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 They don't carry over like those rollover minutes on your outdated mobile phone plan.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*



"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!

Because they made it into a photo, it's more fun that way!

I saw this photo floating around Facebook this week. I made a mental note (ha-ha-ha-haaaaaa!) to go back to it so I could share it and whine a little bit. But, like all things I mentally note and not actually note, I forgot about it. So, I did a quick Google search and found it again. I had to make it bigger, though, because it was tiny. And in resizing it, I had to fancy it up a little.

YOU'RE WELCOME.  ♦♦♦♦click here to view in a larger size♦♦♦♦



Wow. That's huge. Well, at least you can see it. I made it almost twice the size it was, dragged and dropped it onto a plain black background and added the blue glow before flattening the layers. Not that big a deal, but at least it isn't the poorly cropped thing that it was before.

So, let's talk about this pain, shall we? Of course we shall, that's what my blog is about, isn't it? Yes, I appear to be talking to myself again.

1. Knife-like pain: Yup. I get that mostly in my feet and sometimes in my hip. And it isn't localized in that one spot. It jolts and shoots through that area of the body as though I'm being stabbed- not unlike a knife! See? You know where they got that name then.

2. Hyperalgesia: That's the increased response to painful stimuli. If something hurts you, it hurts me worse. Stub your toe and let out a string of profanities and even get a bit of tears stinging your eyes- and for me, it hurts so bad that I can barely breathe enough to stay alive, much less shout out a string of profanities. Earlier today, I stumbled a bit and ended up scraping my elbow against the corner area of a door frame. And in a normal person's body, that shit hurts. On me, it felt like I'd peeled off a layer of important skin on a lemon zester. There's no mark on my body aside from a slight bit of redness. I'm not missing any layers of skin. But damned if it didn't feel that way.

3. Allodynia: Painful response to an normally innocuous stimuli. And I hate that description. "Innocuous stimuli" makes it sound like something is gently annoying you and then you react to it by shouting swear words and threatening legal action. "Hey, I took the last cookie." "I WILL MURDER YOU AND YOUR FAMILY WHERE YOU SLEEP!!" That's not the proper response. Really.

What it actually is, however, is much worse. Let's say you were in a Facebook poke war with someone and they took it to the real world. OH IT IS ON, JOSEPH! *ahem* Sorry about that. I just know a guy- you see, this guy I know at faire took our poke war to the real world. And he cheated a lot by sneaking up on my deaf side. And don't give me that line that he didn't know I was deaf. I mean, its absolutely true that he didn't know, but still!

Anyway, here is a photo of myself that I took today (wearing my new Damsel in this Dress bodice). I added a little bit to demonstrate how a NORMAL person would feel a typical poke from another human.




See? That's not so bad. You got poked, deal with it. It didn't even hurt, but you felt it.

Now, here's the same photo, with a little bit added to it, to demonstrate how I feel a normal poke from someone's finger. I added some tears as well, because fuckin' ouch, man.




So, this isn't an exact representation, but you get the drift, I'm sure. And I don't feel like this EVERY single day. But I do have days like this. Today is a day like this. I have an all-over ache in my muscles and even the slightest pressure- say from a four pound, black and white cow-print dog with tiny feet- causes a radiating pain wherever she put those tiny paws on me.

[she's a beast!]


4. Parethesia: That's the pins and needles feeling when your foot falls asleep. I don't know why they use the word "numbness" because that implies you can't feel anything. But you know you can- you know the feeling I'm talking about. Pain, tingling agony, and you stand up and try to put weight on it and you almost crumple from the lack of feeling, yet painful agony.

Now, imagine that, randomly happening, for no reason, even when you're using the body part. If I stand up too long or stand in one position too long, my feet do this. My hands do it too- like if I'm holding something (like a camera or a large fancy basket with a camera in it). If anyone has seen me taking photos at the joust, you'd have witnessed me shifting my weight a lot or even holding onto the rail for stability. What you can't see under my long skirts is that I'm standing on one foot and shaking out the other foot.

5. Randomly Roving Pain: Well, they were sure thinkin' fancy when they named that pain, weren't they? But yes, I get this too. I refer to it as "hot spot" pain or "My hot spots are flaring". Sometimes I feel in my hip muscle, sometimes in my foot. It seems to happen to me in the larger muscles than in a smaller muscle. Like the hip or thigh and the shoulder muscle. I also sometimes get what feels like a sprain in my wrist and that can last for an hour or it can last for days. And during that time, there's no swelling, there's no bruising, but I have no strength in my wrists and hands just like I've had an actual sprain.

6. Sparkler Burns: Have you ever been burned by a sparkler? Me either, so I don't know why they called this pain that term. I bet it hurts a lot, no matter what chronic pain disease you have or don't have. But this is the painful tingly sensation that when it gets scratched or touched, it can trigger that pesky allodynia pain. In me, that would be the itching/burning skin thing that I refer to as a million hairy-legged spiders all trying to break-dance out through my pores. I hate that shit.

7. Rattled Nerves: This one is an all-over sort of thing, related to anxiety. I am very, very fortunate not to suffer from depression or anxiety, so I don't usually have this problem. I do have times when I'm all-over-body-aching and I feel as though I'm coming down with the flu, but it doesn't cause me any mental distress like the description implies. I have bouts where I'm short-tempered for seemingly no reason and instead of merely answering a question, I bark out an angry, profanity-laced reply that required no hostility on my part. (If I've done that to you, I apologize).

So, there you have it... the seven kinds of pain with some infographics added for fun. This goes sort of with the post I did a couple weeks ago where I state that I am "always in some kind of pain". And that little infographic at the top doesn't even touch on the fatigue that kicks us in the face and wrestles us to the ground. That shit is totally bogus. *feathered hair flip* Totally, dudes.

 Right now, as I type this, I've had my nightly Vicodin (three 5/325 mg tablets) and muscle relaxers (two 10 mg tablets of Cyclobenzaprine). And my hands have that Parenthesia thing going on, my right shoulder is having a bit of a flareup from that "roving" pain, and both arms and hands are doing the millions of spiders thing. The good news is that all those pain meds I've taken make me not care. And in a couple hours, I'll be blissfully asleep.

At least, I hope to be. I have to drive down to Rockford tomorrow and shoot some product photos again.

Let's talk about Closing Weekend, okay?

Here we are, just over a week after our three-day closing weekend at Bristol. I've still got callouses on the arches of my feet (yes, on the arches!). And I'm still struggling with random bouts of fatigue. (and that fatigue may or may not be related to closing weekend, I mean, it has been over a week now).

But let's talk about closing weekend... Why? Because that's what I put in the title, we have to do it now. People are expecting it.

Saturday morning, I awoke to some mild all-over ache-y-ness. Sort of a pre-flu feeling. You know it well- the muscles are sore and tender to the touch. You feel hot, but when you actually touch your skin, you feel cool. No problem. I just moved a little slower than normal on Saturday. I got home and was exhausted from the day- expected, but I was so exhausted that I fell asleep without issue. If only I could have stayed asleep.

Sunday morning, my body screamed me awake with muscle pain and my right hip grinding in such an un-sexy way. I struggled to stay awake for the hour and fifteen minute drive to Bristol from my house. I dragged myself through Sunday, taking my Vicodin on a schedule. I remember moving slow, walking slow, not rushing around.

Monday morning greeted me with a full-blown flareup. I could barely move. I forced myself to my feet. I winced my way through my shower. My joints felt like they were on fire (even the cyborg joint). At the last minute, I opted to wear my thick-soled hiking boots (my favorite pair of Dr Martens). At first, my body was all: "Yo, bitch, watchoo doin? You expect me to drag all this extra weight on my feet?" But after a few minutes of walking on the Bristol dust and gravel ground, my body was all: "Well, my dearest, you are such a clever little thing..." because my body changes its vernacular when it shouts at me.

I moved slow through most of Monday. I chose my photo vantage points for the joust based on how far I had to walk to get over to the area. (and in one case, someone else stood where I was going to stand before I was able to get up and walk over). By the time the closing time came, I was running on auto-pilot. I barely hugged anyone, I barely said my farewells. So, basically, I owe everyone a hug. (you hear that, everyone? You have to come back now!).

I went through the entire closing weekend in varying degrees of flareup pain. And this past week- which one would think would be a week of recovery- hasn't been much better. The weather has been playing with my body like a cat with a housefly. It pulled my wings off and now its just batting me around on the floor. And this floor really needs to be vacuumed. This week's hot-spot is my lower back and right hip. So every step is a delicious reminder of how much this stupid disease sucks.

As I sit here, in my central-air-conditioned house (and the weather outside is in the 90s for heat), all my muscles are stiff and sore. I took Vicodin to go to the grocery store today, so my lower back isn't quite so bad right now. Just don't ask me to turn my head with any kind of speed. Much like closing day, I'm moving in slow-motion today. And unlike closing day, I'm not having any fun doing it.

And, if you'd like to see my faire photos- I have a lot of them uploaded here on Flickr. And that's about 1/3 the amount I shared on Facebook. And as of this typing, I still have one day's worth to upload on Flickr. (I'll be getting to that on Wednesday- which is tomorrow, and it won't be till the afternoon because I have a product shoot in the morning).

I never know how to answer this question...

"How are you?"

You would think that would be easy to answer. But, I have to go through a quick list in my head before I bark out my reply.

Does this person know me?

Does this person know me well enough to know I have fibro?

Does this person even  care that I have fibro?

If this person knows I have fibro, are they asking me how I am politely or are they concerned about my fibro?

The other day, I had to go with the Disabled Guy to Home Depot because he was picking out paint. I didn't want to go, but I also didn't want seventeen phone calls in a row of him asking me various paint colors that all had ridiculous names and didn't look anything like their names would indicate. And we were a few miles from home when I realized I didn't take any Vicodin before we left the house.

Does he care? Not really. (he doesn't even ask me how I'm doing or feeling).

So, let's talk about my pain...

I am in pain every single day. Every day. No matter what. And I would rank that everyday pain at around a three or a four. I can tolerate it. I don't always need to take something in the daytime (other than my one single muscle relaxer in the morning- which is prescribed for me in that dose- one 10mg tablet in the AM, two 10mg tablets at night).

Now, this isn't going to be as easy as "the pain is [this number] on the pain scale" because even a good day can turn bad even if my pain levels don't increase. I might swell up. My skin might start to itch. I might have a hot-spot flareup. The fatigue might set in and drag me to the floor.

When I refer to "having a flareup", I actually mean that my pain is so bad that I must take something in the daytime. Pain. Extreme pain. Pain so bad that air brushing by my skin hurts. If something touches me, it sends electrical jolts of pain in a shock wave from the part of my body that got touched.

When I refer to "my skin itching", I actually mean that I feel like my tendons and muscles are trying to escape through my pores. The itching is under the skin, as if my muscles are on fire under the surface. Scratching doesn't help- it actually hurts. Sometimes rubbing the skin with the flat of my hand helps, but who can do that ALL OVER THEIR BODY? Not me.

Some days, the only solution is nudity and two fleece blankets. I'm not telling you anything you haven't read before. But I just wanted to discuss my pain... Mostly because I've had more flareups this year than I have since they started treating me for fibro.

I suppose the good news is, that despite having pain issues at the faire, I haven't had a meltdown like I did last year.  We've got two weekends left in this season. It has gone by way too fast again. Except for Fridays, which crawl by at a snail's pace.

But, to answer the question: "How are you?"... well, that depends on a few things. But let me tell you this- no matter what I answer (which is almost always: "Fine"), I am in pain. I am in enough pain that normal people would cringe. I am always in pain. Always. If I'm standing up, sitting down, or if you somehow end up in my bedroom and I'm in bed under two fleece blankets and my clothes are not on my body... I am in pain.

Despite that pain, I still take awesome photos. Because I can. Because that's what I do. Because I love to take photos. And I love my subjects (people and animals)... Because when I take photos, I feel like I'm contributing to something. Because when I take photos, I can forget how much my body hurts for those few minutes. But mostly, I just love doing it.

We're coming up on our fifth weekend of faire...

I've been meaning to update this blog for the last four weeks. But I've been so bloody busy! Why's that? Because I've been made "official". I'm now one of the faire photographers (there's a team of us). Basically, I'm doing everything I've always done- taking photos of practically everything, including the jousts- but now I get let into the loop on special events and now I can say: "I'm working here!" and mean it.

But, let's us get to the important fibro stuff... After opening weekend- which was an experiment in HELL for pain- I didn't have a huge flareup of pain. In fact, it wasn't even the pain that bothered me. It was the fatigue. The exhaustion just kicked me in the side of the head and wrestled me to the floor. I was so tired that I declared every day a nap day. The experiment in hell for pain was in my feet. I wore the wrong kind of socks, which caused me all sorts of discomfort. "Wrong kind of socks?" you ask. Yes. I wore some that were supposed to help with various foot issues. The problem is, they have a lot of Spandex in them.

These socks, actually. (mine are black and pink). And they're good socks. I'm wearing a pair right now with my Doc Martens hiking boots. But on a day that was 90+ degrees with high humidity, they were the worst thing ever to be stuck wearing for 14 hours.

And now that we're going on our fifth weekend of faire, I've learned a few things... one, wear good socks. As close to 100% cotton you can get. Two, even if I'm in pain from wearing leather shoes and walking all weekend, I still need to force myself to wear shoes at home on Monday. Even if I'm not going anywhere. Last year, I'd spend all of Monday and most of Tuesday wearing slippers and whining about how much my feet hurt. This time, I get up, drag myself around- whining as much as possible, of course- and I put on my hiking boots (I have shoes that I wear specifically for the ren faire, because they look almost period-correct... ALMOST). And I recover much faster.

I still whine as much as I can, of course, because goddammit, I have a chronic pain disease.

Now, that's not to say I haven't had a few bad days. I always have those. The days when even my clothing hurts my body. I hate that feeling- when I put on otherwise comfortable clothes only to have the fabric feel like hot sandpaper or that the pressure of the fabric against my skin feels like a painful bruise.

 In fact, I schlepped my ass around the faire all day on Sunday in the throes of a flareup. But, I took Vicodin every six hours and I split my three muscle relaxers a day evenly instead of taking one in the morning and two in the evening. That seems to help. (and my doctor said it was okay to do so). I also sit down as much as possible, because I wouldn't be me if I wasn't putting my butt down on a flat surface on a regular basis.

Now, to end this on a happy note, here are a few of my 365s from the faire.


Opening day was so hot that at around 130 PM, I had to loosen the laces on my bodice. And around 4 PM, I had to take it off entirely. I hate walking around without a bodice at faire, it feels wrong, but hey, when you reach that point, you gotta do what you gotta do.

This is "Don Eduardo de Valencia" (I call him Vince, because that's how I met him last year).



Here I am with Kyle ("the one with the eyes"), and Duchess. It was her birthday! And we're at the end of the day, near the gates.



It has taken me three years to get this shot. "Lady Gwendolyn" (Tricia) is sneaky and always seemed to disappear before I could get her in my 365. She makes horse tack. Age of Equus is what she calls her leather work.



This was taken last Sunday. I'm with the "Lord Mayor of Bristol" and one of the Bristol Buskin Frolic guys (I don't know his character name!) and together, they call themselves "The History Bluffs". We did an impromptu photo shoot after I shot the historical costume contest. And then I had them be in my 365 with me (Duchess- from the other photo- was my human tripod. She's another Bristol photographer). This would be the day that I muscled through a flareup all day.



Do you see a theme with those photos? I mean, aside from my silly hat (hey, I made that hat! Second hat I ever tried to make).

I'm smiling. A real and full smile. (even with Vince, where I'm so exhausted I wanted to fall down).

No matter how terrible I feel, I always smile at Bristol.

Apparently, I forgot how this disease works...

Saturday at Bristol, I did a lot of painting. A little bit of lifting of painted things, but for the most part, I painted. And Sunday, I painted more. On Sunday morning, though, before I was even dressed, I tripped on my stairs and banged my forearm against a corner on the wall.

Why am I telling you all this?

Because Sunday I could feel things starting to drag me down. By the end of the day, I felt like a giant sloth. Sloooowly dragging my body across the road. Gravity pulling me down to the ground and then poking me with a sharp stick. Monday was downright miserable. Tuesday even worse. I'm in agony. I feel exhausted and everything hurts. I feel like the pain is radiating from my feet and then spreading through my body. By the time it gets to my head, the pain has changed into mind-numbing exhaustion.

Monday, I kept wondering what I had done to myself to cause all this pain. I mean, I painted. That's all I did. I wasn't hauling heavy things around. I wasn't walking the entire length of the faire multiple times. I was sitting on my ass, painting benches and other such wooden things. I tripped and banged my arm, but surely that can't be what's causing all this pain.

Today, I took the dogs out and I was leaning against the railing on the deck. Let's go... I'm tired... I have to take a shower and get my day started (we're going back to Bristol today, to help in the garden again). And I suddenly remembered... This disease does this. How in the hell could I forget that this disease makes its own flareups? I mean, really. REALLY.

I've been officially diagnosed for the last three years. I've dealt with symptoms for at least eight years. And I stupidly allow myself to fall into a false sense of security when I have a slew of good days.

I'm in a full-on flareup and I feel terrible. But,  I'll have a steady flow of Vicodin in my blood today and that's cool.  And, I get to go to Bristol today and I'll see some people I don't get to see except for at Bristol and that's cool.  And if I keep this steady flow of Vicodin in my blood today, there will be a lot more things that I think are cool. And that's cool. (also, don't worry, I'm not driving to Bristol. The Disabled Guy is... and that's cool).

I had to go and open my big mouth...

All that flareup pain I said I'd missed out on the last couple weeks?  Yeah, it came back. Somewhere around one PM today, my body just said: "Fuck this feeling good shit" and the pain set in. I was at the grocery store when I felt it coming on. And I still had to get through the grocery store. One good thing about it, I was hungry when I went to the store (I had cereal for breakfast at 4 AM and a banana for lunch around noon), but as the pain started to settle into my muscles, I sort of lost my appetite and passed up the snack foods I was considering putting in the cart only a few moments before.

On top of the pain, we have the itching again. I say "we" because you're in this with me, right? I mean, all this pain can't be for just one person, can it?

Right now, the majority of the pain is in my arms/hands. I feel like my elbows are trying to separate from my body and the muscles between my elbows and wrists are trying to pull tighter to keep the elbows from leaving. And the itching is mostly in my hands, between the burning aching in my knuckles and stabbing jolts of pain in my hands.

And, of course, the same sprained feeling is in my left foot and ankle. And my left hip. My "hot spots". And there is a general all-over pain right now too, but the intensity of the hands/arms/hot-spots is higher than the all-over stuff.

There's an article or few going around about a breakthrough in how doctors have perceived fibro. I've read three or four versions of it (because people have posted it on my Facebook and I follow a few fibro support pages on FB). I won't bore you with the details, but here's a link if you want to read it. I'm just going to sit back and peel the skin from my arms and hands with a vegetable peeler while I await the new and amazing treatment that will take this imaginary disease away from me. That should totally work, right?

Right now though, I really wish I'd gotten some of that snack food.