haven't already.

The worst part of losing today's spoons? I didn't have the energy to bake the cheesecake I was going to bake.

Dammit. DAMN YOU, SPOONS!