Monday, October 22, 2012

Terrible, awful day.

It started out like any other rough day. I took pain meds at 6 AM. I took some photos, hoping to forget some of the pain. I took some more pain meds around 3 PM.

Didn't help.

Fibro won.

Pain won.

Tears won.

Fibro sucks.

Pain sucks.

Crying sucks.

Vicodin didn't work all day.

Muscle relaxers have done very little this evening.

I'm tired, but I don't think I can sleep.

My muscles hurt. They hurt so bad that I feel like they're being stretched and wound up tight.

My skin itches. My skin feels like its on fire from the inside out but its cool to the touch.

My clothes hurt me wherever they're touching me.

Sounds are bothering me.

I feel extra-sensitive to everything. The TV is annoying me. The dogs wanting me to pet them are bothering me. My hair is even annoying me.

I want to claw my skin off, peel my muscles away from my bones.

Pain won today and I can't even muster humor to deal with it.

Fuck pain. Tomorrow is another day.

Sunday, October 21, 2012

My Self-portrait was a mini-novel or at least a blog post

You all know I do a 365days self-portrait thing over on Flickr. I'm about a hundred days till the end of my third year of taking a photo of myself, every day. Haven't missed a day yet. Anyway...

I was feeling semi-creative today, somewhat inspired by the "Costumes" theme in the weekly Fro Knows Photo weekend assignments. Obviously I'm not going to submit this photo, because it's terrible! I should have taken more time with it or something, I don't know. In fact, as I type this, I already know of a way I could have done it better. Lotta good that does me NOW, but let's move on.

This is a copy/paste of what I wrote in the "description" part of the photo.

I've been living with chronic pain for almost ten years. At least, I think its been almost ten years. I can't remember what it was like to not be in pain somehow. For three years, it was mostly knee pain- well, it was knee pain that hurt the most and muted the other pain.

But, I wake up every day and I lay in bed for a moment. I start at my feet and I flex my muscles- little by little. Feet, calves, thighs, hips... all the way up. It hurts every damn morning, but it hurts in varying degrees. Sometimes, it barely registers, so I get out of bed rather quickly. Some days it hurts so bad that it takes me ten minutes to go from laying in bed to standing on my feet. If you don't think that's a long time, just sit there, time yourself, for ten minutes. Some days the pain is so bad that I have to hold onto things to walk out of my room. The bed, the wall, the dresser, the door frame.

So, every day, with this chronic pain, I have to decide what my day will be like. Will I let the pain win? Will I take pain meds in the daytime to get through it? Will I be sad and desolate (the face in my hand- you can't really see it, but I was trying to be sad) or will I plaster on a smile and have a good day, no matter how much I hurt?

I usually opt for the smile. Some of my 365 photos were "faked" on really bad days. I have a fake smile or my smile is convincing, but you can see it in my eyes. I can fool you- most of you are strangers and don't actually know me. But there are a few out there who can tell. Even with the smile, they know I feel awful.

I try not to let it get me down, but some days are hard. Today was one of those days. I set my alarm for an hour early so I could try and photograph the meteor shower. But, I had a hard time falling asleep and then I had a hard time staying asleep. I ended up sleeping through that alarm and waking up twenty minutes later than I normally would. It was a five minute climb out of bed day.

I took some pain meds and a muscle relaxer when I got downstairs. I was in a crappy mood, too. Just bleh. Everything annoyed me- and I mean everything. The way my clothes felt on my skin, the way my dogs were excited to see me, the comments on Facebook, everything. I took a very short and not-at-all-good nap and felt slightly better. But things still irritated me. The disabled guy was acting mildly jerkish and I snapped at him (granted, he was being a jerk, but he didn't need me snapping at him).

So, I plastered on my smile, put on my boots and took my camera out. I took a bunch of photos along the river and ended up taking a bit of a hike at one point (I ended up sweaty and got mud on my boots). And I got some decent photos.

Most days, I choose that smile. And if I'm in such a bad way that nothing else works, I do a little photographic therapy. I still feel terrible. My resting pain level is about a seven on that one to ten scale. When I go to stand up, my legs are so sore and stiff that I can't start walking right away. And my hip, I can't even describe THAT pain. Its definitely a ten.

But, I'm in a good mood. I got out and took photos and people like them. I read some articles on Cracked that made me laugh. And as I type this, I'm an hour away from taking my next dose of pain meds.

Choose your mask well. And do a better job at Photoshop than I did. :)

My pain meds aren't living up to their name or their titles (I've referred to them on Facebook as "Sir Vicodin" and "Lord Cyclobenzaprine"). I still feel awful and moving around is just terrible. And my damn hip, I sure wish I knew what was causing that to hurt so much. I'm just relieved to know it isn't arthritis and I won't end up needing a hip replacement. Here's the photo from today- Day 251 of my third 365days project:

251 of 365+1 part 3: The masks we wear

Anyway, I did get a whole bunch of good photos today. And, here are a few... if you're on my Facebook, then you're seeing these shots again. Sorry. I drove around to various parks so I could safely park my truck and get out to walk around. When I was almost home, I drove by a dry creek bed that I've always been meaning to stop at and photograph. So, I turned around, parked in a business parking lot (they were closed, it was Sunday) and proceeded to hike over to the creek bed- which was muddy, not dry- and take several photos. I ended up with mud on my boots (as they are intended to get on them) and sweaty from the walking and climbing over and around the creek bed. I really miss hiking. Now, if you click on any of these photos, it'll take you to my Flickr and you can look at any of the photos from today (or, well, ever... since that's where my photos are).

Seagulls at Rock River

Seagulls in flight

Flying seagull

From Armstrong-Eddy Park


From Newark Bridge

Tuesday, October 9, 2012

Well, here's a kink in the garden hose.

I really have no idea what the hell that title means.

October 6th and 7th found me out at the Stronghold Olde English Faire. It wasn't just "cooler weather", it was downright COLD! And oh, boy, was it wonderful! Sure, I was wearing my ineffective cloak and not-period fingerless gloves (I had to keep my fingers free for photo-taking), but the fact that I wasn't dying of heat exhaustion or having a flareup from the humidity was enough for me to love the day.

Till I sat down for any extended period of time and then tried to move. Turns out, this fibro-beast doesn't like the cold weather any more than it likes the hot weather. This whole year has been a disturbing visit into chronic pain hell from whence I have no escape! (did you hear thunder and did my words echo? No? That's it, I'm firing the sound crew, they do nothing!). Luckily, on Saturday, I had the help of an armored escort. He helped me to my feet when I needed help standing up. Would you like to see a photo of him? Of course you would. I took this photo last year (2011) at Bristol. This was actually the day we met.

If not for his hand at times, I wouldn't have been able to stand up. The cold didn't just "settle in my bones", as I heard my elders say numerous times. The cold soaked into my muscles and my bones and set up tents, staged a protest, burned some effigies of what a pain-free existence used to be. The cold marched on the streets and stormed the castle. The cold intercepted the game-winning touchdown and ran it back down the field while my team floundered like so many... uh, flounders on the field.

You get the picture.

I had trouble falling asleep, because the cold made everything tighten up and the muscle relaxers did nothing to help. Sunday at Stronghold, I had my daughter with me and I took pain meds upon arrival at the faire. It helped a little. It was also not as cold as the day before.

So, what I take away from this past ten months...

The weather changing can trigger a flareup.

Humidity can trigger a flareup.

Heat can trigger a flareup.

Cold can trigger a flareup.

Physical activity can trigger a flareup.

A butterfly flapping its wings in New Cumbria can cause a flareup. (I don't even know if that's a real place. Maybe Cumbria isn't all that new, who am I to judge?).

So, basically, I need to live in a pressurized, climate-controlled environment and never move. Never get up and walk around. Never go outside. Never do anything. Never see anyone. Never, never, never, never.

Fuck that noise.

I spent three goddamn years trapped inside my house, inside this stupid body, at the will of a doctor who just wouldn't give me that much-needed consultation letter. I am not locking myself in the house and missing out again. I have no idea what can be done for this- I have a followup appointment on Thursday- but this ridiculous disease is not taking my life from me. I let it take enough from me.

So, I'll muster through. March on. Carry on and keep bitching.

I have another faire this weekend, one I've never been to and I can't wait. By the way, here's a link to the photos from Stronghold Olde English Faire in Oregon, Illinois.