It shouldn't have been unexpected, but it was...

"Plans? You-chuckle-you had plans?!" [insert maniacal laughter]

That's what Fibrofuckingmyalgia said to me today. I started out the day with such high hopes. I did. We finally got past our bitterly cold weather. A couple weeks ago, I unplugged the space heaters that we have in the kitchen to keep our pipes from freezing. And I decided that it was time to go ahead and put those heaters away for the year and put all the crap back in the cabinets so I could have full access to the rest of my kitchen. (we take most of the stuff out of the cabinets when we use space heaters, lest we become a statistic).

I had to go to the store today. I had to. The youngest kid will be home this week for Spring Break and I didn't have any food that she would need for, you know, living. She's been super-stressed out, so I told her I'd get comfort food ingredients. (she even quoted me on Facebook with that fact). So, I had to go to the store.

And the store was crowded. And it ended up taking me a lot longer than I expected. So, after zig-zagging the most giant of all giant grocery stores, I got home, got my stuff inside, put away the stuff that could be put away... and then my body said: "You're done. Sit down. SIT DOWN NOW OR I WILL DRAG YOU TO THE FLOOR LIKE A WEAK MUNCHKIN!"

So, I sat down. I spent the next couple hours trying not to fall asleep sitting upright. I didn't want to take a nap because I don't want to screw up my sleep cycle (again). After sitting for a while, I had trouble getting up. And by "trouble", I mean that I rocked back and forth and flailed like an upturned turtle till I had enough momentum to thrust my body into a more solid position for putting my feet on the floor.

On top of this mind-numbing exhausted feeling, I now have pain. All through my arms and legs. And by "legs" I mean "the entire area from my waist down and a little bit of my waist-up, but not all of it".

The weather changed again- it had gotten warm. So warm that not even a jacket was needed yesterday. Today? Its about 20° cooler and windy. Every time I take the dogs out, I can feel the cold seeping into my muscles.

All this time, while fighting the pain, my brain keeps fighting with the exhaustion. My attention span is almost to Goldfish Levels and I can't focus even on "The Princess Bride" which came on cable while I was upturned-turtling. (they're at the wedding scene- "Mawwage. Mawwage is what bwings us togevah today"- and I don't even care. Dread Pirate Roberts is here for my soul and he can have it. Maybe he can do something with it).

On top of all that, it looks like its going to be a gorgeous sunset evening. And I really want to go get some photos of that. But I also don't really want to stand outside and let the cold make my fingers so stiff I can't move them. But it looks like its going to be really pretty out there.

What I need right now is for clouds to move in and block out the sun- that way I won't have to go take photos of it. I also need a chef to come cook me dinner- that way I don't have to go cook dinner for myself. I also need a maid- that way I don't have to reassemble the lower cabinet areas of my kitchen by myself. And I need a dog walker- that way I don't have to take the dogs out.

I guess I should go ahead and charge my camera battery. And find something for dinner. And take the dogs out.

The cabinets can wait till tomorrow.

Or the next day.

EDIT- the clouds rolled in and I decided not to drive out for sunset photos. 

Questions and Answers, translated

Over on my Facebook, I don't want to be "that guy". I don't want all of my status updates and posts to be all whiny and seemingly attention-seeking. I mean, in general status updates ARE attention-seeking, because c'mon, do you really care that I can hear my clothes dryer while wearing my hearing aid? But I don't want people to give me head-pats and imaginary hugs for having this stupid disease. I don't mind when I get actual hugs (even if I'm having a flareup and it hurts, because that happens sometimes) and I hate to put on a smile and get medical advice from people because their mother's sister's aunt-in-law tried something and it worked for them. (c'mon, everyone with a chronic anything has heard THAT story before).

But in real life... there are times in my life when I have to leave the house that don't actually involve putting on awesome clothes and hanging out with several hundred people dressed in similar (and better) awesome clothing. And, sometimes, there are people out there who ask seemingly benign questions. And I've mentioned this before- but I'm too lazy to look up my own blog link, so I'm probably going to repeat myself a bit. But these people, they generally don't really want to know the real answer to the questions they ask, because they work in the industry that requires them to ask the questions or at least be polite (which sucks for them, because not everyone is like me or my kids and those jerks tend to take out frustrations on those people despite them having no control over what's happening).

Let me get back to the questions. The most loaded question I get these days is: "How are you?" And it comes in a few varieties- "How are you?", "How is everything", "How's things?", "Everything good?"

Of course, I answer these questions with: "Fine" or "Good", even the slightly truthful: "Okay" but things aren't okay. On any given day, I could answer with: "Well, I'm still feeling sad that my dad died. And I also feel guilty, because my mom died two years ago and I don't remember it being this hard on me. And I know that's because I still had Dad around, but the guilt is still there. I just really miss my parents."

Today's answer would have been: "Well, my skin is aching like a giant scraped knee and I'm feeling slightly itchy, so you can imagine how thrilled I am to be wearing clothes right now" but I didn't think that was the appropriate thing to say to the cashier at the grocery store.

"I have a red-hot railroad spike being hammered into my heel with every step I take."

"I considered going to the housewares aisle and using that ergonomic handled vegetable peeler to peel off the itchy layers of my skin."

"My muscles hurt so much right now that I feel like I'm on fire. On fire and recently hit by a truck. Probably a truck full of broken glass and gasoline, but otherwise I'm fine."

"The pain in the bottom of my foot feels like my tendons are being pulled so tight that they're shredding apart..." (alternate answer- "...my tendons feel like they're being sawed on with jagged glass.")

"My legs are swollen. These are boot-cut jeans and I can't feel where the fabric ends and my leg begins."

"I really wanted to take a nap in the bin full of pillows over there."

Well, that last one could be said by anyone, I'm sure.

There are only a few people in my life that ask me how I'm doing and I'm sure they want to really know. A couple of them carry swords, so if I'm not near a housewares aisle, I could still get my skin flayed if I were having that type of flareup near them. We could do a demonstration for the patrons. Educational! But for the most part, nobody wants to hear the real answers. And I can't say I blame them. I don't want to tell those real answers to most people.

Be warned- good people of Earth- if you ask me how I'm doing and I give you the bland "Fine" answer and you ask how I'm REALLY doing because you really want the honest answer- I might start crying. If you hug me, I can't guarantee that I'm going to let go. Things are gonna get awkward, people. Very awkward. But don't worry, no matter how awkward things get, rest assured that I leave my house fully clothed no matter how much my skin hurts. Because that's a level of awkward that even I can't deal with.

I leave you now with a mobile phone photo of how I sit while watching TV.

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.

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.

I can hear Mother Nature laughing maniacally right now...

We've had the most screwed up weather this year. We went pretty much from Winter to Summer with only a blip of Spring in between. I had our heat on one day, only to have to flip it to the AC the next. Not an exaggeration. And the rain. So much rain. Right now, my Weather-dot-com page has seven, yes, seven flood warnings. We're safe, so don't worry about that. We live uphill from the river and if it gets so high it reaches us, we'd already be on the ark.

Shockingly, in the past week or two, the near-constant rain and thunderstorms haven't caused me to be in agony. In fact, I haven't "felt" a storm coming in all that time. Normally, a weather front will bring a flareup with it, causing me to whine and awkwardly twitch and outwardly bitch about it. Don't get me wrong, I still have the muscle pain and stiffness. After sitting still for longer than a few minutes, I'm so stiff I can barely move. And I have those hot spots (right now, left hip, left ankle, left foot). And if I try to lift anything, I have that sharp, lactic-acid-like pain in whatever muscle I'm exerting.

That sounds terrible. But it isn't, really. I can function like that and usually I can function like that without the benefit of daytime pain meds. One thing that the ever-changing weather has done for me is keep me utterly exhausted. The fatigue that comes along with fibrofuckingmyalgia is almost zombie-fying. Add to the top of the mind-numbing exhaustion the dogs who are terrified of thunderstorms. The last three nights, Gypsy the German Shepherd who will eat your face has been so freaked out, she pulls the gate down and comes upstairs. She braves the cats to get to my bedroom. Yes, its true. Gypsy will eat a person's face if she perceives them as an intruder and that very same dog is terrified of the cats. Keep your giggling to a minimum, she's sensitive about it.

So, for the last three nights, I've been awakened at various times by a terrified German Shepherd strong-arming (strong-pawing?) a well-set, metal-barred gate to get upstairs. The Chis are afraid of thunder too, but they're also more afraid of the cats than Gypsy. You would be too if the cats were bigger than you. Let's turn you loose in the savanna and see how thrilled you are when a tiger decides you look delicious. Yeah, now you feel bad for laughing at them, don't you? (don't... I laugh at them too).

While it seems I've gotten a respite in the flareup side of things, Mother Nature has given me the zombie exhaustion. And... the itching skin. And this itching isn't just that "millions of hairy-legged tiny spiders trying to breakdance out of my body through my skin" feeling. No, this millions of hairy-legged, breakdancing spiders are also on fire. My skin feels hot to me, but when I actually touch it with my hand, it feels normal.

Since the dogs woke me up at 3 AM today, I'm going back to bed for a nap. (and it isn't even 6 AM here yet!).

One thing that Mother Nature's menopausal mood swings have brought is macro raindrop photos. Enjoy. I know I enjoyed the momentary distraction from the fibro to shoot them. (there are more, if you click the photo, it'll take you to my Flickr where most of my photos are).

The Exhaustion. It's so tiring.

This is gonna be a short blog post. Stop cheering, I can hear you all the way over here. If you keep it up, I can keep typing. You know me...

Let me dive right into it. Mostly because I'm so bloody tired. The Exhaustion... how bad is that feeling of tired? "Tired" is a nice way of putting it. Along with the fatigue is a little pain, but the pain is negligible by comparison. 

This was my morning- I got up after turning off four alarms. (I use my mobile phone as my alarm clock and I have four alarms set in a 35 minute window). I got up, staggered to the bathroom to put on my ha-ha-workout-clothes. I managed to get downstairs without falling down and I took the first of my stay-alive pills. 

I normally wait at least a half hour between my thyroid pill and my other stay-alive pills because I was told once a million years ago that I should take it on an empty stomach. But today, I got up after ten minutes and took the rest of my stay-alive pills (three of them are vitamins, the others are for my blood pressure, allergies/asthma, and acid reflux). Then I opened the cabinet to get my breakfast. Cheerios. Because gross stuff is good for you (not a fan of Cheerios). 

But the very act of pouring a bowl of cereal, getting the milk for it, walking back to my desk and then actually eating the cereal seemed too daunting a task. I usually keep some Special K cereal bars on hand for such days, but I was out. 

I had Frosted Cherry Pop Tarts for breakfast. I had Pop tarts for breakfast because cereal was too hard. I ate almost all of the two tarts and gave about a third of the second one to my dog- Gypsy. I took the dogs out- I think they love the fatigue days because I tend to stand on the deck without constantly telling them to hurry up. If I don't remind them what they're out there to do, they'd just run in circles eating grass and playing till they fall over. After I got them back inside, I went back to bed for a nap. 

I was up for less than 45 minutes before I succumbed to the fatigue. The exhaustion is worse than the pain sometimes. I mean, the pain sucks, don't get me wrong (today's pain, in case you were wondering, is about a five or six), but I can deal with the pain. I can't always stay in bed and nap. Also, I can take pain meds if I have to, but increasing my caffeine intake helps not at all for the crushing exhaustion. 

Consider yourself lucky if you don't have this disease. You know how you get tired at the office or in front of a class or digging that ditch (I don't know what you do for a living)? You yawn and stretch, let out a little groan, maybe stand up and walk around your office... or ditch. You feel a little better and you feel like you can go on. I can't do that. When I stretch, it hurts. Yawning sucks in general because it doesn't help (and I keep doing it now because I keep typing the word "yawn"). And if I get up when I'm this worn down, I'm going to shuffle-walk my ass to bed. 

Well, look at that... this wasn't as short as I expected. I told you to stop cheering about that, but you didn't listen, did you? Yeah, go think about what you've done.