Pahz Lives with Fibro: October 2013

FAKE INSOMNIA! WHOOO-HOOOOOO!!

Fake because it isn't actual insomnia. Real insomnia is a serious pain in the ass and I do not have that problem. What I have is breakthrough pain or- as I say it on Facebook- "failed pain meds". These are the nights when my pain meds don't make me sleepy. The pain is too much for all the pain medication and muscle relaxers. And, because I follow my doctor's orders- I don't take extra. So, every once in a while, I end up staying up till the wee hours of the morning before exhaustion wins.

So, Fake Insomnia.

Let's move on, shall we? Good...

It seems there was an awesome article recently, informing all of us that "Fibromyalgia Solved: A Pathology, not in the Mind". It was a pretty good article. It tells us that this isn't a fake disease and that we're not totally mental. It even describes: "One result is a build-up of lactic acid in muscle and deeper tissue affecting the muscular system and causes pain that can seem to ‘travel’ from areas of the body one day to the next and cause fatigue, commonly reported from victims of fibromyalgia."

LACTIC ACID. How many times have I described my "normal everyday pain" as feeling like I worked out too hard? I even used those very words- LACTIC ACID! That's what your body releases to help you physically cope with stress- be it mental stress or physical stress. You would know it as that painful burning feeling you get when you push it TO THE MAX! Or CRANK IT UP! And the ever-popular NO PAIN, NO GAIN!! *roars like the Incredible Hulk* YEAH! LET'S DO THIS!!

No... no... wait. Let's not do that... that hurts. Whew... someone could have really gotten hurt up there in that paragraph. I hope you were lifting with your legs and not your back.

My fake insomnia tonight was caused by "bone crunching pain". I was curled up in bed, in my usual naked-under-fleece-blankets state (let's not forget the ever-sexy wrist braces I wear to bed. Because that is a hot look, I tell you what) and no matter how still I tried to stay, I couldn't reach a point of sleep. I felt as though my bones were being pressed together at the joints. In my shoulders/collar bones mostly.

I've been having a few-days-long flareup and have been meaning to write this blog post for those few days but I've also been busy. Teslacon is coming up next week and I've been using my spare energy to finish sewing the few things I need to sew. I'm not official at Teslacon, but since I know almost everyone there, I'm in my unofficial status of photographer. Meaning I will photograph the living daylights out of my friends and when they're not being fabulous, I'll photograph absolute strangers.

And yesterday- Wait... I mean Thursday. On Thursday, I decided to save my energy because my son asked me to take some photos for him. Well, of course I did. And for that half hour, I got to ignore my pain. And yes, you are right in that heavily-sighed assumption... I'm about to share the photos with you here. But I kind of have to- they're pretty awesome photos. I'm quite proud of them. When I have to make up a print portfolio, some of these are definitely going in that book.

My 365days self-portrait for Thursday. Myself reflected in my son's helmet visor.

253 of 365 part 4: My son is finally in my 365...

This one is my favorite from this quick shoot.

The clouds and sky look pretty cool in his visor.

Sunset and clouds reflected in the visor

He made this one his profile photo on Facebook.

I also stopped on the way home and took a few sunset shots from my usual spot in a parking lot of a school on the edge of town.

Next week, I will have three awesome days to forget about my pain. I'll be garbed up, wearing a camera, and taking photos of those wonderful people doing awesome stuff. And then I'll share it with all of the Internet.

Because that's what I do. And I refuse to let fibrofuckingmyalgia win this fight.

You know how I've described the "hit by a truck" feeling as being more like "thrown from a horse" because I've never been hit by a truck, but I've been thrown from a horse. I've also fallen down the side of a mountain, been swept into an undertow, and wiped out while skiing (I went downhill skiing one time in my life and I was awful at it- yes, I know I grew up in Alaska, but there are other things to do there besides skiing. Besides, I mostly did cross-country skiing when I wasn't cycling). But that's not what this is about.

About a week ago- wait... let me explain first. I've been meaning to write this blog for about a week or so. I don't really remember when I had this realization, but I do remember that it was first thing in the morning. I've been busy the last couple weeks (had a product shoot, then had some dealings with a PR firm about using my photo for something- I don't think they did, I never heard back- and I've had major excitement involving an upcoming renaissance faire- which involved some rapidly-changing emotions) and some of my days sort of ran together. And then things got away from me a bit and of course, some days, I just wanted to lay down and not move a lot.

So, about a week ago... I woke up to the sound of my alarm (which, as you know from my last blog post, is set to a Steam Powered Giraffe song) and turned it off. I promptly fell back to sleep only to have the second alarm go off right on schedule. So, I sat up. Slowly. And I sat there for a few minutes, waiting for my body to choose either "on my feet" or "lay back down". I rubbed my (sore) hand over my face- which felt puffy to me, till I touched it (then it felt normal). I slipped my feet into my old-man slippers (because I can't walk barefoot anymore) and stood up slowly. I made my way into the bathroom where my giant yoga pants and huge "I shoot RAW" T-shirt were waiting and I looked in the mirror. I looked exhausted. I just woke up, how the hell was I exhausted already!?

I was moving slow. I felt awful. I didn't have a headache, but my entire body ached and moving too quickly made me feel woozy. And I was about halfway down the stairs when I realized what this must feel like. This must be what a hangover feels like. I say "must be" because I've never really had a hangover. I wasn't much into drinking- sure, I've been drunk (I've never been fall-down drunk, though), but I've never had a hangover. The last time I was actually drunk would have been Mother's Day weekend in 1997 when my parents took all three of my kids on their camping trip (they went camping every weekend, Dad still does). Hey, I got married young, had kids, drinking seemed like a waste of time and money back then. Anyway, I'd go to bed after drinking and I'd wake up fine. Tired, but never with a real hangover.

Now, I know what you're thinking- "Patty," you say, because that's my name, "You take a lot of pain medication at night, right?"

I do, but I don't feel hungover from that... I've been taking Vicodin for about seven years. I've been taking muscle relaxers for around three years (and I've taken this current dose for about a year). I have days when I wake up and I feel fine. And then I have days like this one we're discussing right now.

Hit by a truck.

Thrown by a horse.

Fallen from a mountain.

Wiped out while skiing.

Having a massive hangover from binge drinking.

The biggest difference from a real hangover to this stupid disease would be the fact that greasy bacon and fried eggs sound great- if someone else cooks them, because dammit, I hurt. I'm not going to stand up there and cook you breakfast too!

But you can relate to that feeling, right? That all-over body pain and feeling of absolute exhaustion... and the feeling of everything around you moving in fast-forward while you move in slow-motion. Why do you guys do that to yourselves? Why would anyone WANT to feel this way on purpose? Sheesh, you guys are crazy.

Today was one of those hangover-feeling mornings. My alarm went off (its a different Steam Powered Giraffe cover song now) and I turned it off. But I sat up. Slowly. Everything in slow motion while the rest of the world moved at normal speed. When I took the dogs out, I found out why I felt like I'd gone to a frat party and won at beer pong. It was foggy, which means it was humid. And humidity is my mortal enemy. My nemesis. Super-villain to my superhero. Magneto to Wolverine. (what? I'm totally Wolverine! I heal so quickly that scar tissue forms in such a way that the doctor had to knock me unconscious and then manually break apart the scar tissue!).

Where was I? Oh, yeah, feeling like crap in the morning. Well, today is the only day I had time to dye my hair. I've been dying my hair for almost two decades. I started going grey at 17 and it annoys me that I'm so grey now. Anyway, Monday and Tuesday were days that I had to run errands and go grocery shopping and all that. (I even went to the fabric store because I have less than a month to somehow sew a skirt for Teslacon). And tomorrow I don't plan on doing anything... except for going to Dairy Queen and buying my own birthday cake, because, dammit, I'm not baking my own birthday cake.

Anyway, I only had today to dye my roots. So I chewed down some Vicodin and dyed my hair. Then I decided to try for a 1920s-style look for my 365days photo. I took around two dozen photos to get nine that I liked. And from that nine, I only shared four on Flickr. I let my Facebook friends choose the one to use for my 365. It wasn't the effect I was going for, but I'm pretty satisfied with the photos in general.

But, I woke up feeling terrible. The Vicodin did very little to help today. I spent most of today feeling like a giant, itchy bruise. All over. My feet feel like there are railroad spikes hammered into them. My skin is itchy- luckily only randomly and not constantly. My hands are burning in pain. All of my large muscles ache and probably some of the small muscles too. I'm having a pretty typical flareup here. And I'm trying to take it easy because I have a ren faire to go to this weekend. (sidenote- my dad stopped by and gave me my birthday present because he's going out of town very early tomorrow morning. He gave me cash- which I wasn't expecting since he paid to have my computer fixed- and said: "Take that to the ren faire and buy something for yourself."). And I was all flare-y and got a little teary over the whole thing.

Drunk people get weepy over stuff too. I feel like fibrofuckingmyalgia is trying to make up for all those years when I was a responsible adult and didn't drink every weekend.

Stupid disease. Stupid pain. Stupid emotions.

And now, to leave this on a lighter note- here is Monday's 365 self-portrait and a collection of similar ones from the previous 365days self-portraits. They're just in random order- no rhyme or reason, just as I found them on my Flickr (meaning I searched for the tag and took them as they came). I love these kinds of photos and someday, I'll do an entire week straight of this style. If you hover your cursor over the photo, you can see the title of the photo.

I hope they make you smile as much as they make me smile. And for the record, when the Disabled Guy saw Monday's 365, he said: "You're just not right in the head, are you?"

No, I am not. But that's what makes me awesome.

Day 229 of year four-