There is no title I can come up with to convey my feelings...

I've been having a flareup for almost a week. I'll have a day where I feel somewhat decent, so I'll do things, like go to the store or go see my mom in the hospital. Then the next day, I can barely pull myself out of bed to put clothes on, much less do anything. Today is the second part. I'm exhausted, although I am sleeping. I ache. My skin is doing that fire-itch thing. It feels like the bones in my hands and feet are trying to escape through my skin. And I'm swollen.

The edema thing- we can't be sure that's fibro-related because it hasn't been a symptom that has been marked or whatever. I have no damn clue how they choose which symptoms go on the list, but I can say that I started having fibro symptoms in 2004 and it was at the end of 2004 I started to have issues with edema. Sometimes it isn't much of a problem- my legs get puffy and there's a dent where my boot was when I take them off. Then there are days like today, where my legs look like they belong on commercially recognizable mascot for a certain marshmallow company or that equally recognizable tire company mascot. Both are referred to as "Man" at the end of their titles. You know what I'm talking about, right? Yeah, you know you do.

So, for almost a week, it has been one day on, one day off of the crapfest. Today was so bad that I didn't even bother to put on "real" clothes. I'm wearing my too-big yoga pants that I usually wear in the mornings because I don't wear PJs to bed (also, when I work out, I wear these pants) and my giant blue shirt. That's how I describe it: "Hey, can you bring me my giant blue shirt?" and the person to which I'm speaking knows which shirt I'm talking about. I used to wear this shirt over a decade ago and it actually fit me back then. Now it is a giant shirt... the sole purpose of wearing it is for comfort.

I've been taking some daytime Vicodin on these bad days. Not for the pain so much, though. Because I can deal with pain. I've done it for years. No, I've been taking the Vike (as I've started referring to the Vicodin) to settle down these itch-sensors. It works. It doesn't eliminate the itching, but it does subdue the sensation enough for me to stop bitching out loud about it.

All I want to do is eat comfort food and curl in a ball. Except the comfort food usually has too much sodium and curling in a ball requires me to get up from this chair. And I'm not getting up from this chair.

Oh, is that Cadbury? Will you bring it to me? No? Jerk. Fine. The next time I get up, I'm taking that Cadbury and you can pry it from my paralyzed-with-pain claw-like hand. Remember, I'm hopped up on Vike... I have the grip of an angry elderly person.

Damn right you better back away slowly. Hey, while you're up, can you get me that Cadbury behind you?

The Whining today is laced with anger. And swearing. Lots of swearing...

My fibro has been kicking my ass hard lately. I did so well in the summer with losing weight that I had hoped to keep up that momentum. But its a lot easier to muster energy and work through the pain when there's something unusually rewarding going on. And no, I don't mean the jousters. Heck I only spoke to them for a few minutes at the end of the day. I mean the overall experience. Being "on" for the non-garbed patrons, talking with my friends, spending time with everybody. Even though I was in pain, I muscled through it and it was worth it. I had so much fun, took so many wonderful photos. And even though I know it will hurt again, I can't wait till next year.

But when the only thing I can expect at the end is more pain, I just can't get myself out that door to walk. I tried to by announcing my photos of the day would be taken out on my walks, but I couldn't do it. One day, I did fine. But the day after I was so sore that the pain brought tears to my eyes.

AND THAT'S ANOTHER THING... try explaining the pain after physical activity and have people say, "Oh, you gotta just work through it. Everyone feels sore after they work out." It isn't the same thing! I know the goddamn difference between workout pain and fibro fucking pain. Two completely different things! Workout pain feels GOOD. Fibro pain sucks the goddamn life out of you and you can barely sit up in bed, much less put on trainers and walk a fucking mile.

The utter exhaustion I feel every fucking day is different than feeling tired from working out. I don't lack motivation, this stupid fucking disease takes it from me. I goddamn guarantee you that I wake up every morning with an eager mental state. I'm a fucking morning person. And by "morning person", I mean whichever the time of day I wake up. But now I reach over and turn off my alarm and as soon as I sit up, the fucking pain starts to sap my energy. By the time I'm upright and in the bathroom- where my workout clothes are- I'm in so much fucking agony that I just want to go back to bed.

On top of all this, I feel sometimes that I've let people down. I'm sure nobody gives a damn about my stupid 365days photo project, but I did say I'd take photos from my walks. Even that couldn't help motivate me. I've thought about walking after I take my pain meds. That would be the one time I have no excuse for, aside from just not wanting to go walking that late in the evening.

As I sit here, at this computer desk, all my muscles feel tight. And no, stretching doesn't help. It makes them hurt more and it even makes them burn a little. And not that "push it to the max" workout burn. More like "fucking hell, I think I've pulled a muscle" burn.

I don't know what is causing this right now. Could be the weather changing, could be nothing. Could be this stupid fucking disease likes to make me its bitch and wrestle me to the floor and punch me in the arm till I bruise.

I'm just glad that I don't have the itching yet.

In my whiny lamentations, I made up a new phrase...

I was going to come in here and whine like the pissy little bitch that I am about how it hurts to go for a walk. And it does. A lot. Okay, let me whine about that for a paragraph or two...

Like an idiot, I declared that all my 365days photos would be taken "a mile from my house" because, dammit, I want to keep losing weight. Not that I ever expect to be thin again, but I'd like to be described as something other than: "That fat chick with the black hair"... like maybe "that moderately weighted chick with the black hair". Turns out, I can't walk a mile away from my house yet. Nope. I'm doing a half-mile and then walking back, to make a full mile. And in other good news, I can't go two days in a row. So on Day two of the Great One Mile Away Day, I'd already broke two promises I made publicly (and by "publicly", I mean "On Facebook").

I hurt so much the day after I walk that I'm not even putting shoes on my feet. That's it, man. The ren faire has healing powers. Sure, I'd hurt at the end of the day and my feet were screaming a symphony like an out-of-key donkey with someone stepping on his testicles, but I always had fun and still managed to walk back up that damn hill from the tilt yard. Of course, the motivation of seeing my friends and watching the joust was a huge draw. But still... walking on concrete and asphalt is a fuck of a lot worse than the grass and dirt paths at the faire.

Now, onto the new phrase I came up with... I was instant messaging with Shawn and telling him about a trying day with the pain after walking and how I can't even be sure some of this is fibrofuckingmyalgia or not. And I said this:

Fibromyalgia is like a fuck-you cocktail of learn-as-you-go.

There it is... share it at will if you feel the urge. I'm going to go have Oreos for dinner or something because I'm too tired and sore to cook anything.

I need to make a jumpsuit out of that blanket...

I felt so awful yesterday that I put off writing this post till today. Yesterday, my skin hurt. Every muscle ached to the point of tears. It wasn't a flareup like the one I had when Shawn was here, but it was bad.

How bad WAS it?

It was so bad that I stripped naked and crawled between two furry, soft, fleece blankets.

That's not much of a punchline! You ripped us off!

Yeah, well, whattya want? I'm not a stand-up comedian! I'm just some freakin' housewife who has this stupid disease and nobody around to listen to my lamentations as I play the same six songs over and over and whimper through the pain.

Only part of that is true. I don't play the same six songs. More like twelve.

I also don't whimper. I fucking bitch out loud and angrily. Then I strip naked and curl in a ball under a blanket and wait for it to pass. I took two Vicodin yesterday afternoon. Then I took two at my regular time (about two hours or so later) and then, my muscle relaxers. By bedtime, I was ready to curl up into a ball and play with yarn.

By "play with yarn", I mean that literally, I was giggling at stuff that wasn't funny to other humans. After I took the two Vicodin in the afternoon, I went upstairs for my strip-down-blanket-cocoon. I ended up watching terrible shows on a channel that used to be CourtTV. It was called "Bait Car" and I giggled my way through three episodes before I felt well enough to get up again.

But wait! I hear you saying, You're NAKED!

True... very true. But, I put on a fleece hoodie and a pair of velvet sweat pants- inside-out. That's right, I was rocking inside-out sweats. I managed to survive the rest of the evening till bedtime when I then stripped down again and re-entered that fleece cocoon I'd built myself.

Pain, itching, aching skin... it was not a good day.

By comparison, today is much, much better. So, at least there's that.

Emotions and a shard of glass-

Shawn left on Tuesday. The time he spends here speeds by so quickly that when the day for him to leave pops up, we're always surprised. That day was emotional enough- and as we all know, emotions are candy to Fibrofuckingmyalgia. "RAAAARRRRGGGH!" bellows Fibrofuckingmyalgia, "I LOVE EMOTIONS! LIKE REESE'S PIECES!! *chomp-chomp-chomp*"

Or, you know, something like that. Plus, I had to drive Shawn to the airport. Our last moments together are of me battling road-rage like a heroin addict scratching for a hit. I get twitchy and scream-y at other drivers. And when I battle the urge to swear at them, it gets worse. But I digress... It is always sad when Shawn leaves. So, the fibrofuckingmyalgia just gobbled that up like a heroin addict getting a hit.

YOU LIKE THAT!? DID YOU SEE WHAT I DID THERE!? Yeah, I'm fucking brilliant.

Let's move on, shall we?

So, Tuesday, emotionally exhausting.

Wednesday, physically exhausting. If you know me, you know my kids are all in college now. The youngest is a freshman. She's in a school about an hour and a half a way. Same town as her sister, different school. My oldest lives in an apartment, the youngest is in the dorms. Ceej- that's the youngest if you're taking notes- has Wednesdays off. Nothing at all to do. She's been battling with the Veterans Administration to get her education benefits.

Long-story-short: This is my third kid to go through the VA education benefits bullshit. We applied early- as soon as we found out which college she was going to, we applied. "Apply early!" is what the staff says, for those benefits. We did. We got the usual automated reply: "you qualify for benefits-blah-blah-blah-due to a high volume of applications, it may take ten weeks to complete your process..."

That was when she had four months till the start of her school year. FOUR MONTHS. The boy- that's my middle child, for you note-takers (don't worry, there won't be a test on this later- got his first check at the end of August, because he started school in mid-August. And the VA pays in arrears. End of September comes, Jase and Kat get their checks, but Ceej doesn't. She contacts her VA rep at her school.

Needless to say, she didn't get her first check till November 8th. Yeah. She started school on September 1st. Same day as her sister. And she didn't get her check till this week. Luckily, she has generous grandparents (they gave her cash), a part-time job, a sister who lives in town (took her shopping, lets her do laundry at her apartment), and a brother (who also slipped her some cash to keep her from starving after the cafeteria closed).

So, back to the long-story-that-was-supposed-to-be-short-but-wasn't-short-at-all: Wednesday I spent almost six full hours driving. I had to drive out to get Ceej, bring her home so she could do her banking (there isn't a branch in her town). She wanted to pay her grandparents (that's my parents- you should know that, just because they're awesome) back some of the help they gave her. She gave me gas money- which was nice. Then I had to drive her back to school.

That put me at nearly six hours driving. I was a little tired from that. No worries, as I didn't have anything to do on Thursday. Wednesday night, I went upstairs to change from my jeans into my giant yoga pants and huge T-shirt. In walking from my bedroom to the bathroom, I stepped on an unseen shard of glass. I have callouses on my heels and I didn't feel it till the shard was embedded deep into my foot.

Slight ouch. It was a tiny shard, like a splinter. I tried to get it out with a pair of tweezers (which is when I found out it was glass and not wood). A needle didn't work either. I tried again this morning after my shower (hoping the water would soften up the callous). No luck. If I can't get it out by tomorrow, I'll have to go to "urgent care" and let the medical professionals handle it.

But, I can't put weight on my heel. Its right where the bulk of my weight hits when I step. So, I'm walking on my tiptoes on that foot. My calf is killing me and my right hip (that's the "hot spot" I have) is screaming a symphony of pain. I feel like I'm going to have a flareup caused by a tiny fucking shard of glass. (we assume one of us tracked it upstairs on our shoes)

Don't worry too much, I had a tetanus shot sometime in late September. I knew you were asking yourself about that. Really, I did.

If I ever get this shard of glass out of my goddamn foot, maybe I'll be able to get back to walking. Walking for exercise, that is.

Hey, look at this-

That's me with all three of my kids and Shawn.

From "fine" to "so painful there were tears" in less than an hour

Hey, you know what? Shawn is visiting again. How awesome is that? And if you don't know what I'm talking about, then you apparently don't stalk me on Facebook enough. I mentioned him in my previous post where I bitched and moaned.

Today was a lazy day. We watched movies and didn't do much of anything. Around 330 PM, I was so tired and achy, that I decided to go lay down with my feet up (lay down? Lie down? Who cares? I was flat on my back, on my bed). I thought laying (lying?) under my fleece blanket with my feet elevated would help.

I dozed off for about fifteen minutes, which is fine... but I got up and I was barely able to move. No worries, I thought (I do that, I think and speak in Australianisms sometimes)- but yeah, "No worries," I thought, "It'll work itself out a bit when I get to moving."

Except that it didn't. It got worse. I went from "mildly achy" to "absolutely in agony" in less than an hour. I had tears... and of course, the Disabled Guy didn't notice. So, I pointed it out to him. Still didn't know why- he said, "What? Are you sweating?"

"Yes," I replied. "I'm sweating from my eyeballs."

The whole thing freaked Shawn out, just a bit, because he has never witnessed a flareup in person. And of course, it had to be such a tasty morsel to witness- me going from slightly whiny to fighting tears in such a short period of time. I took my Vicodin almost an hour early because I couldn't take it.

I said to Shawn- who was doing whatever he could to help me: "At least I'm just in pain and not itching."

Stupid me.

Less than an hour after that, I was itching too. Great. Way to go, Brainiac.

It is now after 9 PM here. I'm fully Viked and fully Cyclobenzaprine'd. And I fucking itch. And I have the goddamn munchies from my pain meds. They don't always give me the munchies, but it happens. My pain level was at maybe a three on that Ridiculous Pain Scale. By the time I'd gotten up from my impromptu nap and sat down on the sofa in the living room, it had shot up to eight. In that hour's time, I was in tears. It was the fastest onset of a flareup I've ever had (that I can remember, anyway).

So, I'm a little tired. A lot uncomfortable. And a bit irritated at it all. Kat came home for the night (she's got something to do in town tomorrow). She did her usual thing- demanding food, as one does upon entering their parents' house; she ate food, complained about our lack of snack foods, and talked about random stuff. No biggie, typical shit. And she asked me where the place was where she was going tomorrow. So I told her which streets to take to get there and she made her teen-ager-annoyed-face at me (she's 22 years old) because she wasn't following along with me. I said, "Fuck it, never mind..." and in the middle of me trying to get up, she got all defensive at me.

I tried to explain: "I'm in the middle of a fucking flareup. I feel like shit. I went from 'fine' to 'fucking shit' in less than an hour. I'm loaded up on pain meds that are barely working."

She replied, "So you have to take it out on me?"

I said, "I'm NOT taking it out on you. I'm irritated. I'm in pain. I'm fucking itching. It has nothing to do with YOU. It has nothing to do with ANYONE except me."

I have no idea if she cared or was even listening by then.

Shawn keeps asking me how I am though. And at least he means it.

Let's hope that little blip on my birthday isn't an indication of the rest of my year

I'm sure it won't, but you know how you superstitious types get.

Let's get everything up to speed right now. Saturday and Sunday, Ceej and I went to the Stronghold Olde English Faire. We weren't sure we were going to go, but on the last day at Bristol, as we were saying our goodbyes and hugging our friends who don't mind being hugged by sweaty people in period clothing, they kept saying, "We'll see you at Stronghold!"

So we went.

And I'm so glad we did. It was fantastic to see our friends again and as it turns out, a lot more of the cast people knew who we were than I thought did. Everyone should know how much I love Jane the Phoole. Because I do. She always remembered me (even if she couldn't place my extremely common name- she used to try and moniker me up with something more elegant only to find that nope, Just Patty) although for many years we only saw each other at the Janesville Faire for two days a year).

Well, at this year's Janesville Faire, I met a Captain Sir Martin Frobisher. He told tales of his travels and he was awesome and hilarious and grand fun. We saw him again, many times at Bristol. But in the time between Janesville and Bristol (about two months), he- that is, his non-character alter ego- sent me some messages about the photos I took of him at Janesville. So, when we saw him at Bristol, I knew he would remember me once I told him who I was. But I didn't even have to- he knew who I was. And that always makes me happy. And whenever we'd see each other in passing, he'd greet me with a cheerful "Good day, m'lady!" (he also, more than once, referred to me and the kid as "The Ladies [our-last-name]").

But back at the task at hand- Captain Frobisher and Jane are my two favorite Bristol characters. There are many, many more that I love (Robin Hood, for instance, and Little John. Those men make me laugh so hard that my sides ache for days). And I was happy to see Frobisher and many other of Bristol's cast at Stronghold. There was no joust at Stronghold, just a small, two-day faire. But Frobisher and a band of other men in finery (some were sea captains, some were part of the Queen's court/guard) played a game that we modern folk know as Jenga. Except this game was much larger and they played it with swords. Frobisher asked for my assistance three times- once it was not needed as the player before him toppled the tower, the second time, it was my honor to place the final block on the tower so they could start the game, and third, I dropped his sword when he asked me to hold it for one of his flourishes.

I've gotten off track a bit... But you know me, I do love to talk about the faire.

Two days of mostly walking and standing. Friday I had to drive three hours round trip to pick up Ceej from her college and Sunday evening, I had to do the same to return her. Since last week, I've been taking half the muscle relaxers that I normally do because I started to run low and I didn't want to run out before my next appointment (next week). On Sunday night and then on Tuesday night, I didn't take any muscle relaxers. I was driving and up too late to take them. Shawn arrived Tuesday, with just a two hour delay. That's an improvement on the 36 hour delay from his last visit.

We didn't go to see the girls on Wednesday. Jet lag got to Shawn and he opted to catch up on his sleep. But we're going to Milwaukee this weekend to do some museums and other such touristy things.

So, this hiccup I mentioned in the title.

Monday was my birthday. I have one plan for my birthday- to do as little as possible. And after two days of walking (and laughing so hard my sides are still sore, even on Thursday) and not taking enough pain medicine, I definitely didn't want to go anywhere or do anything. But the disabled guy wanted to go to Sam's Club. I hate that place. He always ends up buying stuff we don't need, which is bad enough. But he has to walk down every single aisle. No idea why. I even asked him why. My body was sore, I was tired, my feet were in agony, and I was swollen. I kept telling him I needed to sit down and that once we had the few things we needed, we should just go.

He either didn't care or he thought I was exaggerating. Or he just wasn't listening. By the time we were through the store (where I did a lot of standing at the ends of aisles), I was exhausted and frustrated. I just wanted to sit down and take off my shoes. But I wouldn't even be able to do that because my parents wanted to take us to dinner (part of my routine is to order pizza for dinner). We walked up to a checkout line- the disabled guy blathering on about how we didn't get "that much stuff" and then he waffled over which line to go through. I finally blurted that I didn't goddamn care and just wanted to leave. The guy in line ahead of us looked at me, a little shocked. I mean, how often do you see a fat chick at Sam's bitch out her husband? (don't answer that!). I looked at him and said, "Its my birthday and I'm here."

He said, "Oh. Happy Birthday."

I said, "Thanks." Then I looked away. All the frustration from that day just bubbled up and I felt like I was about to lose it. I asked the disabled guy: "Do you need me here for this? Can I go sit in the car?"

He told me to go and I put on my sunglasses and beat feet to the truck. I didn't make it all the way out there when the tears came. I got into the truck, turned the AC on full blast (it was hot) and turned up the music. I sat there crying for about five minutes. The guy who had been in line ahead of us was parked about two spaces down. He had enough sense not to come over and bother me, though for a moment it looked to me like he was going to stop and ask me if I was okay.

When the disabled guy walked out (finally), I'd settled down enough to be able to function. I didn't say a word to him- beyond "Don't break my frame"- and we drove in silence for about two minutes. Then he asked: "Why are you so mad?"

Mad? This isn't "mad" unless we're talking of the British usage of "mad" (which is "insane"). I started to explain, rather heatedly (that is to say, I went off on him, rather loudly), about what was wrong. I stopped halfway through. He wasn't really listening.

But, my son got me my required-by-law Dairy Queen ice cream cake. And Shawn arrived the next day. And aside from being exhausted, I'm okay. I got my muscle relaxer refill yesterday so I was able to take a full dose and crashed hard last night.

Tomorrow, we go to Milwaukee for a couple days. We're going to stop in and see the girls along the way back.

And, for fun, here is a video of Captain Frobisher playing Sword Point Tower at Stronghold. And then some photos.



All Stronghold 2011 photos are here... Well, most of them. I still have some from "A Knight to Remember" to go through.







This is Bristol's "Robin Hood". He wasn't portraying Robin at Stronghold, though.



Jane the Phoole-