Well Played, Fibro, well played...

*slow clap*

I've been procrastinating. I've put off writing this blog for almost a whole week. Lack of motivation, exhaustion, pain, stress... take your pick. On Monday, I procrastinated writing this by going to the store. And we all know how I hate going to the store.

I am a goddess when it comes to procrastination. And the weird thing about that is that when I used to do it, I would suddenly become more creative or become inspired. I had a deadline for homework or something and if I waited to the day before it was due, it would end up being some of my best work. I was even late on a photography assignment. And the teacher had a policy- if you were late, she took points off per day that you were late. I handed in my assignment on panning two days late. I should have had an entire letter grade taken off for that. She gave me an A anyway, because "it was too good for me to give it a B..." her words to me.

My body has decided that since I won't write a blog post in the daytime, it would help me get it out in the nighttime.
Well played, Fibrofuckingmyalgia, well played...

So, one would think that procrastinating this blog post for a week would result in something fantastic. Nope. Not so much. What we are getting, though, is a blog post brought to us by Insomnia Lite. And did I even start this when I got out of my wide-awake bed? No. I went to Facebook where I replied to some posts and then bitched about the fake insomnia. And then I read a really cool Buzzfeed article about one of the jousters I know.
AND THEN I WROTE MY BLOG POST   Nope! Not even then! I opened Photoshop and dug out my backup hard drive to find some photos from last year's Janesville Ren Faire to add text saying: "Soon". But then I stopped myself, because c'mon, I needed to type this up, right?

Here I am, having the all-over-itchy-body thing. And don't get me started on the muscle thing. I'm having the pain, of course. But not just pain, I have an all-over tightness in my muscles too. I feel like I need a good stretch.

"Why don't you just take a moment and stretch things? You used to be athletic, right? You know how to stretch properly..." 

YOU WOULD THINK SO, WOULDN'T YOU?!

As I lay in my bed (Laid? Lied? Lain? Slain?), itching and awake and achy, I decided to do some stretching to ease that muscle tightness. It didn't go exactly as planned... my quad- that's that big-ass muscle in the back of the thigh, right? You know, right under the ass? That big-ass muscle on the back of my thigh decided to remind me it existed by getting a cramp of Charlie Horse proportions. So... that. I started to stretch my arms and shoulders, but I felt that sharp tightening, so I stopped before it became a full-blown Armlie Horse.

To add to this general discomfort, my desk chair broke a few weeks ago (it had a good and busy life, supporting my ass- through the knee replacement and everything, so it was at least five years old). So I took my dad's. I mean, c'mon, he's not using it. Apparently, his ghost was, because it lasted a week in my house before it broke. (I have no idea how old his chair was). So, the Ghost of Dad decided that he didn't like me taking his chair and it broke... it literally broke beyond use the day I ordered a new office chair online (it should be here Friday!). I'm sitting on a hard metal folding chair with a sofa throw pillow on it. I would have thought with an ass as large as mine that I'd have a little built-in padding. Turns out, that's just for show. I'm sitting up so perfectly straight that my 8th grade typing teacher would be proud. (I'm also typing without looking at my hands, because that's how I was taught and my keyboard is on a little shelf under the top of my desk- good thing schools taught girls how to type in the early 80s, right?).

Oh, I do have one good thing to say... remember how excited I was about having that shot in my foot? Well, less than a week later, it was back to its usual level of Railroad Spike Hammering pain. I waited another few weeks, because I wasn't sure how long it should take to go into full effect. The last time I had it done was while I was under anesthesia for my total knee replacement and I was on the fabulous pain medication known as Oxycontin. I even had Morphine the day after the surgery. That was a fun drug. As the nurse put the needle into my IV tube, I was writhing in pain and as she pressed the syringe plunger (that's what that thing is called, right?), I asked: "How long will it be before this takes effect?" Except I said it more like this: "How long till ThIs TaKeSSssss uhhhhffff-ehhhcktuh?" And then I woke up four hours later.

So you can see that I wasn't sure how long that shot would take to work. I went back after four weeks and the doctor discussed my options with me. And so as not to bore you to bits again, I covered that in a blog post on Conversations with the Disabled Guy. To summarize- my choices were "another shot and hope for the best" or surgery. And the surgery needs 6 weeks to recover. And I won't have that kind of time till November. Just a reminder- my fibro made my knee replacement recovery last a year and a half instead of just a year. So quite obviously, I can't count on my body going along with that 6-week timeline.

We opted for the "another shot and hope for the best" option. And good news- it worked this time. Now the only pain I have to deal with is the fibro (and the tendinitis in my feet and shoulder, and the arthritis in my hands and wrist... but hey, that's okay!).

I'm sitting here, in the middle of the night, on a horrible metal folding chair and sofa pillow, listening to Flo Rida, and itching like I've got some kind of medieval disease.

But at least my left foot doesn't hurt.

And we've got 39 days till the Janesville Renaissance Faire.

Bring it.

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.

What does this feel like?

I get asked that more than I can remember. Or maybe I only hear it in my mind. Who knows... But, you're here and reading this now, so let's discuss how fibrofuckingmyalgia feels. And I know that's what I whine about on this blog a lot. But in a general sense, how does this stupid thing feel...

I've compared it to being thrown from a horse, hit by a truck (I've never actually been hit by a truck, except when I was in another vehicle, which isn't the same thing), and more often than not, I compare the overall feeling of pain and tightness to that of a heavy workout. Like, you know when you work out after not working out? And the next day, your muscles are tired and they're sore? But it feels good, sort of. In an accomplished way. Fibro is a lot like that, without the accomplishment.

Last week, I was forced to change my description.  I had a product gig (in case you don't know, I take product photos for a local clothing designer, for their website/catalog). And I had twelve products to shoot (this time, sandals). Twelve sandals, six photos each (front, back, side, side, three-quarter front, and top). And for each photo, I had to adjust the sandal... straps, buckles... And these sandals are NICE. The leather is so soft that it doesn't stand up on its own for a photo. I have to use tricks and things to prop up bits here and there.

So, there I was, standing, then sitting to take the photo, then standing, then sitting, then standing, then sitting (I have a folding table that I take my product photos on, about the height of a card table, but half as wide). For more than seventy-two photos (because I kept seventy-two, I probably took 80 or more). Later that evening, every time I moved, my thigh muscles screamed out in pain.

It felt GOOD. The pain was that post-workout pain and it really did feel good. I poked at my thigh. Ouch. Ha! Poke... poke... I'd flex my leg muscles just to make that pain happen. It felt that good.

The next morning? Oh, here we are... back to the fibro pain. And yet, that pain in my thighs still felt like post-workout pain. (I really do miss working out). So, fibrofuckingmyalgia feels nothing like workout pain. And it doesn't feel like: "...an all-over feeling of tightness..." that the TV drug ads tell us it feels like as the physically fit woman reaches over and gently squeezes her shoulder.

Yes, there is tightness. But it isn't mild. It feels as though your muscles are being pulled apart. Pulled  slowly away from the joints. A steady, slow, agonizing tightly-pulled feeling. And you know that feeling you get after you, say, hold your two-year-old toddler too long? You're standing, he's bored, you pick him up but then end up holding him for too long? That tired-muscle feeling... happens all the time. Every day. That's what I felt just now when I paused in my typing to pick up a six pound Chihuahua who wanted some attention because that's what six pound Chis do (want attention). Six pounds and I felt like I'd been holding a toddler while waiting in a slow line at the DMV.

The pain isn't just all-over and tight. There are "hot spots". I've mentioned a few of mine before. My hip muscle. It used to be my right one. Now the left one hurts, but not the right one. And my foot and ankle. I spent almost six months with a pain in my ankle and into my foot that felt like a severe sprain. Every day. My hands from time to time cause me a lot of pain. My shoulder joint- right side. I have tendinitis in my shoulders, so it usually feels like a terrible tendinitis flareup.

And, of course, the skin. Itchy, itchy skin. But not a normal itch, more like a "oh, I've burst into flames after stumbling into an itchy convention" kind of itch. Under the skin, painful, feels hot. I've wanted to drag a vegetable peeler across my skin. How much worse could it feel?

Today was about a six or seven on the pain scale. I managed not to fall asleep for no reason, so that's good. But gravity has been especially harsh lately and because the weather is changing (again, still, I can't keep track), I'm treated to the fire skin.

That's what it feels like. Sometimes. Other times, it is much worse. And even other times, it is much better. But mostly, fibrofuckingmyalgia is full of suck and it has nothing good and fun. Well, except me... because I'm awesome.

I'm "lucky"... if you can call anything "lucky"

I'm lucky in that I don't have depression with my fibro. Turns out that depression and fibro go together like... well, like two things that go together well.

But I'm lucky. I don't have a problem with depression in the actual sense. I'll have a time when I don't feel all that great. Maybe even just have a bad day, but I almost always wake up the next morning feeling fine. And if you know me like I pretend you do, then you know I can also get through almost anything with the use of humor.

Those days, though. They suck. I can't imagine how people live like this on a daily basis. I wake up every morning with the outlook that it'll be a good day and usually it is good. You know how I go a couple weeks without posting a blog or whatever? That's because nothing is happening. At least, nothing worth noting. My pain has been fluctuating but not wildly like it was these last few months. I did have a moment of clarity and I can't remember if I mentioned it or not and frankly I'm too tired and in a crappy mood and don't feel like looking it up to see if I did  mention it or not.

Someone asked me on Facebook, during one of those bad pain days, how it is that I can go all day at the renaissance faire. All day walking/standing/talking/being around people. It isn't a secret. I'm chewing down pain meds like I'm Doctor House and I'm in the thirty-seventh minute of an episode (you know, shortly before he gets his epiphany that leads to saving the patient). On a typical ren faire day, I'll take three Vicodin and one muscle relaxer between ten AM and noon. Then at 530 or 6 PM, I take two or three more Vicodin. I keep a fairly steady level of pain meds in my blood at the ren faire. Or at least I try to anyway.

Well, today's pain isn't all that special. Just the usual kind of pain. I was sitting in the living room for a while today (catching up on DVR shows from last week) and every time a dog stepped on me, it was like a fiery railroad spike had been jammed into my muscle. That's one thing about small dogs I'm not thrilled with- how pointy their goddamn feet are.

No, today's problem is mental. I feel absolutely useless. I contribute nothing to this household. I don't make any money. My "photography business" isn't a business so much as it's just me taking photos. And that isn't really so much of an issue, because while I'm not making money, things are still happening in that area and it could lead to making money. You gotta work to get there, it doesn't just fall into your lap.

But it doesn't help this feeling. I don't feel like I'm important to anyone's life. I feel like I've had a mirror held up to me and I see myself as I always see myself... and now other people see it too. I feel like I've been faking everything and now someone has discovered my secret and I'm terrified others see it now too. "Oh, she's not an adult, we can't take her seriously." ... "You're not an artist, we can't take you seriously." ... "You have nothing to offer us, you don't matter."

Deep down, I know that when I wake up in the morning, I'll be fine. Deep down, I know I'm fine. But this feeling right now, it sucks. I almost prefer the physical pain over this crap.  I can't wait till I fall asleep tonight. Right now, I don't even care about the doctor appointment tomorrow. Normally, I'd be complaining my way through the fasting lab. But right now, I just want today to be over so I can get on to tomorrow. Tomorrow, where I know I'll feel better.